Thanks for the phone Great-Grandma!

Dylan was sick with the flu the weekend of June 11, but he still pushed forward, he was very interested in trying to do a few things here and there, but you could definitely tell that he was not feeling well. He had picked up a flu bug the Thursday prior to that and had been pretty icky for a few days, when we got there on Friday he was still a little ill and had been sick about an hour before we got there, he got sick again on Saturday, so they backed him off the feeding tube for a “normal” run of food and gave him mostly pedialite for nutrition. Sunday he seemed to be getting back to normal but was a bit weak from being ill.


He was still a trouper and willing to try and do whatever we were asking him to do, but you could tell that he wasn’t right.

This weekend was so good!!! Dylan’s friend Meagan and her family came up to visit him for the weekend, he really enjoys visiting with them and loves having them there. A couple of other friends stopped by to see Dylan and you could tell that he was happy to see them!!

He is doing really well, we spoke to his doctor who informed us, after months of not being very positive, that Dylan is doing really well and he thinks he’ll be talking very soon!!! Yay!! That made our day, of course. We were so happy to hear that, it has seemed like Dyl has been moving his mouth a lot more lately as if he wants to talk. He has made more sounds and is trying to say "yes" and "no" when we ask him a question! He is very good at nodding yes and no too, which is new as well. He was able to show us yes and no in sign language, but we wanted him to use his voice or his head to tell us so that he’s using his neck muscles. He’s doing really well with that. He is also really enjoying having sugar free pudding, the nurse let us give him some vanilla flavored pudding the other day and we put the container in Dylan’s right hand and handed him a spoon and he probably had 4 bites in his mouth in about 2 seconds!! He was really happy when we asked him if he wanted some pudding, he got a huge smile on his face and was nodding really quickly! 

The therapist has ordered Dylan a wheelchair specifically made for him, it’s one that Dylan has to use both hands on the taller wheels to move and it has no head rest, so he has to use his neck and shoulder muscles to sit up straight.

The therapist is also working with Dyl to sit on the side of the bed for longer periods of time and then she has him put his feet on the floor and stand then do a pivot and sit in the wheelchair, he’s doing really well with that! She is very happy with his progress and wants to work more days a week with him and is trying to get the doctor to write that order.

He spent quite a bit of time laughing this weekend, he had lots of fun joking and playing with everyone.

Dylan also saw a camera come out and before I could even ask him to smile, he smiled for me and was able to use both sides of his mouth for a big smile!! We were so jazzed, he’s been trying for a couple of weeks to get the right side lifted for a smile, but it was just this weekend where he was able to do it...Yay Dylan!!

There is still a bit of miscommunication between his doctor and endocrinologist on Dyl’s blood sugar levels and he is still pretty high right now, Dan and I are working on getting an order put in for a diabetic formula instead of a regular formula to help out with it a bit, and we are going to speak to the endocrinologist this week and try and have a sliding scale put back into effect to try and get his levels more manageable because he’s creeping up there most of the time and we want to prevent any high sugar levels that could lead to complications. We are so proud of Dyl, he’s doing an AWESOME job learning new skills all the time and keeping up the great work to stay flexible and remember all the things everyone is teaching him on a daily basis. Everyone at Hacienda is so proud of him and they all come by his room multiple times during their shifts to see him and give him knuckle-bumps, high fives or thumbs up and makes sure he’s doing well. Dylan also received a cell phone from his Great Grandma and that seems to be a really good tool for him! He was so happy when he saw that, his smile just about cracked his face. He called her right away and she talked to him and then Meagan called and talked to him and he seemed to really enjoy hearing their voices!!
Please continue to keep Dylan in your thoughts and prayers, he’s doing soooo great!!  - Keri

Dylan wrote his name!

Dyl is doing great, he has made many improvements in the last few weeks. He is now feeding himself with his left hand. He is able to eat some soft foods when Dan and I are there to monitor him. He really enjoys having applesauce and we are going to try some sugar free pudding soon ;) He is able to read a note and do what the note says. I wrote a note this weekend asking him to wave, point, hang loose and to show me blocks of different colors and he was right on every time!!! He really seems to understand everything! Then Demetri asked him to write his name on the dry erase board and Dyl did it right away without even thinking about it!! He's doing AWESOME!!! We spoke to his nurse a weekend or so ago and she said they had ordered him a wheelchair of his own, but they are hoping that it can be cancelled because he is already way advanced from that model, that model had small wheels and a head rest that would help support his head. He doesn't need either of those features anymore they said they need a chair that has larger wheels so Dyl can wheel himself around ;)