Ayden stayed all week long, and LOVED it!!! Camp Riley was a success beyond any of our expectations. The camp does a great job of tracking and recording everything. Believe me I have been through all the paperwork looking for indicators of some tough times, but NOTHING!!! It is all 4/5s(5 point scale). They even wrote how much they loved his excitement and can't wait to see him next year. When we(Mami came with me as per Bub's request) arrived the staff greeted us several times with, "You must be Mami, Ayden is so excited to see you!" as we walked towards his cabin. Yes, both mom and I wondered if that was good or bad until we saw him. He was so excited to share everything with us, he even stopped and hugged a friend goodbye. He "booped" one of the counselors on the nose and all of the sudden the others said, "Oh, we are booping", then they got in a line to play the game. When we first asked him if he wanted to go back to Camp Riley he said no, but he was tired and ready to come home. Now he talks about it and will say "yes" when I ask. We even started saying "next year" to get him ready for next summer, when we will all enjoy the time even more with less worry.
They did write that when trying to communicate they would give him the phrases "I want" or "Can I have" then he could tell them. This is opposite what we have been doing for years because we wanted him to put the phrases together at all times. However, in his moments of frustration it has worked for us too! He is more likely to listen after he has said what he was wanting first and foremost. Before he would tire after trying to say the whole phrase when frustrated, and then you would lose him. He is capable of the whole phrase or sentence in normal instances, but when a squeal or whine has replaced communication this remedies the situation quickly. Again, we cannot thank the wonderful staff at Camp Riley enough. These individuals are well trained, compassionate, and dedicated people that helped our son gain more independence and feelings of success.
They loved HIM, and it made all the difference in the world.
 |
Nevermind the speedo look. :)
Here is his tape on the left leg, it is a lot! |
The week after camp we started back with PT with Julia. She helped by starting a taping program to work on his his foot. We had just bought new shoes for Ayden a week before camp, when he came home the heel plates were already worn off! He has been wearing out the heels in his shoes for over a year so we thought the plates would buy us some time...not so much. Julia thinks by trying to bring his foot in he will stop pivoting on his heels as he walks, and maybe stop wearing through his shoes as fast too! The only problem is the taping will have to be done consistently for 3 months at least. I am hoping he tolerates it for that long. The success of these two mini camp intensive weeks are undeniable. We already have another week scheduled for October during Ayden's fall break. Then we hope to fit some days in at Christmas too.
On the medical side of things... We have seen "seizure like" activity for a few weeks, but there are lots of factors to consider. First, his Lamictal was very high and was decreased slightly right before camp, and he has been very active which mean he gets tired. Second, Ayden has double ear infections, and yes there was a celebration with this verdict at the doctor this week because it is the easiest answer. Unfortunately, his last set of tubes are both out now, so another set is probably a thought on the back burner if he continues to have ear infections like in the past. Ear infections could be causing the break through seizures and also a pain response that may mimic his myoclonic activity. Basically, we are not too worried about all this. We will be headed to Wisconsin to see our neurologist again in August, so we will wait a few weeks and see if the activity disappears. Then Dr. Hecox can decide the course of action from there.
So all in all great news for the Bubba. Now, we have two easy weeks ahead other than rec therapy and respite we have nothing major planned. Of course, Ayden has not gone a day without putting his suit on so swimming will still be on his agenda each day. He even made the Camp Riley video with his swimming and diving skills. :)
https://youtu.be/bgjnje2puF0 (He is right at the begininning a couple times).
Thank you all for the many prayers for a successful week at camp. They worked!
Now we pray these infections clear up quickly and no one has to utter the "s" word again for awhile. :)
Thank you to everyone that checks in on our Bubba, and prays for his continued strength and healing.
____
Ayden can still accept tax deductible donations for his Camp Riley experience until Sept. 1.
Riley Children's Foundation/Camp Riley
Attn: Camp Coordinator
30 S Meridian St, Suite 200
Indianapolis, IN 46204-3509
To make a donation specifically towards Ayden's Camp Riley Fee you can simply put "Ayden Hoffman- Riley 1 - 2016" on the memo line.
