Okay...okay...sorry for slacking on the blog. Yesterday as I played on Facebook, our friend Margie IM'd me and told me to stay off of Facebook and update Carson's blog...so here I am. Thanks Margie! I've been relying on Em to keep this updated in all her free time at home...haha!
There is a lot going on. As you know, Carson got approved for the waiver, which is one of the biggest blessings for us. He started his new therapy center for OT about ten days ago. He goes on Tuesdays and Thursdays from 2:00 - 3:00 p.m. He didn't do so hot the first day but this last week went much better. The therapist is very impressed with him and even asked Emily if she is sure it's Autism. Yay! She said that within two years, he should no longer be considered autistic. Of course, this is only one opinion but it is still great to hear. We are on the wait list for speech therapy so hopefully, that will start soon.
On another front, with the waiver, we quality for Respit (sp.?). This is basically having someone come to your home to help play with Carson, work on skills, etc. It is basically to give the parents a break to do something else. This person can go to family parties, shopping, vacations, etc. It's kind of like a nanny. We can get up to 38 hours per week but that seems like a lot and quite honestly, I can't imagine having someone here every night when I get home from work. After working all day, I usually like to just chill with my boys and Em at night through the week. I only get a few hours to see them. We decided to try about 17-20 hours for now, mostly in the afternoon when Em is by herself with both boys. We get to interview the people as they become available and decide if they are a good match for our family. We had our first interview last Friday. I won't go into details on here as to how it went but will be happy to tell some of you in person.....didn't pick that one. We didn't know how long we would have to wait for another interview but we lucked out and had one on Thursday. It went great! We hired her on the spot. She starts on Thursday. She works as a Para-pro at a local school and works with kids with Aspergers, etc. She also has a daughter with special needs so she knows exactly what we are dealing with. Right now, it seems like a perfect fit. She will be here M/W/F from 2:00 - 6:00 p.m. and T/TH from 3:30 - 6:00 p.m. after Carson's therapy. This will give Em time to make dinner, etc. and we'll see if she can really cook???? haha!
We also started seeing a new psychiatrist. She practices homeopathy, which is very different but we're open to anything. We had an appt. a couple of weeks ago and she recommended a "remedy." We started it on Tuesday. He had been sleeping through the night before that but he is on two prescriptions and we'd like him off of them. Wednesday and Thursday he was up a lot through the night. She told us that the "remedy" may make him worse before better. It did! Friday and Saturday night went well and he seems to be improving so maybe she's on to something. We'll see. According to her, if the remedy works, it could cure all of his symptoms and he could start coming off the other meds and supplements. We'll see.
We started a new anti-fungal about three weeks ago. Nystatin is the one I read about and the one I had wanted the first time so the DAN Dr. prescribed it for us. This last week, Carson had tons of crazy BM's which seemed to be a lot of fungus coming out. Amazing! Disgusting...yes, but it is working! The other anti-fungal wasn't doing anything.
Our next step may be hyperbaric oxygen therapy. We're looking into it to begin in March when we get back from Florida. It's a big commitment because Carson needs to be in it for an hour at a time twice a day and it costs $2K per month out of pocket so we have to be sure that he will be able to be in it for two hours everyday, thus the reason to wait until after our vacation.
Carson did great at Blake's birthday yesterday so we're hoping for the same today as we celebrate birthdays for Nonna, Uncle Ron, and Aunt Amiee. Two nights in a row of sleep so maybe we're on an up swing. Keep your fingers crossed. A lot of good things have been happening this week......finally!
Thanks for reading!