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Surgery and other Pics

 Maddy adopted a fuzzy caterpillar for awhile. We let him go because the jar was too small and too much of a pain to keep clean.
dogs got their annual grooming

cold while waiting on Maddy to get out of surgery
 In the hospital. This picture is the evening after she got done with surgery.
 Morning after surgery. Maddy had more energy than I did. To many nurses coming in and out during the night.
playing with the blow by oxygen mask is fun!
 Home sweet home!
 Drinking water and watching a movie.
What it's been doing here lately.

Aaron sent out an email updating most on how the surgery went. We did not get as much extension on Maddy's knees as we'd hoped but she did get to between 15 to 20 degrees to straight. Something with the way her joints are in the knees is not allowing them to grow completely straight. She could grow out of this. If not, there is a surgery she can do when she is 5 or 6 that will put a metal plate on the knee joint to cause it to grown correctly. This is a long term prayer request for Maddy.
She has not been eating or drinking much except water since we got home. Short term prayer request is for her recovery and that she'll get an appetite soon. She has also not been sleeping although last night she finally slept pretty well and only woke up once in the night.
Another prayer request is that while we were at the hospital the doctor's told us they suspect that Maddy has Beals syndrome. Though this is treated in very similar ways to arthrogryposis, it is not true arthrogryposis. Beals would explain why she is so long and skinny. Beals is closely related to Marfans which more people may have heard of but it does not usually have the eye or heart issues associated with Marfans. I hesitated to put this on because I know everyone in my family will Google it and I don't want people to be overly concerned about anything they might read. However, we'd like prayers about wisdom in any action that should be taken as far as differences from what she was previously diagnosed with. Should we try to get a genetic screen done if available? (Beals, unlike arthrogryposis, is caused by a genetic mutation). We may need to see a heart doctor just to get everything checked out. Though Beals usually doesn't involve heart issue, it does occasionally happen. So lot's of prayers about this. We do not know for 100% sure that she has this but a lot of the things that are going on with Maddy match up with Beals.
Sorry if this blog does not make since. I have had very little sleep since the surgery. Yesterday I washed and dried Maddy's hearing aids.

Comments

bee said…
I did look up Beals. It was kind of scary in some ways. Praying for all issues for Maddy and you guys daily, many times. Looks like you had a nice rain. Wish we could get that. Much love sent you way.
April 25, 2011 at 1:27 PM
Brittany said…
praying all the time!
April 25, 2011 at 2:06 PM
Brandon E. said…
Maddy is looking really good in the pictures. Quite a little trooper. Her legs look a lot straighter in the pictures. Keep us updated.
April 28, 2011 at 5:51 PM
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