tag:blogger.com,1999:blog-35409930838590176302024-03-05T09:57:50.934-08:00I can do all things through Christ..."Philippians 4:13"
A chronicle of Aaron's journey with 1p36 Deletion SyndromeUnknownnoreply@blogger.comBlogger18125tag:blogger.com,1999:blog-3540993083859017630.post-70089605989901818172019-09-23T17:47:00.001-07:002019-09-23T17:47:34.592-07:00Mindset is Everything to Your Success<iframe allowfullscreen="" frameborder="0" height="344" src="https://www.youtube.com/embed/xDhUOzDkFX4" width="459"></iframe>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3540993083859017630.post-29883634432159863142010-06-28T18:07:00.000-07:002010-06-28T18:12:03.013-07:00They're BackOn 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. <br /><br /><a href="http://www.youtube.com/watch?v=zxkcUhW6Kzw&feature=channel">This song </a>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.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3540993083859017630.post-27938460384853306822010-03-29T19:12:00.000-07:002010-03-29T20:16:28.358-07:00Aaron 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 <a href="http://vimeo.com/8233375">this little boy </a>in this case study. I tried several times to post the videos but they just took too long so here are the links to <a href="http://www.youtube.com/watch?v=QllhH50i76k">Aaron Rolling I</a> and <a href="http://www.youtube.com/watch?v=8B4y5o9Yi84">Aaron Rolling II</a>. Enjoy the videos! <div></div><div></div><div></div><br /><br /><br /><div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3540993083859017630.post-1518347600036128242010-03-12T18:09:00.000-08:002010-03-12T18:17:37.832-08:00Many...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 <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">apologize</span> 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 <span id="SPELLING_ERROR_1" class="blsp-spelling-error">ABR</span> evaluation/training and currently to WI for <span id="SPELLING_ERROR_2" class="blsp-spelling-error">HBOT</span>. NONE of this would happen without your support.<br /><br />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.<br /><br />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.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3540993083859017630.post-29314853368403740552010-03-11T17:25:00.000-08:002010-03-11T17:45:22.431-08:00Interesting......ExcitingThis 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.<br /><br /><strong>INTERESTING</strong><br /><br />While we were in the chamber, Aaron leaned his head against the <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">plastic</span> 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 <span id="SPELLING_ERROR_1" class="blsp-spelling-error">Jetson</span>" on his head but as long as he has his <span id="SPELLING_ERROR_2" class="blsp-spelling-error">binky</span> sitting on my lap, he is totally content. Well anyway, when I kissed him, he <span id="SPELLING_ERROR_3" class="blsp-spelling-corrected">looked</span> 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 <span id="SPELLING_ERROR_4" class="blsp-spelling-corrected">understood</span> cause and effect. I felt like we were communicating if that makes sense. A precious moment....<br /><br /><strong>EXCITING</strong><br /><strong></strong><br />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 <span id="SPELLING_ERROR_5" class="blsp-spelling-error">onsie</span> 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 <span id="SPELLING_ERROR_6" class="blsp-spelling-error">ABR</span> 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!!!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3540993083859017630.post-90938063345658182852010-03-10T16:19:00.000-08:002010-03-10T16:33:27.723-08:00"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.<br /><br />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.<br /><br />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......Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3540993083859017630.post-68336272870193031252010-01-18T18:51:00.000-08:002010-01-18T19:01:22.864-08:00What 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<br /><br />"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)"<br /><br />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....Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3540993083859017630.post-41113459197387343102010-01-10T18:17:00.000-08:002010-01-10T18:46:57.752-08:00Where 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 <a href="http://www.wisconsinhyperbarics.com/hbot.html">Wisconsin Hyperbarics </a>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??<br />Here is a video of <a href="http://www.youtube.com/watch?v=rXrGb-ABgVw">Helen</a> 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....Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-3540993083859017630.post-17213701810152416382010-01-06T18:14:00.000-08:002010-01-06T18:34:04.300-08:00Getting Back on Track after the IS DetourAs 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. <div><div><br /></div><p><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzcgH46S9SrjD3AwWl-KP0wGq-voUwA7nnQ9BLbnWWiLYqDJDEvne0aD53Jx-f_IKqEAWTTthHFrM0KBF5o4w' class='b-hbp-video b-uploaded' frameborder='0'></iframe></p><div><br /></div><p>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.</p><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqtZzniYn9c_JO63OQBCvDjqNTO1uX3jcHn4uDTR3_a-9UT08IcFpiX1NcofEj91yHrJcNOiPOdDZVeInR3YWryhbPOrekFl6yh0lvi28GBtsGBPVu9BPY9eAiq7FRujTJmHm_lctNEbc/s1600-h/100_1512.jpg"><img id="BLOGGER_PHOTO_ID_5423818820064207106" style="WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqtZzniYn9c_JO63OQBCvDjqNTO1uX3jcHn4uDTR3_a-9UT08IcFpiX1NcofEj91yHrJcNOiPOdDZVeInR3YWryhbPOrekFl6yh0lvi28GBtsGBPVu9BPY9eAiq7FRujTJmHm_lctNEbc/s320/100_1512.jpg" border="0" /></a><br /><br /></div><p></p><div><br /></div><p>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 :)!</p><div><br /></div><p></p><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZMOO4OqGUhZzOt7jrOfRy1prJ0w0olk1POq_BWGauQGrof501DSUpXadyBi62PoCSz_npDl8GgUyIWYRgQR4n3YJkbPUibb56xpzbrfJSTB9PChLfHVK0ofUNczzUrm6vQ4jEwkCxagw/s1600-h/100_1513.jpg"><img id="BLOGGER_PHOTO_ID_5423819699844733858" style="WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZMOO4OqGUhZzOt7jrOfRy1prJ0w0olk1POq_BWGauQGrof501DSUpXadyBi62PoCSz_npDl8GgUyIWYRgQR4n3YJkbPUibb56xpzbrfJSTB9PChLfHVK0ofUNczzUrm6vQ4jEwkCxagw/s320/100_1513.jpg" border="0" /></a><br /></div><div> </div><div>A fellow blogger Mom calls them "inchstones". I'll take it!<br /><br /></div><p></p><div><br /><br /><br /></div><p></p><div><br /><br /><br /></div><p></p></div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-3540993083859017630.post-26815612577235285392010-01-05T04:28:00.000-08:002010-01-05T04:40:56.956-08:00How Do I Get It All Done?<span class="blsp-spelling-error" id="SPELLING_ERROR_0">Sooo</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_1">ABR</span> therapy. Aaron didn't catch on to the nursing thing very well so I had to start pumping. I was <span class="blsp-spelling-error" id="SPELLING_ERROR_2">determined</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_3">ABR</span>, 10 hours of <span class="blsp-spelling-error" id="SPELLING_ERROR_4">FHC</span>, 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.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3540993083859017630.post-65926980383939963972009-11-27T04:20:00.000-08:002009-11-27T05:13:26.920-08:00My Little Fighter - Hyps Are Gone!I am so happy to report that Aaron's EEG on Tuesday 11/24/09 was normal with no <a href="http://en.wikipedia.org/wiki/Hypsarrhythmia">Hypsarrhythmia</a>. <a href="http://en.wikipedia.org/wiki/West_syndrome">Infantile Spasms </a>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.<br /><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dx8Hv9WgSF3uco1xw7qIJOFOIEdbNIJYC9hKZfI_4ETrtJaRR6mugv3xy6NoDlmYI3QApfCQBMX6HaoeUjzag' class='b-hbp-video b-uploaded' frameborder='0'></iframe><br /><p>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.</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3540993083859017630.post-91282833556587654772009-11-23T05:00:00.000-08:002009-11-24T03:27:23.107-08:00Yes 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.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3540993083859017630.post-52753915601619693362009-11-15T04:12:00.000-08:002009-11-15T20:57:12.222-08:00Infantile Spasms....Ugh!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8F5Cvi0oBoij90V6MqQJvksnhhXkksv4MWrSfVXVHTNb3qPIvAo8TH8u_4MhccUWN8gJj84sss0th0312hZkZIUsq5d0YcwNGaPTyQK6GmPM9MdVcvgAmiyF0r-iC33-zO-B7VGbWRZs/s1600/Aaron+Hospital+11+10+09+2.jpg"><img id="BLOGGER_PHOTO_ID_5404558362231103506" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8F5Cvi0oBoij90V6MqQJvksnhhXkksv4MWrSfVXVHTNb3qPIvAo8TH8u_4MhccUWN8gJj84sss0th0312hZkZIUsq5d0YcwNGaPTyQK6GmPM9MdVcvgAmiyF0r-iC33-zO-B7VGbWRZs/s320/Aaron+Hospital+11+10+09+2.jpg" border="0" /></a><br />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 <a href="http://en.wikipedia.org/wiki/West_syndrome">infantile spasms </a>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.<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieNxPHxNAtlKW0GWGFNGYBn-1oq7CFj6jPAdOkjCfV54YISRNt9cRsA56PhtxKlVcIgy3j5bIaqNCKjoCaiM38W0jFuZJNUBuIrXcbBu5tGyVu_fN592659NpA-HT_2nKDPm-xm978j3w/s1600/Aaron+Hospital+11+10+09.jpg"><img id="BLOGGER_PHOTO_ID_5404557997081296626" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieNxPHxNAtlKW0GWGFNGYBn-1oq7CFj6jPAdOkjCfV54YISRNt9cRsA56PhtxKlVcIgy3j5bIaqNCKjoCaiM38W0jFuZJNUBuIrXcbBu5tGyVu_fN592659NpA-HT_2nKDPm-xm978j3w/s320/Aaron+Hospital+11+10+09.jpg" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG1dvJ2zMNDfYq-0VTQzl9nTWW6MtLDHWE1wZnmhze6O3S4ERxFDVxmFnw3HGt5hFtv2yBAjSMzSxwU8g2831wzrxakRoJ-wvHlN5ahflFQ8cT3FRFaL6P-MZRPwKD2KwbVPI_EbJ2Xbo/s1600/Aaron+Hospital+11+10+09+3.jpg"><img id="BLOGGER_PHOTO_ID_5404558877398349634" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG1dvJ2zMNDfYq-0VTQzl9nTWW6MtLDHWE1wZnmhze6O3S4ERxFDVxmFnw3HGt5hFtv2yBAjSMzSxwU8g2831wzrxakRoJ-wvHlN5ahflFQ8cT3FRFaL6P-MZRPwKD2KwbVPI_EbJ2Xbo/s320/Aaron+Hospital+11+10+09+3.jpg" border="0" /></a><br />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.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3540993083859017630.post-52302373223204692132009-10-28T04:49:00.000-07:002009-10-29T08:42:55.444-07:00Anat Baniel IntensiveOk, 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.<br /><br /><object height="344" width="425"><param name="movie" value="http://www.youtube.com/v/L7ApF1JL7qo&hl=en&fs=1"><param name="allowFullScreen" value="true"><param name="allowscriptaccess" value="always"><embed src="http://www.youtube.com/v/L7ApF1JL7qo&hl=en&fs=1" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="425" height="344"></embed></object><br /><br />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.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3540993083859017630.post-62322736245088923832009-10-27T07:52:00.000-07:002009-10-29T08:44:01.668-07:00Update - Our Very First FundraiserThank 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 <a href="http://en.wikipedia.org/wiki/West_syndrome">infantile spasms</a>. 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 <a href="http://www.donations4aaron.blogspot.com/">donation blog</a>. 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.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3540993083859017630.post-65018716146325639772009-09-30T18:31:00.000-07:002009-10-31T23:09:03.548-07:00Our Very First FundraiserThere 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:<br /><br />1) <a href="http://www.abrtherapy.com/english.html" target="_blank">Advanced Biomechanial Rehabilitation</a><br />2) <a href="http://www.g-therapy.org/" target="_blank">G-Therapy </a><br />3) Hyperbaric Oxygen Therapy<br />4) <a href="http://www.familyhopecenter.org/english/how_we_can_help/clinical_outcomes.aspx" target="_blank">Family Hope Center </a><br />5) <a href="http://www.anatbanielmethod.com/" target="_blank">Anat Baniel/Feldenkrais </a><br />6) <a href="http://www.masgutovamethod.com/" target="_blank">Mastgutova Reflex Integration </a><br /><br />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:<br /><br /><div align="center">"God's Gift to Us Fundraiser"</div><div align="center">Washington Park North Family Center </div><div align="center">2702 Kessler Blvd West Drive, Indianapolis, IN 46228</div><div align="center">(317) 259-1253 </div><div align="center">Sunday, October 18, 2009 </div><div align="center">4:00 p.m. -6:00 p.m. </div><div align="center"></div><div align="center"></div><div align="left">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. </div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3540993083859017630.post-16253785416855459152009-08-29T20:04:00.000-07:002009-09-13T20:10:13.463-07:00ABR TherapyWhen 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 <a href="http://www.familyhopecenter.org/">Family Hope Center </a>called <a href="http://www.familyhopecenter.org/english/services/special_needs_seminar.aspx">"How to Help Your Child with Special Needs"</a> 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 <a href="http://www.abrtherapy.com/english.html">ABR-Advanced Bio-Mechanical Rehabilitation. </a>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:<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhuJv7oQp0hKfb8L1B09_RUSXbmLxOshHuuXKint96Q5F2nD-NhLNo0cOd_o6ewSfw4ws7AcCsbohCjyZ5F1HTClDNNNUkGsfrr3XWqnLqWjjQ2ev39AEcsW0hOg_DvaYsDDZJ8Ndn79U/s1600-h/Myofascia.jpg"><img id="BLOGGER_PHOTO_ID_5375595327202747314" style="WIDTH: 320px; CURSOR: hand; HEIGHT: 216px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhuJv7oQp0hKfb8L1B09_RUSXbmLxOshHuuXKint96Q5F2nD-NhLNo0cOd_o6ewSfw4ws7AcCsbohCjyZ5F1HTClDNNNUkGsfrr3XWqnLqWjjQ2ev39AEcsW0hOg_DvaYsDDZJ8Ndn79U/s320/Myofascia.jpg" border="0" /></a><br /><br /><br /><br />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.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeV9t1swEKeq5r23s9NAjVTrf8xrMa6l3p8wDQ2ci1YUoT9mWzLTPuiGGWYVNMXo3dYNOynwUlKKLvrMUso25wpAxEIkbb5w_9sVEtlhEu43jia92M0FkD1hgn9C7_o0FBN2XxkXZlTvQ/s1600-h/ABR+Photos.jpg"><img id="BLOGGER_PHOTO_ID_5381154720128910370" style="WIDTH: 320px; CURSOR: hand; HEIGHT: 286px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeV9t1swEKeq5r23s9NAjVTrf8xrMa6l3p8wDQ2ci1YUoT9mWzLTPuiGGWYVNMXo3dYNOynwUlKKLvrMUso25wpAxEIkbb5w_9sVEtlhEu43jia92M0FkD1hgn9C7_o0FBN2XxkXZlTvQ/s320/ABR+Photos.jpg" border="0" /></a><br /><div><br /><br /><div>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!</div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3540993083859017630.post-47395425386463933592009-08-04T18:48:00.000-07:002009-08-29T20:03:50.364-07:00Introduction<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqGpQe93dYqZqk1XaDOGz_tMCtjm9AGZff-0nSw5cFGhuGYk8th9-tZCJQ8mCuVVVOQk2HZ69wjkKF9Q-zzHLU5_uX-Iffg92nLCZTwEHF_dMdRRnMzuaSHcRMx3zbey4VhoJWhYjuBBE/s1600-h/Picture+of+1p36+Chromosome.jpg"><img id="BLOGGER_PHOTO_ID_5366298831197103634" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqGpQe93dYqZqk1XaDOGz_tMCtjm9AGZff-0nSw5cFGhuGYk8th9-tZCJQ8mCuVVVOQk2HZ69wjkKF9Q-zzHLU5_uX-Iffg92nLCZTwEHF_dMdRRnMzuaSHcRMx3zbey4VhoJWhYjuBBE/s320/Picture+of+1p36+Chromosome.jpg" border="0" /></a><br /><div>Welcome to Aaron’s blog. Aaron was diagnosed with <a href="http://en.wikipedia.org/wiki/1p36_deletion_syndrome">Monosomy 1p36 </a>when he was about 5 weeks old after being hospitalized for failure to thrive. 1p36 is a microdeletion at the tip of chromosome 1. Prior to a few years ago, the technology did not exist to detect this abnormality, so there are only about 100 documented cases in the U.S. Today Aaron is 9 months old and we have gone through many trials and tribulations with all of the complications and challenges that this brings. I started this page some time ago but have not posted because I wanted to start with “his story” but I just cannot carve out the time to get it done in a timely manner. It is my hope that this blog will enable those that love and care about Aaron to have a way to keep up with his progress and also be a blessing to any other families that are faced with the challenges of raising a child with 1p36. Eventually I will post his story but I just wanted to get started. There is so much I want to say and share. It seems just yesterday that we brought him home from the hospital and I'm realizing that time goes by very fast. So I will go ahead and start posting so that I don't lose a lot of information as time goes by. In the meantime, here is more information about <a href="http://en.wikipedia.org/wiki/1p36_deletion_syndrome">Monosomy 1p36. </a></div>Unknownnoreply@blogger.com0