January surgery

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

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

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

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

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

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

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

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

First steps

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

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

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

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

Random bits and pieces

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

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

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

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

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

Inclusive Education

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

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

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

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

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

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

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

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

Ears and Feet

Feet

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

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

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


Ears

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

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

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

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

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

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

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

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