Molly learned a new "game" tonight while crawling around on the floor. She was experimenting on the hardwood floors pushing herself around and then started wiggling around while on her back. Here is a video of her wiggling CLICK HERE
We have applied for a state program called CAP-C, which is for medically fragile children, and a nurse came on Friday for a home visit and to fill out paperwork. The program would provide us with a nurses aid 3 hours a day as well as 20-30 hours of respite care per month. It would also give her Medicaid as a secondary insurance. I am extremely excited about the possibility of this working out, but we are trying not to get our hopes up.
Molly has gotten extremely mobile and active in the past week and it is making for an exhausting day for both Jim and I. We can no longer turn our back or walk out of the room for even an instant. She was sitting on the floor playing while I was going over a typical day with the nurse and she flopped forward and began crying with a terrible cry. I rushed over and picked her up and tried to comfort her and tried not to freak out too much myself. We have learned that she responds to our reaction and if we get emotional it is hard to tell if she is hurt or not. It seems that in this case she was in a bad position, which either scared her, hurt her, or both. It was a frightening minute or two, but thankfully was OK, but made me aware of all of the risks that come with her being so active. It also demonstrated all too well to the nurse what makes taking care of Molly so different than a "normal" child. She promptly made some notes for our application that will hopefully help us to be approved. It is a long shot, but definitely worth applying for.
Life has become much more challenging as a result of her new activity level. She is WAY too young for us to be able to set any sort of limits or to try and plead with her to please not pull up to her knees using a ball or a wicker basket etc. I now have to put her into her high chair to do something as simple as go to the bathroom. I don't feel comfortable even going 20 feet away to the kitchen to get her a drink. I am not enjoying this new phase and I hope that we come up with some solutions to make life a little more manageable.
She is working hard on her verbal and signing communication and has added "please" to her sign repertoire and is making new sounds and "words" every day. She is extremely happy and fun and we are enjoying immensely despite our new found challenges. She absolutely loves music and will often dance to it unprompted.
Molly Standing (with some of her weight on my hand) and checking herself out in the mirror:
Molly at the new water therapy pool we found:
We have been working on having her "stand" on her knees for short periods with good success:
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