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02/02/10 |
                              
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Immune System Blues We continue to battle immune system issues. The kids missed the majority of the last two weeks of school again. This time, I'm not sure if the kids picked up a virus at school or if Megan was clearing something old that the rest of us then caught. I suspect the latter since her symptoms began almost immediately after an IMT session two weeks ago and rapidly progressed. While the rest of Cameron's body appears to actually be healing and not requiring the same level of support as one year ago, his immune system continues to seriously struggle. His HepB titers continue to drop. I'm hoping when those titers normalize then his immune system will begin being able to address the other diseases (measles, rubella, strep & flu in particular) that are still displaying minor symptoms and hindering his immune system from handling day to day exposures.
Looking Forward We have two more major projects going on currently. First, we are preparing to list our house for sale. We dearly love our home, but have decided that it's in our best interest to move. We are having a slightly smaller home custom built. This will mean less upkeep for me as I work to also heal myself from my own Lyme Disease. It will also mean less toxic exposure for our whole family as we are having the home built as non-toxic as we can without completely breaking the bank. We hope that limiting our daily toxin exposure will help Cameron (and the rest of us) be able to address our current illnesses and injuries more fully and recover even more quickly. Second, I am preparing to organize a non-profit resource center. I had wished to be able to do it long ago, but I didn't feel that I would be able to for another 1-2 years (after my own Lyme treatment was well underway or through). However, I've had difficulty watching other affected children who haven't reached the same level of recovery in part because they haven't been able to participate in certain treatments because the cost of treatment is just too much for most parents to afford. Perhaps it's a bit of survivor's guilt. We have been blessed. When Cameron began treatment two short years ago we naively felt financially able to handle the cost. We were able to move swiftly into action and participate in every appropriate treatment option for Cam. We were rewarded with the return of our child piece by piece. But all of this has come at a price. Autism is often compared to the abduction of a child. I too feel this way. However, it has often felt that we have been required to pay a ransom to have our child returned to us a piece at a time. Most treatments have ranged from a cost of $3000-$20,000. In two short years we have spent over $200,000 on Cameron's health expenses that were NOT covered by insurance. We have been forced to scrap our previous financial plans and life goals and retirement has become but a dream. Don' get me wrong. I would spend the money all over again in order to have my child back. However, I don't feel that it's fair that only those who are able to pay for medical treatment should be allowed to have their children treated. Current statistics show that 1 in 150 children have Autism (1 in 94 boys). These statistics don't show the entire picture though. Not only are these figures most likely greatly underestimated, but they also only reflect full blown Autism diagnosis and not related Autism Spectrum Disorders. It is not realistic to expect that the parents' of all of these children would be able to afford these life saving treatments. So I hope to help in some way by opening a parents' resource center that would provide emotional, social and educational support as well as affordable access to equipment and resources (such as hyperbarics, FIR saunas, etc). I'm not sure how I will find the money, time and energy to meet my goal. However, I do know that I possess a determination that I'm certain will carry me through.
Happy Halloween! Cameron picked this year's Halloween theme, "Shrek." Cameron was Shrek, Megan was Princess Fiona and Apollo was Puss-N-Boots. I had suggested Donkey for Apollo, but Cameron insisted that he had to be Puss-N-Boots (Cam's favorite Shrek character). Apollo is not particularly fond of dressing up, but he's a good sport about it all. He did appear humiliated by being dressed up as a cat this year though. Poor dog! Trick or treating served once again as an example of how far Cameron has come. He appeared completely neurotypical as he ran through the neighborhoods collecting candy and enjoying his friends and relatives. He followed directions (only going up to doors with lights and decorations), waited his turn, shared with friends and was even cracking his own jokes throughout the night. This year was truly a very special Halloween.
This site was last updated 01/09/09
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