Aaron is Rolling!!

I'm afraid to get too excited but Aaron is rolling! This is the first step in mobility and we made it! We have done 400 manual and 1152 machine hours of ABR. In addition, we just got back from WI for 37 dives in a hard chamber, about 5 months of G-Therapy, about a dozen Feldenkrais sessions, and 20 Anat Baniel intensives. I mention all of these because I feel that all have played a part in getting us to this point. Like I have said before, none of these therapies are any type of "majic cure". Just like traditional therapies, they all have their specialities and strengths. I think he is also at the first stage of crawling like this little boy in this case study. I tried several times to post the videos but they just took too long so here are the links to Aaron Rolling I and Aaron Rolling II. Enjoy the videos!

Interesting......Exciting

This morning after Aaron's first hood dive, I had something interesting to share. Now that we are at the end of the day, I have something exciting to share too.

INTERESTING

While we were in the chamber, Aaron leaned his head against the plastic hood and I gave him a kiss on his temple. He has done so well. You would think that he would panic with what I call a "George Jetson" on his head but as long as he has his binky sitting on my lap, he is totally content. Well anyway, when I kissed him, he looked at me, and leaned against the hood again for another kiss. It was so cute. We did that for about five minutes. I would kiss him on the temple, he would look at me, and then lean against the hood again for another kiss. Why is this interesting? This is the first time I can recall that I felt like he demonstrated he understood cause and effect. I felt like we were communicating if that makes sense. A precious moment....

EXCITING

Lately when put on his tummy Aaron has been turning over on his back. He used to just lay there and whine and sometimes eventually go to sleep. But for the last few days, he has been turning over on his back. Well I decided to put him on the floor at the hotel on a blanket just in a onsie so that he could feel his knees and elbows better. My baby kept trying and eventually turned from his back onto his tummy and has been doing it consistently all evening. I am so happy! Like my grandmother said, I have been "working like a Hebrew slave" doing ABR and we have this new ball rolling technique. He has been moving his pelvis a lot more and I think its because there is a lot more volume and space in between the lower part of his ribs and the top of his pelvis. When I post the pictures, you may be able to see, but when we first started his ribs angle vertically instead of horizontally and the bottom of his ribs basically touched the top of his pelvis. This makes it pretty much impossible for a baby to rollover, sit up, crawl, etc. I am so excited! Can you say MOTIVATED!!!

My Little Fighter - Hyps Are Gone!

I am so happy to report that Aaron's EEG on Tuesday 11/24/09 was normal with no Hypsarrhythmia. Infantile Spasms can be so hard to control, and many times they return, but we have been blessed with another window of opportunity to help him improve and progress. I am so grateful! He has to continue the ACTH injections for at least another 6 weeks and he is also still taking .4 ml of Keppra twice per day and 500mg of Vigabatrin twice per day. I'm not terribly concerned about the Keppra because its a very low dose that has not been changed since he was 2 months old. Prayerfully he will continue to improve so that after weening the ACTH we can ween him from the other meds before he is two. There I go a gain "planning", but I'm doing better each day. My little man has been teaching me how to celebrate the "here and now" and TODAY is a great day! Here is a video of him on Thanksgiving morning.

As I had hoped, despite the delays and regressions caused by the IS, his body still progressed via ABR. Here is a video of him this morning. A month ago, I could not put him in this bouncer without him collapsing forward and hitting his head on all of the toys. Lately, while being held in a reclining position, he has been forcing himself upright. I took that as a sign that he was getting tired of being held in a reclining position, so I put him in the bouncer again to see what he would do. Its kind of dark but you can still see him holding his head up and turning it from side to side. He can't weight bear yet so I put towels under his knees for support. He has been a lot more verbal lately too.You can hear his little squeaks sometimes in the video above his sister'scommentary :). We are at about 183 manual and 820 machine hours.

ABR Therapy

When Aaron was first diagnosed, we were directed to our early intervention program called First Steps. I am very grateful for this organization. The coordinators and therapists were so kind, proactive, and thoughtful. They helped us navigate through a lot of paperwork and set Aaron up with PT(Physical Therapy) and OT(Occupational Therapy) almost immediately. He was only 5 weeks old and that was huge. But I still felt that something was missing and there was so much more to be investigated. One of the things with 1p36 is severely delayed mobility. You would think this is not much of a big deal as long as they eventually walk. The information we were given stated that walking would occur from three to eight years old. I don't recall any information about them ever crawling. Anyway, when I went to a 3 day seminar March 2009 by the Family Hope Center called "How to Help Your Child with Special Needs" I found out that creeping and crawling for babies is huge. Seventy-Five percent of brain growth happens in the first two years of life and most of it is accomplished by movement, crawling (comando style), and creeping (up on all fours). It seemed to me that this mobility delay is one of the direct causes of severe to profound cognitive delay. After literally hours of researching on-line, I found an old post from a message board in 2007. It was from a message board of mostly mothers of children with CP discussing and debating the different therapies that worked for their chilren. Why would I be looking up information about cerebral palsy when Aaron has 1p36? Well CP is a generic term for any condition involving a brain injury or neurological problem. One of the symptoms of Aarons genetic disorder is hypotonia or low muscle tone which is also a form of CP. 1p36 is still very new and there is not very much information about what therapies work best for his condition. So I figured that since CP has been around for sometime, maybe I could learn from other CP moms who have lots of experience with children with special needs. Anyway, after litterally months of research, I learned about ABR-Advanced Bio-Mechanical Rehabilitation. Its quite difficult to explain in simple terms but I will do my best. Everyone has a weblike connective tissue that surrounds all of our organs, muscles, bones, etc call myofascia. It looks like this:





I'm not exactly sure why, but many children with CP or other neurological problems like genetic abnormalities, have myofascia that is lacking in volume, tone, and strength. This tissue is the foundation for everything and causes our muskoskeletal sytem, muscles, organs, etc to be in proper alignment and shape. This deficiency contributes to may distortions like high tone, low tone, dismorfic features, reflux, constipation, speech, and a lot of other things. We started this therapy at the end of April. Here we are during our second mandatory training.

Aaron has several other therapies, but right now this is the one that we spend the most time on. Its suggested that we do 21 hours a week and we strive for that unless he has an appointment. So far we have accomplished 154 manual hours and 351 machine hours. Its been quite a blessing because he has responded fairly quickly. His trunk strength has improved a lot which will help in sitting up and rolling over. I can't wait until the next training at the beginning of November because he will be evaluated and all of his improvements will be photographed and documented. Well that's all for now. Stay tuned for the adventures of Aaron with 1p36!