Sunday, December 5, 2010
Botox and more
We seen Carver's Neurologist last Wednesday. Carver's spasticity in his legs isn't getting better with neurontin, anymore. We tried baclofen prior to neurontin and it didn't work, either. So, the Neurologist has finally agreed to do Botox. Botox (neurotoxin) works in the muscle where it is injected by blocking signals that tell the muscle to contract. Hopefully this will help relax the muscles in Carver's legs and allow his legs to be more functional. The doctor agreed to do injections in Carver's adductors and his hamstrings. Carver also has quite a bit of spasticity in his lower back and right arm. However, due to Carver's size (dosage limitations), the doctor is only able to treat the most needed areas. Carver will continue to take neurontin to help with the other areas.
Carver is really starting to come alive with his Cochlear Implants. It's becoming more obvious that he is not only paying attention to sounds, but learning their meaning. He's also starting to use the little bit of vision in his left eye. Carver is so mobile now - rolling on the floor. He used to stay in the great room and only rolled around in a very defined area. Now, he's rolling into the Kitchen and halls. Sometimes, I walk into the great room and have no idea where's he gone. It's not hard to find him, but always a shock. He loves going to the changing table where we keep a plastic mat. He lays on the plastic mat and scratches it. I think he likes the way it sounds. He has the path to the mat memorized, and can roll straight there without getting lost along the way. He can roll right and left, but prefers to roll to the left. I believe this is due to the fact that he only has vision in his left eye (rolling to the right would be like rolling blindly), and the fact that his left arm has more function then the right. He uses the right arm to push himself over his left shoulder. If he gets in a position (hits a wall or object) and can't roll to the left, he will lift both legs in the air (above the wall or object) and drop his legs to the other side of his body, then push off and continue rolling to the left until he gets to his destination. I've even seen him go back-n-forth between the plastic mat in the kitchen and the great room. When her returns to the great room, he is typically looking for a toy to play with. He doesn't stop until he finds the toy. It's such a pleasant surprise to suddenly hear one of Carver's toys playing music, and to see that Carver has moved to the great room and he's the one playing with the toy - no help from anyone. If he accidentally turns the toy to the off position, he cries and yells until someone turns the toy back to the on position. I'm not sure if this is because he wants to hear the toy, or if he wants to see the lights that light up when the toy is on. Either way, I'm trilled that he notices.
We're still waiting on insurance approval for Carver right CI surgery. So, it's not looking like he'll be activated by Christmas.
Carver has done very well without oxygen at night. I've only had to use it a few nights with colds.
We applied for family support funding through the MRDD waiver. This funding comes up once a year and is typically how we fund Kinnick and Carver's needed equipment. Due to cutbacks, we didn't qualify for funding this year. They excluded anyone that was receiving any kind of funding (regardless of type of funding) from another waiver program. We receive a medicaid card for Kinnick and Carver which provides nursing in the home via the Technology Asisted waiver. Therefore, we didn't qualify this year. We only requested funding for a replacement highchair for Carver. Kinnick and Carver are still using the baby highchair for meals. Kinnick is capable of sitting in a regular chair, but Carver requires full support. So, we're needing a special chair for feeds. Fortunately, my private insurance (BCBS) has agreed to pay for the seat. I didn't think they would pay for it, so we were surprised when they approved the request. Carver should receive his new highchair before the end of year. We ordered a Special Tomato Mobile Positioning System. These cost around $3,000, so hopefully it will accommodate for several years.
I still have lots to talk about, but I'll save it for another post. This post is getting rather long.