It has been awhile since I updated about Dakota...I have struggled finding the time to even get on the computer lately...life is so busy and when Dakota is awake I feel guilty being on the computer so I only usually get on early in the morning after I workout and he is still asleep, during naps or school, or after he is in bed (but usually Zach wants my attention then).
Dakota finished school the end of May and started summer school last week. We are sure going to miss his sweet teacher Miss Nita and all of the kids in his class including his cute girlfriend Elcee. ;( I was hoping she would still be there next year but she is moving onto kindergarten...so hopefully this next year he will make some new cute friends that will give him as much attention as he got this year.
Sweet Elcee showing him a book and rubbing his back...she is a cutie!
On one of the last days of school I got to go on a little train ride around the big town of Corrine with his class and I finally got to meet Elcee's mom. I had to tell her how much we love and appreciate that cute girl!!
So he had missed a couple of days of school and I got an email the day before he went that they were having school pictures. I thought...well I will at least buy a class one because I'm pretty sure his individual one will not be so cute. I just pictured them leaving him in his wheelchair, him crying, and them snapping a picture. Boy was I wrong! When I saw the proof I was in love!! Not so much with the corny background but with his cute face. They took the time to help him sit in this little chair with people out of sight supporting his cute little head and body and captured the cuteness of my sweet Dakota! I so appreciated it and of course bought the biggest package they had!
Here it is!
It's not super clear cuz I had to scan it.
And here is his cute class!
Summer school is a little different then the school year. He goes 3 days a week 2 weeks on and 1 week off for 2 hours. There are only 4 kids total in his class and none of them are verbal so it is a lot different. I send him mostly for the social aspect so I'm not sure that he will get much of that through the summer but hopefully he will still like it.
I took him to the pool for the first time since his accident the other day. (forgot to get a pic) I was SO surprised how much he liked it. He didn't smile or anything but he wasn't crying either...so I take that as a positive. We pretty much just sat in the shallow part and splashed and watched all the chaos around us...occasionally getting splashed by kids running by. He was so chill the whole time just sitting in between my legs. It felt good so be out in the sunshine...I LOVE the sun!!!
We are still struggling with his moodiness. We are at least getting a few smiles each day which is a little piece of heaven but man can this kid be ornery. He used to be really good when we were out and about but lately he will cry the whole time we are in a store which is quite frustrating. Also if we were holding him, watching some favorite shows, or playing with the IPad he would almost always cheer up but lately even those favorite things don't always help and he has lost interest in them. He still most always prefers to be held and walking around but I can only do it for so long before my arms and back want to break. We have experimented with a couple medications but they haven't seemed to help. Awhile ago I was getting a little frustrated not knowing what it was all about...was it something bothering him, was it stomach aches, was it boredom, was it just being a 3 year old. So I decided to treat him like the 3 year old he is and put him in his room when he would cry and not stop. I gave him the choices to be happy and play with mom or go to his room. If he continued crying then I would lay him on his bed and tell him I will come and get him when he is ready to be happy. Surprisingly most of the time he stops right away and just chills out in his bed and a lot of times is better when I bring him out. Sometimes it takes a handful of time outs before he changes and sometimes it doesn't change his mood at all. I think he almost enjoys being alone in his room more then being out there with me....Zach and I wonder if he cries now just to go to his room. It at least gives me a minute to chill out instead of getting so frustrated at listening to crying non stop. Who really knows?! Still trying to figure this kid out.
His dystonia (which is when he stiffens his whole body and arches back) has gotten worse and not so sure why. It is SO hard to hold him when he gets like that and I think it is uncomfortable for him too. I think it probably hurts his muscles and cramps them up. It takes all the muscle I got to get him to bend and relax and you can tell he feels better when he finally does. The worst is in his stroller. Most of the time we take him around in the jogger stroller but it is getting too small for him now. When he arches and stiffens in that he pushes his body so hard into the straps and just cries and cries until you get him to relax. I just wish I could get into that little head and understand what causes it. We are in the marked for a new jogger stroller...a medical one or just a bigger one...any suggestions?!
On a brighter note he has had some of his BEST sessions at swallow therapy he has ever had lately. He is using his tongue and mouth better, starting to organize his suck, swallow, and breathe. Miss Vicki even gave him his first spoonful of applesauce and he handled it really well...kept most of it in his mouth and swallowed pretty fast.
Sucking on his bottle
Spoonful of applesauce!
He LOVES going to swallow therapy because he LOVES tastes. That is really one of his only motivators that I have these days to get him to do his crawling exercises. It is the one thing that can sometimes cheer him up.
The other day we had a cool experience that showed us how well he understands. He was really on the ornery side and cried the WHOLE time I was in Old Navy buying him a swimsuit (and a few other things...I can't help myself! ;) ). Afterwards we were headed to his swallow therapy appointment and he was still so ornery I almost thought of canceling thinking it wasn't worth it when he was in that mood. I pull up and as I get him out I tell him, "do you wanna go see Miss Vicki and get some tastes?" He immediately gave me the biggest smile and started to giggle. I couldn't believe it! He kept smiling and giggling the whole way in the building.
I wondered if it was really from that but when we picked Zach up on the way home I told him about it. He looked back at Dakota and said "did you get to go see Miss Vicki and get some tastes?!" And right away big smiles and giggles. I knew that that was from that. It was SO cool to get such and immediate and clear response that he understood and was able to express his feelings. I just wish we could see it more often and that it could be consistent. I am grateful for that moment though...we need reminders that our sweet little boy is inside of that body and he knows and understands.
Thanks for all the sweet prayers and comments that keep coming our way. I wish I could say we are doing amazing and getting things under control and life is easy breezy BUT not yet...hopefully one day! ;)