How having a child with a disability has changed me

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...

Top 10 posts of 2011

I've been wanting to write this post since the beginning of the year - and here it is, nearly three weeks later. It's always fun to look back at the year - and so here are the top 10 posts of last year. 

Top Five by number of views:

1. Dwarfism is not just about being short

In this post, I discuss the medical implications of dwarfism, and in particular, the possible risks that Maddy has being a diastrophic dwarf. Maddy is not "sick" - but she does have a much higher risk of a number of medical complications due to her dwarfism.

2. Why I don't pray for a miracle

I was actually surprised that this one was not #1 - it was the first of my posts that really was reposted elsewhere. In this post, I discuss my feelings on God and disability, and explain why I believe that God designed Maddy especially to have dwarfism, and I don't pray for Him to change that.

3. Are your daughter's limbs short?

This post may be included just because it was my only post for the month of May - but in it, I discuss the first time that someone approached me and asked questions about Maddy's dwarfism.

4. Holding onto... STUFF

This post has some really cute pictures!! It was way back in January last year, when Maddy was just starting to figure out how to use her hands.

5. Meant to be

This post has the video that we made for Maddy's dedication, along with the lyrics to the SCC song that we used. I still love that song and video - what a celebration of Maddy's first 10 months!!

My own personal top five (in chronological order):

1. A bit of Disney Magic

This post is probably one of my best written ones - short but sweet. I tend to waffle on a bit, I know. In it, I talk about the beauty of a dad helping his daughter with special needs at Disneyland.

2. Holding onto MORE stuff!

A look at how Maddy uses her hands - it still fascinates me, she uses her fingers almost like chopsticks. This post has some good pictures as well.

3. New friends - Alison

Meeting Alison was one of the best things that happened in 2011. Alison has the same form of dwarfism as Maddy, and I hope that we stay in touch for years to come.

4. Happy Birthday Maddy!

A letter to Maddy on her birthday. This post also has two cute videos!! 

5. Teaching our kids about dwarfism

Lana noticed that Maddy was different to other babies (or actually, that other babies were different to her) and asked me why. This is what I told my not-even three year old. 

Enjoy!!

Spinal appointment

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

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

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

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?

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!

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!)