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...

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!! 

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...

Communicating

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

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

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!!