I just realized that Aaron will be 15 months old tomorrow. Where did the time go? Having two other children, I knew the time would go fast but its so different with him with delayed development and all. Since we got through the infantile spasm episode, I have been thinking a lot about the best way to move forward from here. How to get everything done....priorities, etc. I have been quite distressed about being so far behind in our ABR hours but I didn't quite know what our goals should be in light of the context of our lives and what is most realistic. I have set a goal of a minimum of 15 hours a week. This would have been realistic to attain with my original part-time schedule. But its going to be quite hard for the next 6 weeks because I have to work a full-time schedule to make up for the hours I will miss for the whole month of March. Aaron and I will be going to Wisconsin Hyperbarics for HBOT therapy. Its six hours away so we will have to stay in a hotel for the whole month. We were blessed to receive one of their grants giving us a 67% discount. Anyway, I will be working very hard the next six weeks. I got re-acquainted with a video of a little girl that started ABR when she was 15 months old. Ironic huh??
Here is a video of Helen after 2000 hours of manual ABR. Amazing!! She went from not being able to sit up or crawl to walking in 2 years. That's what I'm talkin about! The guy in the video is also the one narrating. His name is Leonid Blyum and he invented ABR about 15 years ago. He personally evaluated Aaron the same way when we went to Canada. I remember him saying that if I worked very hard the first year, we would see very good results and Aaron would respond very quickly being so young. Its been 7.5 months since we started and I feel so guilty, like I have not taken advantage of the advice we were given. I really have but we have had so many health issues, hospital visits, etc, sabatating things. But I will stop with the excuses. We have got to get this done. So she will be our motivation when it gets hard. I will think about this video and know that I have no choice but to press on....
An Amazing Summer!
2 years ago
You are such an awesome mom. I can tell everytime I read your blogs. You are very dedicated and loving mom. Please don't feel guilty about Aaron. You are doing everything you can for him and he knows it too. When I first found about Kaylee's infantile spasms and her 1p36 diagnosis, I was determined to give her every therapy possible. After 6 months of many therapies, I was too involved with fixing Kaylee then spending quality time with her. We were both burnt out. We still continue her therapies in full force, but I'm a lot more laid back with her at home. One thing I did learn along this journey is that every child is different. The most healing thing you can do for your child - above medicines, diets, Dr's, etc....is LOVE. THAT is the best therapy! Take it one day at a time. It will all work out at the end.
ReplyDeleteGod bless,
Sherry Culvhouse (mom of Kaylee 17mo/1p36 & Allison 5 yrs)
Thanks Sherry. You're right. It can get to be overwhelming and you find yourself running like a hampster on a wheel. Prayerfully Aaron will stay healthy and we won't get back into react mode. Now that we have some IS relief, I feel a little better but I have to remember to "take it one day at a time".....
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