Monday, May 23, 2011

Finally, An Update

A big boy bumbo that I made.
PT. Electrodes to stimulate his weak muscles.
Trying out a power chair. It is good for head and trunk control.
Using a stander at PT.

OT. He is on a skateboard type thing and has to use his arms to move around.
I have been so bad with the blog lately. I just don't time for anything anymore and loading pictures onto this takes forever so I procrastinate with it. Anyways, since the last time I updated Nicholas started with a new physical therapist. We are taking him to a clinic now. She is wonderful! She is very aggressive and has a lot of new ideas and tools we can use since she has everything in the clinic. She also does water therapy and hippotherapy. Hippotherapy is therapy on a horse. It is good for kids with CP because it can work the trunk muscles in a way that you can't do in regular therapy. She will ride with him when we do this. I'm very excited about both the water and hippotherapy. I've read about both of them and wanted to try them but didn't have a therapist that did them. She is seeing him twice a week and already sees an improvement in his trunk and head control. She had a different equipment company come out and look at his stander, which we've had for months but couldn't use because he didn't fit it yet. These guys had the stander fitted to him in no time. He is still a little small for it but it works. She also tapes his bad hand and it stays open! Three pieces of tape is all it takes. It is amazing. She also had him fitted for AFO's. They are ankle, foot, orthotics- braces for his legs.
We applied for extended therapy visits with Medicaid back in March. We still haven't gotten approval for it. His pediatrician's office said she has four patients that haven't been approved yet and Nicholas is one of them. She thinks it might be because we asked for speech twice a week. Both feeding therapy and AVT-his hearing therapy, are both considered speech. So we checked with insurance about therapy. Mark's company said he has 30 visits of PT, OT, and Speech each for the year. Mine covers 60 of each. Mark's company said no to OT with the diagnosis of developmentally delayed so we got a Cerebral Palsy diagnosis. They still said no. We missed a few weeks of OT because of this. Once we get the approval for extended Medicaid visits they will pay retroactively back to April 1st. It is really frustrating because he has five therapies a week. If we don't have Medicaid or insurance coverage that is about $500 out of pocket a week. We can't afford that. The Medicaid cuts are really hurting him right now.
Feeding therapy is going alright. He still isn't eating table food but we've started to mince up fruits and veggies and mix them in with his food. He is doing ok with it. Some days are better than others but it is progress. His therapist has seen improvement in his mouth muscles so that is good. He has a swallow study on Wednesday. They are looking for aspiration. We don't think he is aspirating but we need to have the study done so the therapist can renew him and see him for another 9 weeks.
He has a well visit at the pediatrician, a dentist appointment, a check up with the GI doctor, and a check up with the audiologist coming up.

Wednesday, May 11, 2011

March for Babies

I'm a little behind in my posts but The March for Babies was a success. Thank you to everyone that donated to support us in our walk. And thank you to Pam and Drew for walking with us and raising money. It was a great day for the walk. It was a lot longer than last year. Six miles and tons of hills! Last year it was raining so we turned around before we were even half way done. After the walk we went to the Sparkleberry Country Fair just like we did last year.