Thanks to the right gift cards, people and coupons, Hope had a fabulous birthday! We went to see Despicable Me and then the new aquarium at AZ Mills Mall on Friday. On Saturday, our friend Carol made the most beautiful Barbie cake for her, some dear friends and family came over and she had wonderful presents! That included a gift card to Build A Bear and cash! She spent almost all of it at Build A Bear on Sunday, of course! She is now the proud owner of a unicorn called Pony along with an iCarly purse, phone and brush for Pony! There is a picture in the slide show of our birthday tradition. Every year she wakes up in her bed surrounded by balloons. Meg wasn't too happy about that! She did well though!
There are some pictures of Hope using Meg as a therapy dog with her OT. Her OT has her own therapy dog and is helping train Meg as a part of Hope's therapy. Meg is wearing a jacket the therapist made in one of the pictures. There are zippers, buttons and snaps on the sides and on the top is velcro where she attaches a dry erase/magnetic board for the kids to use. Someday when I have time, I will get creative as well. I should probably improve my sewing skills before I attempt that though!
Today we went to the Orthopedic Surgeon. I was not impressed. We are on a PRN basis though. We will call them if we need them. He officially diagnosed her with Dystonia, referred us to Neurology and back to the wheelchair clinic and Dr Shafron. Dystonia is the movement disorder I have spoke of before. Her tone is great while she is in a resting position. The second she moves/walks, a bunch of involuntary movement kicks in. She has no control over it. There is no cure or surgical procedure for Dystonia. There really isn't a therapeutic treatment to help either other than coping skills. It's just something you have that doesn't get better. There is an oral medication. Here's hoping this is the first thing she doesn't have some weird reaction to! We will see the neurologist to get a prescription for the new medication. Fun!Here's hoping it won't mess up her school performance too! The wheelchair clinic revisit is because they didn't cure our issue a couple of weeks ago when we were there. I think I might yell this time! They built her some foot plates because her feet kept getting stuck behind the previous ones. Well, they gets stuck behind these and it's ten times worse. She has also almost outgrown her chair vertically. She is so stinkin tall! Last but not least we go back to Dr Shafron next Friday. I was informed today that there are a few different kinds of Botox. Hopefully insurance will allow us to try a different kind and hopefully she won't have an allergic reaction. I'll leave that up to Shafron next week though.
Monday is her first day of school! She is definitely NOT excited! I am working on it though. I have her IEP Thursday and meet the teacher is that night. I already have 4 pages for the IEP and am not done yet. I hope they planned more than an hour! I'm nervous about Meg on the bus but I spoke to transportation and she has an aide on the bus to help out. The school doesn't want Meg there the first day since anxiety will so be high. Transportation is allowing us to put Meg on and off the bus when they pick her up though. Meg will be a wreck without her kid and visa versus. I'm hoping Tuesday through Friday Meg can ride with her, I will meet them at school and work with everyone and then bring her home before I go to school. Meg is still having issues with table surfing (stealing food) and wanting to play with other kids and dogs. She did really well at the doctor with Hope today. I think school will either make them or break them. Time will tell!
School is rough! I'm keeping up so far. If I pass each test, I am ecstatic! I think that is the overall moral of the class. It is very unorganized being the pilot program and that is what is making it so difficult. Our test today was 60 questions based on 400 note cards. They are preparing us for our 4 hour certification test. One day at a time! I have less than a year until I am done with the classroom portion. Come on May! We are starting a student organization (SOTA) and I was nominated VP! Extra work but it should be fun and will be a great opportunity to network.
I think that is all for now! I will try and post later this week after the fun filled IEP. Thank you all for the birthday wishes, continued support and prayers!
I forgot, there is a picture of her new track chair in the slide show as well!
ReplyDeleteWhat a beautiful birthday girl! Are you sure she isn't like 16??? Holy cow she is tall now! So glad she had a great birthday! :)
ReplyDeleteShe talks like a 16 year old too! I promise I don't give her miracle grow!
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