Wow! Where to begin?! Our flight out went better than expected. United employees were helpful and kind. We got in late but Allies friend was there to help me get her off the plane with all our crap and to our housing.
Everyone here has been friendly and helpful. Housing is ok other than the bed LOL- maybe we are spoiled. The first day was rough and not what Allie expected. In part this is because she is tired of the medical part of it and there are a lot of evaluations. The other part was because she was advised of limitations in what she should/could do and that was very hard to hear again.
The week has been improving ! We are disappointed that so much of her time has had to focus on fitting her chairs better to her body. Unfortunately they were not measured properly when purchased. They are concerned about long term- her posture, spine etc. Also she can function better – reach etc when she is more stable in her chair which will help her gain more independence. It is amazing to see her able to sit up straight in her chairs and move so smoothly in her manual after their adjustments .
The trip has continued to be successful, medications are being adjusted. So much info from the Drs re: UTI’s etc. Allie also got lucky and was able to test an FES bike which as her therapist said “went way better than anticipated”! It kept her scapulas in place when hand biking and they stayed there a little after it was stopped. Means long term stronger muscles with use; to help those scapulas stay in place and it is also good for any neuro recovery. Also means muscles on legs etc won’t atrophy. All a really good thing for her body to keep her strong.
So new seats and backrests have been ordered, FES bike has been prescribed and we are getting ready to come home and crawl into our own beds, although we both are sad to leave- there is so much positivity, knowledge and help here. Allie will go on a list to come back for a 4 week intensive rehabilitation but they said 6-9 months. Meanwhile she will get stronger and take home what she has learned to share with PT and OT at home so that she continues to gain strength and independence and will start living life again- a hand bike is definitely in her future .
Thanks for your continued support and love- Allie is strong -and we are so lucky to have your help in this long journey. Craig is all they said it would be!
PS!!! Went for one last OT visit and they did more testing-something is happening in those hands- you never know but we are going to keep pushing!!! Praying for a smooth flight tomorrow. ❤️Lisa