Dylan may head back to school!

Hope everyone is doing well. We are doing really good here. We had a great visit with Dylan this weekend. He’s doing so awesome!! Unfortunately, he was pretty tired, he has a 17 year old roommate right now that stays up until 4am listening to loud music and talking on his phone ;( We are in the process of getting either Dyl or this other kid moved so Dyl can get sleep and be ready for therapy.


We spoke to his doctor this weekend and he’s thrilled with his progress! Dylan’s right side is really starting to come on now, he’s using his hand and arm quite a bit more and is more smooth with its use now. It’s only a matter of time until the right side catches up with the left side. He’s walking quite a bit with the walker and is doing weight lifting to strengthen his arms. He is on the way to having his blood sugar levels under control too. They are working on getting that fixed because he’s now eating larger portions of food and we just found out yesterday that the thickened water he was drinking is high in carbs and he loves it, usually has five of them with his meals. We are trying to get the endocrinologist to find a different thickened drink that isn’t high in carbs or figure out a different regiment for the food/drink he’s eating now. We should have that fixed by next week for sure.


Dylan had an ingrown toe nail last week and the podiatrist finally came, after us asking about it for a few weeks, and fixed his toe. Now he has no nail on his big toe, hopefully it heals quickly, I don’t know if he’ll be able to get his therapy boots on with his toe wrapped the way it is right now…

Dyl is initiating conversations more this week than he has in the last few weeks it’s very cool to see him just start talking to Dan or a staff member and he’s picking the conversation they are having.

His progress has been amazing and we are so proud of him!!! He’s able to do so much more than he was able to do even last weekend!! We are currently working on getting him enrolled in school through Hacienda there in Phx…they have a school program right on the Hacienda campus and they also have a program where they can bus the kids to local schools. We are very excited since we think that will really help Dylan’s loneliness and get his mind really busy. The staff at the hospital is willing to work the therapy sessions around the school day too, so that will be great…keeping our fingers crossed that he gets enrolled soon. ~Keri

Dylan is doing sooo awesome! We have heard from countless people how well he’s doing and they have encouraged us to try and get him over to Barrow’s quickly…we are researching that option right now as well. He’s able to walk with the walker across the gym and does “walker races” and “wheelchair races” with the staff daily, his arms are getting stronger and his right arm is really improving! He is able to do the exercise bike and does a lot of mat exercises with the therapist. We have spoken to the speech therapist and he’s now got quite a few speech and learning apps downloaded on his Ipad for therapy. He’s really improved sooo much in the last few weeks, we notice new things every weekend when we go up there. He spent quite a bit of time sitting on the side of the bed and had no problem holding himself up for over forty minutes! He’s getting very good at the sit/stand transfer for going from his wheelchair into the bed and back. He loves to stand up, he likes to look down at me from his superior height! heehee, it amuses him that he’s taller than me. He is working with weights for both arms and is able to do quite a bit of physical therapy on a daily basis…last weekend they said that on Friday he was on the treadmill, without any support devices, and was able to walk on it for 5 seconds and then he had to stop, but last Saturday he was able to do the same exercise for a full minute!! He has started eating his full meal with his right hand and only uses his left hand if he needs to steady something! He’s using both his arms and his legs to control his wheelchair, which is really helping him to become more mobile! We took him out to the September 11th memorial at the park this weekend and he really seemed to enjoy being outside and loved having the time outside of the facility!! His blood sugar levels are well under control at this time and we are working on getting his nightly feed turned completely off. He is able to eat all his meals by mouth and we would really like to get him to where he can drink the nightly meal instead of using his g-tube. He goes for a barium swallow test this Friday to determine whether they can remove the g-tube in the near future, the doctor says that if he passes the swallow test it looks good for bumping him up to eating more solid foods and removing the tube!! Yay!! We are monitoring his feet right now too because he has a really swollen toe and we don’t want to have any open sores on his feet, it looks like it may be irritated from the boots they have him wear for therapy, we are checking to see if they can modify the boots so that he’s not irritated so much. Dylan and his friend Alison, who is a resident at Hacienda, have started “dancing” to the music on his Ipad, the staff says they spend quite a bit of time playing games together and listening to music together. Dylan is working on saying the names of different animals, vehicles and proper names and is doing really well in his efforts. The speech therapist has given us a couple of games to play with him to get his vocabulary increased. He’s still going strong in his recovery and we want to express HUGE THANK YOU’S to all who continue to keep Dyl in their thoughts and prayers, we appreciate it sooo much!! - Keri

Pictures from Camp