Wednesday, November 14, 2012


For many people with dwarfism, their most valuable "tool" is the humble step stool. We have a few around the place, mainly for Lana to reach the bathroom sink to wash her hands. This one ended up being used for a footstool at our keyboard and as such, lives in the lounge room. The kids have been using them as seats, but tonight, Maddy figured out that with the stool, she can manage to climb onto our sofa. Not a small achievement, given that the sofa is around the same height as Maddy's nose! 

I think I need to get more of these stools, and also figure out how to make the bottom slip-proof. We need to be very careful to hold the stool while Maddy is climbing, otherwise it goes flying from underneath her. I welcome any suggestions!

(and how's that? No posts for six weeks and now you guys get two in a day ;) )

Playground Independence

Playground independence has been a long time coming for Maddy. Many of the playgrounds here in Hong Kong have large steps which are difficult for little legs to climb (and by little legs, I mean legs that are possibly still shorter than the average newborn baby's!). Then there are high bridges with not much protection at the sides which freak me out, even though I'm not usually a paranoid parent (it would be so easy for her to fall). Last of all, there are the other kids. As you can tell in this video, Hong Kong parks are crowded places and kids are very interested in Maddy, who honestly does look too small to be walking as well as she is. Many of them want to hold her hand and inevitably knock her down in their efforts to be "helpful". 

As the weather cools down, we find ourselves at the park more and more frequently - and this year, Maddy is starting to hold her own! She has mastered the smaller stairs, she can go down just about any slide and controls her speed with her shoes, and she avoids the extra-friendly kids as much as possible. It makes me so proud!

Monday, September 24, 2012


Maddy's speech has been one of her main areas of delay. I've spoken about her issues here many times before, starting in this post nearly a year ago (that's half a life-time for a 2 year old!) and in greater detail in this aptly named post, "Worry" which was subsequently followed by "Communicating" less than a week later. Speech for Maddy has been a bit harder - mainly due to the cleft palate. Her "receptive language" (that is, the amount of language that she understands) is pretty average/age appropriate. Since her surgery, her vocabulary has been improving exponentially. Currently, her main issue is with articulation (ie, what she does say is very difficult to understand - even for people who are with her all day, every day). 

I know though that she will "catch up", but it will take more practice and speech therapy. We have a really nice therapist who we have been seeing weekly, and sometimes I have to remind myself that Maddy's cleft surgery was only 4 months away - so really, she's only been talking for 4 months. When that is considered, she's doing awesome!

I shot this little video in the bath a week or two ago and thought I'd share it to show you all what her speech is like these days:

Me: Can you sing "Twinkle Twinkle little star?"
Maddy: Twinkle twinkle... HOLD!
Me: No, you can't hold - you're in the bath.
Maddy: Hold please...
Me: No, you cannot
Me: Sing twinkle twinkle
Maddy: Baby!
Me: Twinkle twinkle... oh, Baby
Maddy: Bath!
Me: Ok, Baby do twinkle twinkle.
Maddy: (singing "Twinkle Twinkle") - Again!
Me: Again? What's baby going to do now? Maddy? What's baby doing? Oh - bye bye baby!
Maddy: Bye bye baby! Bye bye baby! Bye!

Monday, September 3, 2012

Meet paralympian, Grant "Scooter" Patterson

I love reading stories about other people with diastrophic dysplasia and the things they have accomplished. It's a rare condition and not easy to find stories of people specifically with this form of dwarfism. Two years ago, I first read about Chris Errera, a pianist who has since gone on to appear on The Rosie O'Donnell show.

I first heard of Grant "Scooter" Patterson when Maddy was still in NICU. Prof Sillence brought a few photos of people with different forms of dwarfism who had been patients of his. Scooter was one of them. I didn't realise at the time that I would also read about him in the news paper.

A year or so ago, I stumbled upon this story of Scooter I copied the link to a draft post intending to share it here but never got around to it. It is only because the paralympics are on at the moment that he's come to my attention again.

A dear family friend (Hi Aunty Susan!) was talking to my parents and mentioned that she'd seen Scooter on TV and thought that "diastrophic dysplasia" might have been the same thing that Maddy had. My dad looked him up and sent me this story, complete with a video!

I love how Scooter inspires me to keep Maddy fit and active - particularly with swimming (as a low-impact sport, it is perfect for someone with joint issues). Who knows, one day we might see Maddy in the paralympics too!! Why not??

(an interesting side-note: Scooter's next event in London is the S4 100m Freestyle. Also representing Australia in the same event is Amhed Kelly, the brother of the X-Factor contestent, Emmanuel Kelly.)

Thursday, August 2, 2012

Scoliosis and other stuff

Wow, it's been a full month since my last post! It's been a great and busy month. We had two weeks in Australia which was fantastic, then since we've been back I've been trying to catch up on uni work (I'm still behind!), we've had a bunch of appointments for Maddy, and we've been trying to enjoy summer as well. Also, we have a very special 2nd birthday coming up in two days! 

We've had a bit of a hard time finding shoes to work with Maddy's new insole orthotic - her feet are so small and wide. We have a pair that are ok but are really a size too big for her. We tried to find a smaller size, but they don't sell them in a solid rubber sole here in HK - so the pair that did fit her well didn't support her feet as well as they needed to. I've ordered some from the US that should work, fingers crossed! It's always a risk when you can't try them on before buying them.

In other news, Maddy had her orthopedic appointment yesterday. She sees two teams of orthopedic doctors - the spinal team and the pediatric team. The spinal team follows up on her spine issues (obviously) and the pediatric team follows up on everything else. The appointment yesterday didn't go as well as I'd hoped. 

First of all, Maddy's scoliosis is progressing. I'd suspected as much since I'd noticed a bit of a hump in her upper back. It is currently at a 32 degree angle. It's too early for surgery now, but we will keep an eye on it and within a few years, it's likely that she will need a spinal fusion.That's one surgery I was hoping to avoid, but I know it's fairly common for people with diastrophic dysplasia.

Secondly, the pediatric team are still quite concerned about Maddy's hips. The joint is still very shallow and they are concerned about possible dislocations. If the joint really is at risk of dislocations, she may need a "hip containment surgery" to protect the joint.

For both of these issues, we will need an MRI in order to get more information. This should be scheduled for the next month or two - and I'm not looking forward to that! For MRI's, they need to place the IV cannula, which is always quite tricky and traumatic for Maddy (and me!!). You can read about our last cannula/blood test experiences here and here. The MRI in itself is fine, and Maddy tolerates the sedation well too - it's just the IV which is rough.

I was going to add some pics but blogger is taking forever so will add them next time. Hopefully I'll update sooner than next month!

Monday, July 2, 2012

Cross Face

Yet again, it has been way too long since I last updated. I have lots to share - in brief, Maddy has new shoes! Her AFO's have been retired and replaced with an orthotic insole that are placed inside regular shoes. Also, her speech is starting to develop - although she still has a long way to go there. We will be heading back to Australia tomorrow for a brief visit, just me and the girls. 

I mainly wanted to share this cute video - Maddy is turning into a little actress, making faces at will. Here she is, showing off her "cross face".


Thursday, June 7, 2012


It has been so long since I updated this blog! Maddy's surgery went fantastically well. I had heard and read that the first two weeks would be hard, but Maddy seemed as though she was back to "normal" within a couple of days. She would still get frustrated by the arm splints, and by her inability to eat regular food - also once she came home, she asked for her dummy more, probably because it was part of the whole bedtime routine. In the past month since surgery though, she's adjusted well. She no longer needs the splints and can eat almost anything (although we have to keep really hard, "pointy" things out of her mouth still). She has also stopped asking for her dummy.

I do think that in the last month, there has been some improvements in Maddy's speech. She seems to be saying a lot more now - however it's still not very clear and few people besides those of us who know her best can understand her. Some words, she can say perfectly (eg, Daddy, Yeah, No, Hi, Bye...) but most are a bit of a stretch (eg bubble is "guggle", yoghurt is "ger", bath is "ba" or "ga", and so on...)

Since Maddy is now getting close to two, I think it is time to put her into speech therapy. This will be her first private therapy - everything else so far, we have had through the public system. I would have done speech through the public system as well, except since we are on the waiting list for therapy at the early intervention centre place, we are apparently ineligible to do anything more than to just wait (I don't understand why we are eligible for public physio and OT in that time but not speech, but ah well). 

I've been looking around a bit and some places are really expensive. One place wanted to come to my house and they would charge me $500HKD (around $65USD/AUD) for 30 minutes travel round trip, another place will do an assessment for $5000 (around $650). These places are "expat places" where the therapists are all Westerners, as are many of the clients. I decided to look around for something that was a bit more in our budget. I finally found this one place and the therapist spent 20 minutes talking to me on the phone yesterday (and didn't charge me ridiculously for that!) so we're going to try there. She will have her assessment on Saturday.

Maddy's speech is something that I have been concerned about for a long time and hopefully we will see even greater improvements soon :)

Sunday, May 13, 2012

Day three post op - home :)

Today, Maddy was discharged from the hospital. She is doing absolutely fantastic - way better than I even imagined she would. She's eating like a champion (albeit a restricted diet) and is happy and cheeky. She doesn't seem to be in any pain at all and is even tolerating her elbow splints. I have to say, she looks kind of funny with splints on her elbows and ankles - and they really make her very hot as well!! 

Bernard stayed overnight at the hospital the night before last and I'd asked him to try and ask (emphatically) the doctors to be able to get Maddy off the IV drip (she was drinking plenty and didn't need it any more) and for her to be able to eat something other than just fluids. I know that the recommendations from other hospitals generally allowed kids to eat soft foods within 24-48 hrs after cleft surgery and I knew that Maddy would be much happier with food in her tummy. The doctors initially didn't want to allow either but thankfully, Bernard was able to convince them otherwise!! It made a huge difference to Maddy's mood. She still needed the IV cannula in her foot as she was having intravenous antibiotics, but at least she was far more "free". 

Yesterday, we thought that maybe we should take a short break from the hospital and spend some time with Lana. Our helper (who is fantastic with Maddy) stayed at the hospital yesterday for a few hours and we took Lana to Disneyland, then I came back to the hospital to do the night shift last night.

I knew that the criteria for being discharged after the cleft surgery included finishing the antibiotics and eating/drinking well and I knew that Maddy was on track (she's always been such a good eater and drinker so there wasn't much of a challenge there!) so I suspected she may be out POSSIBLY today but I thought it was more likely to be tomorrow - but when the doctor came around, he confirmed that Maddy could come home today. It was the perfect mothers day gift after a long night sleeping on a blanket on the cold, hard hospital floor ;) 

I am so amazed at how well Maddy has recovered from this surgery. In addition, we already think we can see an improvement in her speech!! After only three days!! She's been making sounds she never said before, saying new words, and saying old words clearer than she used to. At first I thought it was just me being overly optimistic, but Bernard commented on it as well.

I have so much more that I could say about different aspects of the past few days... but for now, I'm just thankful that our girl is home, she is healing and she is growing :)

Friday, May 11, 2012

Day One post-op

Day one post-op is often the most difficult. Today for us was medically filled with more good news - but held a lot of frustration for both Maddy and myself.

Last night, Maddy spent the night in PICU while I got a much-needed good sleep at home. I had a call from the hospital around 10am saying that Maddy would be transferred to the surgical ward which was fantastic news. The transfer would take place around noon and so I would be able to see Maddy then (I was still not allowed in the PICU before that time). 

I had a fantastic morning with Lana and headed up to the hospital after dropping Lana off at the bus stop at 12. When I got there, Maddy had just transferred to the surgical ward and was sleeping. I half wanted to wake her to see how she was, but I knew she needed to sleep. I noticed immediately though that the stitch that held her tongue forward had been removed, there was less blood around the mouth and nose, and her stridor was significantly less than yesterday.

Maddy slept for ages and ages - finally waking when the nurse put ear drops in at 3pm. She instantly was NOT HAPPY! It turns out that she doesn't like ear drops. In addition, she doesn't like (still) not being allowed to eat, she doesn't like her IV (it's in her foot and it hurts when she bears weight on it), she misses her dummy and she doesn't like her elbow splints. The elbow splints are pretty useless, her arms are too short and fat and they fall off every 10 minutes, but I was told emphatically by a nurse that "if she touches her mouth, the whole surgery could be a failure!!!" (I don't even think she can reach far enough into her mouth to touch the stitches - and besides, she almost never puts her hands in her mouth anyway.)

I find myself continually getting annoyed at various things at the hospital - maybe because it is such a culture difference for me. The nurses are not (all) kind and caring, they are bossy and condescending. There are some nice ones, but as a whole, they are overworked and have little sympathy for parents. I was less than gracious with a few of the nurses today over various things. 

Maddy is able to drink now and when she is drinking sufficient, she can have her IV removed. Since tomorrow is Saturday, there will only be one doctors round in the morning rather than two (morning and evening on weekdays) so please pray that tomorrow morning, the doctor will approve a) for her to be able to eat soft solid foods, and b) for her IV to be removed. Maddy would be SO much happier... Once she is ok to eat, and she has proven that she can eat well (I'm sure that will be no challenge for Maddy - she LOVES her food and was asking for it immediately after surgery!), then we can start to think about bringing her home.

Bernard is at the hospital doing the night shift and "sleeping" on an uncomfortable plastic chair in the tiny gap next to Maddy's cot. Tomorrow night, it's my turn!

And to sign off - here's a pic of her FINALLY sleeping tonight - it took her ages to go to sleep with all the lights and noise, and lack of dummy... ;) It's also the first time she's fallen asleep in my arms for months and months and months...

Thursday, May 10, 2012

Surgery Success

Today, Maddy had her first surgery. Overall, it was a success. She went in at 8:30am, the first surgery of the day, and they wrapped it up after five hours around 1:30pm.

Before surgery - all dressed in a gown made for someone twice Maddy's size!

One last ever suck of the dummy - she took it into the operating theatre with her and fell asleep with it still in her mouth ;)
To begin with, her airway was examined for the first time. It is something that "should" have happened when she was born but due to fears about cervical spine issues, the doctors did not want to take the risk then. Her airway is small, but otherwise healthy. Her trachea is about the same size as a newborn, and the walls are still slightly "floppy" - although nothing to worry about. 

For the rest of the surgery, Maddy needed to be intubated (ie, a breathing tube needed to be placed in her trachea to make sure she could breath throughout surgery). This was perhaps the most risky part of surgery, intubation can be tricky for many people with dwarfism due to small airways and differences in neck structure - but today, it went without a problem. 

The hearing tubes were also placed with no problem and the hearing test was run. At first glance, the hearing test showed no obvious problems, however we are still waiting for the detailed report. Her hearing would have been impaired by all the gunk built up inside, so hopefully just placing the tubes will address those issues. I will be thankful if she doesn't need hearing aids, but even if she does, I will just be happy for her hearing issues to be addressed. 

The cleft, too, was repaired with no issues. Overall, a "boring" surgery report - but "boring" is good!! 

When Maddy woke up, she was very dopey and still very tired and disoriented from the anesthesia. She was also pretty irritated at the amount of blood in her mouth, at the IV in her foot, and at the stitch holding her tongue forward (to make sure that the swelling does not block the airway). She is now in PICU and has spent most of the afternoon sleeping, but is doing well. Her oxygen levels are good, but she does have a low-grade fever (which is normal after surgery) and as her airway is a little swollen, she has a bit of stridor as well. She was asking for food and water, but the surgeon will not allow her either until tomorrow.

After surgery in PICU
Maddy will be in PICU probably for at least a day, maybe two. I'm hoping and praying it's only one though. I reached an "agreement" with the nurses there (who decide when to bend the visiting rules). I will abide by visiting hours IF Maddy is content and does not need me. If Maddy is distressed or upset and needs me, they will call me and I will come regardless of the time or the policies. I will also be calling them in the morning to see how she does overnight. Frankly, I need a good night's sleep and I have barely seen Lana in two days. As much as I don't like being separated from Maddy, I think maybe it will be good for me to look after myself and my other little girl tonight and tomorrow morning. Hopefully Maddy will still be sleepy and a bit dopey and might not even notice...

Wednesday, May 9, 2012

Ready, set...

This morning, we arrived bright and early at the hospital for Maddy's pre-op assessments. She had to meet with the cleft surgeon, the ENT surgeon and audiologist, the anesthetist, and she had to have a blood test to confirm she was infection-free.

The morning got off to a slow start and we didn't see our first doctor until around 12:30 - it was the cleft surgeon. I had written out a long list of questions and got the answers to all of them. In short:
  • Surgery is scheduled to begin at 8:30am
  • It will take between 4-6 hours
  • The schedule will look like this:
    • First, Maddy will be anesthetised but not intubated. 
    • Next, she will have a full airway assessment (endoscopy). 
    • If all is well, the breathing tube will be placed ready for surgery. 
    • After this, the grommits (hearing tubes) will be placed in both ears, and the gunk cleaned out.
    • Then, the brainstem response hearing assessment will be conducted
    • Lastly, the cleft will be repaired.
  • I will be able to take Maddy into the operating theatre and be with her as she falls asleep
  • When Maddy is waking up, if she is content, they don't allow parents in - but if she is distressed they ask the parents to come in to be with the child
  • Maddy will go to PICU immediately after recovery and will be there until they are positive that her airway is stable and not obstructed by swelling etc
  • After surgery, Maddy cannot eat or drink anything for the first 24 hrs, after that, she can take clear liquids only 
  • After surgery, Maddy cannot use her pacifier (dummy) any more, and she'll need to use elbow-splints until her stitches have healed
After seeing the cleft doctor, we went to see the ENT. We have a new ENT since our regular doctor is on leave until August (originally, our surgeon wanted us to wait for her to come back but we said no way!) - I have to say, I might like him even better than our regular ENT! He was very gentle and approachable, two qualities that are lacking in many doctors in Hong Kong. He confirmed that Maddy would need to have the hearing tubes placed. Much of what we talked about, I'd already heard from the cleft doctor. 

Next came the anesthetist - nothing new there either. From a physical check, Maddy seems good to go - that leaves one last thing: blood tests.

To begin, getting blood from Maddy is like drawing blood from a stone. It took thirty minutes for a team of doctors and nurses to get enough blood for the tests. Fortunately (or unfortunately? I'm not sure) they kicked Bernard and I out for the procedure but I think the whole ward could hear her screams. She had multiple pokes and each of them is a sizable bruise. When we got her back, she was so sweaty from crying so hard. She wasn't crying when I walked in but the moment she saw me she let out a pitiful sob and spent the next 30 minutes whimpering.

For some reason, the blood work was the last thing of the day - it was 6:30 by the time it was over - and the nurses wanted us to wait 2-3 hours for the results. Since we wanted to see Lana before she went to bed, we asked if we could go home first and they could call us if they needed to. There are three possible results for the blood work: pass, fail, or inconclusive. If it's a pass, we won't hear from the hospital at all and we will be at the hospital at 7:30am to proceed with surgery. If it's a fail, (if Maddy had an underlying infection), the hospital will cancel surgery completely. If it's inconclusive, we'll have to wake Maddy to take her in to get more blood taken. 

So if we don't hear from the hospital within the next hour, we can assume we're good to go for tomorrow morning. I will be so glad to have this over with...

Tuesday, May 8, 2012

Almost there... (plus Phuket pics!!)

This time tomorrow, we will be in the hospital. Probably not doing a whole lot - but we will be there, waiting, doing any last minute tests before surgery. Maddy doesn't have surgery until Thursday so I am not sure whether we will need to stay overnight tomorrow or not. I think that depends on what time her surgery is. If it's in the morning, they usually like the kids to stay overnight so that they are ready to go bright and early. 

I think since the last post I wrote, we must have had lots of people praying for us because I'm feeling a lot better. As much as PICU scares me, I realise that it will just be temporary and there's not that much I can do to change things. I have written a list of issues I want to talk with the doctor/hospital about, why I don't think it's healthy for Maddy to be separated from us and I plan on discussing the issues with the relevant people - but I also know that ultimately I can't change the system and may have to just deal with it. 

Maddy has been pretty healthy, although she has had a runny nose which spread to the rest of us. As always, Maddy has the most mild case and Bernard has been sickest out of us all. She is virtually 100% recovered and I'm hoping that surgery will proceed as planned. 

I'm been getting a bit of uni work done the last few days after a hugely non-profitable week last week. Still have heaps to do but I know at the hospital, there'll be lots of dead time where I'm stuck hanging out while Maddy's napping. Hopefully I'll be able to work then. 

Just before I sign off, here's a bunch of Maddy-pics from Phuket.


Enjoying the pool

Looking pretty

This is all the kids who we went with. Maddy is older than the two boys closest to her.


Feeding an elephant
Jumping into the water - Maddy LOVED doing this by the end of her trip, and now wants to jump of the sofa the same way!!

Where's Maddy?

Wednesday, May 2, 2012


We arrived home from Phuket yesterday. We had a fantastic trip. Swam every day. Ate way too much food. Played with friends (we had a group of 18 - five families, Lana's best buddies and two of their little brothers). Rode on an elephant, saw an elephant show and a monkey show... 

And now we are home, and there is a week until Maddy is admitted for her surgery. Eight days until the surgery itself. I set myself a target of doing all the reading for this semester of uni before Maddy went in for surgery, and after working really hard for the past couple of months, that goal is reachable. I still have two assignments to do before the 21st (technically before the 28th, but I want them done before I start my teaching prac) and I want to make headway on them in the next week as well - but today I've tried and tried to work but I am so preoccupied.

I'm not worried about the surgery itself - it's been a long time coming, I'm sure that Maddy will do fine. The doctors are prepared - more than prepared - for her unique airways. Medically I know she's in great hands. Of course things could theoretically go wrong - I'm especially aware of that after reading Grant's experience 18 months ago. I would post a link but Grant's blog has a virus at the moment. In short, Grant, who has the same form of dwarfism as Maddy, went in for his cleft repair and after the doctors attempted to intubate him three times, his airway started swelling causing them to need to cancel the surgery midway through, sewing his cleft back up the way it was rather than closing it. He was in PICU on a ventilator for nearly a week recovering from the experience, and still needed the surgery at a later date. If you have good antivirus software and want to have a read, check it out at

Even though I know that things CAN go wrong (they can go wrong in any surgery), the surgery itself is the least of my worries (is that irrational? Perhaps...) What worries me more is what happens after the surgery.

For the first few days (hopefully it is as short as possible), Maddy will be in the PICU. She will be on the same floor where she spent her first four months. The same double doors designed to lock parents out and patients in, except for 3pm-8pm. The other 19 hours a day, we will once again be "not allowed" to be with our daughter. She is extremely attached to me at the moment and I'm worried that she will be scared and lonely. She is extremely communicative - but very difficult to understand. She "speaks" mainly with signs and gestures, and some words which are not very clear to someone who doesn't understand her. She will be in a Chinese speaking environment when she only understands English. And for 19 hours of her day, she will be alone in that environment.

From past experience, I know that as much as I protest, they do not usually make exceptions on these rules. I plan to protest again - I really don't think that the isolation is healthy for a toddler. Particularly one who will be hurt and scared, but fully aware of what is going on around her and unable to communicate with the people around her. It is this that is really getting me down.

When Maddy is transferred from PICU to the regular surgical ward, we will be able to be with her 24 hours a day. At the moment, I'm just hoping that she won't need to spend too long in PICU - and that if we do, she will be too sleepy or drugged up for it to be traumatic for her (possibly the experience may be more traumatic for us...)

Please keep us all in your prayers and thoughts over the next couple of weeks. I can't afford to spend too much time thinking about all this as I have too much other stuff to do (although on the other hand, I think I do need to formally write out what I want from PICU to try and negotiate with the hospital so that we can be with Maddy more than just a few short hours a day). 

If anyone has any advice/encouragement/thoughts/words of experience - please comment or email me at nicolejoy81(at)

And as one last request (that makes my entire post seem so pointless), please pray for little Will over the next 24 hours - he will be born within the next day, and it will finally be clear as to whether or not his form of dwarfism is lethal or not. Either way, I'm sure it will be a long journey for his family and they need as much prayer and support as possible...

Tuesday, April 17, 2012

May 10

Today, Bernard got a call from Maddy's surgeon. He was calling to say that the only date possible for Maddy's surgery would be April 30. While it was wonderful to have a date, that was a date we specifically told them was not acceptable since we would be out of Hong Kong at the time. 

When Bernard told him that it wouldn't work, the surgeon replied "Well that is the only date available because such and such a doctor will be going on leave for three months. Would it be acceptable for you to wait for the surgery until August?"

Bernard told him, apparently in no uncertain terms, that it was most definitely NOT acceptable for us - that we have been waiting for months already and would not accept an additional three month wait just to facilitate them. The surgeon offered that another alternative might be to split the surgery up, instead of doing the cleft repair AND the grommets AND the hearing test, they could do multiple procedures. Bernard was unsure of what I would think of that idea so he asked the doctor to call me to ask me instead. Bernard then called me and relayed the entire conversation to me so that I would be prepared for the call.

I'm so grateful that the surgeon called Bernard instead of me - I would almost definitely have gotten emotional (either teary, or angry) and possibly irrational and may have felt pressured that waiting until August was our only option. Bernard, on the other hand, is far more level-headed in those situations and calmly but firmly told the doctor that what he was proposing was unacceptable and that we have been flexible for months already, and now we expect them to work around our schedule. 

I waited an hour to hear back from the surgeon, but when he called me, he had booked Maddy in for surgery on May 10. They will be able to do all three procedures in the one surgery (the cleft repair, ear tubes and hearing test) and I am so thankful for that. That all said, I know that anything could come up - Maddy could be sick at the last minute, the PICU could be unexpectedly full and unable to accommodate Maddy post-surgery, an irreplaceable doctor could be sick...

Am I happy? Well I'm relieved that we are moving forward, that there are definite plans. I'm also glad that I know about them this far in advance. We were expecting to not find out until a week, or even three days, in advance. I'm glad that we can move past this - this has been our next "hurdle" for so long, just looming there, seemingly so close - but always just out of reach. I will be glad when it is behind us. 

But all that said my daughter is having surgery, and that's never anything to rejoice about...

Monday, April 16, 2012

Video overload!!

After the past few posts of depressing doctor stuff, I figured it was time for a fun video post!! So here are some of Maddy's video highlights from the past month or so :) I think she has a bruise on her forehead in all of them - she's been doing a lot of falling lately and is still mastering the art of not landing on her forehead ;)

1. Going for a little walk. Maddy LOVES getting out of the house these days, she will push all her little strollers to the front door and bang on the door until someone takes her out. She loves going to the park but is just as happy strolling around our neighbourhood. In this video, we were just picking Lana up from her school bus.

2. Climbing the playground steps, part 2!! I posted a similar video a couple of weeks ago - same steps, but a new method of climbing them! Also this video has the very sophisticated way that Maddy descends the steps. We're working on that at physio at the moment ;)

3. At occupational therapy, they have a new slide, which Maddy LOVED - she couldn't get up by herself, but she had a great time going down over and over. Lana is practicing her wall-climbing skills in the background ;)

4. Maddy loves music and does this funny dance every time she hears it :) Super cute!!

Friday, April 13, 2012

Cleft update

First of all, thanks to all my friends who offered their support and comments in relation to my last post. It was really helpful for me to vocalise in advance what I needed to say at this appointment, and I went away thinking that it went about as well as it could have, given all the circumstances. Thanks also to those who offered suggestions - in particular, a friend suggested that I bring Bernard along with me. For some reason, I hadn't even thought of that but he came along and I was especially thankful for his support.

Today, our regular cleft doctor was on vacation (!!!) and our appointment was with one of his colleagues. That meant that he could not comment on some of the specifics - for example, he did not know whether our doctor had attempted to schedule surgery yet or not. He also could not comment on why Maddy's doctor would tell me 1-2 months and write 3 months in her file (although he failed to see why I would be bothered by that, "Two or three months is practically the same", he said).

He did seem to listen to our situation and he said they would attempt to schedule the surgery in early May. Usually with cleft repairs, the children are in hospital for 4 days. Maddy's cleft is wide and she does have a theoretically "weaker" airway so we should expect that she may be in hospital for longer than that. I'm really hoping she doesn't have more than 24 hours in PICU because I really don't want to be up there on the same floor where she spent her first 4 months (with the same ridiculous visiting hours - 3pm-8pm only)...

My main frustration today was that the doctor was extremely hesitant to give us ANY contact details, insisting that if we wanted to contact Maddy's doctor, we should do so through the hotline. After telling him "that is not good enough" over and over (I've tried that MANY times before and a) people don't answer the phone, or b) if they do, they don't speak English, or c) if they do, they are pretty useless at answering any of my questions), he did give us another number to call where we could specifically pass a message on to Maddy's doctor and ask for HIM to contact US. I could see that was the best we were getting for now so we'll see how that goes. I may have more success if I ask Maddy's doctor himself next time - I know that doctors are reluctant to pass out details for other doctors...

Maddy's doctor should be getting back from his vacation next week and the doctor we saw today said he would pass on the details of our discussion and he may get back to us - but I will not be holding my breath for that either. I might wait a week or two and try calling and leaving him a message. If all else fails, I do have the email address for Maddy's hospital pediatrician and in the past, he has forwarded emails on to other doctors for me. It's not something I want to abuse, but if I really do not hear anything from Maddy's doctor within the next couple of weeks, I may need to do that.

So for now, I'm hoping that surgery actually WILL be in early May - as to whether that happens or not, we'll just have to wait and see...

Tuesday, April 10, 2012

Asking the hard questions

Even though on here, I have no problems expressing my opinions of the doctors and medical care that Maddy has had, when it comes to expressing those same questions TO the doctors, I find it much more difficult. I can tend to avoid confrontation with them and just go with the flow rather than being assertive. I think that if I were somewhere where it seemed like doctors actually valued the opinions of the parents of their patients, I might be more open with them (and indeed, with the few doctors who I feel DO value my opinion, I express them more openly) but here, most doctors seem to view parents and their opinions as more of an annoyance rather than a valuable input into the decision making process.

On Friday, we have our next cleft appointment and I've been going over and over it, the questions I want to ask, the things I want to say... people tell me to write that stuff down so I figured I'd write it here - and then maybe after Friday I'll update with how much I actually DID ask/say and what the doctor's response was.

Just a foreword: Maddy's cleft doctors has to be probably the one I am least satisfied with. He is rough with Maddy, forcibly opening her mouth to examine her cleft where other doctors try a much gentler approach (the kindest are the dentists, they actually play with Maddy, tickling her to make her laugh, and when her mouth is open, they sneak a look then). He is at times rude and condescending towards me (although at other times, he has seemed to be trying to be sensitive). And he has told me one thing while writing something completely different on Maddy's file. Unfortunately, I have absolutely no say in which doctors we see. He is one of the most superior in his department, from what I understand. I cannot go to another hospital, unless I wanted to take Maddy out of Hong Kong. So despite my annoyances, I just have to deal with it. 

The Questions:

Why did you tell me in February that Maddy's surgery would be in 1-2 months when you wrote on her file that it would be 3 months? Did you have any intention of planning the surgery before now? 

When you were given the recommendation by our private ENT last November that Maddy's surgery should be performed as soon as possible, why did it take you three months to confirm that surgery was indeed safe? I realise that we had travel plans in late December, but why couldn't the anesthetist check her before we went? After that recommendation, why are we more than five months down the road and the surgery has not yet been performed?

After the surgery, how long do you expect that Maddy will be in PICU? How long do you expect that she will be in the surgical ward? And how long will her recovery be? How soon after surgery is it safe for her to fly? (I realise that it is impossible to predict exactly how she will tolerate surgery, but in children with similar clefts/similar airways, what range should we expect?) 

Since last November, we have put all of our plans on hold. Apart from Christmas, we have not left Hong Kong. I withdrew from my university classes so that I could support Maddy through surgery. We were given the impression that surgery would have been significantly earlier than it has been (on a side note, not only have my plans been on hold - my Mum has agreed to come to Hong Kong to help us with Maddy's recovery period. Her plans have also been on hold now for the past four months). We cannot continue to be so flexible and we now have travel plans at the end of April. If you cannot guarantee that Maddy will be safe to fly before we travel, we will not be able to do surgery within the next few weeks. 

Starting from the end of May, I will be working full time for five weeks. I cannot miss any days and cannot change the dates for whatever reason. As a result, we need to have the surgery completed and Maddy out of hospital by May 21. I don't need much notice for surgery - you can call me at 7am and tell me to have her in at 8am - we just need the surgery done within the first half of May. Please do everything within your power to make that happen.

In addition to these questions, I need to also remember to a) provide him with Bernard's blackberry number so that he has a way of contacting us while we are overseas (my phone does not have roaming), and b) ask him for his contact information if I need to contact him directly. 

I would love to hear anyone's thoughts and comments on my questions - I'm continually second guessing myself. Is it actually beneficial to be so upfront with the doctors, or could I make things worse for ourselves by doing so? Should I say more? or less? I feel like I'm going through some kind of "special needs mum initiation" here...

Andrew and Will

I want to "introduce" you guys to two very special little boys.

Meet Andrew - Andrew is one month old and has diastrophic dysplasia, like Maddy. When I saw his photos, I could see it right away - he reminds me so much of Maddy as a newborn. He just came home from hospital last week, but is still on the feeding tube.

Meet Will - well technically, you can't "meet" him yet as he is not yet born. He has some form of skeletal dysplasia (the broad category given to all kinds of skeletal issues) - possibly Osteogenesis Imperfecta (brittle bone disease). The doctors are expecting that his condition may be lethal - but there is still hope that it may not be so. He will be delivered by C-section (to reduce damage to his delicate skeleton) in about three weeks.

Both Andrew and Will's families are Christian. If you have a spare minute, please head over to their blogs, read their stories and offer a bit of support - or better yet, please pray for these two sweet little boys and their families.

Thursday, April 5, 2012

Still waiting for surgery...

Hey all, I know I haven't updated this blog for a couple of weeks. Nothing much is happening here at the moment. Maddy is growing and learning new skills. Little things mostly... like we sing songs and she does the actions, she's learning her body parts, etc... her speaking skills are still the same as they have always been but she seems to be booming in how much she understands. 

We're still waiting for the surgery to fix Maddy's cleft. It's a bit crazy... In November, I thought that the surgery would be in January, so I withdrew from my classes for that semester and planned to stay around Hong Kong. Then in January, after three frustrating days in the hospital, we learned that we may have to wait a couple more months. In mid February, we got the green light to proceed with the surgery and I was told that the surgery would be done within 1-2 months, and the two month mark is next week. I still haven't heard anything about the surgery. At a later appointment at the same hospital, the pediatrician asked me about the timing for surgery and I repeated that it would be in 1-2 months. He told me that the cleft doctor had actually written in our file THREE months - so I'm not holding my breath for surgery.

The complicated part is that, due to my understanding that surgery would be much earlier than this, we have made plans to go on a vacation with friends at the end of the month. Since we are going with friends, we can't reschedule - the hotel and flights have been booked for months anyway and are non refundable. If we wanted to change the dates this late, it would cost us 50% to do so. I'm afraid that if the hospital called us in for surgery now, we would have to choose between going ahead with the surgery, or turning them down to go on our holiday. We leave in three weeks, and I'm sure Maddy would need more recovery time than that before we put her on a plane and take her overseas...

In addition, after withdrawing from my class somewhat unnecessarily over Christmas (Australian summer session), I decided then to enroll in my February-May semester as planned. Part of my course for this semester is a five week full time student teacher placement. I am planning to do that from late May and all through June. The dates are pretty inflexible, due to the timing of my coursework and the timing of the school term. I am not able to take time off from it without withdrawing from that subject (with financial penalty, and possibly a big F on my transcript). 

SO I'm hoping and praying that Maddy's surgery will be scheduled for early May. That way, we will be back from our vacation, and I will be able to be with her at the hospital (although due to the ridiculous policies at the hospitals here in Hong Kong, I will only be "allowed" to visit her from 3-8pm while she is in PICU). Even with that, it will be difficult for me as I have final assignments that are due before my placement begins, BUT it is the only way that I see it working - unless they delay the surgery until late June or even later...

Please keep us in your thoughts/prayers about this surgery - particularly that it will be scheduled at a time that works for everyone involved... that we can still go on our vacation (actually, I think we're going regardless) and that my placement will be unaffected. Also that Maddy's health will be good and she will be physically ready for the surgery, and that the doctors will do a fantastic job (our hope is that she only needs ONE surgery to repair... some kids need multiple surgeries). 
Thanks guys :)

Friday, March 23, 2012


One of Maddy's favourite things to do is to climb. She sees steps, she wants to get up them! She also climbs all over any toys or boxes that are at home. She loves to get up on them, stand on the highest point that she can reach and clap her hands at her own cleverness. 

Lately, the weather here in Hong Kong has been beautiful and we have started to take Maddy down to the park. There are these steps down there and Maddy will spend ages going up and down - which is really good physio for her! (and much cheaper and easier too!!)

I thought I'd share this short video. Please excuse the last 5 seconds - Maddy started inching further and further back and I thought she was going to fall off a rather large drop on the side. She managed to sit up with JUST enough space and not fall down - but better safe than sorry ;)

Thursday, March 15, 2012

On the shoulders of giants

I recently looked up the quote often attributed to Isaac Newton "If I have seen further it is by standing on the shoulders of giants." Isaac Newton did say this phrase, but I never knew that he did not coin it. It had been around for hundreds of years before Newton was born. And little did I know that the phrase originally was "dwarves on the shoulders of giants"!

According to Wikipedia, the earliest recorded use of the phrase was by Bernard of Chartres, "Bernard of Chartres used to say that we [the Moderns] are like dwarves perched on the shoulders of giants [the Ancients], and thus we are able to see more and farther than the latter. And this is not at all because of the acuteness of our sight or the stature of our body, but because we are carried aloft and elevated by the magnitude of the giants."

I like the way that Isaiah di Trani puts it: "Who sees further a dwarf or a giant? Surely a giant for his eyes are situated at a higher level than those of the dwarf. But if the dwarf is placed on the shoulders of the giant who sees further? ... So too we are dwarfs astride the shoulders of giants. We master their wisdom and move beyond it. Due to their wisdom we grow wise and are able to say all that we say, but not because we are greater than they." 

I love the imagery that comes to mind with this quote - and how I hope for Maddy that she will have many "giant shoulders" to stand on!! 

Friday, March 9, 2012

Three Foot Seven

Jay has diastrophic dysplasia, the same form of dwarfism as Maddy. I love "finding" people with DD and seeing what they are doing with their lives. Have a little watch of the video on the home page to see what Jay has been up to. It made me smile, and I hope it makes you smile too :)

Tuesday, March 6, 2012

200th post - WALKING!!

As promised, I managed to get a video of Maddy's new confidence in walking. She's had the skills for a while but lacked the confidence and motivation. This video was taken at her playgroup, where we go three mornings a week. I think going to a playgroup with typically developing kids her age has really helped her to want to do what they are doing - and now she is :) 


Monday, March 5, 2012

Bursts (new videos)

I don't know how it is with most kids, but with Maddy it seems as though she develops in these bursts. She'll plateau for a while, using the skills she's gained - then all of a sudden, she starts doing things she's never done (successfully) before.

Just lately, she's gone through another one of those bursts. It has been nearly four months since Maddy's first steps and I thought for sure she would be walking more by now - but in her latest plateau, Maddy has been satisfied only walking when prompted, and taking a maximum of 10-15 steps before sitting down. Her balance has improved tremendously in that time, but I think she lacked motivation to really walk. Firstly, her butt scoot is fast and efficient and walking for her is much slower. Secondly, she is already upright when she's butt scooting - and standing doesn't even make her THAT much taller ;) And thirdly, her hands are already free when butt scooting, so walking doesn't "free her hands" like it does for babies who go from crawling to walking. Just last week though, Maddy decided that she'd give it a go and she has tentatively been walking all over the place! It's still slow and a bit careful - but she is walking without me "motivating" her. I need to get a video of her walking - she's doing awesome - but so far I haven't captured it on camera. 

The second thing that Maddy is getting better at is climbing - for a while, she has LOVED steps and would go up and down them. At my parent's house at Christmas, she really mastered going up and down a single small step. We were at Maddy's developmental check up two weeks ago and there were a set of about 5 small steps. Maddy was being really cranky for her fine motor check and I thought it was because she was tired - well as soon as she was released from her chair at the table, she made a beeline for the stairs and was instantly happy - she spent a long time just going up and down while I talked with the doctor afterward! At home, we have some toys which Maddy loves to climb on - a little stove which is close to the ground is her favourite place to sit and lately she also loves standing on it. She also loves climbing between our sofa and the chair next to it - as seen in this video I took of her last night (forgive the amount of skin in this video!). 

Maddy's fine motor skills are also developing really well and she is starting to get better at using a spoon. It is something that she has struggled with and still is not expert at (her inflexible fingers don't help - and her wrist can't seem to get the right angle without a bit of help from the other hand) - but she has the motivation now and is getting better all the time. Here is a short video of her eating peas with a spoon :)

And here's another video of what usually happens after I take a video of Maddy and she wants to see it for herself. My kids both love to watch themselves - most videos we have of Lana these days end with her saying "I want to see my video now!" ;)

I'll have to work on getting a video of Maddy's walking skills - but for now, I hope you enjoy these three.

Monday, February 20, 2012

Developmental Check and Preschool options

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...

Monday, February 13, 2012

Good to go :)

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!! 

Friday, February 10, 2012

Here we go again...

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...

Tuesday, February 7, 2012


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 :)

Thursday, February 2, 2012


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.

Wednesday, January 25, 2012

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...