Hands and Feet

I mentioned in a previous post that the occupational therapist was thinking of splinting Maddy's hands and feet. Diastrophic Dysplasia has a huge impact on the shape of the hands and feet of the people that it affects. One of the biggest tell tale signs of DD is what's called the "hitch hiker thumb" and it was this that first made me suspect that Maddy had DD back in February - we could see the shape of the hand on the ultrasound and it was very typically DD. 

In addition to the hitch hikers thumb, the middle joints of the fingers are often fused, which means that making a fist is impossible. The fingers can still bend at the other two joints though - and although you would think that this would make the hands pretty difficult to use, people with DD learn to adapt and do things in a different way. For example, they wouldn't be able to hold a pen in the conventional way - but they find other ways to hold a pen so that they are still able to write. 

Here are a few pictures of Maddy's hands:

I talked with the Physiotherapist the other day and she said that we will not be splinting the hands at the moment - my preference is that we don't splint them at all. People who have more experience with DD have told me that it doesn't offer any real benefits at the hands can function as they are and splinting can lead to other problems such as stiffness. I talked with the Physio about this, and she really hasn't had any experience with DD at all, but I think she at least listened to me. I know that we all just want what's best for Maddy.

Most people who have DD also have clubbed feet, ranging from mild to very severe. Most of them will need to have both splinting done at birth, as well as surgeries done when they're a little older. I personally don't think that Maddy's are particularly bad, comparing to photos that I've seen online - and the doctors don't seem to think they are that bad either because they don't want to splint them at all. I'm a little worried though, knowing that most babies DO need their feet splinted - so I don't want to be missing a problem only to find out later that we should have splinted now but no one pushed for it. 

Here are some pictures of Maddy's feet:

All baby toes are cute baby toes aren't they? You can notice that there is a pretty big gap between her big toe and her other toes. And also all her toes are not quite 100% straight. Her foot print looks a bit more slightly "C" shaped than another baby's would. And look at those chubby legs too!! I think it's cute that her diaper nearly comes to her knees too. When I see pictures of other newborns these days, they look kind of odd with their long arms and legs!!

This picture shows her "range of motion" - her feet can move to 90 degrees to her leg. Severely clubbed feet can't do that. To me it looks pretty good - but really I don't know exactly what to look for and would love the opinions of other DD mums!!

Another foot shot - in this one, you can really see the big gap between her big toe and the next toe. Also one thing I'm a little worried about is that her feet seem to bend more "outways", not completely flat to the floor, more like if she was walking on her toe and the arch of her foot, with the outside of the foot not touching the floor. I know that I'm completely over-analysing her feet - but like I said earlier, I just don't want to miss a problem because I didn't know what to look for, and then to regret not getting those issues treated earlier when she's older...

Anyway - in other "Maddy news", the plastic surgeon came to see her today with regard to the cleft palate repair. We will need to go and see him in about two months, and then he will follow up with her over the next year or so and hopefully that will be repaired when she is ready - I think usually around 12 months of age... 

Also apparently the results from the CT scan should be in tomorrow - fingers crossed!! It's about time too, I've been getting so impatient. I don't understand why everything takes so long. The ENT is anxious to clear Maddy's airways so hopefully her opinion won't take longer than a day or so, and double hopefully her opinion is that Maddy's airways are strong enough for her to not need the bronchoscopy and that she can start oral feedings with no risk her airways!! I'm so wanting our little girl to come home and I know that she's strong enough!! I'd love to have her home before she's a month old on Saturday, although I think that's probably pushing my luck a bit... 

Anyway - I'll just leave you with a few last pictures of our baby girl :)

Playing with her bunny rattle that Mummy bought when she was still pregnant :)

Sleeping like an angel :)