Monday, June 28, 2010

They're Back

On Friday we received confirmation that Aaron's infantile spasms are back. He doesn't have the clinical symptoms but the doctor confirmed them on his EEG. When Aaron stopped laughing and smiling a couple of months ago, I knew something was wrong with my baby. He was responding to his therapies but very disorganized and disoriented when picked up. We start the ACTH injections again. Please pray that they work again.

This song was written for special needs parents and its such a good reflection of what we have been going through. There's just no way to put into words what all of this is like and I'm grateful that someone had it layed upon their heart to give special needs parents a voice.

Monday, March 29, 2010

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!



Friday, March 12, 2010

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.

Thursday, March 11, 2010

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!!!

Wednesday, March 10, 2010

"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......

Monday, January 18, 2010

What Are My Goals for My Child?.....

Someone posted this question on the message board for our 1p36 support group. Its such a loaded question for me and I couldn't help myself in my response. It was so long, I thought it was worthy of posting

"I'm reluctant to share my dreams but what do I have to lose? Like my other children, I want Aaron to be the best that he can be. I don't know what that is right now but I'm trying to give him the best chance he has to get there. Dare I say I want him to have a job and live independently? I'm sure others think my goals are unrealistic but I'm not going to limit his potential just because some people have become experts in documenting what our kids CAN'T do. Knowing our kids' limitations and challenges is definitely important so that we can properly navigate our way to help them as much as possible. But at what point are the"experts" and "professionals" going to start studying and researching what therapies and programs address the "source" of our kids' problems and not just manage the symptoms? The source of our kids' problems don't just include missing genetic material. There are other issues. When is someone going to think outside of the box, like they did for Down Syndrome, and explore therapies our children will respond the best to, instead of throwing us a cookie cutter approach to their issues? When Down Syndrome was diagnosed early on, it was assumed these kids could not learn nor have productive independent lives.They went from being categorized as severe to profoundly delayed to moderate and even mildly delayed. Why? Because someone decided they had potential, taught them like everyone else, and if that meant starting a lot earlier than other kids and increasing the intensity of their intellectual curriculum, so be it. Down Syndrome going to college? Years ago it was "no way". Today its "yes way" but they had to take a different path than most. I have become Aaron's student in his first 15 months of life and I'm trying my best to apply what I have learned to his well being. My goals are sure to change as he grows and develops and I discover the path he will take. He is so young that my experience is very limited but that's just my two cents.Ronette (Aaron 15 months, 1p36 & IS)"

Why do I feel that I have to apologize for having dreams for Aaron? No one else apologizes for their neurotypical children. I guess its not having dreams per se but the types of dreams I have for him. Anyway just sharing my thoughts....

Sunday, January 10, 2010

Where Did the Time Go?

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....