Dyl is doing really great, adjusting well to being home and enrolled in school full time. He’s in two regular classes with his friends from middle school and has five assisted classes. He’s getting good grades in all his classes and is starting to do therapy at school as well. He is almost walking 100 feet at school…the physical therapist is working with him a couple times a day to get him walking and said that he’s getting stronger every time they walk!!! He is also doing speech therapy and you can totally tell the difference, we don’t let him point at things at home, we make him use his voice when he wants something and it is so much clearer when he speaks now. He also loves to sing and listen to music so he gets the speaking at that as well. He’s very vocal early in the morning and then sometimes gets a little boost after dinner too. We are thrilled with how well he’s doing with his speaking. He’s making big strides all the time. We still work with speech therapy at home by having him read and associate words on worksheets and also by having him read every day words as well. He’s improving all the time. His occupational therapist is also on board now at Santa Rita and it seems like with all the therapy that he is receiving he’s doing great! He’s toilet training and is improving sooooo much on that right now! We are very excited about that…skinny jeans here we come.  Dylan is convinced he’s going to get some PINK skinny jeans when he’s out of the briefs we’ll see what happens, I’m trying to convince him that dark blue or black would look nicer.

Dylan had an eye doctor appointment recently and we got some great news…he doesn’t have diabetes in his eyes!! I didn’t realize that that could be an issue, so we are very excited that his eyes are doing good! He is less than thrilled that he is a little near sighted and has to get glasses for when he needs to see something across the room…we are going to try and find a pair of “cool” black rimmed glasses for him.

Recently we went to the Nitro Jams with his Aunt and Uncle and boy did he have a BLAST!!! It was a fun evening out and he was jazzed to see the jet-engine cars!

We are working on getting him into a summer program so that he can stay busy during the day…I’m keeping my fingers crossed that there is some kind of therapeutic summer program through parks and rec…hopefully they do have something!! I will be calling here in the next couple of days to find out about that.

Dylan is doing GREAT with his eating/swallowing too. Dan and I have started giving him more “real” food and thin liquids at home. When he’s at school we still do the pureed food and thick water, but at home we let him eat hamburgers, pizza and some other things he enjoys. It’s kind of a balancing act right now, he LOVES to eat and we have to slow him down and make sure he’s chewing everything into small enough pieces to swallow! He loves his diet dr. pepper and drinks that down in about ten seconds! We have to keep an eagle eye on him when we do that. But he’s not aspirating when we let him have those treats so we are hopeful that when they do the next swallow test at the doctor he’ll be bumped up to solid foods on a more regular basis.

We are also improving on the shower end of things…he HATES having a shower, but he’s getting really good at getting both hands up to wash his hair ( and can I tell you it’s getting LONG, we are talking rock star lengths here) and doing the shower pretty much on his own!! One of us stays in the bathroom with him for safety but he washes himself and his hair all on his own. He’s even getting that right hand up there to brush his hair by himself.

Dyl’s balance is also getting really good, he can stand without help for over a minute, sometimes he can go for three minutes!! We are working on basic balance and walking skills at home after dinner. He’s getting so strong and both his hands are also getting stronger. His after-school nurse commented last week that when he squeezes her hands the grip is stronger every day!!

We also got to see a dietician recently and as we figured Dylan is going through a growth spurt. He passed me by a long time ago and is almost taller than Dan now ;) but since he’s going through this growth spurt they want him to eat larger portions, which we were already doing and added some things to his diet to get him more protein and to make sure he stays fuller longer. They were also able to get the glucerna shakes that he is supposed to drink twice a day (and boy are they expensive) covered by the insurance!!! YAY!!! That’s a step in the right direction because we were going through those like crazy!!

I think that brings everyone up to date on the most recent things. I’m sorry that it’s been a while since I’ve updated everyone. Life is so crazy-busy right now, but we wanted to let everyone know that Dylan is doing WONDERFUL and is continuing to improve!!!

Please continue to keep him in your thoughts and prayers!! I’ll do better about updating on a more consistent basis. ~Keri