Hope's Birthday!

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!

Crops Of Luv

I received an email last night from an amazing Non-Profit. Crops of Luv makes scrapbooks for Make A Wish Families. They figure it costs $200-$300 to make each scrap book and they are making one for us for free. I download all of the photos to a website and give them our memorabilia, in 6 weeks, I have a custom made scrapbook! I was hoping to someday have the finances and time to do it, now I don't have to worry about it! AMAZING!
3 weeks until school starts for Hope. So much to do so little time! Her and Meg are doing a lot better with walking together. Hopefully Meg can keep it together in the classroom! Time will tell. We have an IEP the Friday before school starts. Anything I need to provide for accommodations will need to be done quickly. I'm working on her medical records now so they are on a necklace when she goes back.
Her Orthopedic Surgeon appointment is the day after her birthday and her Neurosurgeon appointment for Botox follow up is on the 30th. The Botox lasted longer this time but with the allergic reaction, not sure what will happen. The last 2 weeks of this month will be crazy! Well, crazier than normal! It will be nice to have her back in school. I will have time to study and actually go grocery shopping if I need to rather than waiting for a respite or Hab worker to be here.
We received a free invitation to view the fireworks from the Disability Empowerment Center Rooftop. From 6-8 they had a barbecue and then a live band from 8-10 and fireworks from 9-10. It was perfect. We were able to see a couple of different fireworks displays from the rooftop and we were right next to the Tempe Town Lake fireworks. We left before the fireworks ended because someone was tired. I figured we would beat all of the traffic. WRONG! It was horrible. Not sure what we will do next year but it won't involve Tempe or any surrounding areas! Her auditory sensory issues kicked in big in the car. We drove close to the fireworks launching station and it was pretty loud. Of course I had put her headphones away already. Her and Meg both did really well before the car ride home. This is her waiting for the fireworks while "listening" to the band.

We sat right in front on the misters and we both stayed nice and cool. A little wet, but not hot!
I still have not replaced my camera. I will try to borrow one from my family when we do her birthDAY trip and party. She's excited to be turning 8. We are both getting so old! She is still growing like a weed. Can't keep up! Every time I turn around I am adjust walker and stander heights. Crazy!
I'll write more after her appointment unless something exciting happens before than! Thank you everyone for your continued support and prayers!