Good God it's July! We're at the end of our 3rd month with this battle. I can remember the neurologist telling Bella way back during her first hospital visit that she couldn't promise her when she would dance again - she said it could be 6 weeks, 9 months, or longer. We've passed the 6 week mark and I pray we don't hit the 9 month mark. It is hard to continue to stay hopeful as the days and weeks and months pass.
We had a tough weekend emotionally. I've fought putting Bella on an anti-depressant because how much medicine can one shrinking 10 year old take? But after this last weekend, I really think she needs something to help balance her mood. She has so much trouble controlling her emotions. Honestly it is like having a toddler again. It is hard on all of us.
Saturday morning we had our first home PT visit. The lady that came is a PT student and is earning some extra money and experience by working with Bella. She came for 2 hours and was awesome! She comes back Tuesday afternoon. A second lady is coming by Wednesday evening to meet us and set up a schedule. We're hoping that the 2 of them can cover 6 days a week to add to the therapy Bella gets at Dell. My insurance has a hard max of 20 PT visits and Bella has had 17 already. I'm fighting the battle with them for more - pray I win that fight. In the meantime, her OT (which insurance will cover unlimited, go figure) is trying to incorporate as much physical movement as she can into Bella's OT sessions. We're hoping that the home PT visits plus our coaching will work even if insurance doesn't agree to cover more.
After a very emotional weekend where Bella focused on what she couldn't do and backed out of the bat cruise because of her limitations, she had an awesome day today. She walked with her walker and about 10% assistance at therapy and again at home. She counted 100 steps but I'm pretty sure she later did more while I was working. She rode a bike at therapy, transferred to a bosu (sp?) ball and bounced while she stretched with a band. The therapist sent the band home for Bella to work on her hand/upper body strength.
Getting sleepy so I'm going to stop here. Some friends are organizing a fundraising event for Bella to be held in Liberty Hill on August 3rd at 6. I'll share more details as I know them.
Riding the bike at therapy Monday
Carefully learning to walk
Bella going through a Coach Herman workout yesterday.
No comments:
Post a Comment