Success!

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.

No News is Good News

I should do better at keeping up on Bub's blog, but as always no news is good news. Actually, no news is GREAT news! I haven't written since Christmas and although we have added some new friends to Ayden's team, he has been healthy and SEIZURE FREE! :)
 Ayden had a rough school year with an inexperienced teacher. However, that was a blessing in disguise as we met two incredible advocates that helped us to feel more confident about his education than ever before. They also introduced us to Dr.Penning, and we met with her again today for a follow up from spring break(yep, we still rock spring break w/appts.). Our goal with Dr. Penning is to help Ayden communicate more. Many times he gets excited to share and talk, but beyond the basics he becomes frustrated and shuts down. Our old goal was to get Ayden to communicate his BASIC needs and he can. Now we want him to work on communicating more with questions beyond requests and thoughts beyond memorized responses.

Our favorite PT, is one of the most exciting parts of Bub's summer so far. When I told him we were going to therapy to see Julia on Monday(2 days before school was out), he told me he was "done with school" and could not wait to see her. He has already completed one week of PT "camp" as we have nicknamed it. This summer,  Julia was willing to try seeing him daily for a full week in June and July. The benefits of the new strategy will not be measurable until we return in July to see if he is back to baseline or if he retained any of his skills gained in June. He has a new "trick", he is kneeling! He will show people how he does it for little bits at a time. It is the key to gaining more muscle in his backside, so we are trying to keep him excited and working on doing it for longer periods of time. Our short term goal for July is potty training, we shall see. We have started him with "peeing on the flowers" and he actually just asked to go do that prior to his bath this morning. Yep, it is a benefit of country living I guess, no neighbors to worry about. Silly? Have you tried lifting a 90+lb boy onto a toilet seat several times a day for the past year?? If we can get him to stand while using the restroom at least the physical strain will be a bit less for us and would not require undressing him as much each time. It has to be all on his timing and we have battled too much, he has to want to do this so we will see.

He has already had a pretty eventful summer, with much more to come. We drove to Florida the second week of June, and Grandma, Aunt Holly, Mitch, and Eden all flew in to join us for a family trip to Disney World.  After meeting Mickey Ayden was able to try boogie boarding, it was quite a workout trying to keep him up on the board! He LOVED the ocean and I think could have sat in the sand and let the waves crash into him all day long. One thing he learned during the 40 hours in the car over vacation was how to be a backseat driver. He now will help me out as I approach intersections, "I think it's that way mom."

Next up - CAMP RILEY!!! We went and visited Bradford Woods in May at Newcomers Day to check out the camp. Justin and I both left very nervous, and I am not sure that has changed much. However, some of our most trusted friends/advisors on all things special needs have recommended and talked about Camp Riley for years. This will be his first time as he is finally old enough to go. Is he ready to be away from mom and dad for 5 days(yes, I said 5!!)? Is mom ready? I don't know, so I guess we will find out! Your prayers for a positive experience, great weather, and a healthy boy are all appreciated.  He will go on Sunday and if it goes well we will picked him up Friday morning. I hope to update and post with great news at the end of next week, like I said prayers are appreciated!

With Love, The Hoffman Family :)


Interested in making a tax deductible donation to Camp Riley?
You can mail a check to:

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" on the memo line.