Saturday, February 27, 2010

Medical update

Adam saw two different doctors this week. The neurologist and the orthopedic surgeon. This makes 5 doctor's appointments and a lab appointment in 3 weeks. This will continue as we start physical therapy Monday, see the neurosurgeon the next week, have two procedures done in the next few weeks and see the opthamalogist by the end on March.

Yesterday at the ortho appointment he was so good. They took two xray's, one of his hips and one of his spine. He never cried. He lie perfectly still while they took the pictures. He let them role him on his side and put his legs in position and wasn't scared at all. You can tell he has done this before. With all he has been through and continues to go through he is still such a sweet boy.

Next week he will have a procedure done to get his left foot into a flexed position. It is very tight in a pointed position. His right foot is also pointed but you can manually move it to flex. The left one won't budge. The procedure next Friday will cut the tendon in his left heel to allow his foot to flex. It will be cast for 6 weeks. He will be measured for AFO's to keep his feet flexed and for braces. We will begin working in physical therapy to get him upright. I left the appointment yesterday with tears in my eyes. I could hardly tell Greg " They are going to try get him on his feet." Adam has never held his own weight on flat feet. Of course I will update this site as soon as possible as things progress. We are so hopeful for him!

The other issue is he does have one dislocated hip. We are not sure how this will be treated. Most of the time with Spina Bifida both hips are dislocated and neither is treated. In a higher functioning patient treatment may be the best route. We won't know the extent of his mobility functioning for awhile so for now we are just waiting on that.

The neurologist felt like we may not need her on a regular basis. She handles more of the cognitive issues that can come along with SB. Not all SB patients have cognitive delays or brain malformations. The thinking now is he does not. A brain scan will be done when the neurosurgeon does his spinal scan and then we will know for sure.

Wow that is a lot to take in. We are just taking one day at a time. We have great doctors and we are trusting the expertise in each of these areas. Adam seems completely unaffected by what is going on around him. He is happy and just wants to play with his brothers and sisters.

I am going to post this weekend an update on Sam and Adam's relationship. They really have come a long way. I am also thinking about changing the name of the blog to reflect more of a family blog. The older three have each had some accomplishments lately that I would like to share. That will be sometime next week in between the PT and the ortho procedure! Here is a hint at what I might call it.

Proverbs 24: 3-4
By wisdom a house is built,
and through understanding it is established;
through knowledge its rooms are filled
with rare and beautiful treasures.

Blessings to you!

PS- Obviously I have no medical training so these updates will be in "Mom terms" not "medical terms". I am learning so much more that I knew before.


  1. Your story has really touched me. I am so happy for Adam and for your family. May God bless you and your family.

  2. I'll be praying for the upcoming procedure. My daughter will have a tendon transfer in June on her arms. She has Arthrogryposis so her tendons are very tight as well. Sounds like you have awesome doctors! It's going to be glorious to see him standing on his own two feet! God is sooooo AMAZING!!! Hang in there!


  3. I've been so blessed to follow your family's journey to Adam. God's hand is clearly on his life. Glad to hear the news from the doctors is so optimistic.