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....

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....

Getting Back on Track after the IS Detour

As you know, we have been battling infantile spasms for a few months. Aaron had his last ACTH injection Monday night and returned to daycare. Its been so long and hard and this brought tears to my eyes. Two months ago he could not have done this. If we sat him up in one of these seats he would just fall over face first on the table. He is also smiling and laughing again.

So far we have completed 234 manual hours of ABR which has helped him get this far in his upper body strength. I'm hoping that we will get him to the point of sitting independently and comando crawling in the next few months. But this moment has me super motivated to keep going. Look at this photo. His cheeks are HUGE from the steroid injections.

He is sitting so naturally with no supports. Just his hands at midline. He is also eating table food on a GFCF (Gluten Free Casien Free) diet. Here he is getting acquainted with the little girl his left. He really liked her :)!

A fellow blogger Mom calls them "inchstones". I'll take it!

How Do I Get It All Done?

Sooo sorry for such a delay in posting. My initial goal was to post every week, but invariably I just didn't accomplish my goal. But the saying goes that "if you don't shoot for anything, you will hit nothing". So I press on trying to carve out time to get everything done. Before Aaron was born I worked full-time or so I thought. Even though I'm working my job part-time, I work longer and harder than I ever have. Six hours of sleep is the goal every night and I'm so proud of myself if I make it to bed by 11pm to get back up at 5am for ABR therapy. Aaron didn't catch on to the nursing thing very well so I had to start pumping. I was determined that he would get the same benefit of breast milk like his big sisters. But since he has special needs, I decided I would make sure he got breast milk for at least 2 years. Boy did i underestimate how tired I would get of pumping everyday. At 2 hours a day, that's 14 hours a week! A part-time job by itself not including 15-21 hours of ABR, 10 hours of FHC, other therapies, etc. I am so much more appreciative the little and big things in my life now. Ten more months until Aaron is two and I can exhale a little bit. Have to go but look out for the next post about the status on his infantile spams.

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.

Yes I'm "One of Those Moms"

When Aaron was first diagnosed, we were devasted and in a state of shock and grief. One of the things we heard over an over again was "all that you can do is help him be the best he can be". Well what does that mean specifically? No one could really answer that one and the other answers seemed grossly inadequate and insufficient to me. I'm sure that the people who said this meant well but it sounds so cliche and many times code for "don't expect too much...do what you can to satisfy your own concience...don't be unrealistic...he will never be normal". So I set out to find out about the specifics of helping Aaron "be all that he can be". It was quite nauseating hearing this from the professionals all of the time. It was their way of telling you they didn't expect much but not coming out and saying it and not giving any specifics on anything. Mostly because they did not know and the current prognosis is so poor, I don't think anyone of them wanted to give it to us straight. I remember the doctor that gave me the diagnosis say that the information available on the internet would probably be terrifying to me. He dismissed it by saying that every child is different, but they all say that. Another, very highly respected and recommended doctor told me "not to try to make him normal" or I would just frustrate myself and him. So I'm not already frustrated not knowing what to do to help my child? I asked what we should do to help his cognitive development, he said not to worry about that now. Aaron was 3 months old but I knew immediately that we would have to be proactive and diligent about any help that Aaron would receive. I knew in my heart he was being written off because he had a chromosome deletion and I was being written off as a mother in denial. Yes, I am in denial that just because my son will probably not ever be "normal" that there is no hope that he can do and become more than traditional medicine has sentenced him with. In prior posts I talk about ABR, G-Therapy, HBOT, ABM, FHC, & Masgutova. It seems like a lot and it is. There is no magic pill or bullet to replace Aaron's chromosomes or "cure" him. But we do believe that he needs a lot more than PT/OT/Speech to routinely given to children with disabilities. Don't get me wrong, these services are invaluable to most children and we would have been totally lost without our early intervention program. But it seems that its expected that parents would just accept this cookie cutter approach to every child's needs and I just think we owe it to Aaron to investigate any and everything that may help him. Other therapies are dismissed as "alternative" but every form of medicine was "alternative" before accepted as the normal accepted practice. After many years of clinical trials, research, experiments, etc, they became the norm. None of these "alternative" therapies hurt or bring pain to Aaron, so we feel they're worth a try.

Infantile Spasms....Ugh!

This post is way overdue but I'm just getting to the point where I can post about it without weeping up and falling into a depression. Aaron was just diagnosed with infantile spasms about the beginning of September. It was totally by accident that I caught it and I torture myself with guilt that I didn't catch it sooner. I think it started sometime around April when we got back from Canada for our first ABR training. I was working on him and noticed he did this little "hiccup thing". My sister says he contorts his face like he just sucked on a lemon. We had been struggling with reflux and I thought something was coming up and then he swallowed it again. It didn't then and still doesn't look like what was described when I first read about it. No dropping of the head, arms & legs shooting out, etc. He would have these "hiccup things" once or twice a day, and never cried or anything after they were over. One day I decided I wanted to see one myself so I got on youtube. Babies were doing all kinds of things. An overwelming feeling of dread and guilt decended down on me like a black cloud. I posted on my ABR support group what I thought was happening. These women are so strong, give great advice, and are big advocates of doing things the natural way. But when I posted about Aaron possibly having IS, they wasted no time telling me I needed to call the neuro, get him an EEG asap, and even what medication we should try first. They told me about Vigabatrin and ACTH. Vigabatrin could only be obtained from Canada at the time. ACTH injections were also an option but had terrible side effects. I was so happy when his neuro gave us these two options. She already knew about Vigabatrin, had been using it for years, and already had a Canadian pharmacy to contact. The Vigabatrin has helped to reduce them to a couple of clusters a day instead of 4-5, but they're not totally gone and I so miss his smiles and laughing. His EEG on 10/14/09 improved but the hyps are still there. So we had to start ACTH injections on 11/10/09. Aaron had to be admitted so that they could monitor him and see how his body responded. His neuro started him on a low dose of .4ml once a day. Thankfully, he only developed rosie warm cheeks and no other side effects. His cheeks didn't turn into a rash and resolved after a day. The worst part for me is giving these darn injections. Oh how I hate it! Aaron has done so well with them. He wines a little but no full blown screams or cries so far. I just wish I was faster like the nurses. Anyway, we both have to endure this torture for 8 weeks. We have to give it 2 weeks to work and another 6 weeks to ween. Here are photos of him in the hospital.


Please pray that this works. If not, I don't know what plan C will be. These seizures have sabatoged the progress of his development. He has still responded to his therapy but I'm positive he would have responded better if these spasms had not been working against his brain development. But we will press forward and never give up on his potential. God is good anyway.