Easter & Ortho

As you can see Meg had dun helping find Easter eggs too! I found a keyboard on Craigslist for Hope and she is in love. I wish it came with headphones though!! Not nice waking up to it.
We went to have her casted for new braces and have her current braces fixed today. She was casted. Waiting for approval from Shriner's to pay for a new complex pair. Her current braces could not be adjusted. Her legs have gotten so tight that her feet are rubbing against them and starting to cause a pressure sore. She is not wearing braces until the new ones are ready. I predict a sprain or fracture again in the near future. (Just had one less than 3 months ago!) They are making new braces that are hinged in her ankles and will allow some ankle movement. Her knees are so tight she is not able to do a long sit or put her heel on the ground while she is walking. She sleeps on her tummy and her heels touch her butt. These braces won't make her heel hit the floor but should allow her to find a center of balance. Her legs have to be crouched some for that to happen. Chances of her tendons stretching to a normal length are unlikely. Since I have exhausted every surgical option and medical option out there, we are back to good old fashion stretching everyday. Which we do anyways but now she will be on a strict schedule that all of her providers will have to take part in while I am on field work. I'm breaking out the sewing machine tomorrow and making a hot pack too. Should be interesting! I'm not the Martha Stewart type! She will have to get back in her stander no matter how much she whines too. The down side, she learned how to break out of it! I'm thinking I might need to invest in some longer bungee cords and duct tape! I will have to take time off fieldwork to go back for the fitting of her new braces. The owner is amazing and said we could do it on a Friday afternoon when I meet with the owner of the company so I won't be missing any actual treatment time. Hopefully the owner will be okay with that! Even with Hope tightening up so bad, the fact that she has all of these things against her (Cerebral Palsy, Ataxia & Dystonia) it is a miracle she is still able to walk and not a "pretzel" as the orthotist put it.
Thank you all for your continued support and prayers! They are truly appreciated!

Long Over due!

I apologize for not getting this done sooner! Things have been really crazy! Hope had Myobloc injections just before the new year. Nightmare!!! She had so many awful side effects from it including pneumonia. Needless to say we wont be doing that again. We are still waiting to hear if her soleus (inner calf muscle) is permanently paralyzed. Despite all of that she is doing well. Her legs are extremely tight every morning but loosen up throughout the day. She is still walking with her dog at school and it is amazing to see!! She is now streamlined for all of her classes!! She is in with her typical peers all day long! So proud of her! She loves reading now and use to hate it!
I just finished my last semester in the class room. I have a week off and then start fieldwork for 4 months. I work full time and pay to work. Fun times! It will be a wonderful learning experience. I am with a pediatric home health agency first and then in a hospital. Very exciting! I had 5 classes this last semester and ended with a 93, 96, 98, 99 and 100!!! Woot woot!!
May 7th is Hope and Meg's graduation followed by Desert Heat. Hope's track competition Saturday night and then Sunday early morning is Hope's archery competition! LONG weekend!! Can't wait until it is over! Hope has been nailing bullseyes at 10M and having some difficulties at 15M. She really loves it though! It breaks my heart yet makes me so proud when she gets out of her track chair. She goes back to track every week enthusiastic and then gets out of her chair and is screaming with bad muscle spasms. I'm hoping to find a way to get her in a hand cycle. The positioning isn't quite as bad but not sure her legs will let her do it. Not to mention its a lot of money I don't have. I'll find a way to make it work though.
I will be sure to post pictures of their graduation and competitions as soon as I can. You probably won't hear from me in the next 4 months unless something drastic happens though. Thank you all for your continued support and love! Hope all is well with you and yours!