Wow, had someone told me how the past two weeks were going to go, I would have seriously doubted it would even be possible. No not really, but I would have doubted it would be our reality this soon.
SOOOOooo... Dacotah is down to one sleep medicine, we give him the Melatonin to get him to sleep, but he is finally staying asleep from around 9-6 or 7am. We will take it. We also got rid of the sound machine in the room, so we just have a fan outside the bedroom door.
For the first time since having Dacotah I left him and his sister alone with their daddy. I took a 6 day trip to Canada to visit my family and friends that live up there. I hurt at the thought of leaving him for that long, but I knew deep down I needed to get away and just have some time alone and away from the therapies, the autism, the klinefelter's, the lack of sleep, etc. I just needed time to recharge. Haters are going to hate, but I have found having a few days alone by myself makes me a better mom deep down, it's part of being an introvert by nature. Sooooo off I went. I drove, yes that's a long drive, and no I won't do it again, next time I'm flying. The first night I was about a five hour drive away, so I could have still came back the next day if I needed to. But you know what Dacotah did great, his daddy said he went to bed, he slept (woke up for about 3 hours) and slept some more. He did his normal routine without mommy being home!!! Super special thanks to my husband who played single dad for 5 nights, but kept the kids alive, well, and fed. Thanks to Dacotah's preschool teacher who agreed to keep him longer in the afternoon until my friend Jenny could get him. Thanks to Jenny for watching both kids until Travis got home from work. It was a HUGE team event.
Upon returning, one child ran to hug me with the biggest grin on his face. The other started crying happy tears. I picked Dacotah up from his preschool teacher and as soon as we got through the door he carried on with his normal every day routine, it was as though I wasn't gone at all. I have to agree with daddy on this but it's as though Dacotah knew I was gone, but he has no concept of time (so the 6 days could have been the same as 1). Either way I am glad he did great and I'm glad to be back home.
So onto the more exciting news. Dacotah is talking! Rather I should say he is talking more. He is echoing almost anything we tell him now. If we say it's over there he will look and say over there. His language is still behind, but I can tell he's ready to break out and is trying his best to start talking. I really thing deep down his brain is slowly rewiring to another part so he can talk more. I know someone once said kids with Klinefelter's tend to have part of their brain that likes to sleep, so who knows maybe it's waking up, but he is trying to talk to us more.
Dacotah is starting to flap his hands when he is really excited about something. We notice him do it more at the playground upon arriving, or at the mall where there are a lot of people around. He also do what I call crabbing. He constantly pinches his thumb and index finger together, if you try to physically stop him he screams, but so far we are able to redirect him.
We had a meeting with a lady last Friday. She said on their paperwork he would have needed to meet 3 out of 6 areas to qualify to be wait listed for Medicaid. This list is years long and only 3-4 kids are added to it each year. In less than 15 minutes she informed me that Dacotah was behind in 5 out of 6 areas making him a high priority. So officially he is on the wait list. I did find out from another mom, that Virginia is starting an ICC waiver, that should be able to help and maybe by the first part of next year we can consider getting him some 1 on 1 ABA therapy going.
ABA is a tough call. I know a lot of Autistic kids benefit from it greatly. I also know that most of the time there is a stay at home parent who can always attend the therapy sessions. Still praying that God shows Travis and I the best decision for what Dacotah needs.
We thought and talked about taking Dacotah to see the Doctor in Maryland. Last night we decided that it is not the best idea for our family. It's $1300 out of pocket and our insurance wont' touch it because it's so far out of state. It's always a long drive. Travis and I decided that the autism at this point needs to be our bigger focus and we need to find someone closer who can help with that. Now the question we have is whether to get him in to the Olson Clinic in Asheville, or taking him to UT. I'll keep you posted.
Anyway there's our amazing update and we will continue taking one step at a time forward.
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