I know it has been a while since I last wrote so I will try to update quickly. Right after my last post Dillon had to be taken by ambulance to the hospital. He had a 15 minute long seizure in the middle of the night and another one at 11 am. We were then taken to CHOP and stayed there for 3 days. He had pneumonia. The doctors thought he would have to have surgery to tighten his stomach as they thought it was caused by his food refluxing.
Thanksgiving was great. We had some trouble with our O2 concentrator on the way out, but other than that, no major problems. Dillon was having a hard time with breathing. He was on oxygen 95% of the time. We got to see my brother-in-law get ordained as a Pastor. And of course I held my nephew. He was so tiny it felt like I wasn't holding anything at all! Josiah's parents and sister also came to Ohio for a two days. It was a good time to see family!
After we got home, I took Dillon to CHOP for the Upper GI (to see if he was refluxing food) and Dillon's oxygen level dropped. They started yelling for a nurse and needless to say we ended up in the ICU again. This time I told them I thought his new seizure drug was making him so tired that he couldn't breath. They took him off of it and he has been doing much better. We also took him off one of his reflux medicines since the upper GI showed he was not refluxing and since the doctor said it could be causing seizures. His breathing is much better and his seizures have decreased.
Last week we went to classes at The Institutes for the Achievement of Human Potential, which is right outside of Philly. All I can say is WOW!!! Josiah and I learned so much. We finally have some "tools" in our "toolbox" to try to use to help Dillon. No body has given us anything to do to try to help him, doctors think there is nothing you can do to help a brain injury. Thank you to Mom K, Hannah, Mrs. Y, and Anne for babysitting for those long days!
I have started our new program with Dillon today. It seems to take me about 45 minutes every other hour from 9am-7pm. We will adjust this as it seems best, but this is where I am starting. Only 7% of the time do they see no significant improvement (usually there is some improvement, but not enough to be significant). 26% of the time the child becomes completely well!!!! God is in control, He knows if this will work or not. Josiah and I are going to really work this for 6 months to see if it helps. It really brings the family together even more as it requires all of us to work together if we are going to have a chance at changing Dillon's life forever! Please pray for strength and consistency for us and for improvement with Dillon. We have to do this 7 days a week, we cannot take breaks or it will only make it so much harder for Dillon. Think of it as working up to running 10 miles. If you work everyday it gets easier and easier, but if you take weekends off Monday it is so much harder again. We will also have to continue it over Christmas break. I won't go into too many details here on what it is we are doing, but if you want to know please ask me. Basically we stimulate Dillon on every level neurologically he is at and work towards the next level. If you have a brain injured child (anything from can't read, to eyes not being straight, to as severe as Dillon) please contact me about these Institutes. According to how they taught us to evaluate our child, Dillon is 100% injured. He is functioning at less than newborn, or 0% of where he should be. What they have taught us is amazing - it just makes sense. They have helped so many people. Praise the Lord for the incredible minds he gave them to learn these things! There were parents from 13 states, and 5 continents there, we were able to give out many of "Dillon's Journey". Please pray God would use us in their lives.
This is Glenn Doman, the founder of the Institues (we handed him Dillon's story and he started to read it), his son Douglas and daughter Janet and his wife Katie (standing). Please pray God would use Dillon's story. Dr. Doman is 88 years old!
2 comments:
Thanks for this post. I've been meaning to ask you in church if you had started the therapy...but you know how that goes. :)
I'll be praying for all of you!!!
WOW, you actually met Glenn Doman himself! We have his booked "What to do about your brain injured child" and have read most of it, so amazing how the institute has helped soo many people. And now you are involved with it and I'm sure learning so much, keep up all the work, I know it must not be easy, I don't know too much about it but know a bit about "paterning" from the book.
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