Rain, rain, go away!

Lil miss was pretty upset about not being able to play in the backyard, so I put her in the "balls bucket" inside the house. See pic. She was having such a great time and said "uh oh" every time she threw a ball over. Hope the weather gets better cause this could get old. Charlie and I even try NOT to walk by the back door with her in hopes of her not pointing to go outside.

Today was a busy day - aren't they all. Maya had her appointment with Dr. Lotze who is the neurologist in charge of the MDA Clinic (Muscular Dystrophy Assoc) in Houston. We had to go to Texas Children's for this one. The visit went pretty well and all we mainly discussed was how we got to where we are (testing, etc) and what we are doing now for Maya. He was supportive of the medication which is great news. He will set up our next appointments (follow up visits) and put us on the schedule to get Maya a sleep study. A sleep study includes an EEG, EKG, breathing and swallowing analysis. At the end of this study we should be able to qualify for a BiPap, a breathing machine. The better equipped we are at home, the less hospital visits Maya will have to make (which will keep her healthier). At the end of our visit, we mentioned we had to get Maya's bloodwork done after his appointment and he was so helpful. He called in a nurse to put the numbing cream on Maya, they validated our parking, and gave us vouchers for lunch. That NEVER happens. They said it was part of the MDA Clinic "benefits". A little thought goes a long way. After lunch, we had Maya's blood drawn with the same lady that did it last time - we learned our lesson this time and even waited like 45 minutes just to see this lady (Yolanda). Maya is pretty hard to get blood from and the less poking the better. We finally left the hospital at 2 just to rush back home for our 6-month ECI evaluation. This was an evaluation to discuss how her occupational therapy is going and to set new goals.

By the way, today Maya rolled from her back to her stomach and to her back again (with little help)! She hasn't done this in like 9 months. We are so excited! As far as side effects on the new meds, we are definitely noticing a few things. She is more lethargic than normal and even has tremors here and there, but it is normal and should go away within the next couple of weeks. We will adjust her dosage as necessary of course. Keeping an eye on her as always!