Holding onto Hope

Developmental Check and Preschool options

2012-02-20T13:20:00.000+08:00

We were meant to have Maddy's 18 month developmental check up two weeks ago but had to reschedule as she was sick. We went this morning and had a VERY thorough check-up - we were at the hospital for two hours in total!

Here is a quick summary:

Maddy's height is 64cm (25 inches) and weight is 8.7kg (19lb)

Gross motor development is at around 14-15 months, also fine motor development is around the same

Speech is around 8 months.

Nothing really unexpected there - if I'd been asked to describe her progress, I would have said around the same. Her gross and fine motor development is of course delayed due to the physical impairments of her dwarfism. BUT she really is doing brilliantly, given her limitations. The doctor (neurologist) sees no cause for concern and was very impressed with how innovative she is. Maddy knows what she wants to do and finds a way to do it, even if it is not the conventional way.

Her speech has for a long time been my area of main concern, but speaking to the doctor today really helped calm a lot of my fears. She is confident that once the hearing issues are addressed, Maddy will catch up.

The doctor also recommended that for preschool, Maddy would be best suited for a "special needs kindergarten" that can provide for her physical needs and offer her all the therapy that she needs, and even more! Such places are difficult to get into here in Hong Kong and we have already been on the waiting list for about a year. We probably will finally get a place within another 6-12 months.

In the meantime, Maddy recently started at playgroup - a parent-assisted class that she goes to three mornings a week. This will lead into nursery when she is two years old. Usually, at this age, children start going by themselves without a parent but the school has already told me that unless Maddy can be "independent in the classroom", she will need for one of us to accompany her.

What she needs to be able to do is:

- move around the classroom safely

- get an activity tray from the shelves

- carry it back to the table

- seat herself at the table

- clean up after she is finished, returning the tray to the shelves.

It doesn't sound like a lot but it seems miles away from where Maddy is now. So before September, we will either need to figure out a way for Maddy to do all of the above (possibly by using a little cart to help her), or one of us will need to go with her.

It's hard to know whether at this age, it is better to fight and push and work hard so that Maddy can go to school with her typically-developing peers (and probably need to schedule the necessary therapy on the side), or whether it is better for Maddy to be in an environment that is specifically focused on helping her with her physical and speech issues, giving her all the therapy that she could need (but she would be in a class with kids with developmental delays - most of them cognitively delayed). I see huge benefits in both options, but I know that the time is coming when we will need to choose between the two...

Good to go :)

2012-02-13T22:25:00.000+08:00

Today, we had yet another pre-op day at the hospital. It got off to a fantastic start as I noticed, while walking to the admissions department, that the hospital's Starbucks was closing :( I have frequented that Starbucks more times than I could count over the past four years. Both my girls were born at this hospital, I've had numerous doctors appointments there - both prenatal check ups for myself and various other appointments for Maddy. Maddy spent four months in NICU at this hospital and has since been admitted there three times for different things. AND the only food I will eat at the hospital is from Starbucks. Hospital food is awful and the cafeteria is not much better. I'm so sad to see Starbucks go :( (I wish that Starbucks was reimbursing me for saying all that, but they are not. My grief is real and not paid for).

We got to the hospital at 10am and I didn't expect to see a doctor until 4. I must have been optimistic because the first of three doctors (anesthetist) showed up at 6pm, the second (ENT) at 6:30 and the third (the plastic surgeon who will perform the cleft surgery) at close to 7pm. We didn't make it home until nearly 8!!

All in all though, it was a productive day. The doctors agree that since Maddy's spine is clear, she is now ready for surgery. She did have a bit of a cold last week and still has a residual cough and they want to wait 2-3 weeks until that is completely clear, but they will be scheduling surgery soon. The earliest will probably still be a month away, but it should be done within two months. They will only give us around 3-7 days notice and the surgery could theoretically be cancelled at the last moment if PICU is full (Maddy is expected to need PICU after the surgery for a day or two).

There will be a few things done in this surgery. First of all, they will do a proper airway assessment. Despite all of Maddy's airway issues, she has never had a formal bronchoscopy. They will do this when she goes in for surgery. The second thing they will do (as long as there is no complications with the bronchoscopy) is the cleft repair. The third thing is to place tubes in the ears to drain the fluid, if it is necessary (they will decide this the day before surgery). And last of all, they will do the ABR hearing test to determine whether Maddy also needs hearing aids.

Please keep us in your prayers over the next month or two as we wait for surgery, that Maddy will get over this cough and be healthy when the time comes. Also pray that we can get one of the earlier slots as we'd really like this behind us - and we also want to figure out Maddy's hearing and speech issues sooner rather than later. Pray that the surgery will be successful and that Maddy handles it well and recovers quickly from it. And pray for the rest of us as we support Maddy through her surgery, especially as we have to do it without Starbucks!!

Here we go again...

2012-02-10T11:11:00.000+08:00

We just got back from our cleft appointment and the short story is that we need to admit to the hospital again on Monday morning for more pre-operative checks. It will be a pain in the butt, admitting is never fun. We have to be there at 10am, and I bet we won't see a doctor until after 4pm at the very earliest. I would love to be surprised but will not be holding my breath.

Since Maddy's spine is now clear, the one last hurdle to jump before surgery is her airway issues. In this hospital visit, we will meet with both the anesthetist and the ENT to discuss these issues. She may need a bronchoscopy before surgery, or they may clear her for surgery on Monday. I'm not sure which. If she is good to go, surgery might be within the next month. If she needs a bronchoscopy first, it will probably delay surgery by another few weeks, assuming that everything is clear.

So we just have the weekend to wait and wonder - it also happens to be our wedding anniversary, and we are having our first ever night away from the kids. I'm going to be trying hard not to think about it!! There's nothing that I can do about it anyway, and besides, I'm sure I'll have plenty of time to think on Monday when I'm hanging around at the hospital...

Communicating

2012-02-07T14:32:00.000+08:00

Maybe it's ironic that I am writing about this after my last post in which I wrote about my worries about Maddy's speech. But even though Maddy is still not speaking, in the last couple of weeks, she has made tremendous progress at communicating.

For the last few months, Maddy has been a bit of a handful - she knows what she wants but has not been able to let us know, so instead she will whine, or cry, or have an all-out tantrum. I've thought for a while that it is probably due to frustration, and now I am sure of it.

In the past couple of weeks, Maddy has been getting better and better at answering yes/no questions by nodding or shaking her head. There are some questions that she definitely understands - "Do you want to go to bed?" "Are you hungry?" "Do you want your dummy?" (dummy is what we call her pacifier). Others we have to gesture - "Do you want this? (show her one item at a time)". Lately, when she starts to whine, we immediately start asking her what she wants and she stops whining and answers "yes" or "no" (as long as we don't take too long to guess!!). This has made a HUGE difference in the number of tantrums in our house, and we are all much happier for it!!

It is amazing to see our little girl wanting to communicate and getting better and better at it. It takes a lot of practice and patience to understand her, but it is so worth it. Like everything else, when Maddy can't do something the conventional way, she figures out something else that works for her and she gets the job done. And even though Maddy's speech may be behind, I'm glad that we're finally starting to understand how to communicate with her :)

Worry

2012-02-02T15:08:00.000+08:00

The past couple of weeks, I've been a bit stressed and worried - mainly about the whole surgery situation. Usually, I'm not the kind of person who really gets too worried by things, but this has been really getting under my skin. I AM the kind of person who a) hates waiting, and b) hates not knowing - so those are probably contributing factors, but I think the main thing is that I really want for Maddy to be able to talk.

Maddy is now 18 months old (hasn't the time flown?) and she really doesn't talk at all. Her babbling is still mostly grunting and squealing. Most of that, I believe, is due to hearing issues. Issues that cannot be resolved until after the surgery. I don't even know how much she understands of what we say - many things I think she mainly understands by the gestures or by what we are doing at the time.

I know that you can't compare kids, each child is an individual, but Lana at the same age had a massive vocabulary. Probably over 300 words. She knew all her body parts, including random parts like "elbow" and "ankle". She was already saying short sentences like "More water please". That is very advanced for 18 months so I don't expect for Maddy to do the same, but to go from that experience with our first child, to still non-verbal with our second is hard.

After Maddy's surgery, her hearing issues can properly be addressed. She may still need hearing aids, but we can't test her hearing properly until after she has ear tubes put in to fix the fluid issues. I'm hoping that we will see improvement in her speech right away - and many families do. But I also know that it may not be a magic solution and it may take much time and effort for her to speak at her age level.

Hopefully next week, we will have a few more answers about things. On Monday, we have a development check up and I am going to be asking a million questions about speech development there. Until now, I haven't talked to any professional about it and I really want/need to. On Friday, we have our next cleft appointment and hopefully we will find out what we will do next, now that Maddy's cervical spine has been cleared for surgery. I'm not going to be holding my breath for it, but hopefully we can proceed soon.

The other day I was worried about all these issues, and Lana and Maddy were playing together and just laughing and laughing. I couldn't help but think to myself - Maddy is a happy kid. She loves her sister, lights up when her daddy gets home from work, and follows me around the house wanting cuddles. That's more important than the issues that we're facing at the moment. In ten years, will any of this matter? Probably not. Will a few months' delay in the surgery make a huge difference in her speech in the future? Maybe we'll have to work a little harder in the short term, but probably the end result will be the same. I'm trying to remind myself of these things when I get myself worked up about it all... There's no sense in worrying about things I can't change anyway.

How having a child with a disability has changed me

2012-01-25T23:13:00.000+08:00

When I first found out that my daughter would have a disability, I knew that it would change my life. What I did not know was the extent of how deep some of those changes would be.

At times, some of these changes are negative things. When people complain about relatively minor issues, I can be less tolerant than I used to be. Particularly when they are complaining about issues related to parenting or medical stuff. I try to not let it get to me, but I often think "If only you knew how minor that issue is compared to others..." (and by others, I don't mean me - I know that there are MANY people in MUCH more difficult situations than mine. I met a lady last week with a 14 month old who has been inpatient for more than 12 of those 14 months. And I still get upset thinking about our 4 month NICU stay! I, too, need to put my issues into perspective...)

I think that as a whole though, the changes that I've had as largely positive. One of the major changes is that I am a lot more aware of others with disabilities. I used to avert my gaze or not even think about such issues, but I remember even being pregnant with Maddy and seeing people with disabilities in the street. I would look at them and smile and wonder how life has treated them. I wouldn't wonder so much "what is wrong with him?" but instead, I would wonder how they had been treated by peers, what services they were offered, whether they could live independently, whether they had been taken advantage of or discriminated against because of their disability. I would look at their parents or carers and wonder how their lives had changed, whether they had come to accept the disability, what kinds of joys and heartaches they might have had because of their child's disability.

Multiple times over the past two years, I have had interactions (or sometimes just observations) with people who had a disability that have reduced me to tears. I wrote about one such event that happened in Disneyland here.

Another time, I was at the hospital with Maddy and was looking out the window into the car park. I saw a man pushing a lady in a wheelchair. I presume she was his wife. As they got to the high wall, the man picked his wife out of the chair and held her high to see the gorgeous view that she couldn't see while seated. It wasn't until he put her down that I noticed that both her legs had been amputated at the knee. Witnessing such a simple gesture and thinking of the marriage vows that say "in sickness and in health" had me sniffling and wiping away tears in the crowded waiting room.

In addition to increased empathy, my knowledge about different disabilities has also increased. I read many blogs and one major "genre" (if you could call it that) that I read is special needs parenting. I find that I have so much in common with many of them, even though the diagnoses of our children may be drastically different. In reading their stories, I also learn a bit about a wide range of different disabilities, including cerebral palsy and Down syndrome.

NICU still gets me too - one of my friends has a daughter who is now about 7. She was born at 28 weeks gestation and spent months in NICU before coming home. Before Maddy was born, I saw those pictures and thought "Wow, she was tiny!" and not much more than that. After Maddy was born, I saw the same pictures and cried because then, I could feel it. I hear of friends who have babies in NICU and the same thing happens - I am so moved by their story because I've walked that road. The same for people who have troubles in their pregnancy - people who have poor prenatal diagnosis or who are unsure of the health of their babies.

I never expected that having Maddy would change me in all of these ways, but it has. And I'm glad that it has...

Spinal appointment

2012-01-18T17:04:00.000+08:00

Today, Maddy had an appointment with the orthopedic spinal specialists. It is our first time meeting with them - in the past, we have only met with pediatric orthopedic doctors. Our visit was arranged in response to our hospital stay last week, checking over the x-rays on her neck to see if her neck is safe for anesthesia.

I'm really glad that this appointment was scheduled because the whole suggestion of the MRI was bugging me, and I hadn't had a chance to talk with any of the orthopedic doctors yet. IF the doctors really did suspect that Maddy had a neck instability, then they would have been massively negligent in not providing her with a neck brace and instructing us to take extra care with her neck. The kinds of falls that she does on a weekly basis could have resulted in damage to her spinal cord. But IF they did NOT suspect that she had a neck instability, then the MRI would be an unnecessary waste of hospital resources and my time - plus Maddy would need a cannula, something which is very difficult and painful for her.

When we were at the hospital last week, we were not able to talk with the orthopedic doctor directly, but I did read his notes that said that her neck was stable and there was no orthopedic reason not to proceed with the surgery. It was frustrating then to hear that the doctors decided to request an MRI.

At today's appointment, we saw two spinal orthopedic specialists who both agree that Maddy's cervical spine is very stable and there is not even the slightest hint of an instability on her x-rays. As such, they recommend against having an MRI and have "officially" said that orthopedically, surgery should be safe for Maddy.

In addition, they confirmed that her neck is kyphosis-free (something which can be of major concern for diastrophic dwarfs). They also looked at the "kink" in Maddy's thoracic spine and have agreed that their team will follow that issue closely in case it develops into scoliosis and requires surgery. Scoliosis is a concern with DD and so we are praying that Maddy's does not progress. Fixing it would be a very major and risky surgery - one that we would like to avoid if possible.

So where to from here? I suspect that I probably won't hear anything until our next cleft appointment on February 10. After that, the doctors may want to do some further testing on Maddy's airways before proceeding with the surgery. I guess like always, we will wait and see.

Climbing

2012-01-15T22:23:00.000+08:00

Maddy never ceases to amaze me with the way that she gets around. She is still mainly scooting around on her bottom, or cruising around the furniture - but in addition to that, she has decided that she wants to climb. She loves steps and will give everything ago, even if the step is far too big for her. She even tries to climb out of the bath!!

When we were in Australia at my parents' house, they had a little step that was ideal for her, with a couple of boxes conveniently placed next to it so she could steady herself as she climbed up and down over and over again. I wish I'd taken a video of it - it was one of her favourite places to play.

Yesterday, we were at an indoor playroom nearby and there was a step that Maddy kept climbing over and over again. Here's a quick video so that you can see her in action :)

Hospital - third and final day

2012-01-11T20:45:00.000+08:00

This morning, we were back up at the hospital for x-rays of Maddy's neck. Maddy's neck has been of concern throughout her life and is rather complicated - it was first the Hong Kong geneticist who suggested that there may be an instability, and since then it has been assumed and her neck has always been treated carefully, as though a dislocation could occur easily, doing damage to the spinal cord resulting in "paralysis or instant death" as one doctor kindly put it.

Now these issues have not ever been fully examined or agreed upon. When Maddy was in NICU, the orthopedic doctors wanted to do an MRI with neck flexion and extension, but at the time, the concerns with her airway meant that the MRI was never done. I wrote back then:

My second frustration at the moment is that the doctors are at a headlock as to who is going to do the next tests on Maddy. She needs two things assessed - her airways and her cervical spine. The ENT wants to do the endoscopy to see her airways, and the orthopedic doctors want to do an MRI to assess her cervical spine. For both procedures, she will need to be sedated by the anesthetist. The ENT is refusing to do the endoscopy until the orthopedic doctors assess the spine, the orthopedic doctors are refusing to do the MRI unless Maddy is sedated, and the anesthetist is refusing to sedate Maddy until she knows the state of Maddy's airways and the results of the endoscopy. So no one wants to make the first step there.

When Prof Sillence visited Maddy, he doubted that such instability was of great concern, and since then the orthopedic doctors have all told me that according to x-rays, Maddy's neck is in good alignment and is of no concern. So even after her airways were more stable, it was never considered necessary to have the MRI of her spine performed.

Today the x-rays of Maddy's neck showed the same - the orthopedic doctor snuck in and out and I didn't get to talk with him, but I had a covert look at the notes he wrote in Maddy's file (the nurses don't like you doing that, they prefer you to talk with the doctors directly). He wrote something along the lines of "neck is stable and well aligned, no contraindication for OT". Without talking to any doctors, I was expecting that such a report surely meant an all clear on the neck issues.

This afternoon, however, when the plastic surgeon came around, that was not what he said. He told me that after speaking with the team (being ENT, anesthetist and ortho), they want to do the MRI on Maddy's neck to more accurately assess whether or not there are issues there before proceeding with surgery. After that, we may also need to further assess the airways as well before surgery.

The "good news" is that the team are really assessing everything well so that they do not run into any problems with the surgery. The "bad" thing is that this slows the whole process down. On Monday, I was thinking that surgery might be in the next few weeks - but now, we won't even get an MRI appointment until 2-4 weeks from now, and then they may need to do further procedures before surgery, all of which require us to be admitted to the hospital again. My current guess as to when surgery might be is possibly between 3-6 months away.

I was a bit upset at the hospital this afternoon and had a bit of a cry. I so badly just want this all to be over - I wish we could just proceed and get it over and done with instead of having to jump through all these hoops. I really don't like hospitals - and get particularly frustrated with the Hong Kong system. Not that I have much experience elsewhere...

I guess at least we're moving forward though. Slowly - but safely. And I should be happy about that...

Hospital - day 2

2012-01-10T23:15:00.000+08:00

Today, we had to head back to the hospital. Yesterday, the only doctor that we saw was the plastic surgeon who came shortly before 6pm. Today, we needed to see the ENT and anesthetist to confirm that they are comfortable with securing Maddy's airway and anesthetising her for surgery.

We had a routine orthopedic appointment in the morning so we went over to the hospital at noon. For these visits, we are actually in-patient (ie, Maddy has been admitted to the hospital) as that is the only way to have an appointment with the anesthetist - they don't run outpatient clinics.

We didn't actually see the ENT, but she is familiar with Maddy's case as we have seen her many times as outpatient. She consulted directly with the plastic surgeon. The anesthetist came around 5:45pm and in summary, "she would be difficult to anesthetise, but if the surgery is important, we will do it".

One issue that did come up was the supposed neck instability issues that the doctors were concerned about when Maddy was first born. The geneticist was the one who mentioned it, and the orthopedic doctors were less sure about whether or not such an instability existed. Since Maddy was discharged, her orthopedic doctors have not been concerned about the issue and say that her cervical spine looks fine. Today in my our morning orthopedic appointment, I brought the issue up knowing that it may be important to formally address before surgery. As our orthopedic doctor practices out of a different hospital to the one that Maddy's cleft surgery will be at, he suggested we repeat the x-rays at her surgery hospital and get a formal assessment through them instead.

So after two days of sitting around the hospital mostly waiting for doctors to show up just before 6pm, we are back there again tomorrow. We will first get the x-rays of Maddy's cervical spine and then wait for the orthopedic doctor's opinion on it. Hopefully all is stable there, as that would simplify things. If it all is stable, I wouldn't be surprised if they then ordered a bronchoscopy to formally assess the airways, which may be another day in the hospital.

The last two days have been frustratingly slow and boring for me and Maddy - the entire time, we are just hanging around, waiting for a doctor to show up. It's hard for Maddy to nap there, and when she does fall asleep, she is woken by loud noises. We have to be there the entire time as the doctors don't come at scheduled times - just when they can fit it in around their other duties. They come once a day, and if we are not there then, we have to wait until the following day. By the time that they came these past two days, it was the end of the day, so anything further that we needed to do must happen the following day. Thankfully Maddy has had home-leave each evening so we can come home, eat dinner and sleep in our own beds.

We still do not know when surgery will be, or even IF it will be soon. There are a lot of issues and now doctors from four different disciplines (plastic, ENT, anesthetist and orthopedic) need to sit down and agree on what is best. Whether it is worth the risk to do the surgery now. I was thinking that surgery may be in the next week or two but after today, I think it may take that long for them to decide IF they will be doing the surgery.

Please keep us in your thoughts and prayers over the next few days - we really appreciate it :)

Someone changed the sign on Maddy's bed ;)

Maybe Surgery?

2012-01-09T20:44:00.000+08:00

Since our cleft appointment in November, we have known that Maddy's cleft would be surgically repaired soon. Having our trip back to Australia for Christmas probably delayed and complicated the process a little.

When I heard at the end of November that the surgery would be scheduled for January, I assumed that they would contact me within the next couple of weeks, well before we left for Australia. When it was a week before our departure date, I began to worry, knowing that they couldn't contact me on my mobile phone while we were overseas. I tried calling the hospital but couldn't get through to anyone, and so as a last resort, I emailed Maddy's NICU pediatrician, the only doctor who I have direct contact details for. He kindly looked into the issue for me.

On the day that left Hong Kong, he responded, much to my disappointment "The chief surgeon preferred to wait until Maddy's next follow up (Feb 2012) to schedule the surgery, not before that. They would usually contact the patient one week beforehand, and he said there is no urgency for Maddy."

I was disappointed to hear of the delay as the private ENT that we saw told us that for the sake of Maddy's hearing, ear tubes should be placed ASAP, and when we had our most recent cleft appointment, the doctors there agreed with his assessment and decided that it was in Maddy's best interest to perform the surgery (which would be mainly for the cleft palate, but ear tubes would be placed in the same surgery) as soon as possible. I felt that their position had changed, and I was not consulted or even informed.

I do believe that Maddy has some hearing loss associated with fluid in her ears which cannot be corrected until after this surgery. Her speech is delayed, and this age is so important to language development. If Maddy's hearing and associated speech issues are addressed now, she can still catch up. Every month that the surgery is delayed increases how much catching up she will need to do. (Maybe I'm being overly paranoid about this issue, I don't know. This is a major concern for me, however it does not seem to be a major concern for the doctors...)

I expressed my disappointment to Maddy's pediatrician (who has nothing to do with the cleft team) and asked him if he could provide me with contact details of the chief surgeon so I could discuss the issues with them directly. He told me he could only provide me with those details with the consent of the chief surgeon. We exchanged a few emails, but I never heard back from the last one before Christmas (possibly he was on holidays, I don't know the reason)...

Anyway - last Friday afternoon, I was out with some friends and had a missed call on my phone. They left a rather long message, all in Chinese, and while I couldn't understand the entire message, I knew that it was the hospital scheduling an appointment for Maddy. I had a gut feeling that it was about surgery, but had to wait for Bernard to get home so he could translate the message for me.

When he got home, all that the message said was that we had an appointment with a particular doctor (of which the specialty was not mentioned) at 9am on Monday morning, and if we had any questions, we could call a certain number within business hours. Too bad that by that time, there were no more "business hours" before our appointment!!

I showed up at the appointed place and time this morning to find out that Maddy was being admitted to the surgical ward for her preoperative assessment. And so it is currently 4:20pm, we have been hanging around the hospital for nearly 8 hours and have yet to see a doctor. We're both cranky and tired, but hopefully we will find out soon when surgery will be. As annoyed as I am about the whole situation, I want the surgery to be done ASAP so I'm tolerating the inconvenience...

_______________

I wrote the above at the hospital but couldn't post it due to not having wireless there. Instead of editing the last paragraph (I'm tired after a huge day!), I'm just adding onto the end here...

The cleft doctor ended up coming around at 5:45, by which time we had been at the hospital for nine hours!! The doctor we saw was not the one we had an appointment with - the one we had an appointment with was on leave today, presumably sick. I was annoyed about having to wait the entire day to see him - I might as well have shown up to the hospital at 5 instead of 9. As far as cleft is concerned, they are ready to proceed with the surgery provided that they get the OK from both ENT and anesthesiology.

Tomorrow morning, we have our next orthopedic appointment and physio at another hospital, and then I have to go back to the hospital we were at today to see ENT and anesthesiology. The concern there is again with Maddy's airways being small, she is more risky to intubate - and she needs to be intubated for surgery. If the ENT and anesthetist are convinced that she can safely be anesthetised, then we will proceed with the surgery. We will only have maybe one week's notice on the surgery date, but they need to book a PICU bed for Maddy, so if PICU happens to be full on the surgery date, Maddy's surgery will be cancelled at the last minute.

All in all, it looks like surgery will be in the next few weeks, pending approval from the other doctors. We won't have much notice and will need to be prepared for it to be possibly cancelled at the last minute. Kind of annoying, but I understand why it's done like that...

I can't wait for the surgery to be over, I think that I'm the most tense (with regard to Maddy's health) than I have been since the NICU days. Hospital is not fun at all...

(the sign they made for Maddy cracked me up ;) )

Merry Christmas and a Happy new year!

2012-01-01T18:05:00.001+08:00

I have been a bit slack with the blog this holiday season - we are spending time with family in Australia. It has been great (and much needed) to get away for a couple of weeks and to spend time with some of our dearest friends and family. I have heaps that I want to write about - firstly, Maddy's surgery may not be until February or March (a bit frustrated, but such is life), secondly, I want to do a looking back on 2011 post, and there's a few other things that have been on my mind for a while...

For now though, I just wanted to take a few minutes to wish you all well and to share some pictures from our trip. Here you go! (sorry, I can't figure out how to rotate the pictures on my phone!)

One Year

2011-12-05T20:45:00.000+08:00

Tomorrow, it will be one year since we brought Maddy home. Three hundred and sixty five days of her sleeping under the same roof as us, after one hundred and twenty four days of NICU. In the last year, we have had approximately eighty one different medical related appointments for Maddy, including specialist appointments, therapy sessions, etc. That's an average of one every 4.5 days. The first six months, it probably averaged one every three days, lately it's been more like one every one or two weeks.

NICU was such a difficult time for us - and I think that only someone who has been through that would understand exactly how it feels. I also have to say that the society here in Hong Kong makes it far worse than it needs to be.

This past year hasn't always been easy, but even still, it was immensely better than NICU. The first few weeks, we were struggling to force-feed Maddy when she still didn't really know how to take her milk orally. And then we were stuck in Hong Kong indefinitely after being told that Maddy may not be safe to fly. I think that our trip back to Australia (which I STILL haven't finished writing updates about) was really when things started looking up for us. There's nothing like being home, and returning to Australia was so refreshing for all of us, in so many ways.

Tonight as I was putting my girls to bed, I hugged Maddy a little tighter, grateful for those three hundred and sixty five nights that I have been able to put her to bed, and remembering those four months and two days that we were separated.

January surgery

2011-11-26T03:19:00.000+08:00

Today, we had the follow up appointment for Maddy's cleft palate. The team agreed that Maddy is now ready for surgery and we will proceed to schedule it for January after we get back from Australia.

In the surgery, they will first be repairing Maddy's cleft palate and secondly they will be placing ear tubes to help dry out the middle ear. After this, they may or may not be able to perform the ABR hearing test while she is still under anesthesia.

There were a lot of questions that I forgot to ask - I need to learn to write them down before the appointment! I think I was more focussed on whether or not the surgery would be performed and when, rather than asking questions pertaining to the surgery itself.

Any surgery for Maddy (or for any person with any form of dwarfism, for that matter) is more risky as the airways are often more narrow, and the overall structure is a bit different than doctors are used to. Maddy has never been intubated before, and that is my main concern with the surgery itself. For Maddy, that is probably the greatest risk...

After surgery, the recovery may be difficult on us all. Maddy will need to be on a liquid/puree diet for a few weeks, which will be fun now that she is eating the same as the rest of us, and prefers to eat from my plate than her own! She probably won't be able to have a pacifier - which she currently cannot sleep without. And she will need to have her arms splinted so she can't put her hands, or anything else in her mouth. Although knowing Maddy's arms, I'm not sure how successfully they can be splinted - and even when they ARE splinted, I bet she could still get some stuff in her mouth regardless ;)

We do not yet have a date scheduled - the hospital will be calling us to let us know when to come in. But please keep us in your thoughts and prayers over the next two months as we go ahead with this surgery.

As a funny side-note, while we were waiting for our appointment, Maddy was scooting all over the room. She was the centre of attention - people were smiling at her, waving, clapping... One lady even got out her phone to start taking pictures of her.

Maddy was so attracted to the phone that she made a beeline for it, grabbed it and ran away ;) I think the lady was scared of taking it back and making Maddy cry, so Maddy just played with it for a good 10 minutes, taking lots of photos of her feet in the process ;)

First steps

2011-11-23T22:45:00.000+08:00

The last couple of days, Maddy has started taking her first, tentative steps. The most she has taken with no hands is about 5-6, and it often ends up as a dramatic face plant which I attempt to catch (although I don't always succeed, poor girl ;) ). I have been attempting to catch a video of it, but Maddy has a video sensor and does not want to perform.

Here are a couple of short clips that I have managed to catch:

1. Maddy walking towards the camera at close range - you can't even see her legs, but I swear, she was walking a few steps, no hands! ;)

2. Us attempting to coax Maddy to perform for the camera. I don't think she takes any steps, but there is quite a spectacular face plant catch at the end - one of my finest, if I may say so myself ;)

Random bits and pieces

2011-11-22T22:53:00.000+08:00

So I haven't been so consistent in updating lately. Lots of things going on, I haven't been updating so frequently.

Maddy is doing awesome and is standing for longer and longer. She will clap for herself and even do a little dance which usually ends up with her falling back on her bottom. Sometimes, however, she topples forward which always has a tragic end - her little arms are too short to catch her fall and instead her forehead catches it! She's had a few bruises smack in the middle of her forehead lately!

A few posts ago, I talked about Maddy's ears and feet. I have updates in both of these areas that I wanted to share. With regard to her feet, I had a long appointment with the prosthetic and orthotic dude (are those guys "doctors", or just "glorified shoemakers" or what???) in which we talked about Maddy's current AFOs and the Dennis Brown walking shoes that were recommended. We tried the new Dennis Brown shoes but the rigid leather put so much pressure on the side of Maddy's leg in order to correct the turning of the ankle that it would definitely have left bruises or blisters. Her current AFOs are the best that they can do for her at the moment. I guess that means I'll save on shoe costs at least, as she can't wear shoes with them at all. Not very "cute" but oh well, mobility is more important than cuteness right?

With regard to Maddy's ears, the private ENT forwarded his recommendation to the cleft team that the grommit insertion is "best performed soon and preferably under the same setting as cleft repair". Today I had a call from the team bringing our appointment forward two weeks to this Friday. I am hoping that it's a sign that they will want to perform the surgery soon. We will be out of Hong Kong from Dec 16 - January 4 (going home for Christmas - woohoo! First time in three years!), so realistically, I know we probably won't be able to fit it in before we go. I really want this surgery to be over with - but not bad enough to risk our vacation.

I got an email this week from Maddy's NICU neighbour - he is back in Hong Kong (he is actually American but was born here early while his parents were visiting family) and they are having a playdate next week. I can't wait to see him, last time I saw him, he was so tiny and frail - I'm sure he's way outgrown Maddy by now. I can't believe we're counting down, in two weeks today it will be one year since we brought Maddy home...

Inclusive Education

2011-11-17T20:19:00.000+08:00

This past year, I have been studying for my education degree. I decided to do a "summer session" subject (my university is an Australian university, and "summer session" runs from November to March). The only option that I had this semester was "inclusive teaching and learning".

As a part of my course, I need to learn about the legislation and social contexts of inclusive education (ie, education for students with special needs), different perspectives on the whole issue, etc. As a part of my first assignment (due on December 23, seriously!!), I need to discuss inclusive practices in an educational setting that I am familiar with.

Since I haven't been in school for 12 years, I haven't started any of my prac teaching yet, and the girls are not yet in primary school, I have decided to kill two birds with one stone and look into appropriate primary schools for Maddy.

English speaking schools in Hong Kong are very difficult to get into and applications need to be made 1-2 years in advance, so although it may seem premature, Lana will need to start applying for primary school soon. Since I would like the girls to go to the same school, Maddy's needs play a major role in the school that I will choose for Lana.

The whole process has been rather draining - I have been emailing some schools which I was considering, and I have a couple of appointments to go and discuss with them further.

Maddy's "special needs" would be some kind of mixture of the following:

wheelchair accessible (Maddy may or may not need a chair, or she may have a walker or electric scooter, even just part time. It's hard to know exactly how mobile she will be, but accessibility is a major concern)
extra help with toileting if needed (Maddy will be unable to wipe her bottom without some form of aid, making toilet training more difficult. Hopefully she is completely trained by the time she starts school, but some extra help would be good.)
stools etc for reach
extra attention/help with learning to write/use scissors etc (due to the shape and stiffness of Maddy's hands)
flexibility if Maddy needs time off for surgery, ability to continue schooling from hospital etc
anti-bullying policies to ensure that she isn't an easy target

On one hand, I am glad that I am learning about these issues now, but it is a lot to think about and it is so far in advance. But such is the nature of education in Hong Kong. Hopefully we will be able to find at least two or three schools that we feel comfortable with sending the girls to...

Ears and Feet

2011-11-03T22:34:00.000+08:00

Feet

A bit over a month ago, Maddy got new AFOs. She needs AFOs as her ankle joint is very unstable. When she stands, she stands on her ankle - and in the long term, she could do damage to her feet.

The AFOs that she has are not designed for walking. They are designed for infants, to immobilise a joint. The AFOs that are designed for walking at lighter, thinner and can fit inside a shoe.

A couple of weeks ago, we met with the orthopedic surgeon to discuss how the AFOs were working for Maddy. My main concerns were that they are quite heavy and they tend to slip off very easily. The problem is, though, that Maddy's legs are so short and fat that there is no "ideal" AFO for her. We are, however, going to try what is called a "Dennis Brown Walking Shoe". These are little leather boots which go over the ankle and are very supportive for little feet. We will go and have some fitted next week, and hopefully they will work better for Maddy :)

Ears

One of my current main concerns with Maddy is her hearing. I know that with cleft palate, and also with DD in general, hearing loss is not uncommon. Maddy has DD with a cleft and as such is more at risk for hearing loss. An article about DD that I read suggests getting hearing tests every six months or so during the first few years (from memory). I have been asking the doctors at the public hospital to test Maddy's hearing, and about 4-5 months ago, Maddy was apparently placed on the waiting list for a hearing test. After chasing them down, I learned that the machine was broken, but should be fixed soon. As I had a pediatric appointment coming up, I decided to wait and talk about it with them then.

Now, I know that Maddy can hear at least a bit - she does respond to noises (although sometimes she seems as though she may not hear, but I can't tell if she's just ignoring). She also responds to certain things that we say. BUT - she is now 15 months old and cannot say a single meaningful word, with the debatable exception of "mamamama" which she says when she is cranky. She also doesn't say a wide range of consonants, and hearing is so important to speech development at this age.

At Maddy's pediatric appointment, the doctor told me that it is not abnormal for the wait to be so long, and I shouldn't expect an appointment in the near future. The only way I could get a sooner appointment was to go to the private sector.

So, armed with the referral, I called a private ENT on Tuesday afternoon. He asked if I could come in the following day!! After all those months of waiting, I could get an appointment within 24 hours of calling a private doctor!!

Now, Maddy is at risk for hearing loss due to two different things - a) fluid in the middle ear due to cleft palate, and b) problems in the inner ear due to DD. The ENT first checked for fluid in the middle ear, and sure enough she does have fluid which could be causing some hearing loss. He would recommend that she has tubes put in her ear ASAP. He cannot accurately assess the inner ear until the tubes are placed and the fluid is drained. After this is done, she will need to have a special hearing test called an "ABR" which is performed under sedation and could indicate whether or not there is a need for hearing aids.

The complication, however, is that we cannot just rush Maddy into surgery. First of all, the private hospitals will not take her as it is necessary that there is an ICU just in case there are complications with the surgery. Secondly, they need a senior anesthetist for Maddy as she is difficult and even dangerous to intubate. So the ear tubes, logistically, cannot be placed until during Maddy's cleft-palate surgery. Last I heard, the doctors were planning to do this between 18-24 months of age, so still 3-9 months away.

The private ENT will be sending the public hospital his recommendation to do the surgery "as soon as it is safe to anesthetise her". Our next cleft appointment is a month away, and I will be urging them to consider surgery in the new year (I would ask for earlier, but we've already booked tickets back to Australia for Christmas!!). She will not grow significantly in a few months, so hopefully they will decide that it is "safe"...

We won't have any firm answers on Maddy's hearing until after the surgery is done!! "Wait and see" is the story of our life with Maddy these days ;)

"What's wrong with her?"

2011-10-29T17:34:00.000+08:00

Yesterday, I took the girls down to the park. The weather is perfect for it these days, it's starting to cool down but not too cold yet. The girls love it - Lana loves running around and really doesn't need much supervision these days, and Maddy loves to scoot around on her bottom - I'm sure she's going to wear a hole in the bottom of her clothes!! And her AFOs are getting quite disgusting, even though they are only a month old.

Lots of kids from our apartment complex spend their afternoons there, and they all get to know each other by name and play together. There is one little boy who is Maddy's age (and twice her size) - and he has a big brother who is six.

Yesterday, Maddy was playing with her little friend when I heard the brother asking his caregiver:

"What's wrong with her? What happened to her arms? Why are they so small?"

I have to admit, it stung a bit. It's the first time that I've heard anyone asking these questions out loud. I know there was no malice, only a child-like curiosity, but I still don't know exactly what to do in these circumstances. I also know that we will have many of these kinds of questions and we need to learn how to answer them.

In this case, I figured that the questions were not aimed at me so I didn't say anything at all. I know that we will see these kids over and over throughout the winter when we go to the park instead of the swimming pool - so maybe I should satisfy his curiosity with an age-appropriate honest answer, much like I gave Lana when she made similar observations? But on the other hand, I don't feel like we necessarily owe everyone an explanation either, particularly if they aren't even asking us in the first place.

It's so hard to know the appropriate response... I'd love to know your thoughts, so please comment with your opinions :)

A few videos

2011-10-28T20:54:00.000+08:00

I haven't shared any videos for a while, so here are four for your enjoyment :) (if you're a facebook friend, you may have seen one or two of them before)

1. We went to Phuket, Thailand four weeks ago. At the airport, Maddy had a great time rearranging the furniture in the kids play area.

2. The airport play area also had this xylophone thing that Maddy loved :)

3. I'm trying to get Maddy ready for self feeding - she can feed herself by hand pretty well, but using a bowl and spoon is pretty tricky for her at the moment. After I feed her, I usually give her the spoon and bowl to play with so that she can get used to it a bit more :)

4. Maddy is getting better and better at standing unaided!! She can now stand for probably around a minute. The AFOs really help her to stand much longer - without them, she can only stand for a couple of seconds. I'm so proud of her!!

Meet Jadon and Kalina

2011-10-24T23:00:00.000+08:00

When I was pregnant with Maddy, and particularly in her first few months, I talked to so many other parents of kids with DD. When Maddy was born and had some trouble with her airways, someone introduced me to Ember. She has two gorgeous kids, Jadon and Kalina, who both have DD the same as Maddy, and they both had airway issues at birth as well (although actually Jadon and Kalina's were more severe than Maddy, requiring them to have a tracheotomy (breathing tube) placed).

Ember has just started a blog about her kids - Jadon is currently in the hospital preparing to have spinal surgery. I've loved reading about their adventures and seeing more of her gorgeous kiddos.

You should go check them out and offer some support too!!

Sticks and Stones

2011-10-24T13:39:00.000+08:00

Almost everyone has heard the phrase "sticks and stones may break my bones, but words will never hurt me" - and almost everyone knows that it is a complete lie. Words can make wounds that take far longer to heal than the physical.

For every difference, there is particular terminology that is considered "politically correct". There are phrases which society deems "appropriate" and other phrases that are less appropriate. Some of these phrases, it seems as though everyone is aware of (very few people use the "n" word for African American these days without knowing how offensive it is), others are moderately well known (most people would not call a child with Down syndrome "retarded", but many people still freely use the word "retard" and "retarded" to mean foolish, not realising that doing so is just as offensive), and there are some which are even less well known than this.

The term "midget" is offensive to many people with dwarfism - many "LPs" (little people) and "POLPs" (parents of little people) get VERY upset when they hear this word used, even if it's in the context of a child sports league. Yet it seems as though very few people outside of the "dwarfism circle" are aware of this. I only learned that the word was offensive through contact with other people with dwarfism, and it wasn't until Bernard mentioned to me that he when I was pregnant with Maddy that he wasn't sure how to explain that Maddy had dwarfism to his colleague and he told me that he'd said "She'll be a midget" that I told him that the word was offensive.

Because I know that the word is offensive, I do not use it personally - (and neither does Bernard). But in spite of this, I am very aware that very few people in society are aware that the term is offensive - so I try not to be offended by people using the word. If someone asked me "Is your daughter a midget?", I would reply "She has dwarfism - that is the preferred term", without being offended at their innocent usage of a word they were unaware could offend. However if we were walking and people started yelling out "MIDGET!!" at Maddy, I'd be very offended! I would be just as offended if they were yelling "DWARF!!" though, since it is the manner in which it is said which is most offensive.

Sometimes I see people who seem to be always so offended by others, and I don't think that being so sensitive would be doing any favours at all to Maddy. Maddy is going to attract attention wherever she goes. She is going to have stares, questions, comments... some ignorant, some unwelcomed, some hurtful - and she will need to learn to deal with them. I remember reading Matt Roloff's biography and in it, he came home crying from school because some kids had called him "short", of all things. His dad responded something along the lines of, "But honestly, Matt - you ARE short. It's just a fact".

When it comes to the term "midget", when I hear it used, I do mention "are you aware that the term "midget" is considered offensive?" At the same time, I ask myself "was the word used in an offensive way?". If the answer is "no", I try not to get offended by it because I don't want to teach Maddy to be offended at things that people say innocently or in ignorance. (It's funny though, because one of the "preferred terms" for dwarfism is "Little People" - which I personally find very condescending, particularly when used for adults. I personally prefer using the terms "dwarfism" or "short statured".)

So I guess what I'm asking my friends, relatives and other readers - please be aware that the term "midget" is offensive to many people with dwarfism. And I'm not asking a one-sided thing here - I will try not to be offended by anything said or asked in ignorance, and I will try to teach my children the same.

Two false assumptions

2011-10-21T13:46:00.000+08:00

As part of Dwarfism Awareness Month, I wanted to post one more "awareness post" - two things I would love for the world to understand about dwarfism (and disabilities in general).

1. Just because someone is small doesn't make them "immature"
Maddy may be the size of a (very plump) 3 month old - but she's NOT 3 months old, she's 14 months old. To treat her based on her SIZE rather than her AGE is not appropriate. A child with dwarfism might be 12 years old, but he may be the size of an average 5 year old. There is a huge difference in maturity between those two ages - and no 12 year old wants to be treated "like a baby". That is just as true, maybe even more so, for a child with dwarfism.

2. Just because someone has a physical disability doesn't mean they must be affected cognitively as well

This one doesn't just go for people with dwarfism, but also people in a wheelchair, people who are blind, or deaf... even people who have no control of their bodies at all. Very often, these people are not cognitively affected at all and understand everything that is going on around them. They notice stares, they notice people talking about them, they see the mothers "shushing" their children. It is also insulting to talk slower or louder to people with a disability based on a false assumption that they are intellectually affected. And people with dwarfism are very rarely affected cognitively, meaning that their minds are as fast and as sharp as your own ;)

Sometimes I know that people are unsure of how to talk to people with a disability - even I am not so confident all the time. But the best thing is to ignore their physical differences and talk with them just as you would anyone else. Chances are you may have more in common with them than your differences.

Teaching our kids about dwarfism

2011-10-17T13:42:00.000+08:00

The other day, a friend visited with her three month old baby. A gorgeous boy with these long arms and legs I've forgotten how to hold a baby without dwarfism, all those long limbs sticking out at awkward angles. And to me, they look so "different" - it's funny how now, a baby with dwarfism is "normal" to me and a baby without dwarfism is the "different" one.

I never knew, until the other day, that the same is true for Lana.

"Mummy, why does baby S have BIG arms??? Maddy has little arms and baby S has BIG arms"

I honestly didn't know what to say at first - I was dumbfounded that she actually noticed and asked. I was amused that she too thought that baby S was "different" for having "big arms".

I didn't expect to be answering these kinds of questions so soon...

Later, after I had a while to think about it, I decided that I should be upfront about these questions and use this opportunity to start to teach Lana about dwarfism. Not too much - just a little bite-sized nearly-three-year-old answer...

"Lana, you know how baby S has big arms and Maddy has small arms? It is because Maddy has dwarfism. That means that her bones grow very slowly compared to you, baby S and most other people. Maddy's arms and legs are very small, and Maddy will always be much smaller than you."

I know maybe there's a better way of answering those questions, and probably a lot of it didn't really sink in yet. I know that there will be many, many questions over the next few years (and decades, even) and my approach will be the same - be upfront and honest with them, giving them the appropriate amount of information to answer their questions without overwhelming them.

And that's how I'm trying to teach my kids about dwarfism.

Dwarfism Awareness Month

2011-10-10T21:20:00.000+08:00

The LPA (little people of America) has declared October to be "dwarfism awareness month". Last year, I posted a bunch of facts about dwarfism in this post here. I'm not going to post a bunch of facts again (they'd probably just be the same as last year anyway) but I wanted to share a little video with you all.

Enjoy!

And we're off!

2011-09-29T07:36:00.001+08:00

We're currently at the airport ready to board a plane to Phuket, Thailand. We're looking forward to a much deserved break with my family. We'll get to see my brother for the first time in 18 months!

Please pray that we have a safe flight - we'll be flying over a typhoon!

I should have lots of exciting updates when we get back!

New Shoes for Maddy

2011-09-28T13:41:00.000+08:00

Today we went to the hospital to pick up Maddy's new orthotics, and let me tell you, she is NOT impressed!! I expected as much - they restrict her movement at the ankle so it is much harder for her to move around. She can still stand with them on but it's a bit more awkward for her. I don't think that she can go from laying to sitting with them on though - she needs more ankle movement for that.

It will be hard for Maddy to adjust to her new AFOs, but I'm determined that she will learn to use them as needed - the pain and frustration of learning to wear them is worth her long-term mobility... We have a follow up appointment with the orthopedic doctor in four weeks so we'll see how it goes!!

Two months in Medicine (again)

2011-09-27T23:14:00.000+08:00

These days, Maddy's appointments are fewer and farther between, so I've been updating the medical stuff less frequently. My last medical post was two months ago. Since then, we've had a few appointments, the most important (orthopedic) being today.

At Maddy's orthopedic appointment today, she had a full set of x-rays taken for the first time since she was born (she's had a couple of x-rays taken since then, but today, and also when she was first born, they pretty much x-rayed her entire body). I had a few main concerns for the doctor. They were a) cervical spine (neck), b) scoliosis (curvature of the spine), c) hips and d) feet.

Possibly the most serious concern for people with DD is kyphosis of the cervical spine. A kyphosis is when the neck is pretty much bent the wrong way. This can put pressure on the spinal cord and in worst case scenarios can even damage the spinal cord. If a child has a severe kyphosis, they may need spinal fusion which is a nasty, intense operation (but better than risking damage to the spinal cord!!). At the moment, Maddy's neck shows no kyphosis - thank God! Kyphosis is often evident already by Maddy's age, but as far as I understand, it can develop in the first few years. But for now, I'm thankful that things look good there.

Scoliosis is also common for people with DD - but Maddy's spine is pretty straight. It does, however, have a "kink" (I wish I could remember the technical name) in the thoracic region near the ribcage which we will need to keep a close eye on in the future. The doctor said that it is not cause for great concern as many people have these kinds of issues and are asymptomatic.

Maddy's hips are the joint that is of greatest concern to our orthopedic doctor. They are well situated, but the joints are very shallow and could be easily dislocated (actually, when Maddy was born, her hips were partially dislocated hence the need for the pavlik harness) and the doctor wants to keep a close eye on them as well. He has scheduled Maddy for another MRI when she is 18 months old. I asked the doctor which issue he thought was most likely to necessitate orthopedic surgery, and he said it was the hips.

I personally had been more concerned about Maddy's feet - when she stands and walks, she does so on the inside of her foot, walking partly on her ankles. This could progressively worsen and affect her long term mobility so the doctor has ordered Maddy some ankle-foot orthotics (AFOs) for when she is standing. Maddy has a great deal of flexibility in her feet, so the AFO is not so much to stretch ligaments (some kids with DD need AFOs for that purpose) - rather it is to correctly align the ankle so she is standing on her foot rather than the side of her foot. They were custom-made for her today and we will pick them up tomorrow morning.

In other "medical news", at our last cleft appointment, the doctors decided to wait for at least another 3 months before thinking of surgery. They plan to do the surgery between the ages of 18-24 months (that would be between February-August next year). Our next appointment will be in December, and I guess we'll hear then whether they will start to schedule it or whether they will wait a while longer.

We had the immunology appointment to discuss Maddy's apparent dairy/goat milk allergy with the immunologist, and he agreed that it is fairly apparent that she is allergic. We will be doing a skin-prick test to confirm but he said it's really just a formality, and I should plan on not introducing dairy until she's 3-4 years old!! We'll see how that goes... I may just give her small amounts every now and then just to see if she can tolerate it (she is not anaphalactic or anything, she just sneezes and gets mucousy).

I've been waiting for the ENT to get back to us about Maddy's hearing test - I am slightly concerned about her hearing... she is not very vocal and there does seem to be times when she doesn't hear me (although maybe she is just ignoring me ;) ). Today I asked the orthopedic doctor whether he could access Maddy's records and tell me what was going on. It still has not been scheduled, so he called the ENT right there and then. Apparently the machine is broken at the moment so they haven't been scheduling any appointments, but at least I know it's not been forgotten!!

Anyway - that's about all that's been happening around here. We don't have anything major coming up on the medical-horizon so it may be more than two months before my next medical update, but stay tuned :)

Looking back - advice from another special needs mum

2011-09-26T17:00:00.001+08:00

A couple of times now, I've met up with a group here in Hong Kong called "Special Needs Network". Basically, it's a group of mums who have kids with special needs. When I go, sometimes I feel blessed that Maddy "only" has dwarfism. Some of their kids have much "worse" disabilities and will dependent their entire life. I've felt a bit out of place at times, but these mums have some great resources regarding mainstream schooling, medical services, therapies etc and I know that they have some answers to questions that I have, or that I may have in the future.

The last meeting was the evening after I wrote my post about "remembering NICU" and I was talking with one of the mums there about it all. This mum has four kids - she had two healthy kids, then in her delivery with her twins, her son suffered a brain injury during the delivery and ended up with cerebral palsy. He is now six and although he is cognitive (ie, he can think, hear, see, everything like that), he is basically unable to control his body. He cannot speak, except for with the use of a computer he controls with his eyes, he cannot walk...

Anyway - this mum said to me, "When you're in the moment (ie, when Maddy was in NICU), you just have to survive - you don't think about how you're coping, you just do. People tell you that they're amazed how you manage it all, but the truth is, you don't have any alternative. In some ways, looking back on that time after it's all over is even more traumatic than it was going through it, since you're not running on that adrenalin any more".

I don't know if it's universally true or not, but I can identify with that...

(if you're in Hong Kong and want to join the Special Needs Network, please leave a comment below and I can have you added to the mailing list...)

Remembering NICU...

2011-09-22T15:13:00.000+08:00

These days, I've been thinking a lot about NICU. About "this time last year". Looking back on it now, I don't know how I managed to hold it together for those four months of backing and forthing, splitting my time between my two girls who were only together once (which was exactly a year and three days ago). Pumping like crazy, even waking up in the middle of the night to pump. Trying to maintain some kind of normalcy for Lana, still having some playdates and trying to see some friends from time to time. Lana started school in that time, one of Bernard's best friends got married, Lana turned 2, all while Maddy was in NICU. It was a crazy time...

For a long time after Maddy left the hospital, I was still so anxious. I would notice particularly when we were heading up to the hospital, the long, windy road at the end, I would be physically tense.When I look at photos of that time, it all comes back. All the frustrations and heartaches... It's not as bad as it used to be, but at times it still knocks the breath out of me.

Looking back on that time still upsets me a bit - I still firmly believe that she could have (and should have) been home so much earlier. I understand where the doctors were coming from, and I appreciate that IF anything went wrong, they could have helped her... but really, it shouldn't have been four months... That last scan that they did, the one that allowed her to come home, could have been done when she was much younger.

I remember reading something about parents who have had children with difficult medical issues and years later they display symptoms of post traumatic stress disorder. I can understand how that is possible. I don't think that I have PTSD but I still have so many negative emotions about those four months. And although we had four months in NICU, Maddy was healthy the entire time.

One of my biggest fears of having another child is having to go through NICU all over again. I worry more about that than I do about whether or not he or she would have DD (there's a 25% chance that any future child will have DD). I know that's irrational, but that's where I'm at. I even asked Maddy's doctors "If we had another baby with DD and her symptoms were virtually the same as Maddy's, what would you do differently the 2nd time around?" and he said "Virtually nothing". It doesn't instill a whole lot of confidence if they learned absolutely nothing from Maddy...

Anyway... I know this is quite different from all the uplifting posts I've been writing lately of Maddy cruising and dancing and being adorable - but just wanted to share my thoughts...

Standing

2011-09-05T21:28:00.000+08:00

Just a quick one - check out Miss Maddy's latest new skill!!

She can now stand unaided for a few seconds, and it's getting longer and longer every day :) Maddy continues to amaze me - with all her medical issues, she actually is not technically "delayed" at all!

Go Maddy!!

Australian Recap 5 - Sydney Aquarium and CBD

2011-08-25T09:21:00.002+08:00

Before we went to Australia, Bernard and I wrote this massive list of things that we wanted to do back in Australia. Of course we left it at home, and in actual fact we didn't feel like spending every day in Australia out "doing stuff", but one of the things we really wanted to do was to go to the city and go to Sydney Aquarium.

Bernard and I have a photo in this same spot from when we were dating so I wanted to get a shot with the kids.

Lana really LOVED the aquarium - she could have spent all day there. Maddy on the other hand slept through the whole thing. Good thing she was free ;)

The aquarium was filled with these huge Lego statues, all kinds of things - they were almost more fascinating than some of the fish were!

After a few hours in the aquarium, it was time to catch a ferry back to the CBD. I love the ferries in Sydney, such a great view of the harbour! And what a beautiful harbour it is! Unfortunately, we were there on a really cold, overcast and windy day - but even though we were near freezing, we HAD to sit outside!!

When we landed, we had a bit of a walk around the harbour and took a few more photos...

...and then after some yummy pancakes from the famous Pancakes on the Rocks (open 24hrs, 7 days a week), we went home, very tired after a long day in the city :)

Australian Recap 4 - Sydney, Great Nan and the "Beach Park"

2011-08-21T21:20:00.000+08:00

After about a week in the Illawarra with my family, it was time to head up to Sydney to spend some time with Bernard's mum.

After a few days at Bernard's mum's house (in which time we took no photos, except for a few of the girls playing together on the floor), we went up the coast a bit further to visit my grandmother, whom all the kids call "Great Nan" (and she is indeed a great Nan :) )

This was the first time for Nan to meet little miss Maddy, and since Nan loves a good family photo to hang on her wall (yes Nan, I remember I promised to send you a photo of us - I must get onto that! Sorry!!), she had us all pose on her little veranda.

Lana took a liking to Nan's dog Cindy...

...and apparently, Cindy took a liking to Lana too :)

We only had one day with Nan at this point of our trip, later in the trip she came down and stayed with my parents for a few days so we got to see more of her then :)

______________

When we were in Sydney, we were driving to church one Sunday and I noticed this fabulous park on the way there. So on the way home, we got some drive through (KFC is SO much better in Australia than it is in Hong Kong!) and went and had our own little picnic.

The play area was covered with sand and the kids all played barefoot in it. I believe it was Maddy's first time ever in the sand. She seemed to really like it :)

Lana was not so sure at first, but she came around :)

(Gotta love that beautiful blue sky! That's something we don't get much of here in Hong Kong!!)

Australian Recap 3 - Symbio

2011-08-15T09:51:00.001+08:00

In between Sydney and Wollongong in a sleepy town called Helensburg is a little wildlife park called Symbio. It has been there for years and years - when I was a kid, my parents took me many many times. I got to touch some of the animals, and even milk a cow! It's not a huge zoo, but it's great for little kids, if you want a more "cozy" and "intimate" zoo, or if you just have a few hours rather than a whole day.

What would a trip to an Australian zoo be without an obligatory Koala photo? Unfortunately we JUST missed the time for patting them so we had to let them rest and look at them from behind a fence. Oh well, there's always next time :)

Maddy needed a little feed...

...while Lana was off for a walk with Nanny and Granddad.

Almost ALL Australian zoos will have a kangaroo walk-through area where you can feed them and pat them. This little mother had a baby in her pouch and was the focus of all our attention :) Lana LOVED the kangaroos. Maddy didn't really care either way ;)

Walking :)

2011-08-13T17:27:00.000+08:00

Maddy's been cruising for a little while now - if you missed it, I posted a little video on her birthday post.

She will walk forward a little holding onto our hands - but all baby walkers are much too tall for her to use.

Today, we were at a birthday party (Happy Birthday Kayla!!) and Maddy found these little chairs were perfect for pushing around. I think now I need to go buy one for her to use as a makeshift walker ;)

Australian Recap 2 - Kiama and Sunset

2011-08-08T09:23:00.037+08:00

I have to say that beautiful Kiama on the South Coast of NSW is one of my favourite places to visit when I'm in Australia. Cute little cafes (with REAL Aussie iced chocolates. The kind with lots of icecream, chocolate syrup and fresh cream on the top!), little specialty stores selling souvenirs, toys and all kinds of arts and crafts, some pretty awesome icecream, a great park with lots of grass for the little ones, and who can forget that stunning coastline and blowhole? We went down to Kiama with my dad one afternoon and we had a great time (ANY time involving iced chocolates is a great time for me, and my trip back to Australia involved MANY of them ;) )

We started, naturally, at a nice little cafe...

Sitting on the table since another baby was taking the cafe's only highchair! (shock, horror)

Want some sugar, Mum?

Hmmm, I think I LIKE this stuff ;)

Then after our tummies were full of yummy goodness, we went for a short little walk to burn off some of those calories.

Stopping to read all the signs

Cozy warm :)

Later that evening, we were at my parents' place about to have dinner and God decided to put on a show for us. One of my absolute favourite things about my parents' place is the view - it's a gorgeous view across a lake, with mountains off in the distance. And when the sun sets... WOW!

Of course we HAD to get some pics with that view...

Daddy and his girls

Nanny and the girls

What more can I say? Beautiful... Wish we had more of THAT in Hong Kong...

Growing up

2011-08-06T06:22:00.001+08:00

These days, Maddy seems to be growing up more and more every day. She's getting stronger, more active, her fine motor skills are getting better...

Some of her latest things to do are:

1. scooting ALL over the house! She will follow us into every room. She especially likes to go around closing all the doors. Could it be a coincidence that Lana also likes to close all the doors? That brings us to:

2. copying ANYTHING that Lana is doing. Big sister is dancing? Maddy wants to dance too. Big sister is clapping? Maddy will clap. Big sister is reading books? She wants to get right in on the action.

3. standing up on anything and everything. Just now, she stood up against a wall! She loves to be standing and it's so cute to watch her stand!

4. cruising a little. She can only really do this if the height is just right - but I know that it's only a matter of probably a couple of weeks before she gets even better at it!

5. giving. She will actually share her things with me now, actively giving me a toy, or trying to shove her biscuit into my mouth.

6. nodding/shaking head/waving "hi" and "bye"/signing "more". Maddy has been doing many of these things for months now, but it is more and more obvious that she understands what we are saying or what is going on and responds with the appropriate "sign". If I am getting my bag and shoes, she will start waving to me, completely unprompted. If we are talking and one of us says "no", she will shake her head. She loves to listen and be involved in our conversations. Even though she is not saying any clear words yet, she definitely understands what is going on :)

I'm sure there is many more that I can't think of right now, but I just wanted to share those new things with you all :)

Happy Birthday Maddy!!

2011-08-04T07:00:00.000+08:00

To my darling girl,

Wow, one year already. When your big sister was born, I always said that there was nothing that changed my life more than having children. Becoming a mother is so much life-changing than going to university, than working, than getting married, than moving away from home, even than moving to a foreign country. I thought that becoming a mother for the second time would be a relatively small change, but boy was I wrong about that! You have changed our lives so much more than I ever imagined, just by being you. You have brought us so much joy, so much strength. You have brought so much growth in our lives. You have brought so many wonderful people into our lives that we would never have met if it weren't for you. You are touching so many people's lives. I am so thankful that God brought you into our family.

My pregnancy with you seemed like the longest pregnancy in the world - it was quite an epic journey for us, that pregnancy. And you were so cozy inside of me and didn't want to come out and meet the world. We were so ready for you to be here, ready to know that everything was going to be ok.

I remember so clearly when you were born. I was praying that you would let out a big yell and I would know that you were ok, but you didn't. You were so quiet. I was worried about at first, afraid that we were about to get bad news.

But then you whimpered a little. You still have one of the softest cries that I've ever heard - although you do know how to raise your voice if you really want to make a point. The doctors brought you over to me and told me that your APGAR scores were 9 and 10 - even better than your sisters. I knew then that everything was going to be ok.

I was itching to get up to the NICU and see you, but I had to finish an IV drip first. The nurse put the flow up too fast and I noticed that it was emptying about twice as quickly as they said it would - but I didn't tell them because I knew that meant I could go and see you sooner.

When I finally went to see you in the NICU, you looked so small in there - but oh so sweet! My arms were longing to pick you up and cuddle you, but it would be nearly two more weeks before I was allowed to do so.

Even from very young, you were so alert and watched everything. You still do. You have intelligent eyes and even at birth, it was as though you understood every word that I was saying to you.

It's crazy that in the last year, you have grown from this little baby:

into this cheeky little girl:

In the past year, you have had your hurdles to overcome, and you have soared over them all. I hope and pray that you will continue to do so as you grow.

I love you baby girl!!

xox

PS - I love your slimy baby kisses that you just started giving me in the early hours of the morning on your first birthday...

Australian Recap 1 - The Plane, and Grass

2011-08-01T21:19:00.000+08:00

I never posted hardly ANYTHING about our trip to Australia, besides a few specific events. We have tons of photos that I never shared so I thought I'd do a few little "recap" posts to share them all with you. I can't believe that it was nearly four months ago that we left to go back! And I rarely posted on my blog when we were there (I did 2 posts the entire nearly 6 weeks!). We were having too much fun to blog about it ;)

Anyway - as you all know, Maddy was absolutely fine on the plane. Lana was temperamental, I chucked up, but Maddy was completely fine ;) I think it must have been because she had the most comfortable seat in Economy Class! She could even lay down. And I have to say, this is a situation where dwarfism is a benefit - Maddy will be able to fit into these beds for a LONG time still. Lana outgrew them by the time she was about 10 months old ;)

When we arrived in Australia, we first had a couple of quiet days with my family. My mum had met Maddy once at the hospital when Maddy was only a week old, but had never held her. My dad and my sister had not met her at all before the trip. (My brother who lives in Denmark STILL has not met Maddy - he was last in Hong Kong when I was pregnant with her. He was actually stranded here for an extra two weeks due to that volcano, remember? - but we will see him at the end of next month - woohooo!)

On our 2nd day in Australia, we decided to take the girls down to a lovely, grassy park at the harbour - something SO different to what we do in Hong Kong. Hong Kong is concrete everywhere and we don't get much grass-time.

We sat on this lovely blue mat that my parents scored for free and we had fish and chips (the first of many, I'm afraid!).

Then we decided to introduce Maddy to grass for the first time.

Not so bad...

Um, I think I'm changing my mind about it...

GET.... ME..... OFF!!!!

After that traumatic encounter, it was time for some cuddles with Nanny and Aunty Ash

Then Lana had a bit of a play in the park while Maddy had a bit of a snooze, and we were off - one of our first cultural experiences in Australia checked off our list :)

One Year of Pumping

2011-07-30T10:05:00.001+08:00

Next to questions about Maddy's medical condition, one of the most common questions that I get asked is about pumping. If you don't want to read all the details, feel free to stop reading right here as the rest of this post will be only about pumping and nothing else.

I have written previously about my pumping experience here. At the time, it was still early days (just shy of three months) but the early days are the hardest!!

To summarise from the earlier post, in the first month of pumping (some will say the first three months, but really it's until supply is established), it is important to pump at least eight times a day, at least five minutes after the breast is empty, and with no more than five hours between any two pumps.

For me, my supply was well established by a month, and at one month, I dropped down to seven pumps a day, but still keeping that one middle of the night pump. I was pumping 1400mL a day.

My supply continued to increase and so after another two weeks, I dropped down to six times a day, pumping 1500mL a day, which increased to about 1600mL a day by the time Maddy was two months old.

At that time, I dropped down to five pumps a day, and kind of dropped the middle of the night pump at last! I was still pumping at 11pm and then 6:30am, usually dropping back off after pumping in the morning. That early morning feed got pushed later and later until it was at 8am and I was finally sleeping through the night again! Maddy was still in the hospital at that time.

When Maddy was around three months old, I went down to pumping four times a day. I would pump around breakfast, lunch, dinner and right before bed. I was still getting around the 1600mL of milk a day all this time.

When Maddy came home, the busyness of needing to look after her made me go to pumping three times a day. This was the first time that I noticed a drop in volume. I pumped three times a day for a LONG time, from the ages of around 4 months til 8 months old - and my supply slowly dropped from about 1500mL to 1200mL. This was still plenty to feed Maddy though. At her peak, she was only drinking 800mL a day, and when she started solids, this decreased substantially.

At about eight months, just before our trip to Australia, I decided to go down to just twice a day - further reducing my supply. At the time, Maddy was only drinking about 600mL and my supply was around 7-800mL. Still more than enough, but with a much smaller excess. That said, I think I could have maintained pumping twice a day and met her needs at least for quite a few more months.

My initial plan was to pump for a year and then to transition Maddy onto cows milk, bypassing formula altogether. However, Maddy's dairy allergy put a spanner in the works there! I wanted to make sure that we had a good milk alternative that Maddy would actually drink before I stopped pumping, and the thing that works best for her at the moment is soy. Maddy is also allergic to goats milk, so that is not an option for her.

Knowing that we had a good alternative, I was confident to begin pumping just once a day. The transition from twice to once a day was the most difficult - instead of just dropping a pump, I had to reduce the time that I was pumping slowly in order to actively decrease my milk supply without having all kinds of engorgement issues! I managed to make a fairly painless transition by the time Maddy was around 11 months old.

I was surprised with how quickly my supply dropped with just pumping once a day! Within a week, it had halved to a little under 400mL. Maddy drinks about 400mL a day, but so that she will be able to have breastmilk for longer, I have been giving her one bottle of soy milk and one bottle of breast milk a day, freezing the excess.

In anticipation of her first birthday, I was also been actively pumping less and less each day. Initially, I was pumping for about 40 minutes in order to pump til empty, but then I reduced right down to just 15 minutes, yielding only 150mL. And then, I planned to see what would happen if I skipped one night. I thought I would need to pump in the morning due to engorgement, but I wasn't uncomfortable - so I put it off until night time. I still wasn't uncomfortable, so I figured I might as well "hang up the horns", so they say.

So I didn't QUITE make it to one year, but I have to say that all in all, I did a pretty awesome job (pat myself on the back). Pumping was not always easy, and I have had to make sacrifices to do it - but I do know that it has had health benefits for Maddy, and financial benefits for us!!

My advice to anyone wanting to pump would be - just try it and see how you go. For some people it is easier than for others. I didn't find it unbearable, although it is definitely a sacrifice. Also I think it is good to keep a track of when you pump, how many times a day you pump and the volume you get as well. It helps you to know where you are, and for me it was those numbers that helped me to decide whether to risk dropping a pump. For me, it probably made it easier in some ways that those early days, I didn't need to look after a newborn. By the time that Maddy came home from hospital at four months old, my supply was well and truly established and I was in a routine that I could work around.

I also found, I had gastro twice during that year and both times, my supply really took a HUGE hit. It was scary the first time it happened, within a day, my supply was down 40%. But when I recovered, so did my milk supply. The second time I had gastro and my supply also took a hard hit, I didn't fret so much because I knew that it would bounce back, and it did.

So, there's my pumping "journey"... and now, for the first time in 3.5 years, I'm not either pregnant or breastfeeding (or both)! It's kind of weird, but good :) There is the odd tinge of guilt - I could have kept going for longer, and I know I COULD have... but I also know that at this age, the benefits for Maddy are smaller, and for me, it's no longer worth the hassle. I'm sure Maddy will thrive regardless :)

One year ago...

2011-07-28T17:29:00.000+08:00

A year ago today was my due date.

My mum was here in Hong Kong waiting for baby Maddy to come.

I just went back and read some of my old posts to remember those days of waiting... going a week overdue, being induced, hoping for Maddy to be healthy and that we wouldn't have any unpleasant surprises when she was born.

We had prepared ourselves for her to be different. I knew that she would be spending at least a day or two in the NICU and that I may be leaving the hospital before her. I had no idea whatsoever that she may be there for four months though!

In this whole journey, for me, the pregnancy was probably the most difficult time. Not knowing how Maddy would be, not knowing exactly what condition she had, in the earlier days, not even knowing if she would make it home. For me, the pregnancy was even harder than NICU. Well, it was different. NICU was incredibly frustrating, but at least Maddy was incredibly healthy. The healthiest baby there, I think. Apart from that first week, I never worried about whether we would bring her home. I only wondered how long it would take!!

I had forgotten how sick we were this time last year. This time last year, Bernard had shingles. In Maddy's first couple of months, he also had hand foot and mouth disease.

There's still a week til Maddy's first birthday. We're not doing anything big to celebrate - we're just taking the girls to Disneyland. It's probably more for Lana than for Maddy - but it will be nice to spend the day together. We'll make sure that there is cake and candles somewhere in there. And I'm sure that I'll be doing a whole lot of remembering...

Why I don't pray for a miracle

2011-07-22T21:39:00.000+08:00

First of all, I have to say that as a Christian, I believe in the supernatural. I believe in miracles. I believe that healings still happen today. However, I do not pray for Maddy to be "healed" of her dwarfism. Not because I do not have faith, but because I completely believe with all my heart that God made her different for a reason, and to change that one aspect of her would be to change who God made her to be.

There are people in our lives who seem to be fixated upon the fact that Maddy is a dwarf and they continue to "pray for a miracle" for her. This really bothers me because these people are missing a very important biblical truth. I wrote part of my thoughts on this topic over a year ago in this post - "My thoughts on God and suffering" (have a read, if you haven't already. It's one of my favourites). Simply put though, they are missing the fact that sometimes God allows something that looks like weakness to the world in order to show His strength. In my pregnancy, I felt a lot like Paul did, when he prayed and prayed for God to remove his "thorn in the flesh". God's answer to him, as it was to me, was "No - my grace is enough for you". And so Paul learned to accept and boast about his weaknesses instead of continuing to pray for God to change the situation.

In order for God to "heal" Maddy, he would need to change her DNA completely. He would need to go into every cell in her body and take out the affected DNA and replace it with different DNA. DNA that was not Maddy. There is absolutely no difference in me praying for God to heal Maddy's dwarfism as there would be if I prayed for God to change my Chinese husband and make him Caucasian. Or if I prayed for him to turn my uncle into an aunt. We can all see that features such as race or gender would fundamentally change who someone is - and it is the same with this one little gene that causes dwarfism. If God changed it, he would be fundamentally changing who Maddy is - and I don't want that. I love my daughter the way that God made her, and I wish that everyone else would too!

Today I came across a fantastic new blog called Noah's Dad. Noah's dad was writing about this same topic and echoed my thoughts so well - in fact, his post was what inspired me to write this. He says:

... sometimes when people say they are praying for our son they have this tone in their voice like they are praying for him to be “healed” of the swine flu, or the chicken pox. I jokingly (and I really do say this) say to them, “No! Please don’t pray for our son to be ‘healed’ of Down syndrome. We really like our son, and would prefer to keep him!”

... If you were to “take away” Down syndrome you would take away our son. He would have a completely different genetic code, thus being a completely different person.

So pray for him to behave, pray for him to come to know God through Christ, pray for him to develop into everything God has created him to be, pray for him to be loving, and kind, and pray for the small hole in his heart to close up before we go back to the doctor.

But please don’t pray for him to be “healed” of Down syndrome.

So in my own words, I want to ask you all - please continue to pray for Maddy. Pray that she will be the healthiest Diastrophic Dwarf in the world, that she will not have many of the common complications of her condition. Pray that when she has the surgery to close her palate, that she will respond well to the anesthesia. Pray that she will grow up to be loved and accepted by all, that she will develop a strong sense of identity. Pray that she will excel in everything that she does. Pray for her character. Pray that she will learn to accept that God made her differently and that she will allow Him to be made strong through her weaknesses. But please do not pray that that she will be made different than who she is. By doing so, you are praying against one of the very things that God intended to make her special.

The last two months in Medicine

2011-07-19T21:39:00.000+08:00

I can hardly believe that we've nearly been back in Hong Kong for two months now! In that time, we've had a few different doctors appointments and we have some important ones coming up as well.

Our first appointment when we got back was with the ENT and pulmonologist for a joint upper airway clinic. Both of them are very happy with Maddy's breathing - particularly since she was fine on the plane. Maddy still has minimal stridor if she is congested or very agitated but nothing really that we need to be worried about on a daily basis. I mentioned to the ENT that I would like to get Maddy's hearing re-tested. I know she is not "deaf" - she can hear a loud noise and looks around for where it is coming from - but some hearing loss is not uncommon in kids with DD and I'd rather stay on top of it so that IF there are any issues, we find them sooner rather than later. One possible indicator for hearing issues is speech development, and Maddy's speech is not as advanced as Lana's was at the same age (although that's probably a poor comparison because Lana was an extremely early talker). So we are on the waiting list for that, apparently. No idea how long that will take, but at least it will be followed up.

We also had a cleft-palate appointment. They basically want to keep following up with Maddy every 3 months until they decide it is the optimal time for her cleft repair surgery. It could be at any time between 15-24 months - but for now, we're just waiting for her to grow a little more first. These doctors are my least favourite out of all our doctors. The one who needed to look in her mouth was so rough with her, he just forced the paddle pop stick in her mouth and pushed her mouth open to check on the cleft. I would have thought that surely someone who needs to check cleft palates on a daily basis would have figured out by now a more gentle approach? I'm thankful that this guy is the ONLY doctor we've had that has been so uncaring. I'm not so happy that chances are, he might be the one in charge of Maddy's first surgery. But maybe he was just having a bad day, or maybe I'm overreacting - I don't know. I'll definitely be a bit more wary next time we see him...

We have also in the past month seen the pediatric dentist team - and I have to say that out of all the doctors I've seen in Hong Kong the entire five years I've been here, they were my favourite! Such a change from the cleft palate doctor. And they know how to look in a baby's mouth as well - all they need is a little tickle, make them laugh, and voila! Better than making them scream! We were referred to the pediatric dentist months ago when Maddy was having feeding complications. They thought perhaps a palatal obturator would help those issues. In the meantime, her feeding has greatly improved and the dentist said that unless they cannot eat without the obturator, chances are the obturator would just be a hassle. So no obturator for Maddy! They do want to continue to see her for other cleft-related dental issues though, so we will be going back about once a month or so now. They also have access to speech pathologists which Maddy could possibly benefit from - if not now, then in the future.

Just last week, we had our neonatal follow up appointment. All was well there - but I wanted to talk to the doctor about allergy testing for Maddy. Maddy seems to have a dairy allergy. I've tried to give her yoghurt and cheese a few times and every time, she's had an immediate reaction - sneezing and mucous. Once I think she got some in her eye and her eye almost swelled closed. I mentioned these issues to our GP but she wasn't confident drawing blood from Maddy, plus the scratch test isn't covered by insurance. She suggested that since we're already seeing the public doctors, if we mentioned it to them, we could get them to do the testing for free - plus if she needs blood drawn, they have significantly more experience drawing blood from difficult babies. The neonatologist has now referred us to the immunologist and we will do the testing with them in about a month's time. In the meantime, it's no dairy for Maddy!!

So that's all that's been going on medically in the past couple of months around here. Next week, we're back off to the dental hospital, then next month we have the immunology appointment. In September, we have another cleft appointment and probably the most important appointment of all - the orthopedic appointment. Maddy will be a year old then and we will repeat all her x-rays and see if we need to do anything orthopedically. My main two concerns are her spine and her feet - her spine, to see whether there is any scoliosis or cervical kyphosis (curvature). Both are common DD issues that we just need to continue to follow up while she is growing. Then secondly her feet - I know they have some turning that may possibly need correction - and her feet are one of the main issues in determining how mobile she will be in the future. We'll see how that goes - please continue to pray for those two issues in particular!!

Everything has slowed right down with the medical appointments lately, and many of the issues are stable, but we still need to follow up. So I might just update the medical side of things every few months, or when there is any actual "news" to report.

Some more videos

2011-07-18T16:26:00.000+08:00

Just what you've always wanted, right? I've NEVER posted videos on this blog until the past week or so (unless you count that one that was a slideshow of photos about 6 weeks ago) - and now I'm a video-maniac!!

First: Here's how Maddy gets herself into a sitting position

And secondly, here are my two girls having a good ol' dance. I was wanting to get a video of how Maddy actually pulls herself up to stand - and I got a couple, but this video was heaps cuter so I'm posting it instead ;)

Enjoy!!

Jumping!

2011-07-17T21:56:00.000+08:00

It seems like every single day, Maddy is learning something new!! Just today, she started "jumping" on her bottom - this is harder than it looks! If you don't believe me, try it yourself. I did and hurt myself ;) hehe Please excuse Lana flashing the world in this video, she just wanted to be part of the action,

In addition, today for the first time, Maddy has figured out how to go from laying to sitting. Not an easy task since she doesn't use her arms at all! She does it by laying on her tummy, bending her legs underneath herself until her bottom is right up in the air, then she flops down onto her bottom. I don't have a video of this yet (nor do I have a good video of her standing, which she is doing quite well when she wants to) - but I'll see what I can do. Sorry for the video overload lately, but she's just doing so many new cool tricks and I want to share them with you all :)

PS - I don't know if you all noticed, but I changed the header to one of my all-time photos of Maddy. I had been wanting to do that for ages - that old header was made when she was still in the hospital with the feeding tube in - and when a friend commented about how pitiful she looked, I figured it was about time to get my act together ;)

Peekaboo!!

2011-07-16T10:34:00.002+08:00

Maddy and her Elephant

2011-07-15T20:52:00.000+08:00

Maddy often plays with this big, blue elephant. It's pretty huge and she will flop herself onto it and exercise her leg muscles in the way I described in my previous post. I managed to catch a little video of it and thought I'd share it with you all :)

New Skills

2011-07-11T21:57:00.000+08:00

It seems like every day just about, Maddy is growing up a little more and doing something new. I've been trying to photograph them all and get videos, but whenever a camera comes out, Maddy is more interested in grabbing the camera than she is in performing for me ;)

Maddy's fine motor skills are getting better and better all the time. She loves to hold onto rice crackers and feed herself - she goes through so many of those things. She can even feed herself blueberries! She is holding her own bottle (that took longer than usual, understandably) and also can pick up her water bottle and attempt to drink from it (usually she doesn't tip it far enough back though). She loves paper for some reason, and whenever she gets her hands onto a piece, she plays "peekaboo" with it - SO CUTE :) And she is always fascinated by the smallest speck of dust - she will cross an entire room to pick up something I can barely even see ;)

Maddy is moving more and more every day. I mentioned in my previous post that Maddy probably won't really crawl, but I realised that she kind of DOES "crawl" if you want to call it that. When she's laying on her front, she can go forwards, if that constitutes "crawling". It's not a conventional crawl, or even an army crawl. I think it's best described as a "caterpillar crawl" - she'll kick with her legs and put her little bottom up in the air, then slide forward with her head. I'm sure it's not comfortable - but when she's laying, she can't get herself into sitting position yet - so she's gotta get around SOMEHOW ;)

Talking of moving, Maddy is REALLY wanting to stand. Her hands are not strong enough for her to be able to pull up like most babies do, so what Maddy does is find a raised surface like my legs, a pillow or a large toy, does a face-plant onto it, and then maneuvers her feet so that they are on the ground. Of course, her body is stuck at a 90 degree angle to her legs - but that is how she "stands". If I let her use my hands, I can help her to stand up straight with her feet on the floor and she will jump up and down. Maddy does a "see saw" kind of thing with her legs where, keeping her legs straight, she will go forward onto her feet lifting her bottom off the floor, then see-saw back down with her legs still straight onto her bottom. It's hard to explain but it reminds me a bit of how Kai gets around in this video that I already shared with you all (especially watch how he gets from laying to sitting. Maddy is already trying to use that same method - but she's not QUITE there yet).

In addition to these motor skills, Maddy is also developing some social skills as well. She loves to wave to us now, and for a long time, she has loved to shake her head "no" and nod "yes". She seems to know the funniest times to insert them into a conversation and she loves to make people laugh. I'm trying to consistently sign with her - but I'm not the most consistent person in the world ;)

I will keep trying to get these new skills on video to share with you all :)

Moving :)

2011-07-04T10:22:00.000+08:00

I had heard of and seen other babies doing the typical DD "Butt scoot" (check out Guilherme doing it here - note the blog is in Portuguese but Google Translate makes it readable, even if the grammar is not perfectly correct ;) ) and I was looking forward to Maddy doing the same. On my birthday at the end of May (aged 9.5 months), she began rotating on her bottom - not moving in any direction yet, but at least MOVING. Then a couple of weeks later at age 10 months, she started going forward!! As you can see in the video below, it is still a little to the left, a little to the right rather than in a straight line - but regardless, it's pretty adorable!! And it gets her where she wants to go, which is all over the place!!

Maddy probably will not really crawl effectively. She rolls around a lot on the floor - this way and that, turning and twisting all over the place. She does push up, but it takes her a lot of effort and so crawling really wouldn't work very well with her short arms and legs - but the above butt scoot works just fine :)

Meet Ian

2011-06-30T23:30:00.000+08:00

I love seeing other blogs, photos and videos of other little kids (and even adults, truth be told) with DD. Firstly, I might be biased, but I think that some of these kids are the most adorable I've ever seen!! Secondly, it helps me to understand a little about what the future may hold for Maddy (although as with any condition, no two people are exactly alike). And thirdly, without fail, these kids have the best spirits, and great stories too :)

One of the ladies in a DD support group that I'm part of shared this video that her son featured in. Ian is seven and has stayed at the Ronald McDonald house "hundreds" of times. He was a part of this fundraising video for them, and you just HAVE to see it :)

Click here to watch

(and yes, I know I have a LOT of updating to do around here!! Need to get onto that...)

New Friends - Part 3. Alison :)

2011-06-20T21:30:00.000+08:00

One of my hopes for when we were back in Australia was that we would be able to meet someone else with Diastrophic Dysplasia. I thought that possibly that would happen at the SSPA function we went to, but there was no one with DD there.

I have been very active in online communities, and one such group is a DD support group which I actually started. I had a bunch of mothers and one adult with DD who I had emailed a little, and I figured it was easier to talk with them all via Facebook instead. Little did I know that everyone knew everyone else and my little group of about 7-8 people ended up growing to over 100 members made up solely of adults with DD or parents of children with DD.

Out of all the members in the DD support group, I believe there is only one member who lives in Australia. That member is Alison. Alison is roughly my age and has DD. She lives very far from where we do in Australia and so I wasn't expecting to be able to meet her. However she and her mother Louise had the chance to come up to my hometown for a weekend when I was there. It was the same weekend as Maddy's dedication service, so they were able to come along.

Out of all of the things we did while we were back in Australia, out of all the people we saw, meeting Alison and Louise was probably one of the highlights of the whole trip. Both of them are amazing people, and fellow-Christians as well. When we went to the SSPA weekend, we felt that with many of the people there, all that we had in common was the dwarfism. But with Alison and Louise, we had so much more in common than that.

It was great to be able to talk with Louise about her experiences parenting her three children, two of whom have DD. There are many parts of her experience that I can relate to, others that I'm thankful that I cannot relate to, other parts that I know are yet to come.

And talking to Alison was wonderful as well. I love how Alison has not used DD as an excuse. She went to university and is now a teacher (and I'm sure she's a fabulous one at that!). She's an amazing and beautiful person, both inside and out - and I'm so honoured that she and Louise would take the time and money to go so far out of their way to come and visit us and support us in the early stages of this journey!!

Plus she made Maddy the adorable headband in the picture above! Note to self - I need to learn to knit ;)

I know how much it has meant so much to me to be able to meet Alison, and I know that as Maddy grows, having someone like Alison in her life would be such a blessing in more ways than one. Here's hoping that we have a long and wonderful friendship.

New Friends - Part 2. SSPA

2011-06-17T21:36:00.000+08:00

As I knew that Hong Kong has no organisation for people with dwarfism, I have been following the webpages of the SSPA, and in particular the NSW/ACT branch webpage. I was hoping that when we were back in Australia, there might be a function that we could attend. I was excited to find out that indeed there was! Right in the middle of our trip, there was a weekend planned in Canberra, just a couple of hours drive from my parents' place.

I think that it is important for our family to have at least something to do with other people with dwarfism for a few reasons. Firstly, it helps us to stay up to date with the latest medical issues that may be relevant for Maddy. Secondly, it can help us to be able to know what products/devices we can use to help Maddy gain independence. And thirdly, it can help to "normalise" dwarfism and help Maddy to feel as though she's not the only person with dwarfism in the world. Many of the people I talk to online have had very positive experiences with organisations such as LPA and I had high expectation of the weekend.

We had a pretty good time at the weekend and we met some amazing people there. Most of them, as I expected, had achondroplasia. I was hoping that there might be someone with DD, or someone who knew someone with DD, but I was surprised to hear that most of them didn't know anything about DD at all, and the leaders didn't think that there were any active members in the SSPA with DD. I wasn't really expecting that - I don't know if it's similar in the LPA or not. I do know that there are members of the LPA with DD and they have specific groups and workshops at their national conferences so it's probably not as bad there...

I would like to keep up some contact with the SSPA. I don't know if we would be going to every single meeting if we were permanently in Australia. Maybe once every year or two. I know that there are benefits for us to maintain ties with the SSPA but I don't plan to be "running for office" there any time soon ;) Going to the event made me realise that yes dwarfism is a part of our lives, but it is just one small aspect. I don't want dwarfism to be the all-encompassing theme of our lives.

I grew up being very involved in church. We went to every youth camp and each year in our summer vacation, we travelled to a random city in Australia for the church national conference. It was a huge part of our lives and I loved it. I don't think that anyone could be THAT involved in two separate organisations. You'd either have to be just half-involved in both of them or completely involved in one at the expense of the other. You can only saddle one horse, so to speak. And I don't know if I want to completely saddle the "dwarfism horse".

All that to say, we had a great time at the SSPA weekend. It wasn't completely what we expected - but it was still good and beneficial. Hopefully we'll be able to see more of them on future visits back to Australia :)

New Friends - Part 1

2011-06-14T14:04:00.000+08:00

Ever since I was pregnant with Maddy, I have been wanting to connect with other parents and people with similar conditions. One of the first things that I did when we found out that Maddy had a skeletal dysplasia was to look up other blogs and find contacts who I could talk to about our journey. I have been so blessed this past year to have made some amazing contacts through the internet.

I always hoped to be able to meet some dwarfism contacts in real life rather than just through the internet, but when I inquired about dwarfism support groups in Hong Kong, I found that there are none. The US has the LPA (Little People of America), Australia has the SSPA (Short Statured People of Australia), but no such group exists in Hong Kong.

Not long before we went to Australia, I was emailing the fabulous Buckeroomama who taught us a Babysigns course when Lana was a baby. I wanted to ask her about signing for Maddy since Maddy has restricted movement in her hands - and in the course of the conversation, she mentioned that she happened to have a friend with a daughter with dwarfism, and would I like her to put us in touch with each other? I was so excited - it was completely unexpected and I had been looking for contacts here in Hong Kong for ages!

The following week, one of my friends here in Hong Kong emailed me and mentioned that she was at a playroom and noticed a young girl with dwarfism so she started talking to the girl's mother about me and if I wanted, here were her contact details!! So after a year of not finding ANY dwarfism contacts here in Hong Kong, in the matter of a week, I had made TWO new contacts!!

The three of us all have girls and they all have different forms of dwarfism. The oldest girl is 11 and has hypochondroplasia, one of the more mild forms of dwarfism. The next oldest is 5 and has the most common form, achondroplasia. And then of course there is Maddy :)

I was able to meet up with one of the mums and her five year old before we went to Australia. Since returning from Australia, all three of us have met up for coffee. We plan to do it more regularly - but both of the other mothers are heading over to California for the big LPA national conference in a couple of weeks so we will have to wait until they get back (Wish we could go too - maybe another year!!) Yay for new friends!! :)

Meant to Be

2011-06-01T23:47:00.001+08:00

When we were in Australia (yes, we're back in Hong Kong now and I will get around to updating this poor neglected blog soon!!), we had a dedication service for Maddy. One thing that we wanted to do was to have a slideshow of photos of Maddy and play it along with a meaningful song. Every since I heard the song "What it means to be loved" over a year ago, I wanted to use that song at her dedication. The song held so much meaning to me when I was pregnant and at the time, it was so appropriate.

However, as I started to put the video together with that song, it felt so wrong. While I still love the song, it is so "backwards looking" for us. It reminds me of the pain of the pregnancy, it reminds me of how we thought we might lose Maddy - and while I don't want to forget those things, it wasn't appropriate for her dedication. Instead, right before the dedication service, we heard a new song which so perfectly fit us for NOW. It is "forwards looking" and celebrates Maddy rather than looking back at the uncertainty of the past. So at the last minute, we changed songs - and I'm so glad we did!!

Anyway - here is the video, complete with some new photos from our time in Australia. The lyrics to the song are posted below as well.

Enjoy!!

Meant To Be - Steven Curtis Chapman

Long before you drew your first breath
A dream was coming true
God wanted to give a gift to the world
So He wrapped it up in you
Every step that you've taken
Every move that you make
Is part of His plan

You were meant to be touching
The lives that you touch
And meant to be here
Making this world so much more
Than it would be without you in it
You were meant to be bringing
The gifts that you bring
And singing the songs
You've been given to sing
You are perfectly, wonderfully,
Beautifully meant to be
You were meant to be

Long before you took your first fall
You stumbled to the ground

God started telling the story of you

To the angels gathered around
Every failure and victory
Everything in between
It's all in his hand

For every breath that you're taking
And every move that you make
It’s a meaningful life you’ve been given
Live it well

(ps - does Blogger always make the videos such low quality or is it something I did? If I upload from youtube rather than uploading directly to blogger would that give me a better resolution video? This is my first time adding a video to my blog so I'm still trying to figure it all out!!)

Are your daughter's limbs short?

2011-05-01T14:26:00.000+08:00

The other day, I was out shopping in a Christian bookstore in the beautiful city of Sydney and for the first time ever, someone approached me about Maddy's differences. She was talking with Maddy and Maddy was smiling at her and waving her arms and legs around wildly (as she does, these days!) and the lady asked me "Are your daughter's limbs short?"

I found the phrasing of the question somewhat unusual but I answered and replied that yes, Maddy has a form of dwarfism and that's why her limbs are very short. It turns out that this mother also has a child who has had some medical complications and we both shared a little of our "medical experiences" with our kids. Although I was a little taken aback by the question, it was overall a really nice chat, short but heartfelt. Probably because the other mother has dealt with medical complications, she knew how to be tactful but wasn't scared of asking in the first place.

In Hong Kong, people so far have been much less likely to directly ask questions like that and are more likely to avoid the subject altogether, although increasingly I am aware of people looking and talking about Maddy (I know maybe they could just be talking about how gorgeous she is though). I have thought that maybe it wasn't so noticeable to others that Maddy was "different" - but I know that as she gets older it is more and more obvious to others, particularly to other people who have children of their own and know what a baby's proportions are meant to be. (On a completely unrelated sidenote, since having Maddy, I have noticed that most baby dolls have Maddy's proportions. Maybe the doll manufacturers know just how adorable babies with dwarfism are - they are SO cuddly - and that's why they make baby dolls with dwarf-proportioned arms and legs rather than "average height" proportioned arms and legs!!)

I know that the experience was the first of many. I know that as Maddy ages, many people will approach her or me and ask questions about her size. I know that these experiences will vary in the level of tact and some may be even outright rude or discriminatory - but I'm so glad that we had such a pleasant first experience :)

Home Sweet Home

2011-04-22T21:58:00.001+08:00

I would LOVE to do a long update with lots of pictures and stories about how absolutely wonderful it is to be back in Australia, but that will have to wait for another day when I have more time. I have been spending all my time with my family and haven't been on the computer much since we got here.

Our trip back went quite well. As we were getting onto the plane, we had one very upset girl - "I don't want to go on the plane! I want to go home!" - we had to drag Lana onto the plane, kicking and screaming. As we were landing, we had one sick girl (me) who had to use those little paper bags that airplanes are famous for. And besides that, we had absolutely no other incidences. Maddy was a perfect angel on the flight and we didn't need the oxygen :) We weren't expecting her to need it and she coped with the flight better than all of us. It continues to amaze me how healthy she is - all three of us; Bernard, Lana and myself have been knocked around a bit by this cold, but it hasn't even touched Maddy. She has literally been the healthiest person in our family ever since she came home from the hospital (and even most of the time she was IN the hospital, she was healthier than us as well!!)

I'm so thankful to be back here in Australia and we have been having lots of fun doing things that we would never do in Hong Kong - we've been to the beach (although it's too cold for swimming), sat on the grass (I will HAVE to post Maddy's reaction to that, it was hilarious!), seen a few horses and cows, and tonight we caught a fabulous sunset off my parents' balcony :)

I will try to update more during our trip and hopefully put up a few of our FANTASTIC photos - but for now, I just wanted to update and say that we made it back safely and soundly :) And we are enjoying every minute of it!!

Nearly there...

2011-04-17T21:24:00.000+08:00

We have two days before we fly back to Australia and this past week has been very busy getting ready to go. In addition to that, Bernard's been working longer hours than usual - getting home around 8pm most of the week, plus he had to work on Saturday as well. We shouldn't complain though because for Hong Kong, there are many many people who work much longer than that on a daily basis!

I just wanted to write one more post before we left - I have a few more pictures I wanted to add that I hadn't put up yet (they're a month old as well) - and I wanted to ask for you all to keep us in your thoughts and prayers for a safe trip back! It's unlikely that Maddy will do poorly in the plane (if it was likely, we wouldn't be flying) - but we don't really know 100% how she will be until we're in the air. In case of emergency, we do have the oxygen available for her, but of course we'd prefer not to use it! So please remember to pray for us on Tuesday that all goes smoothly, and that the two girls will be angels for us and we don't have any unexpected emergencies :)

Firstly - some pictures from Playtown (be warned, that place has one of the most annoying websites with loud, bouncy music ;) ) - it is a great indoor playroom here in Hong Kong. Maddy LOVED this bead table, and with the little chairs, it was the perfect size for her :)

Secondly - last week we went to the park and Maddy loved watching her sister play from her stroller :)

Holding onto MORE stuff!

2011-04-12T23:21:00.000+08:00

One of the areas of development that has been very hard for Maddy has been the use of her hands. In January I blogged about the topic in this post - Holding onto... STUFF!

It was really only back in January when she was five and a half months old that she was just beginning to hold onto any object at all. Back then, she would hold things for only ten seconds before she lost her delicate grip on it. The objects that she could hold were very limited. I believe that at the time of the previous post, that particular rattle was one of the only things, if not THE only thing that she really managed to hold onto for any significant period of time.

This particular skill of holding an object between her two hands has improved greatly since January and she is now able to hold a much wider range of objects too. Her grip, though improving, is still not fantastic - but it is getting better and better all the time.

One of the best suggestions that I have had has come from some other DD parents, and they advised me that Maddy will need to learn to use her hands as they are in her own way and in her own time. My responsibility is to provide her with the opportunities to learn how to do so by providing her with lots of opportunities to hold many different things of various shapes, sizes and textures. Lana is getting involved in the process too - she loves to give Maddy toys whenever she needs them ;)

Over the past couple of weeks, I have noticed a HUGE improvement in Maddy's motor skills, in particular her fine motor skills. She can now hold objects quite well with only one hand and has also developed a "modified pincer grip" for holding small objects - two actually!

First: the thumb to ring finger pincer grip, demonstrated below:

Secondly: the index finger to ring finger pincer grip: (if you look at the picture of Maddy's hand in the header of this blog - or way back in this post if you prefer, you can see why this works for her - these fingers are naturally very close together, and the middle finger is more "set back" so it's not in the way)

It has been really fantastic seeing Maddy develop these new skills! I never even thought much about "hand function" when Lana was a baby - but seeing Maddy struggle more to achieve these skills makes the milestones SO much sweeter when she gets there!

And you can't deny from the grin on Maddy's face that she feels the same way :)

Counting Down

2011-04-11T13:39:00.000+08:00

I know I have been horribly slack with updating this blog lately! There are a few reasons for that:

1. Maddy's condition is so stable and there is little to report, medically wise. Unlike when she was in NICU and when she first came home from hospital, our doctors visits are much more infrequent now and so there is little "news" in that area.

2. I've been very busy these past few weeks, I don't think I've mentioned on here before but I've started studying again after a few year break. I had actually enrolled in a full time Diploma of Education before I found out I was pregnant with Lana, but pregnancy and parenthood put a stop on that! After Maddy was born, I decided it was better for me to pursue this degree via distance education at just one subject a semester instead of four. Yes, it will take me six years to complete a 1.5 year degree - but I'm doing it! My first assignment was due in today and so I've been working on that a lot over the past few weeks. Putting so much time into writing THAT left me little inspired to write some more on my blog!

3. We are also busy counting down the days until we are flying back to Australia! As a follow up to my last post two weeks ago, everything ended up being approved in time, the doctor corrected the mistake in the form and the airline accepted it and Maddy will have access to oxygen on board (just in case - we aren't planning to use it, even though we had to pay for it!). We will be back before Easter and will be there for nearly six weeks in total which we are all SO looking forward to. This is my first time back since Lana was 10 months old and Bernard's first time back since she was 2 months old. Lana is now 30 months old - so it's been way too long for all of us!

So now that I've finished my assignment, the next week will be full of lots of pre-departure fun for us. We have two mornings of swimming since we need to catch up LOTS of lessons with being away for so long! Both Maddy and I have physio (Maddy may have physio twice), I have a couple of last minute meet ups with friends, a dentist appointment (I wouldn't have scheduled it in now except that Lana was learning about dentists at school and so I think maybe I should take advantage of that and schedule her visit now instead of later) - plus I need to pack for at least three and maybe four of us ;) (although Bernard is awesome in making sure we have all our chargers/cameras/computers etc - I wouldn't know where to start with all that stuff! Plus he's already printed out a list of what we need to pack.)

Before I sign off, I'll leave you with a couple of pictures of Maddy that are already a month old but I'm just slow these days ;)

Planning

2011-03-29T23:59:00.000+08:00

Our travel plans are still not confirmed. It has been a bit of ring-a-ring-o'-roses lately! First of all, it was taking our doctor a while to decide whether or not he was going to sign the medical forms for us. Then I decided to look up prices and decide which airline we would fly - and we decided to fly a different airline to the one whose forms I had given to the doctor, so I sent him the new forms only for him to inform me he'd just filled out the ones for the other airline! After that, it took him another few days or so to fill out the form to the correct airline - at which point I felt confident making a tentative booking and submitting the paperwork to them. I initially was told that we could only hold the tickets for three days without paying but the medical clearance wouldn't be approved for another week at least - but after a bit of complaining and then talking to the right person, they decided to extend that for me so that I'm not having to pay for non-refundable tickets that the airline could potentially tell us that we are unable to use. After clearing the ticket issues up and submitting the medical clearance forms into them, it turns out that the doctor had filled something in incorrectly and we had to get him to fill it out again! He changed and signed his error and I resubmitted it, but the airline has told me that "(the) last email ... requested the Dr to fill a new one instead of correcting the old form. In case they don't accept this, I will request you to fill a new one."

All this back and forthing is a bit frustrating. I haven't yet asked the doctor to fill in a new form as I figure that I should have heard by now if the form actually was unacceptable - the first time around, I heard back in a matter of an hour, so fingers crossed! Our tickets are currently being held until Thursday, and the sale price is only valid until then, so I am hoping and praying that we hear back tomorrow or the next day! The airline may be able to hold the tickets for longer but I am unsure if they can keep the price the same for us - and if I compare to other airlines, they could go up by 40% after this sale!

I am fairly confident that in the end, everything will go as planned. Bernard has already put in his leave from work and I'm already planning what to pack and the logistics of it all.

So we SHOULD be back in Australia from Easter until the end of May! About six weeks in total. We all really need this break, so please help us pray that all the paperwork lines up and that Maddy will be able to fly safely :)

Genetic Alliance

2011-03-29T23:39:00.000+08:00

A couple of weeks ago, I was contacted by someone from the non-profit organisation Genetic Alliance. I presume that this person came across Maddy's blog and invited me to participate in a survey they are currently doing. They are surveying families with children with congenital conditions that were diagnosed either prenatally or in the first year of life. They are surveying not only parents, but also other relatives and caretakers too. I know there may be other families who are reading this blog who may be interested in this survey - my opinion (and one of the reasons why I started this blog) was that as we share our experiences, hopefully we can support some other families who are yet to go through the same issues!

If you are interested in the survey, you can read more about it here.

Eating and other news

2011-03-16T17:57:00.000+08:00

We first introduced Maddy to solids last month. It has been a long process for Maddy, I think mainly complicated by the cleft palate. For the first few weeks, she would just spit the food out. Also, the food would often go up through the roof of the mouth into the nasal cavity causing her discomfort. She would then sneeze and all the food would go out her nose (and THAT can't be pleasant!)

I did a bit of research online trying to learn about how to successfully feed babies with cleft palates their solids and got a few good suggestions - one was that it is better for them often if the solids are not so watery, that way they can control it better in their mouths and swallow it instead of it going everywhere. (As an interesting side note, other people suggested making the food MORE watery so that if it goes out the nose, it is not as likely to get stuck and will not cause discomfort - and while that may work for other cleft palate babies, it didn't work so well with Maddy). Another suggestion was instead of feeding her in a sitting position, to feed her at a bit of a recline so that gravity helped the food to go to the back of the mouth where it could be swallowed. Both of these tips seemed to help Maddy a little, but we were still struggling.

It wasn't until last week that we had another appointment with the occupational therapist responsible for Maddy's oral motor training that she suggested a particular special needs spoon called the Beckman EZ spoon that we really saw major improvement. This spoon wasn't designed for use for cleft palate kids - but given the size and shape of the spoon, it is very easy to get small amounts into the sides of her mouth where she can easily swallow it. Immediately she went from eating very little to finishing entire bowls of solids! Although she still struggles with anything which has any texture, preferring very smooth purees.

Some mothers of babies with clefts have commented that their children didn't start eating great until after their cleft repairs - but since Maddy's cleft repair will be delayed until she is about two years old, we need to learn to work with it. (I don't want her eating purees until she's two!) The occupational therapist suggested getting a palatal obturator made to close the cleft so she can eat without food going into the nasal cavity, so we have a referral to dentist for that.

In other completely irrelevant medical news, last week we had the MRI follow up appointment with the orthopedic doctor. We got there and he said "I'm sorry but we don't have the official report yet. I'll have to take a look at the slides myself", then after another 20 minutes of him playing around on his computer, he said "I'm sorry but it looks like the network is down so I can't get a very clear picture of the slides!" It was a bit frustrating, particularly after waiting for over an hour for that news! But the good news is that from what he COULD see, and what he could tell from doing a physical examination of Maddy's hips, they appear to be quite well-engaged now so we don't need to do anything different with them (unless the MRI showed something concerning, which he said was unlikely). We don't need to follow up with him for another six months, but when we do follow up, we will be taking another complete set of X-rays then.

And for completely irrelevant NON-medical news, I'm still waiting on the doctor to get back to us about the medical clearance for flying back to Australia. He has the forms that we need to submit to the airlines but hasn't had the time to really go through them yet. Until he does that (or at the very least, we know he will - or we know someone else who will), we're not booking tickets. But we're still hoping to be back maybe around Easter time until the end of May. But nothing is set in stone yet...

And here are some pictures of Maddy's first swing at the park :) (doesn't she have the CUTEST leg dimples??)

Maybe not stuck after all?

2011-03-08T14:09:00.000+08:00

In the last few weeks, I have been looking into holiday options that didn't involve flying. I had the brilliant idea of booking a cruise back to Australia and then cruising back to Hong Kong, hence taking the risk of flying out of the equation. However on discussion with Bernard, we came to the conclusion that it just wasn't a viable option, we'd have to be out of Hong Kong for five months since there are no regular cruises between HK and Sydney - and it is just too long for Bernard to be out of the office.

On Saturday, I was feeling pretty disappointed about all that - and since I've been a little confused about the whole "Maddy can't fly" thing, I decided to write to Maddy's NICU pediatrician for clarification on a few issues. To make it a little simpler, here was my email:

Dear Dr (name),

I wanted to ask you some more questions about Maddy and flying. I realise that via email may not be the best way to ask so if you prefer, I can call you or make an appointment to see you some time.

Is the main concern about flying Maddy's laryngomalacia? My understanding is that she has no problem with her lungs (although perhaps a smaller than average lung capacity?), only with her airway - is this correct?

If so, why is the reduced pressure of an airplane cabin a risk for her? Wouldn't it be an issue if the pressure was increased (ie, if she was going scuba diving) rather than being decreased?

Also, what medically needs to happen in order for Maddy to fly? Are you waiting for her to be stable for a longer period of time? Or are you waiting for the laryngomalacia to be completely better before saying that she can fly?

Thank you for your time,

Nicole

A day later, I got this response:

Hi Nicole,

There is actually no definite guidelines on flying for patients with upper airway obstruction. I agreed that Maddy's lungs are fit for flight, it is just that the airway pathology has not yet been clearly defined. Probably the reduction in airpressure to 8000ft and the reduction in partial pressure of oxygen should pose not much risk to Maddy. The reduced humudity may have some effect. Please just make sure she get her medical record clear and present this to the airlines to see if they need to prepare anything specific (they have additional oxygen via nasal canula). The other main concern for them is whether their flight would be affected.

The chance is Maddy should be able to fly uncomplicated. There is no particular risk of decompensation, but just in case Maddy gets some more airway problem (just like when she is on land) e.g (1) when she vomits (because of the change of airpressure, they have middle ear discomfort etc), (2) when the sputum becomes thicker due to the reduction in humudity (20-30% on board), the crew are confident to deal with this.

In summary, I would support you and Maddy to take the flight earlier than what I have recommended you, provided good preparation has been made. It will be safe.

Best regards,

Dr (name)

So with this new information, we have been looking into the possibility of coming back home soon! Although just to be safe, we need to organise medical clearance forms for Maddy so that the airline will be aware of her medical issues. The doctor has said that likely the only thing we need to prepare for her is that we have oxygen available, just in case, although he says that it is unlikely that we will need it.

There have been multiple emails going back and forth between me and this particular doctor and I don't know whether it is due to language differences, or maybe my keenness to return home is clashing with his precaution - but I still do not fully know if and when we will actually get on a plane and return back to Australia. I need to arrange for someone to actually fill in the medical clearance forms for Maddy, and then for the airline's medical team to approve them. We need to book the flights, arrange leave for Bernard from work and for Lana from school (although she doesn't need "approval" so much, but I want to try to work something out so that we don't have to pay the monthly fee for the month that we are planning to be back home). And I'm trying to make sure that we do everything in the right order so that IF for some reason it doesn't work out, we aren't stuck with flights that we can't use or anything like that.

Right now, I need to get Maddy's medical records from the hospital. Really, I should have gotten them when she was discharged but I didn't for whatever reason. Then I need to find a doctor who is willing to give Maddy the medical clearance. I hoped that our pediatrician would be able to, but he seems to be wanting us to go back to the ENT and have her sign off on it instead of him. But last time we were at the ENT and asked her, she also referred us back to the pediatrician so I'm hoping that one of them will be willing to "put their money where their mouth is" so to speak (both have said that flying should be safe for Maddy already)! If not, I'll have to wait until we get Maddy's medical records before we can take them to a private doctor for their opinion, which will make the whole process take longer.

So I'm trying to not get my hopes up too much about this - but I REALLY REALLY REALLY want to get home...

And just because every blog should have a picture, here you go ;)

Socialising

2011-03-04T21:10:00.000+08:00

Maddy and Luke - Luke is 2 days older than Maddy and already 20cm (8 inches) taller.

I arrived in Hong Kong over four years ago knowing nobody. Even through my first year here, I didn't really make many friends. It wasn't until I fell pregnant with Lana and joined a "Due Date club" that I started meeting a lot of other people who were in a very similar situation to myself. I've always said that having Lana was the best thing I could have done for my social life here in Hong Kong ;) Today, some of her friends' mothers are my best friends here.

When I first found out I was pregnant with Maddy, one of the first things that I did was to find another "due date club" of other mums due around the same time as me. We were meant to have our first meeting just before Christmas when I was about 8 weeks pregnant but for one reason or another, I couldn't make it.

Before the second meeting, I had found out about the complications in the pregnancy and at the time, losing Maddy was a very real possibility. The last thing that I wanted at that time was to go and meet other excited pregnant mothers who were actually going to be bringing babies home from the hospital while I had to plan a funeral! I was still included in the mailing lists but I couldn't bring myself to meet any of them.

I don't think that it was until I was about 30 weeks and we knew that Maddy most likely had a non-lethal form of dwarfism that I got up the courage to meet with this mother's group - and at first, it was very emotional for me. I was still "mourning the loss of my healthy child" in many ways, but I found that many of these mums already "knew" me through this blog. They had been following our story and were so supportive towards me.

During Maddy's first four months, I only met up with the other mums and babies once or twice. It felt somewhat strange going to these gatherings without a baby - and besides, I was so busy with going up the the hospital that it was hard to make time for social things anyway!

Since Maddy has been home, we've been making up for lost time though and trying to meet up with them at least once a fortnight. It's so great for Maddy to play with other kids her age - I figure that she will need to live in the real world and make friends her age sometime - so there's no better time to start making those friends than right now :) And in the process, I'm making some great friends too.

Plus, how cute is the picture of Maddy with Luke?!!

February 28 - Jeans for Genes Day

2011-02-27T00:15:00.000+08:00

When I was growing up, the school that I went to participated in the annual "Jeans for Genes" day. I had no idea what it was about at the time - everyone wore denim and had to pay $2. It was some sort of fundraiser for something to do with genes, but I wasn't exactly sure what or why. But I didn't really care since it was a good excuse to be out of school uniform! (I went to a school which was very strict on uniforms. It wasn't a "dress code", it was an actual uniform. A plaid dress with a little tab tie and all).

Turns out that this fundraiser is still going on 20 years later, renamed as "Rare Disease Day: Wear that you Care" and it is a fundraiser for over 7,000 rare diseases such as Diastrophic Dysplasia which affect 250 million people, mainly children, around the world. Why mainly children? Because many of these rare diseases have life expectancies of only twenty years. Or ten. Or five. Or not even one year. We are so fortunate that Maddy's life expectancy should not be affected by her rare disease.

Rare Disease day is coming up on Monday 28th of February, so be sure to sport your denim! And if you can, you can make a donation to help research and cure some of these rare diseases.

Visit The Global Genes Project for more information on Rare Disease Day.

To make a tax deductible donation, click on your appropriate country: Australia, USA, Canada, Hong Kong - or to find your own country, search for it here.

In future years, I'd love to organise a group for World Rare Day - maybe at the girls' school, or at Bernard's work or something like that. This year I liked the idea, but I didn't have the motivation to put wheels on it. Ah well, there's always next year :)

Stuck

2011-02-24T15:04:00.000+08:00

I've been avoiding writing this post for a few days now. I was so hoping that at our appointment on Tuesday that the doctor would approve our plans to travel back to Australia. A couple of months ago when Maddy was discharged, he told us to not travel for a couple of months. Since then, the ENT said that Maddy would most probably handle being in a plane. In addition, her breathing is getting better and better all the time - she rarely has the stridor any more now. But it wasn't to be - the doctor told us that we should put our plans to travel on hold for another 3-6 months at least.

Disappointed doesn't even really begin to describe what Bernard and I are feeling at the moment. You see, last Easter we were planning to go to the US but had to cancel it because of my "high risk pregnancy". We thought of going to Australia in the pregnancy instead but it didn't work out. Since Maddy was born, we were initially wanting to go back in October for Lana's birthday, and then after Christmas and into January, and more recently we were starting to think about March, but each time it has fallen through. We haven't had a good break for over a year. Bernard hasn't been back home for over two years. Lana and I haven't been back for eighteen months - last time we were back, she wasn't even walking yet!!

The doctor admitted that chances were that Maddy would most likely cope well with being on a plane - but since they know she has had airway issues, IF there were any complications on the flight, her airway could completely close up and there is absolutely nothing they could do for her on a plane. Oxygen wouldn't help because it wouldn't be able to get into her lungs anyway. It could be a life and death situation. So he advises that it is better to wait a couple more months and then possibly repeat the CT scan to reassess her airway and keep our plans to travel on hold until then. He also advised that we should probably do a couple of short-haul flights before we go back to Australia (a nine hour flight) as well.

I've already had six months experience with this doctor and we have butted heads a bit over the time. I haven't always agreed with his management of Maddy's care when she was in NICU. I still believe that she could have and should have come home between two weeks to a month old and IF she had any problems after that, we could have brought her back. This particular doctor is VERY cautious and conservative. I asked him on Tuesday "If we had another child with DD with similar symptoms to Maddy, how would your care of that patient be different now that you have learnt more about the condition from Maddy?" and his response? "It would practically be identical. There may be a chance that if the feeding went well, we may let the child home slightly earlier if the parents were CPR trained, but there is very little we would do differently." It really makes me think that if we DID have another baby who also happened to have DD, I would prefer to just move back to Australia. I think that the NICU situation there would be much more to my liking, and I'd rather be stranded there than here as well if we were unable to fly!

It is so frustrating to be stuck here, and this issue really brings back a lot of my frustrations with NICU as well. When Maddy was in NICU, it felt like her release just kept getting pushed back later and later. There were times when it felt like there was never any plan to release her. And each time that this doctor tells us "Wait another couple of months to fly", it feels like he'll probably NEVER say she can fly.

In the meantime, we have SO much time off that Bernard can take (over 7 weeks) - and so little that we can do with it. There are not that many places you can go to from Hong Kong that don't require flying. We have already been to Macau and we spent a couple of days at Disneyland too. We could go to some places in China, but the places that are close to Hong Kong may not be so clean and child-friendly. There are no cruises that depart and land in Hong Kong - but we could possibly do two cruises back to back - say one from HK to Singapore and another one back to HK.

Being stuck here is really hard for both Bernard and I. And for me, it makes me realise more and more that Hong Kong is not "home" for me. I do like it here and we have made some wonderful friends here (some of who have already moved back to their homes, and others who are leaving HK shortly). If it was completely up to me (and it's not), on some days (but not every day), I would love to just call it quits here and move back to where I DO call home. But that plan is not in our immediate future at the moment.

We have another appointment on June 2 with the respiratory team, including the ENT, the pulmonologist and a couple of other doctors that I can't remember right now. I can and will ask them again about flying then - but my past experience with them says they will likely just defer that decision to our neonatologist. Our next appointment with him isn't until July 12. So chances are, we may not be going anywhere before Maddy turns one.

Growing Up

2011-02-21T15:36:00.000+08:00

In the past week or two, Maddy has started doing two new things:

1. Eating solids. She's still not too keen on the idea. She spits out more than she swallows. But it's a start, and I know she'll get better. We're currently just trying once a day, but I think I might increase to twice, just so that she gets a bit more practice.

2. Sitting up! She can currently sit completely unassisted for about 15 seconds, and improving every day. She's not at the stage yet where I can leave her sitting and playing by herself - not unless she's surrounded by cushions anyway, but she really likes being upright instead of laying down.

I know this blog has been a bit sparse on pictures lately, so I hope you enjoy these ones :)

525,600 Minutes

2011-02-18T00:38:00.000+08:00

Five hundred twenty-five thousand six hundred minutes,
Five hundred twenty-five thousand moments so dear.
Five hundred twenty-five thousand six hundred minutes
How do you measure, measure a year?

Today marks exactly one year from Maddy's diagnosis of Skeletal Dysplasia (the broad term that covers all kinds of dwarfism, both lethal and non-lethal). What a year it has been! I've written so much about the past year in previous posts, such as this review of 2010 (which wasn't that long ago really) so I'm not going to write another one of those. I've been remembering though, thinking of how far we have come, how much our lives have changed, and how blessed I have felt through it all. The past twelve months have included six months of pregnancy, four months of NICU and only two months of Maddy being home with us! And next Thursday will be my first "anniversary" of this blog :)

Today, Maddy had her MRI. In some ways it was easier than I expected, in other ways it was harder. Maddy was very settled and managed to sleep pretty well in the time before her appointment. I was a little worried that she wouldn't be able to sleep and would be cranky and hungry, but she did really well! The doctor inserting the cannula on the other hand didn't do so fantastically! It took at least four stabs and about 15 minutes before he managed to find a vein. I was about to ask him to stop and find someone who had more experience with babies! Poor Maddy did not like that experience one bit - from that time, she was pretty much screaming inconsolably for half an hour until it was time for her to be sedated - and even then she was still whimpering in her sleep for a while.

After that though, everything was fine. Maddy was knocked out pretty good. The sedation is meant to wear off after 30-60 minutes, but Maddy slept for two hours! The MRI went fine, but it will still be a couple of weeks until our orthopedic appointment to find out the results and what, if anything, needs to be done for Maddy's hips.

Anyway, back to the original topic though - I just wanted to say thanks to all of you, my readers/followers who have supported us SO much over this past year. I've had emails and messages from so many people, people who I wouldn't have even expected to know or care about our situation. I've made countless new friends who have helped us along the way. When I started this blog, it was mainly so that I could pass the information about Maddy on to whoever wanted to read it (and hopefully in the process, I wouldn't have to tell it over and over again!) - but I wasn't expecting to receive so much love and support from all you guys. This past year has been a crazy journey for us - but thanks for being there with us through it all :)

A bit of Disney Magic

2011-02-15T22:32:00.000+08:00

At Disneyland, I saw a beautiful girl of about fourteen. She was waiting for the Cinderella's Carousel with her mum and dad. As the gate opened, her dad picked her up out of her wheelchair and helped her up onto a horse. A pretty, pink horse with his mane flowing in the imaginary breeze. And as I watched, tears came down my face. A year ago, I might not have thought much of the scene, or I might have looked away, not eager to be seen looking at someone who was disabled. It's hard to remember exactly what I would have done, that was a lifetime ago.

Instead, I watched. I was struck by the love in this family, the tender way that the father held his daughter and supported her as she went around and around. I was moved by the grin on the girl's face, she was obviously loving the ride. And I was happy with them - they were obviously having the time of their lives there.

I felt no pity for her or for this family. They obviously weren't feeling sorry for themselves. They were having a wonderful holiday together. I wanted to run up to them and tell them what their devotion to each other meant to me, how I'm a new member of this "special needs parent club" and I'm still learning the ropes - but I just watched in silent appreciation. I will remember her with fondness - the princess who left her throne for a while to ride a horse instead.

When Parents Exaggerate about their Kids

2011-02-13T23:11:00.000+08:00

I will always remember Lana's six month developmental check-up. The nurses wanted to check her pincer grip, so they gave her a Cheerio to hold. Lana held it between her index finger and her thumb, but she wasn't using the fingertip of the index finger to hold it, instead she was using the flat part of the index finger. The nurse kept offering the cheerio over and over, and each time, Lana held it in the same way. I could tell that Lana was failing this part of the test - so what was my maternal response?

"She always uses her fingertip for the pincer grip when we're at home!!"

But did I know whether or not that was true? I don't think I had even observed closely enough to know. I just wanted to say "Stop being petty, my daughter is holding the cheerio, who cares what part of the finger she's using - and how dare you fail her!"

I've thought about this many times since this occasion. Probably part of it is my conscience, I typically don't "lie" - and as I observed Lana over the following weeks, I noticed that the nurse was correct, Lana wasn't using her fingertips. Another part of it is that I was surprised by my own maternal urge to exaggerate Lana's abilities in order to make her look better. I've observed this instinct in other parents as well, not just in myself, and I think it's probably pretty universal.

But now that I am the mother of a child with special needs, my response in this kind of situation is completely different. With Lana, my urge was to say "My daughter is advanced for her age in every area. Can't you see how awesome she is? And if you dare offer any criticism, I'll fight it tooth and nail.". With Maddy, my urge is more "I know that Maddy is not like other kids - and when it comes to therapies, she can benefit from whatever help she can get. So where do I sign up?" With Maddy, I think nothing of telling nurses and doctors "Maddy's grasp is extremely poor, she still doesn't do well on her tummy, she can't sit yet and she only can roll from back to stomach in one direction." I know that with their help, Maddy can succeed in these areas faster than without their help.

I'd like to think that I've learned something from having Maddy - and that is, it's not a bad thing to be aware of your child's strengths and weaknesses. And if your child does have weaknesses in a particular area, it's for the best to be honest about them and if help is offered to you, take it for their benefit. If someone (particularly a medical practitioner) points out a weakness that you were previously unaware of, they're not being critical, they're trying to help. So it's not wise to get defensive (and boy, I have a lot of experience with getting defensive - just ask my husband!), the best thing is to listen to their concerns and take them on board.

I was actually in a similar situation with Maddy last week. We were at the Cleft Palate team appointment and one of the doctors asked about what sounds Maddy makes. She really only makes guttural sounds like "grrrr" along with vowel sounds like "oooohhh" and "aaahhh". She doesn't really say much of "babababa" or "dadadada" yet. I've wondered if that could be because of the cleft - although the doctors at that appointment said that it should affect that. It could also be from being socially deprived for four months in NICU - although the nurses did talk with her, just probably not as much as if she were home with us. Or I also wonder if it could be from the laryngomalacia - that affects the voice box so maybe it could affect speech development. But one of the doctors at the cleft palate team appointment said "Maybe she's developmentally delayed". My mothering instinct reared it's head and responded with "With this syndrome, she SHOULDN'T be!"

Maddy will most likely need speech therapy when she gets older, just from having the cleft palate, and so we will be able to deal with whatever speech issues she does have. But I will keep an eye on her speech development milestones and ask the pediatrician about them when we see him on the 22nd. I've learnt now that it's ok to ask for help when we need it, and that sometimes I need to put my mother's pride on the shelf and really look at what my kids strengths and weaknesses are so that I can help them with those weaknesses in whatever way I can :)

Sophia and Lily

2011-02-12T15:52:00.000+08:00

As I've been blogging, I keep finding more and more blogs that I love reading. There are two blogs that I have been reading lately that have really impacted me and I thought I'd share them with you. They are both a bit heart-breaking as both of them have lost little ones in the past few weeks, so go on over and offer them a bit of your support.

The first blog, "The Dinkel Family", I found about a month or so ago. At the time, the couple were expecting their first child, a little girl Sophia diagnosed in the womb with Skeletal Dysplasia (the same diagnosis as Maddy). Towards the end of their pregnancy, the doctors told them that Sophia had a lethal form of Skeletal Dysplasia - and I was hoping and praying so hard that little Sophia would defeat the odds. I know MANY little babies with skeletal dysplasia who were given lethal diagnoses but when they were born, it was obvious that they would be able to survive. But this was not the case for Sophia. She was born and passed away soon after her delivery. This was my worst fear during my pregnancy with Maddy and reading Sophia's story has brought back some of our dark times but also reminded me of how blessed we are that Maddy has a non-lethal form. Please go over to the Dinkel's blog and give them a bit of love and support.

The second blog that has been impacting me lately is called "Booferd". This family has just lost their daughter, Lily, to the same chromosomal disorder that their eldest daughter had. The older sister, Charlotte, lived for nearly four years but Lily lived just a few months. One reason why this blog has really impacted me lately is because like this family, we have the possibility of our future children having the same condition that Maddy has. But unlike this family, the consequences of Maddy's disability are comparatively soooo small and insignificant. Yet for me, the decision to have more children is now a much more difficult one now that DD is in the picture.

Another reason that I love this family is because of Lily's name. Quoting from the blog, When we chose Lily's name it was to remind us that Lily was in God's hands and He would care for her, just as He clothes the lilies of the field. Again, this morning I was enjoying all the beautiful flowers--especially the Lilies we have received, and I thought that Heavenly Father doesn't let the lilies stay long on earth, but that doesn't make them any less special. In fact in some ways it makes them more special. He lets them bloom on earth for a short time and their beauty is not wasted. Lily's life was not wasted. Lily was worth it.

Our girls both have similar names, their Chinese names were named after the same verse in the bible. Lana's Chinese name, "Si-Lan" literally means "Contemplating Orchids" (orchids are my favourite flower and were the flowers we used for my wedding bouquet, six years ago today!) and Maddy's name, "Si-Hei" means "Contemplating Buttercups" ("Hei" is also very similar to the Chinese word for "Hope", kind of like a "Hope flower"). They are based on the verse which says "Consider the lilies", and both of their names are a reminder to us of God's care and protection towards us, and how if He looks after the beautiful flowers, how much more so will He look after us! When we named Lana, I had no idea that our parenting journey would take us on such highs and lows, and just how deeply this scripture would speak to us. But through it all, I realise just how much He HAS been looking after us and how blessed we are to have two beautiful girls.

Please check out the blogs of Sophia and Lily's families and give them a bit of support during this difficult time. And while you're at it, remember to thank God for the ways He has blessed you and looked after you too :)

Medical Update

2011-02-12T00:34:00.000+08:00

This week, we were very busy with various appointments. We had three different therapies and one doctors appointment.

We started the week out with physiotherapy on Monday and Maddy is doing pretty well there. In fact, she showed us her brilliant skills when this week she rolled over for the first time! At six months old, that's a little delayed but considering a) her limbs are so much shorter than the average baby, and b) she's spent two months with her legs pretty much immobilised by the Pavlik harness, I think that's pretty great!!

Tuesday was our one day off this week, and Wednesday we had some Occupational Therapy. Maddy is still struggling to use her hands, and it frustrates her a lot. She can pick things up, as seen in this previous post, but she still struggles to hold onto things for any period of time. We have been going to the Children's Hospital for OT but they will refer us to a hospital that is closer to us for continued follow up for Maddy's motor skill development.

Thursday saw us back with another Occupational Therapist, this time for the oral motor training, to see how Maddy goes on solids. I waited until this appointment to introduce solids for Maddy - I knew most likely she would be fine since she drinks her milk very well now with no choking, but I figured better safe than sorry. And Maddy was much like any baby, I think. At first, she was curious and somewhat interested, she swallowed the first few mouthfuls well but then tired of the experience when some cereal got into her nose through the cleft palate. Her cleft won't affect her eating solids at all, but she will have more food going into the nasal cavity and so there can be a bit of discomfort, but she'll learn :)

Speaking of the cleft, today we had our first appointment with the cleft palate surgical team. I was looking forward to this appointment as it would give me some idea as to when Maddy's palate repair surgery would be. Palates are repaired at different times in different places but here in Hong Kong, the palate is typically repaired between 9-12 months old. Although since Maddy has had airway complications, they will delay the surgery until she is between 18-24 months old instead. When the cleft is repaired, it obstructs the airway a little so it can exacerbate any airway issues, so by waiting until Maddy is bigger and stronger, the risks are lower. In some ways, I'm a little disappointed because I tend to be impatient, I know it needs to be done so I just want it over and done with already. Also by waiting longer, it can lead to more speech complications - and if Maddy is anything like her big sister, by the time she's 24 months she could have a vocabulary of hundreds of words and be able to communicate in full sentences! But I know I need to be patient because it is really in Maddy's best interests to wait. Ultimately breathing is more important than speaking, right? ;)

Next week will be another big week for us. Monday and Tuesday, we have some more "staycation" plans, then on Wednesday we have more physio (I want to ask them about the possibility of transferring Maddy's physio to the hospital closer to our home as well - we're travelling to the Children's hospital for that as well).

Thursday, the 17th, will be a big day for us all. For one, it is the first anniversary of when we first heard the words "skeletal dysplasia" - the day when we had scheduled the amniocentesis that we didn't end up having, the day that we first heard the news that Maddy might not make it. It's been a bit emotional, remembering all that was happening this time last year. Bittersweet, really.

Then of all things, the hospital had to schedule an MRI on the same day this year! I'm not really looking forward to it - the MRI itself is scheduled for 3pm, but Maddy has to fast from 11am and we have to be admitted to the hospital at 1pm for the preparations. I know Maddy and she probably won't be able to get much sleep in between everything else, and usually if she's cranky but cannot sleep, a feed will settle her - but we don't have that option. I joked with someone that I'll probably be counting down to when she's sedated ;) So if you get a chance to remember us, please pray that Maddy has a fantastic morning and eats well before 11am so she is settled at the hospital rather than hungry, tired and cranky! The MRI is primarily to examine her hips and to see if we need to do anything more to manage them at the moment.

The one appointment now that I'm really counting down to is on the 22nd. We will follow up with the pediatrician who cared for Maddy in the NICU. I'm sure that most of the appointment will be very routine, but I want to ask if Maddy is safe to fly now. I think she SHOULD be ok now, the ENT said that she most probably would be fine in a plane - but I want to know this doctor's opinion before we go booking anything. Both Bernard and I are in desperate need of a break, and as soon as we get the news that she is ok, we'll probably be booking flights back to Australia that afternoon! Bernard hasn't been back for over two years now, and for me it has been a year and a half. Last time Lana and I were there, Lana was ten months old and not walking yet! So here's hoping that March will see us back in Australia :)

And that's all the "medical" news I have for now! Until next time...

Dwarfism is not just about being short

2011-02-07T22:30:00.000+08:00

When I talk about Maddy's condition to other people, one of the most common miss-perceptions that people seem to have is that they think that dwarfism is just someone who is extraordinarily short. If I look back a year, I may have thought the same. I don't know what I thought really, I guess I had never thought about it much at all. And I guess probably also many people reading this blog haven't either. I know that most of the people I know have never met someone with dwarfism before, and those people who DO know someone with dwarfism probably met me through Maddy's dwarfism so that doesn't really count ;)

There are many, many kinds of dwarfism and each of them have their own serious complications. The most common form, Achondroplasia, not uncommonly leads to life-threatening brain stem compression requiring emergency brain surgery at a young age. Cartilage Hair Hypoplasia (the form of dwarfism that Verne Troyer, best known for playing Mini-Me in the Austin Powers movies, has) leads to immunodeficiencies sometimes needing a bone marrow transplant. Osteogenesis Imperfecta leads to reduced bone density that means that people suffering from this disease can have hundreds of breaks in their childhood. All of these things are extremely serious conditions - but yet when most people think of dwarfism, they usually have no idea about these complications.

One of the most severe complications of Diastrophic Dysplasia is probably the possibility of cervical spine issues. If there is neck instability or severe curvature, damage to the spinal cord can occur at a very high location, possibly leading to paralysis or even death. If these issues are detected, spinal fusion is often necessary to prevent damage to the spinal cord, but that is not a surgery without serious risk. So far, Maddy's neck looks good so fingers crossed, we can dodge that one.

There are other complications with DD that we cannot avoid, and one such issue is very early degeneration of the joints, much like arthritis. One of my friends who has a five year old with DD was recently told that his hips look like the hips of a sixty year old with arthritis - but you can't just do a complete hip replacement on a five year old. He is in pain because of his joints.

Because of the issues with their joints, most kids with DD need an electric scooter or a wheelchair to help with mobility. They can walk a bit - but they can't walk for a whole day at the mall or go hiking up a mountain or anything like that. Some people with DD could never walk independently, although they do manage to get around for a long time with crutches or walkers. With the knowledge that a wheelchair is probably inevitable for most people with DD sooner or later, it can be a hard thing to know when to encourage the little ones to get around by themselves and when to encourage them to use a mobility device. In the words of one of my DD mum friends, We thought it best to "save" some steps now so that she would be able to use them "later".

A side issue to this is, a wheelchair is NOT a horrible thing. For people who need wheelchairs, it gives them so much more independence than they could have without it. Most kids with wheelchairs love their new-found freedom and think their wheelchair is the coolest thing in the world! So if Maddy does end up needing a wheelchair, it's not something that people should feel sorry for her about, it will be like a new shiny bike or scooter to her and I know already that if it comes to that, she will love her chair! So don't feel sorry for us ;)

There are things that you can do to help with the joint issues - stretching, therapies, swimming is a great exercise since it doesn't involve any weight-bearing (I'm planning on starting Maddy on swimming lessons soon). Some of my DD mum friends recommend various supplements such as omega 3 and glucosamine helpful. My dad suffers from arthritis and also finds these to be helpful for him as well.

Recently, I've had a few questions/comments about "How is Maddy recovering?" and "I'm sure that everything will be normal and that she'll grow out of it", etc. Things like this completely floor me and I have no idea how to respond to it! (any suggestions??) For one, this is not something that Maddy will grow out of, and Maddy will not "recover" from it. Instead she will need to learn to adapt. Some people can't seem to process that Maddy will have long-term implications that will need to be monitored for the rest of her life, and want to "normalise" her condition by saying "Oh I knew someone extremely short once" or something of the kind. Maddy will never be just like everyone else (not even a very short person), but that doesn't mean that her future is bleak.

It's hard to explain Maddy's health to others - on the day to day aspects, she is extremely healthy and has been ever since she was two weeks old. Even when she was in NICU, she was as healthy as a horse. She's had colds being Winter and all, but she handles them fabulously - probably even better than Lana did at the same age. Some people have the misunderstanding that she is or was sick but that hasn't been the case. Yes there are things that are less than ideal in her little body but really, they are "structural" things and so far, she functions fine with them as they are.

Yet in spite of this, there are long-term issues for Maddy that we will need to continually monitor. No one can say yet exactly how everything will end up for her, so we will keep an eye on the issues that she does have and hope for the best. Whether or not she needs a wheelchair, whether or not she does develop issues with her cervical spine and needs spinal fusion. All these issues are so much greater than how tall she will be. And I hope and pray that whatever happens with the "structural" aspects of Maddy's unique little body, that she will always be as healthy and as happy as she has been for the past six months :)

Holding onto... STUFF!

2011-01-27T10:14:00.022+08:00

One of the milestones that is hardest for Maddy to reach is her grasp. Her fingers simply do not bend at all the joints, and the joints that she CAN bend them at are very stiff. She cannot make a fist (and never will be able to), she cannot even touch her fingers to her thumb (she will be able to do this in time with lots of practice! We physically have to do stretches on her fingers to help her improve her range of motion). I watch her sometimes and she seems to get so frustrated that she can't pick stuff up like she wants to. She bats away at things though and reaches (obviously with her short arms, her reach is not very far - which is a blessing in disguise when I'm eating dinner with her on my lap!) - sometimes she manages to hook something onto her fingers and can pick it up briefly with one hand.

Recently, she has been able to hold things a little better by pushing it between her two hands. It needs to be something the right length, and not too heavy, since she doesn't have a great grip on it. She has loved her new-found freedom and this rattle pictured below is the perfect size and shape for her :)

The Bumbo Effect

2011-01-26T22:14:00.000+08:00

Lately, Maddy has enjoyed sitting in the Bumbo chair. We can put the tray on and put a few toys there and she's quite happy playing for a while. In fact, I think I'm going to return her feeder seat that we hired from the hospital soon because the Bumbo is just as good for her now - in some ways even better since we can add on a tray. Although it does have one unexpected side effect:

Each time we put her in, stuff seems to leak out of her from all possible exit points creating a lovely mess (pay special attention to the right foot in case you missed it ;) ). Literally - every single time!

(Sorry Maddy for this particularly unflattering photo of you!!)

A not-so-gentle reminder that I'm NOT Supermum

2011-01-23T00:18:00.000+08:00

This week, it has been my turn to be the person most in need of medical attention! For weeks now, since Maddy has been at home, I've been trying to do all the childcare of both girls all the time. I have a helper (something that is very common in this culture) but I've always asked her JUST to do the housework and I'll look after the kids myself. When Maddy was in hospital, I had no choice but to have her look after Lana every afternoon while I went to the hospital, but when Maddy came home, I resolved to try do it all.

I've been trying to drop Lana off at school, pick her up from school and take Maddy to all of her appointments myself. Mothers everywhere else do that right? But then again, come to think about it, mothers in most other places would probably do that with a car and a double stroller rather than catching a tram or bus, walking to the bus stop, up and down stairs, across busy roads with the baby in a carrier and expecting a two year old to walk somewhat responsibly (she inevitably DOESN'T walk responsibly and usually needs to also be carried, or at the very least, dragged as well ;) ).

So on Monday, I was leaving the doctors with Maddy and on my way to pick Lana up from school when it finally happened - I slipped a disc in my back! The pain was excrutiating, I could barely stand, let alone walk (with Maddy still in the carrier), but I managed to get to the school and drag Lana into a taxi before calling our helper and getting her to meet us downstairs. For the next couple of days, I couldn't even hold Maddy, so I HAD to ask others for help. I managed to get in some physio and thankfully, though I'm not quite 100% yet, I'm having a pretty fast recovery.

I'm taking this as a reminder that I MUST look after myself. A couple of weeks ago, I was telling Bernard that I should go back to physio because I could feel my back getting worse - but of course I never got around to booking that appointment until I hurt myself.

When I went to counselling a couple of months ago, one thing that I really got out of it was a reminder that I need to take time out of my busy life to look after myself so that I have the energy and strength to be the best mother I can be for my girls - and so now I'm going to make a point of doing that, particularly when it comes to my back!

So this week, I've been taking it easy. When I take Lana to school, I've been leaving Maddy at home with our helper - and I think it's actually better for Maddy as well, she's napping better during the day and also getting to sleep easier at night. So if there's anything for me to learn from this week is sometimes, in the words of the Fancl ads (I think it's a Hong Kong thing), "Less is More" ;)

____________

In Maddy-news, we've had a quiet week - and next week is also quiet too with just physio and no other appointments until after Chinese New Year. She has a few new cool skills but I'm trying to get some photos so I can post them for you all in the next week or so ;)

In regular family news, over the next few weeks, Bernard's taking a bit of time off and so we're going to do a few more "staycation" things to try and relax a little. I'm looking forward to it all, and hope to be updating about our adventures soon :)

Maddy's friend Kai

2011-01-16T14:02:00.000+08:00

One of the things that I have loved about the internet is being able to connect with many people around the world. I've especially loved meeting other people who also have Diastrophic Dysplasia like Maddy. I've mentioned Chris Errera many times, along with Matt Roloff. There are also other mums with little kids with DD too. One who has helped me a LOT throughout my pregnancy with Maddy and even to this day is Stacey from Grant us a Miracle.

I've been also following the blog of little Kai who is about two years old and SO adorable I just want to squeeze him! You have to go check out this post written by his mum Chelsea, and make sure you watch the video! Kai loves jumping on the sofa :)

That video just totally brightened my day when I saw it :) Hugs to Kai!!

Maddy's Cocoon

2011-01-14T22:57:00.001+08:00

Maddy has this butterfly playmat and Lana often will bump it over. I took this series of photos of Lana wrapping Maddy up inside, and Maddy giving me this "Help Mum!" look and I've been wanting to share them. Hope you enjoy :)

This week in Doctors Visits

2011-01-14T22:37:00.000+08:00

After yesterday's post about Maddy being overtired, we had a very busy afternoon today and I was sure that we would be in for a dramatic evening tonight. We left the house at 1:30 to take Lana to school, then I had to do some shopping (poor Lana had to borrow a friend's beanie because she didn't have her own and was freezing without one!), then we had planned to have a playdate and dinner with some of Lana's friends so we didn't end up getting back home until close to 9! And in the time we were out, Maddy didn't really nap for more than about thirty minutes or so. But when we got home, I put her straight into bed, turned out the lights, turned the white noise up high and sat next to her, not interacting with her, but just replacing her pacifier if she spat it out and was getting cranky. Within half an hour, she was solidly asleep and now I have time to write a bit of a blog about our week. I know my mum's been wondering, she was calling me every other day to ask about appointments ;) Maybe some of you others have been wondering too (or maybe not, maybe it's just my mum who checks this blog five times a day ;) ;) )

This week we had four appointments between Monday and Wednesday, it was all pretty intense! First off the bat was our ENT appointment on Monday morning. The good news is that Maddy's breathing is very stable. I asked the doctor about travelling and she said that most likely it would be fine to take Maddy in a plane already - but she advised waiting until we have our pediatrician appointment next month and asking him. They can't give us a 100% guarantee of course - but knowing that the ENT thinks that Maddy is strong enough is a great feeling. I can't wait to get back to Australia!!

The ENT appointment was at the hospital where Maddy was born and spent four months in the NICU so while we were up there, we decided to pop in and see some of our old friends up there. It was really nice to see them again - this time OUTSIDE the NICU doors. I know that they love and miss Maddy so it was good to catch up with them again :)

On Monday afternoon, we had our first outpatient physio appointment. It really should have been sooner than now but it took a while to get the paperwork sorted out and then a while longer to get an appointment with Christmas/New Year right at that time. She was saying that Maddy's trunk strength is pretty good. Developmentally she is and will be delayed, but that is mostly due to the fact that her limbs can't help her as much as they help other babies. For example, when she is sitting, her arms can't reach the ground to support her, and if she starts to fall, her head will hit the ground before her arms did ;) Also when she is laying on her tummy, she needs to use pretty much only her trunk strength to keep her head off the floor. Even as an adult, try laying on your stomach without using your arms to help prop you up and you'll soon find out how hard that is!! So even though Maddy's not rolling and sitting yet like some other five month old babies are starting to do, considering her unique body, she's doing great development-wise!

Another interesting thing that the physio was talking about, she also treats a one year old boy with Achondroplasia dwarfism and she was saying it would be good for us to meet him as well. I guess she would need to check with his family that they would like to meet us as well - but I would LOVE to meet another "LP" family here in Hong Kong! I really hope that it works out that we can meet him :)

On Tuesday afternoon, we were admitted into the hospital to have a few assessments and x-rays done. I never like being admitted into the hospital because all the paperwork and "bureaucracy" of it all means the process takes a lot longer than it should! We got there at 2pm, and by the time we did a short OT appointment, a short PT appointment and three x-rays, it was already 6pm! Then we had to be back at the hospital at 8:30am the next morning!

On Wednesday, we made our way back to the hospital and ended up being half an hour late. At 10, we headed off to meet Dr Alman from Toronto who I was talking about last week - and we met him and were able to chat with him about Maddy for a while. It turned out that part of what they wanted to do was for him to "present" Maddy's case at a lecture for about 50 trainee orthopedic doctors - something that I didn't fully understand until we were there. I was happy for that to happen though because now that means there are 50 more orthopedic doctors in Hong Kong who are now more aware of Diastrophic Dysplasia, it's symptoms and how to manage the orthopedic issues related to it.

The consultation with Dr Alman was brief and didn't really give me a whole lot more information than I already knew - but I know that the long term benefits for Maddy will be great. Our orthopedic doctors here in Hong Kong will continue to consult with him in the future. His opinions about what we should do are practically identical to those of Prof Sillence which is also reassuring. I'm always thankful for second (or third, or fourth...) opinions.

So that's our very medically-busy week for you! Things will slow down after this week and the next few weeks shouldn't be so bad, maybe just one or two appointments a week, I think.

Coming up in a few weeks, Bernard will be taking some time off work and we have two short getaways planned! First, we will be going to Macau and staying at The Venetian for two nights, and then we will go to Hong Kong Disneyland Resort and stay overnight and spend two days (or probably half-days in reality) at Disneyland! I'm so excited for our little "holidays" :)

Overtired

2011-01-13T23:11:00.000+08:00

The past few weeks, we've been pretty busy with doctors appointments and other fun things, and as a result, Maddy has been getting very overtired. She's been getting particularly cranky around 8pm but cannot get to sleep, even with a lot of assistance. On more than a couple of occasions, she's even screamed for up to an hour and a half inconsolably until we could finally manage to get her to sleep. It's been pretty rough on us both as she's pretty high maintenance at the moment!!

I know what the solution should be - it would be to get her into some kind of routine, be careful not to overstimulate her, and help her to learn how to self-settle a bit better, but putting it into practice around everything else that we need to do is pretty hard.

Often with our doctors appointments, we go and need to wait for an hour or sometimes even more before we see a doctor. During that time, Maddy might fall asleep only to be woken abruptly soon after. It's not uncommon if we have a morning appointment for us to need to wake her in the morning, give her a quick feed and then drag her out of the house right away.

Most of the time during the day, she's fine. There's only been two times where I had this problem during the day. Last week at our orthopedic appointment, we had a two hour wait and Maddy pretty much missed her morning nap which is for her the most important nap of the day. She screamed in the waiting room for about half an hour before falling asleep five minutes before our name was called.

The second time was yesterday when we were having the consultation with the orthopedic doctor from Toronto. We'd dragged poor Maddy from bed at 7am to take her up to the hospital, during which time she was woken by one of the various nurses or doctors every time she managed to fall asleep. By 10:30, she was completely past it but unable to settle. We spent most of the time with the doctor trying to yell to each other over her screams. Fun!

Usually it hits the hardest around 8 or 9pm. She's showing definite signs of tiredness and even looks like she's about to drop off to sleep. Sometimes we manage to put her into bed and think that we've won for once - but she inevitably wakes up after five or ten minutes screaming. She will settle a bit when she's sitting on our knee but still shows signs of tiredness. Sometimes we repeat this cycle, sometimes we just let her sit up for a while in the hopes that next time we put her down it won't be so painful. Sometimes she will end up completely overtired and screaming after which it's a huge effort to get her to sleep, but once she is asleep she will sleep until morning. Other times she will stay awake until we go to bed and once we're beside her, she seems to fall asleep easier (although if I try to "trick" her by "pretending" to go to bed at 8 or 9 and then sneaking out when she seems like she is completely asleep, she ALWAYS will wake up a minute after I walk out).

I never had to deal with these issues with Lana so I'm at a bit of a loss for new ideas that will help Maddy to get to sleep easier - I really don't want to spend hours and hours of my evenings just trying to put her to sleep. And due to the busyness of the past two weeks, it has been a daily battle. Hence the lack of blogs!

On the bright side however, once Maddy is asleep, she sleeps fantastically. She often doesn't wake up until an hour or two after Lana and the rest of us!

I know that probably it will get better in time as we have less appointments or as Maddy grows more tolerant to being dragged from place to place - but in the mean time, if anyone has any suggestions or ideas on how to make things easier for all of us, I'd LOVE to hear them!

(this blog was brought to you in bits and pieces between putting Maddy down, picking her up again, holding her and typing at the same time, and finally in the end having sweet victory as she is down for the night now - fingers crossed! - so forgive me if it's a bit disjointed!)

First Outpatient Orthopedic Appointment

2011-01-04T22:09:00.000+08:00

This morning, I woke up bright and early (ok, 8:30 - that's early for us here in Hong Kong!) to take Maddy to her first outpatient orthopedic appointment. We were going non-stop from the time I woke up until we got to the hospital a little after our scheduled 11am appointment.

As soon as I walked into the waiting room, I could tell we were in for a long wait - it seemed like half of Hong Kong was there today! It took us two hours to see a doctor (gotta love the public health care system here! But honestly, we have no other alternative. Maddy really needs to be at a university hospital, not in someone's private clinic for her orthopedic issues.) During the wait, Maddy refused to sleep so she got overtired and the last half hour, she was just screaming because she was so tired. Typically, she finally fell asleep five minutes before we finally were called, only to be woken up (screaming some more) by the doctor when we got in there.

Overall, I was quite impressed with the doctor. I hadn't met him before, but he was on the multidisciplinary team when Maddy was in NICU so he was very familiar with her case. He obviously has no experience with Diastrophic Dysplasia because of how rare it is, but he has done his homework and is aware of what we need to look for with Maddy and how we should manage it.

Today, he checked Maddy's hips to see how they are doing now that she is out of her Pavlik harness. It seems as though they are still good, not dislocated any more - however she will need to have an x-ray and an MRI to confirm that her hips are ok.

Next Tuesday, we need to go back to the hospital for another set of x-rays for Maddy. They will assess her hips and her spine. Then on Wednesday we need to go back again - there is a highly regarded orthopedic doctor from Toronto, Dr Benjamin Alman, who is in Hong Kong and they want to consult with him. From Dr Alman's bio, he doesn't seem to specialise in Skeletal Dysplasias, but he has written at least one research paper on the subject - and he seems to be very good at what he does, so it will be good to have his opinion on Maddy as well.

I asked the doctor today about Maddy's feet and whether he thinks she would benefit from AFOs. I know that Prof Sillence generally recommends against AFOs for DD kids - but they can sometimes be used in a way that prevents surgery on the feet - and if I had to choose between AFOs or surgery, AFOs seems like the lesser of two evils. He said that AFOs are a possibility, but he'd reassess later on.

This week, we have one more appointment - on Thursday we have the developmental occupational therapy appointment. Then next week is when the fun really starts - we have four different appointments! On Monday, we have ENT and physio, then on Tuesday and Wednesday we have the two orthopedic appointments (Tuesday for x-rays and Wednesday for the Alman consultation). It's going to be a fun week!

Why is this still ok?

2010-12-29T14:59:00.000+08:00

Today as I was reading Facebook, I came across a picture that bothered me. Maybe it was my hormones raging, maybe it was my oversensitivity, maybe I'm still coming to terms with having a daughter with dwarfism, I don't know. I do know that a year ago, I might have chuckled and not given it a second thought - but today, I thought of my sweet Maddy and instead it made me cry.

The picture was innocent enough, a teenage boy dressed up as an elf - wearing the typical elf hat, kneeling on the ground so that his knees could be in the shoes, arms not in the sleeves of his jacket - which gave him a pretty accurate "proportion" for the dwarf elf he was trying to represent. So much so that I did a double take, before realising that it was just an average height kid having some fun.

I know that most people in our society see nothing wrong with the above picture. It's just a bit of Christmas fun. But as the parent of a child with dwarfism, I wonder - how will this society affect my daughter as she grows up? Why is it that it is still ok to stereotype dwarfs and to make fun of them?

I previously wrote about my thoughts about Hollywood's representation of dwarfism - and people were quick to tell me that there are now a small number of short statured people who have been cast in non-stereotypical roles, however this still appears to be the exception, not the norm. Most dwarfs in movies these days are still playing the roles of leprechauns, oompa loompas, angry dwarfs who kick people in the shins or some kind of magician's apprentice. They rarely (but still occasionally) play "a normal person who happens to be short statured".

If someone dressed up and acted as though they were affected by a mental disability for Halloween, people would be horrified. If I took out my newborn and had him on fake oxygen just to "dress up", that would not be accepted. Society has made it very clear that it is NOT ok to mock disabilities and special needs.

Except for dwarfs?

Disclaimer: I know that in posting this, there is a chance that someone who knows the photo I am talking about will read it and recognise what I'm talking about. I know that the picture was taken innocently and was not meant to mock anyone. I am not attacking the photo, I'm just musing about how our society portrays dwarfism - and how people including myself never think about it until they are personally affected by it. I am not personally offended by the picture and mean no offense in anything that I've written. My heart just aches for my daughter who lives in a society where people will most likely laugh at her differences.

Maddy's New Chair

2010-12-28T21:15:00.000+08:00

I mentioned in this post that we were going to rent a medical feeder chair for Maddy to use at home. Well I picked it up on Christmas eve and this is what happened when it got home:

Lovely new chair - I think I might claim it for myself!!

No, Maddy - this is MY chair. What are you doing sitting in it??

There, that's better!!

I love you, my sister xox

Lana is quite taken with the new chair and she sits in there even more than Maddy does! Maddy is happy though that she has somewhere to sit that is a bit more comfy for her - although I think that she wishes it could have dangling toys like her old bouncer! We've tried to be creative with that but it hasn't been very successful so far. Maddy is very interested in her toys these days and is batting at them like crazy, trying to hold them but still figuring out how to work her stiff little fingers. Every now and then she succeeds though :) And I know she's just going to get better and better. Now if we could just figure out how to incorporate that environment with her new chair, that'd be great!! Any suggestions?? (remembering that HK isn't big on hardware/DIY stores!)

Merry Christmas

2010-12-27T13:15:00.000+08:00

The girls, ready to start unwrapping

Wow, Maddy - look what you got!

Merry Christmas everyone!!

This year, we had a very relaxed and laid back Christmas. We spent pretty much the whole day at home, ate leftover spaghetti and chicken rice for lunch, the girls didn't get that much this year. But of course, the highlight was having Maddy home with us. For dinner, we went out to eat - Christmas is also Bernard's birthday so it was more of a birthday dinner really. We did have a cake for Daddy and Jesus (they had to share), and Lana spent most of the day eating junk. We had planned to go back home to Australia after Christmas (maybe on the 26th or 27th) but with Maddy being unable to travel, we're just staying home. In spite of not being able to go back home, it has been a good Christmas and it reminded me of what matters the most - not the running around like crazy and giving (and/or receiving) millions of gifts. It's remembering the birth of Jesus and being with the people who mean the most to you :) I hope you all managed to spend Christmas with the ones you love as well!

I'm so happy for the family of Kody Tobler who managed to spend Christmas with him at home for the first time in his almost three years! Kody was discharged from the hospital on the 22nd, just in time for Christmas :)

Thinking of Mary

2010-12-24T13:24:00.000+08:00

At this time of year, people often do a lot of thinking about the birth of Jesus, about Mary and Joseph, the manger and shepherds and wise men. And a lot of my fellow-bloggers have been doing their share of blogging about their thoughts at this time of the year as well.

One of my favourite posts that I have read about Christmas is from the blog of Katy at Bird on the Street. Here, she writes "Mary didn’t plan to give birth to the Savior–as far as I can tell, she didn’t even volunteer. She was drafted. Just like me. I was minding my own business when I got selected by fate to be the parent of a special needs child. There’s no handbook for this and figuring out what to do is often a pile of guesswork."

When I first found out that we were facing medical issues in this pregnancy, one scripture that I could identify with strongly was Luke 2:35. A prophet was prophesying all these wonderful things about Jesus, and then he turns to Mary and says "And a sword will pierce your very soul".

I'm sure that when Mary was chosen to be the mother of Jesus, she probably didn't initially realise just how much her heart would be broken, how much pain she would endure seeing the child she birthed treated unfairly and ultimately being killed for crimes that he did not commit. And like Mary, when I found out a little over a year ago that I was expecting another child, I had no idea just how much my world would be turned upside down while I had to learn to face challenges that we never expected. I was still innocent to the depth of pain and heartache that motherhood could and and would bring me in the coming year.

Becoming a mother makes you so vulnerable. I think that any mother can identify at least in part with Mary in the mixture of joy and sorrow that we endure watching our kids grow up. But being a mother of a child with special needs really makes the highs so much higher and the lows so much lower.

Last Christmas when I was enjoying my beautiful, perfect one year old and I had recently found out that we were expecting another little one, when I thought of the Christmas story, I thought about the joy that a new baby brings - and even more so for the baby Jesus, because His birth held sooooo much promise. He was to be Saviour.

This year, I am so much more aware of the painful side of Jesus' birth, that sword that pierced Mary's soul, the sword of a mother's vulnerability. But still, I rejoice. I rejoice at the birth of our Saviour, and at the birth of my own two precious angels too :) I am truly grateful.

Our first outpatient appointment

2010-12-23T00:04:00.000+08:00

Today, Maddy had her first outpatient appointment - it was with occupational therapy. From reading other blogs, it seems as though in the US and Australia, occupational therapy and physiotherapy are often offered as home visits (am I wrong about that? Would love to know) - but here in Hong Kong we have to head to the hospital for the appointment.

Today's appointment primarily focused on Maddy's oral motor skills. The therapist had met Maddy once in the NICU - she is based out of a different hospital - and she was amazed at the progress that Maddy has made in the past month! She has gone from struggling to take even 40mL in one hour long feed to being able to easily take 140mL in about 15-20 minutes. The occupational therapist was showing me how Maddy's sucking is improved so much that I can start the feed without even squeezing on the Haberman feeder and just relying on Maddy's sucking ability to get the milk. She can't finish the feed like that because her sucking is still not strong enough - but she can take the first 40mL or so with no assistance which is a great start :)

We will also be seeing the occupational therapist for some developmental training, since Maddy is developmentally delayed in some areas. It is much harder for her to use her hands for one - she will learn how, but a bit of help will make it easier for her. Today though we didn't focus on those areas, only on the feeding.

I mentioned to the OT that I wanted to try and find a chair that is more suitable for Maddy to be in. I find that the bouncer doesn't seem to have the back support that Maddy needs - she seems pretty uncomfortable in it, arching her back all the time. We have a Bumbo chair and I've put Maddy in it a couple of times when she needs a change of position but I don't think it is ideal for her yet - her back is not quite strong enough yet. When she was in the hospital, they had a "feeder seat" that Maddy seemed to love and I've been wanting to find something similar - something with a bit more back support. The proper medical ones are very expensive though - particularly in Hong Kong, close to USD$1000 apparently - but the OT helped me to fill out a form so that we can borrow one from the hospital for a few months. We should be getting that in the next week or so!

When we were just about finished our appointment, one of the OTs from the hospital where Maddy was in NICU showed up and it was great seeing a familiar face. It made me kind of miss the hospital - not because I miss NICU, but Maddy had some fantastic nurses and doctors up there and after four months, we developed a bit of a relationship and I miss that. I think Maddy does too, she really loved some of those nurses, and they loved her too :)

As I was leaving the hospital, I ran into someone I knew when I was pregnant with Lana. Her daughter is the same age as Lana (just over two) and has developmental delays, so they have been going to the hospital for about a year for therapy. Her daughter has no diagnosis and the doctors don't know why she has these developmental delays - they are just taking it one step at a time. It made me realise just how lucky we are to have a diagnosis for Maddy. I know generally what to expect, when she might start rolling or sitting or walking, what kinds of things she will, or might not be able to do as she gets older. I can have some kind of an idea in advance what her future might be like. I can also look at other kids and even adults with the same diagnosis as Maddy and know that she has such a bright future. I'm grateful that my questions aren't just answered with further questions. I know that a diagnosis isn't everything, and each case is different, each individual is different... but I'm glad that we do know that, at least.

All in all, it was a pretty productive day. And it wasn't too bad, it didn't take too long and Maddy (and I) handled it great. We have no more appointments until after the Christmas/New Year period but we'll start the year with four appointments by the 10th! THAT will be fun, I'm sure :)

Routine

2010-12-21T12:57:00.000+08:00

It's hard to believe that it's been two weeks already since Maddy came home! That time has flown by so quickly! When she first came home, it took a little while to adjust but now we're back into the swing of things :) When Maddy first came home, her oral feedings were not doing so well but now she's feeding like a champion! She drinks her milk so quickly and hungrily and often will cry when she is done. She's drinking more than the doctors recommended that I should feed her - but I think it's a good amount for her. I'm so glad that it's not a struggle any more!

It took me at least a week to figure out Maddy's routine but I think I've got it down pat now. She actually has a very reliable and predictable routine (once I figured it out anyway!). She'll eat, and then play for about an hour or so, then sleep for about an hour or so, and then wake up and want a bit more to eat again. It's a three hour cycle that starts at about 7-8am and goes until her last feed at 10-11pm, then she will sleep like an angel until 7-8am.

Now that we are in our routine and Maddy is feeding well, things are going VERY smoothly! I always expected that the hard work would start when Maddy came home from hospital, but the opposite is true. It's been so easy! I actually am in awe of how easy things are at the moment (although the first week was VERY hard work!)

It's true that we haven't yet started our doctors appointments - we have six different specialties that we will be seeing in the next two months (occupational therapy, physiotherapy, ENT, cleft palate surgery team, neonatologist, and orthopedic doctor). I know that the appointments will complicate things a bit, but it can't be harder than going to the hospital for a few hours every single day. We have our first appointment (occupational therapy) tomorrow.

I've been loving having Maddy at home and have been showering her with hugs and kisses, blowing raspberries on her delicious baby cheeks and making her giggle non-stop. I think she might currently be one of the most-kissed babies in the world!!

Here's a few pictures of our lives the past week or so :) (I know I probably should break it up so that I have at least one picture with every post, but I can't help sharing them all!!)

Resting on Mummy and Daddy (and 50% of the time Lana)'s bed

Grimacing about "tummy time". Her center of gravity is much higher than an "average height baby" and her arms are so short that it's hard for Maddy to keep her head up. Often her little legs will pop up into the air instead and her face will be smooshed against the floor ;)

There, that way is MUCH better!!

Maddy loves this bunny blanket. She's exploring a lot of things with her hands lately and likes to hold/stroke things with interesting textures like her blankets and towels. This one is a favourite!

Maddy's first introduction to Playstation. She seemed fascinated ;)

There were three in the bed and the little one said...

Travelling

2010-12-13T12:59:00.000+08:00

As expats living away from "home" in a foreign country (albeit the one where my husband was born), we generally do a lot of travel. In the first year that we were living in Hong Kong, I went back to Australia twice. In Lana's first fourteen months, she went to Australia three times, and Singapore, Malaysia and Thailand all once. That's more travel than a lot of people do in a lifetime!

The last time that we were overseas was last Christmas. We went to Malaysia and Singapore to visit Bernard's family over there. We had just found out that we were pregnant with Maddy at the time but we had no idea what the year would have in store for us!

We had been planning to go back to the US for a long time and were nearly at the stage of booking tickets for Easter this year when we found out that we had complications in the pregnancy. We decided to cancel the holiday and possibly head back to Australia later in the pregnancy - but the doctors recommended that I shouldn't travel at the time.

Instead we were planning on heading back in October after Maddy was born, for Lana's second birthday. NICU changed that plan for us, but we didn't mind postponing until Christmas. We knew that Maddy should be out by then - and in some ways that was a better plan since my brother would also be in Australia from Denmark - plus it's SUMMER (and I love the Australian Summer!).

Last week I asked the doctor, just to be sure, whether Maddy was fit to go in a plane - and the short answer was "no". With her airway issues, the doctors cannot guarantee that she would be strong enough for the flight - although the cabin is pressurised, the pressure is still lower than atmospheric pressure. And the oxygen content is lower as well - closer to 17% than the usual 21%. Most people can fly and these conditions don't have any impact on them, but people who have respiratory problems can really suffer in those conditions. And the last thing that you want at 30,000 feet is a medical emergency.

So we're currently "stuck" in Hong Kong. Bernard has nine weeks of annual leave owing since we were saving them up for the US trip that was meant to be at Easter, then for this trip back to Australia. We haven't had a break at all for a year, and we really need one! There's not many options for "staycations" within Hong Kong around here - we could head to Macau, or we could head into China - but I wouldn't want a medical emergency in China either!! At least Macau isn't as far away.

Hopefully Maddy will progress to the point that she is able to fly in the not too distant future - the doctors said it will be at least a few more months though (so no Australian summer for us :( ). Maybe we can make it back to Australia for my 30th in May instead...

Discharged :)

2010-12-12T22:43:00.000+08:00

On Friday, we went up to the hospital for an ultrasound on Maddy's hips. Friday morning was the end of our home leave, and so I needed to leave Maddy at the hospital for the whole day until we had a meeting in the afternoon with a few of the specialists.

The meeting with the specialists just turned out to be some kind of disclaimer from the doctors. "Usually we would insist on doing a bronchoscopy when a child has symptoms of airway malacia or narrowing of the airways like Maddy does, but we are not doing that because of these reasons, but you need to be aware that really her airway hasn't been properly assessed". I'm aware of that, but I'm also aware that the CT scan did suggest that she has the laryngomalacia, and this is consistent with diastrophic dysplasia. Even if we were to do the bronchoscopy, in the words of Prof Sillence, there's a 99% chance that we'll just confirm that she has laryngomalacia due to the DD - something that we can assume from what we already know about her symptoms, the CT results and DD in general. There is nothing that we can do to treat it, it is something that she will grow out of in time.

After waiting around at the hospital until 5:45pm for that meeting, we were free to officially begin to be discharged. That involved a lot of appointment making by the nurses (I think we already have six follow up appointments with various specialties), bill paying, vitamin ordering (although we forgot and left them up at the hospital) and just waiting around for various bits and pieces. We ended up getting home at 8pm after all that! But now that we're home, we're home for good :) No more trips up to the hospital for a while! (unless we decide that we want those vitamins after all ;) )

We received good news from the ultrasound - the Pavlik harness that Maddy's been wearing for the past two months has been doing it's job and Maddy's hips are no longer dislocated. This means that Maddy no longer needs to wear the harness, and she's been LOVING her new-found freedom. In the harness, she could only slightly wiggle her legs, but not really kick them around at all. Now she is kicking them non-stop.

I've been playing around a bit with Maddy's feeds since I didn't really feel as though the hospital routine was working for her. Last week, there were times that we really had to force feed her when she was crying and thrashing her head about, obviously not wanting any more and it was VERY painful for us all. The hospital wanted me to feed her six 100mL feeds a day, and sometimes it was a struggle to even get her to take 50mL. But we knew that if we couldn't get an average of about 600mL, she may need the NG tube put back in, and none of us want that. After a bit of experimenting, we are now feeding her eight feeds a day, averaging about 75mL. If she is hungry and eating well, I'll give her the full 120mL but if she is cranky and not wanting any more after 50mL, I'll stop the feed right there rather than forcing her to drink more. With this new routine, she's actually drinking more than before, and it's a lot easier too! (although there is more bottle washing involved). I know that as she gets better at feeding, she will probably drink greater quantities less frequently, but for now, this is working for us, and we're all happier as a result.

And would you believe it, since she's been home I've been so busy that I've hardly taken any photos? I need to get around to that ;) Hopefully next time I'll have a bunch of new pictures for you all :)

Adjusting

2010-12-08T22:10:00.000+08:00

It's been two days since Maddy has been home and we're all still getting used to it a bit. Lana has been really good with Maddy, but she's been a little bit extra needy with Bernard and I. The night that Maddy got home was pretty awful - Lana woke up around 11pm and didn't go back to sleep (in our bed) until 2am. Much of that time, she was screaming and keeping us all awake - but Maddy slept right through it! The next night, she didn't want to go to her bed at all, she wanted to sleep in our room. We made her go to her own bed, but when I was feeding Maddy at 5am she woke up and made her way into our bed.

Maddy has been mostly pretty good but she's been a bit unsettled and has been crying for no reason (either that or I just can't figure out what the reason is, no matter how much I try different things!!). I'm sure that coming home has been a massive upheaval for her, she has lived all her life in one room, mostly in one bed, and now she's in a strange place, going outside, feeling the wind and the sun, smelling the fresh (or not so fresh) air... all wonderful things, but I'm sure it could be pretty frightening for such a little one.

Bernard has been working from home these last couple of days. It's nice having him around to give me a hand if things with the two girls start spiraling down fast! But he is still so busy with work - he wasn't able to get "time off" because there is too much going on, so he is still working full days but just at home instead of at the office.

Looking after Maddy is a full time job! The hardest thing in looking after her is feeding her- it makes me grateful for just how easy Lana was! With Lana, I always just breastfed on demand, and with her I could rely on her to know when she was hungry and when she was full. With Maddy, if I fed her on demand, she'd need to go back to the hospital with an NG tube because simply, she wouldn't be getting enough to even stay hydrated.

Instead, I need to feed her mostly by squirting milk into her mouth and waiting for her to swallow it. The first part of her feeds, she will take more actively, so it's not so much work - but after she's decided she doesn't want to work for her food any more, that's when the fun and games start! It's often a long, slow process of just trying to make sure she can at least MOSTLY finish her feed before she's too traumatised to have any more. And it's a fine line before trying to get the food into her quickly, or trying to make sure I don't overdo it and make her cranky faster. Each feed takes us about an hour until either she has finished the feed, or more regularly, she has decided that enough really is enough!

Putting it into perspective though, I think it's just been a week today that her NG tube was removed permanently, so she's only had one week to practice and learn how to fully take oral feeds. I'm sure that it will get better with time, and truth be told, it already has been improving (slowly though!!)

We've been mostly staying at home but I did take her to our family doctor to get her four month immunisations, and I did need to run out to get a couple of things at Times Square (that webpage has the coolest intro!! Check it out!!) so I took Maddy along for the experience too. It was great to go out with her, not so great to feed her while we were out instead of in the comfort of our own home! I'm sure I probably "broke probation" since we're still on home leave rather than formally discharged, but I don't think that any of the nurses saw me! ;)

Despite how hectic it has been, it's soooo good to have Maddy at home with us all and to not have to go up to the hospital! Our "home leave" was extended until Friday so we will go back up there then for the day and if everything goes smoothly, Maddy will be formally discharged then. She will also have a follow up ultrasound on her hips to see how the harness is working, I have an appointment with someone in order to get a disability allowance for Maddy, and we have another appointment with all the multidisciplinary doctors to discuss how we need to look after her at home and what things we will need to follow up when.

I'm looking forward to when we're all a bit more settled into our new routine and can all relax a bit more! I know it won't take long :)

Home Sweet Home :)

2010-12-06T22:39:00.000+08:00

Right now, I'm sitting here after a long, wonderful day listening to my youngest daughter sleeping away next to me. I'm looking forward to having her disturb my sleep (hopefully not TOO much) tonight. And I'm thankful that she is home and that we can begin our lives together as a family of four :)

Lana has been so great with her this afternoon since we got home. She has been talking to her non stop. "Baby Maddy, would you like to play with the bunny rabbit?" "I like your elephant and giraffe, Baby Maddy" "Baby Maddy, go and sit with Daddy now. I want to sit with Mummy". Lana was so gentle and loving towards her. I hope it continues that way!

It's been pretty intense so far having her home. Maddy is completely orally fed now, but it takes a LONG time and a LOT of effort. It makes me appreciate how easy it is when breastfeeding works like it should!! Instead, I need to pump first, then sterilise, then make up bottles (she is now doing best with the Haberman feeder), then it takes an hour for her to take about 100mL, seven times a day. One hour to feed, then two hours break before we need to feed her again. She gets so tired from sucking and swallowing, she's used to being fed the easy way! But I know she's getting better every day and it won't be THIS hard for that long.

Technically Maddy is only on "home leave" at the moment, we need to take her back to the hospital on Wednesday morning but if all goes well until then, she will be formally discharged on Wednesday.

I'm sure it will take us a few days at least to begin to get into some kind of routine with her. Tonight was a bit of a disaster really (well we DID get home at "horror hour" and I needed to wash and sterilise bottles and the pump parts, then I had to pump and bottle feed Maddy, and feed Lana and ourselves all within two hours. We had the two girls screaming in harmony!) but we can play around a bit with Maddy's feeding times to find something that works better with Lana's routine as well.

So now, I'm looking forward to NOT going to the hospital tomorrow!!! Hurray!!!

Welcome home, Maddy :) :)

Sillence in the Hospital

2010-12-03T12:16:00.000+08:00

So I couldn't resist the pun ;) (although technically, his name is pronounced "si-LENCE" with the emphasis on the second syllable)

Yesterday, Prof Sillence made his way up to the hospital to see Maddy. It was really good to have someone look at her and look at the x-rays and to give his opinion on her case. And he's had a lot more experience in this condition so the doctors were really wanting to hear what he had to say as well.

It was all pretty good news. Prof Sillence said that he sees no evidence of any neck instability on her x-rays. That has always been something which was mentioned and not ever really confirmed or denied. I think it was something that the original geneticist (who trained with Prof Sillence) mentioned. In addition, there is no evidence of a cervical kyphosis at all - and this is often the major complication with Diastrophic Dysplasia. A kyphosis is where the neck bends at the wrong angle putting pressure onto the spinal cord and it often needs to be corrected with spinal fusion which is a pretty intense operation to have! Prof Sillence said that with DD, if there is no evidence of kyphosis at birth, it's very unlikely that one will develop later - so I'm very glad that we don't need to worry so much about that!!

In addition, Prof Sillence suggested against the MRI and bronchoscopy. He said that the neck manipulation that they were planning could damage her neck and they wouldn't gain any information that they don't already have from the CT scan and from what they know about Diastrophic Dysplasia in general. So that is now not going to occur. They will monitor her closely though and if it happens that she does need them later, we can reconsider. But for now, absolutely nothing needs to be done!!

So in light of all that, the hospital is now preparing Maddy to come home! The process still will take a few days as we need to make appointments to talk with various doctors about her airway issues and her orthopedic issues and how to manage everything at home - plus it's coming up to the weekend so all the 9-5 doctors will be off! But she should be home by around Tuesday, give or take a day or two!!

(forgive all my exclamation marks in this post, I'm just REALLY EXCITED THAT MY BABY IS FINALLY COMING HOME!!!!!!!!!!)