And we're off!

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

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

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

New Shoes for Maddy

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

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

Two months in Medicine (again)

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

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

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

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

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

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

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

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

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

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

Looking back - advice from another special needs mum

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

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

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

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

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

Remembering NICU...

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

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

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

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

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

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

Standing

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

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

Go Maddy!!