one week later

We have been at Mary Free Bed for one week and Keyan has received 7 very full days of therapy.  She is making nice progress, even if it isn’t as quickly as I would like.  She is walking without a walker, just needing a little support with the gait belt.  She is bending part way down and transferring objects from one place to another.Her standing tolerance is coming along also…she is able to stand for 30 minutes with  minimal support.  We are not to the point where she could just stand and not have someone with her but it will come eventually.  Occupational therapy is working on using both hands instead of forgetting she has a left on, brushing her teeth safely, and several other things.  Speech is working on following commands, remembering age appropriate games,and only talking on her exhale…since getting sick, she wants to talk on both her inhale and exhale…give it a try, it is actually really hard but it is not the correct way.  Every day brings at least 4 hours of therapy and lots of new goals and improvements.

There are some other things that are happening that are very exciting.  First of all, she got new orthotics which she has needed for several months.  She choose pink ones with butterflies and they seems to help with her balance.  There is also an engineering group that has taken on her backpack as a project.  They could not believe that she carries that much weight on her back and they were very excited to work on making it better for her!  I am trying not to get my hopes up, but we have exhausted every avenue that we know to get a better supportive backpack and have not gotten very far…this is very promising!  Lastly, while we are here, they decided to offer her a manual wheelchair to use that she can learn to maneuver by herself.  This will give us a better idea whether or not it is time to move in that direction.  It is the cutest little wheelchair and she can actually get it to move down the hall and reverse it.  She is still working on the turning but it is awfully cute!

The therapy dogs came to visit last night and Keyan was scared out of her mind.  However, her friend “R” moved his wheelchair right next to hers and held her hand..it was so sweet.

By the end of the night, she let “charlie” put his head on her lap and was laughing at the tricks that the dogs did.

As you can see, we have been busy getting stronger and building relationships.  However, we did have a scare this morning.  Right as I was leaving to go watch Jamahl swim, Keyan had another seizure.  It wasn’t as massive as the one 4 weeks ago, but still worrisome.  The fortunate part was that the doctor was standing right in the room and saw the whole thing.  He let our neurologist know and so hopefully we can once again try to figure out what is going on.  I am very worried about why this is all happening and would love to understand why her brain is misfiring.  Here is hoping we can get some answers!

In other news, Jamahl had his first swim meet of the season today and he did awesome!  He took three whole seconds off of his back stroke time and qualified for the “A” meet with his back stroke time.  He also was in two relays that took first place and third.  It is so fun to see how much he has improved in just a short time.  We are so proud of him!