Vacation was nice even though Dacotah slept horrible and by horrible he was waking up every 60-90 min, every single night we were away. The last two nights were the worst when he woke up every 30-60 minutes and had a hard time going back to sleep. Definitely made for some long days.
On Saturday we went to Wilderness with mamaw, papaw, uncle Wes, Aunt Ashley, and cousin Caleb. Dacotah and Caleb got along so well. Caleb is 16 months old and they created their own communication. I loved watching them play and getting along so nice!
The first night at Wilderness Travis and I watched as Dacotah's body language started going downhill, after his nap (laying in Mommy's arms) he was more irritable and we decided to leave the pool area and figure out dinner. As I've mentioned in previous posts I cringe at going out to eat with him, the allergies and the possibility of him going to the hospital is not worth it to me. By the time we got back to the room Dacotah was a screaming mess. So instead of joining everyone else we sent daddy to bring dinner back to the hotel. Dacotah started calming down when I took him out on the hotel deck for some fresh air. We sat in silence and finally he laid down on his stomach and started smiling again. By the time dinner was over he was ready to visit again before going to bed.
Dacotah has his good days and his bad, but his good moments are starting to get a little longer. I think him being able to communicate yes and no has made a HUGE HUGE difference. Now when he points he will say "dis or dat". He's started saying papaw again, beep beep, and his new favorite is bus. Daddy had worked with teaching him to say I love you with their own sign language. Travis will get Dacotah's attention and point to his eye, then his heart, and then to the person or thing. If you sign I love you to Dacotah he giggles and the smile melts the room. So even though he's not talking yet, I know he will.
He is starting preschool in August about a week after his dental work. He is going to have Montana's preschool teacher Mrs. M. I am still nervous but she was amazing with Montana (sissy had separation anxiety). We have gone over what to do when rashes occur and when it's a Epi-pen concern. It's my hope with it only being half days everything is smooth as he will get the interaction with other kids his age (hoping this leads to an explosive language boost) and it keeps him away from food at school.
So as you can imagine with the Austic Disorder we are meeting with other professionals to rule out any other issues. Today I'm taking him to have his hearing checked. We are positive he can hear but we are ruling it out for the speech delay. It's possible he may hear too well. My fear honestly is he won't be still or quiet enough for the ear phones. Fingers crossed he will watch a silent video of himself long enough for an accurate reading.
Dr. Cook had ordered a genetics test on Dacotah. While this is not a debate I will say at this point we are looking for any answer as to why Dacotah has sensory issues. If there are other problems along with ASD we need to know so he can get the best help possible. The results came back while we were on vacation and he has Kleinfelters Syndrome he has an extra X chromosome in one of his DNA strands. I've read what little information is out there and only one symptom currently seems to affect Dacotah and that's the learning delay. Long term I don't know what it means...sooooo he goes Monday morning to see a genetics specialist with ETSU who will be able to tell us more and what we can expect as he gets older.
Eating textured food or new foods as I have mentioned before is an issue. Dr. Cook has set up a feeding evaluation at UVA in Charlottesville. They called Tuesday and set him an appointment for the end of August.
So as you can expect it has been very busy trying to keep all of his appointments in order. I'm hoping by September to repeat the Alcat test to see where his allergies are at that point. Please pray that he can outgrow the big ones like the milk and eggs! I'm still hopeful his immune system will build up immunity after we find a sleep solution.
We start the 1x a week OT today. I haven't heard from speech, I guess that's my biggest issue right now is everyone is focused more on his nursing than on his speech. I had one doctor tell me he'd never sleep through the night as long as he nursed (yet I have a friend who's 4 month old doesn't nurse at night), I think that makes the point that each child's needs are different.
It gets overwhelming at times especially when I want to know what's going on in his world, I want him to talk so much and I know he will in his own time! My prayer is that by the time he is five you'd never know we had any concerns.
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