Our first day at Mayo is over. We started off bright and early this morning for an EEG. The hope was that we could get Claire to go to sleep without sedation for it--and yeah--God answered prayer and Claire slept on her own for the whole process. However, we did need her awake for part of it, and we had no success in awakening her... she choose to stay asleep until we were in the car on our way home! ha! Just like stubborn little Claire to do things her own way.
This afternoon we met with her doctor and spent about 2 hours just talking about Claire. Right now the doc would like to try a steroid treatment for her---one way to get her to gain weight. And then she scheduled several blood tests, metabolic tests, genetic tests etc. Plus her MRI--all to be done on Wednesday. Right now the doctor is not seeing any new reasons for why Claire is having these seizures... but we will wait to make that final decision. She does feel we have been doing the right things in trying to treat her.
As usual, Claire is being a little trouper. She is currently enjoying some down time to just get to play. It has been such a blessing to stay here at Carol's house. We have our own quarters, but then just a place to come crash between appointments.
Tomorrow is our free day, and we are planning on seeing some sights, and Carol has even offered to babysit sweet Claire so Russ and I can have dinner and a movie! I think we will take her up on her offer.
God is so good to allow us this trip. And if for no other reason than to realize we are doing all we can do for Claire at this moment. She continues to "work" her magic and draw people to her, which then gives us a chance to share about our gifted child.
5 comments:
I'm so glad you are able to give updates on all that is going on. Andrew and I will be praying for you this week! Sounds like you will get to relax and have a little bit of fun too :)
What a day. Thanks for the updates. It was great to talk earlier. Tell Clairebear & Russ "hey" from me.
Thank you for the updates. Sounds like all is going well thus far. I'm praying for your Claire and for the rest of the fam. Hope you had a nice date with Russ. :)
I am so thankful for your progress so far. We already miss you guys so much and Charlie and Madeline ask daily and then some about Hope. They miss her so much, too! Keep updating and we'll keep praying!
Glad to hear things have started out well. Wed. looks like a big day. We will be at the Clinic some so please call me if there is anything I can do for you.
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