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.

Anat Baniel Intensive

Ok, I have some video this time. These were taken during Aaron's ABM intensive this prior weekend. The practitioner is one of Anat's trainers. I think she has been doing this for about 20 years. It was phenomenal. She really made my baby work. He whined a little but kept up with her and didn't have a total melt down. I was so proud of him. She saw him for 6 sessions in Chicago. Two sessions on Friday, Saturday, and Sunday.



Not too bad for a kid with a large chromosome deletion and infantile spasms. He made so many "inchstones" during these six sessions. Most of all, he demonstrated his ability to learn. You will notice that when she pulled his feet and slid him across the bench, he lifted up his head. The first couple of times, his head just bobbled on the bench as he was being pulled backwards. He quickly learned to hold his head up when she pulled on his feet so that his head would not hit the bench. I didn't notice this until she pointed it out. I swell up with pride thinking about all of his sessions. He also has weekly Feldenkrais visits to maintain the progress from the ABM intensives. The plan is to do the intensives every quarter and continue the weekly maintenance visits. He is doing so well right now. I just pray we can keep him healthy through the flu season.

Update - Our Very First Fundraiser

Thank you to everyone that participated in Aaron's first fundraiser! I am sooo sorry I did not get any pictures. With all of the hustle and bustle of it all I brought the camera but totally forgot to take pictures. I will do much better next time. Per the last blog, we needed to raise about $5000 for the Anat Baniel Method intesives, the ABR training/evaluation, and machine rental. We raised $1000 on-line before the event and $1200 at the event. Thank you so much! We had enough for the ABM intensives and Aaron did wonderfully for all of his lessons. The practioner could not believe how alert and attentive he was despite his infantile spasms. Ugh! I will be posting about that a little later. I was so proud of him and we could not have done it without your support. Our next immediate need is the 3rd mandatory ABR training/evaluation and machine rental for 3 more months. We have to return to Illinois November 6,7,8 for ABR. We are still taking donations and would appreciate any support. I promise to take pictures and we should also be getting Aarons before and after pictures so that you can see how much progress he has made in the last 6 months. I am really excited about that. For more details on what donations will be used for, go to his donation blog. This blog provides detailed information on our hopes and goals for Aaron, his therapies, and how the funds will be allocated. Thanks again for your support.

Our Very First Fundraiser

There are just not enough hours in the day and I have easily gotten behind in posting. But I had to "make time" for this post. I'm excited to report that we have finally gotten most of the particulars in place for Aaron's very first fundraiser. As you know, we are pursuing a lot of alternative therapies for Aaron that are not covered by insurance. There is no magic pill or therapy to "cure" Aaron or replace the chromosome material that was lost. But I do believe that there are therapies that will enble him to optimize his potential and each therapy has a specific strength that will meet his needs. After literally months of research, I have narrowed them down to six therapies that I feel confident will give him the best chance to speed up the process of meeting his developmental milestones, and ultimately give him the best chance to live independently. They are as follows:

1) Advanced Biomechanial Rehabilitation
2) G-Therapy
3) Hyperbaric Oxygen Therapy
4) Family Hope Center
5) Anat Baniel/Feldenkrais
6) Mastgutova Reflex Integration

I consider the first three to be the foundation to all of his therapies and they will optimize his mind and body's ability to respond to the last three therapies. As expected, the first three are quite expensive. Hence the need for fundraising. I will go into more detail about each one in future posts, but our immediate need is to pay for the 3rd mandatory training for ABR during the first week of November, the ABR machine rental for 3 months, and 6 sessions of Anat Baniel therapy at the end of October. The practioner is very highly recommended and was trained and mentored by Anat Baniel herself. The ABR training will cost $1895, the machine rental will be $1050, and the Anat Baniel sessions will be $1500. Including travel expenses, the total is close to $5000. We hope that you can join us at his benefit reception detailed as follows:

"God's Gift to Us Fundraiser"

Washington Park North Family Center

2702 Kessler Blvd West Drive, Indianapolis, IN 46228

(317) 259-1253

Sunday, October 18, 2009

4:00 p.m. -6:00 p.m.

I am thoroughly exausted but excited at the same time as I ponder Aaron's potential. He has already responded very well to everything we have been able to start and I just pray that we can continue. God has blessed us with a wonderful opportunity since he is still under 2 years and I pray you will be able to undertake this journey of wellness with us.