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!

Many...Many....Many Thanks!

Before we left for WI, I personally thanked many of you and will make more personal contacts when we return. But this post is way overdue and I apologize it has taken me so long to get our daily schedule in order to sit down. THANK YOU to everyone that helped to raise money for our most recent trips to IL for Aaron's ABR evaluation/training and currently to WI for HBOT. NONE of this would happen without your support.

A special thanks to the best aunties in the world. My sister-in-law and my aunt organized a benefit in our home town of Fort Wayne raising $1250, and the committee in Indy raised about $500 with our first Beauty Day fundraiser that we plan to repeat in August.

From what I hear, there are more fundraisers being planned while we are away and for that we are so truly grateful. Please continue to visit this blog for more updates to come. GOD bless you for all of your hard work and support. We love you and praise God that we have you as friends and family.

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!!!

"Long Time No Post...."

Well I'm just getting a moment to post since we got to WI for Aaron's HBOT treatments. Before we got here last weekend, I was working a full-time schedule which made it impossible to post but we are at the hotel and finally settled until we leave in a couple weeks.

So far Aaron has had 14 dives. Four were with the hood and 10 mild dives. We started with mild room air since he had a history of seizures. After his first day with the hood, he had a petit mal seizure the next morning. Very scary...I called his neurologist and the doctor here at the clinic. The clinic doctor had him take off the next day and this neuro back home increased his Keppra from .4 ml 2x/day to 1 ml 2x/day.

I knew that HBOT could temporarily increase seizure activity but I'm not sure if this is the case. Aaron has not had an increase in his seizure meds since he was first diagnosed with them at two months and about 6 lbs. The nurse practitioner suggested increasing his meds when he was about 6 months old but I didn't feel comfortable with that since he had not had any seizures. I didn't just want to drug my baby out of protocol. His neuro agreed so we decided not to increase his dosage until he had more seizure activity. Now he is almost 17 months old and about 19 lbs. I don't know. It could have been the HBOT or he may have just outgrown his meds which was a low dose even at 6 lbs. Anyway, he just had his 2nd set of hood dives today so we will see. Say a little prayer......