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 :)
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