We visited with Dr. Engel today. The above image is from the Mayo Clinic's Neurology display. He's the guy who does a lot of research on folks like Kyla. In our meeting with him, we discussed how well Kyla is doing. He said the EMG looked good from this morning and that the 3,4 DAP appeared to help her a little. However, she is doing so well, he would recommend that we not start the 3,4 DAP as the benefits do not outweigh the risks since Kyla is doing so well.
This is Neely typing and Sabrina and I haven't fully discussed this yet, but I'll give my gut reaction to this news. On one hand, it is great to hear that Kyla is doing so well for someone who has a Congenital Myasthenic Syndrome. She completed Kindergarten and did really well in the process. On the other hand, if there is something out there that will help her even more, I would love to give it a try. She has trouble with fatigue in so many areas, such as writing, looking at the board, reading, running, and on and on.
We have 5 more tests scheduled and meet with Dr. Engel and another neurologist later in the week. By then, he may have other recommendations.
Kyla is recovered from the EMG and is ready to go to the park. Here's a few pictures from today's visit to Mayo.
3 comments:
Hey guys...thanks for updating your blog and keeping us all informed. Your A2 family will continue to pray for all of you!
David and Kristin
Kyla, Pete is doing well, he misses you and can't wait for you to come home.
It's great to see the Carter's having so much fun. Glad you guys went up early to see the sights.Looks like you guys are having fun.
Kyla you are such a brave and awesome little girl. It's good to hear the doctors are seeing what we see on a weekly basis, a girl who continues to defy the odds and do amazing things.
We miss you guys,
Love and Prayers
The Wood's
Our prayers and thoughts are with you. Faith BC loves Kyla and the Carter family! PScott
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