We've had another up and down couple of months. Cameron has reached a new high point in recovery last month (I'll get to how in a little bit) from which of course we have taken a step back. We also had a wonderful although exhausting Christmas.
On Christmas morning, Cameron apparently woke at his usual time (he knows he's not allowed to get out of bed and come downstairs until his clock reads 7:00). However, he neglected to wake anyone else up (which on any other day would have been a beautiful thing). Instead he proceeded directly to the Christmas tree to open presents. He was really only looking for one, Mario Party DS which was at the very top of his Christmas Wish List for Santa. Apparently he sized up all of the presents under our tree and happened to pick the right one on the first try. So he went into the family room to play his game and celebrate while the rest of us slept. When Megan awoke she came and got us and we all discovered Cam in the family room playing his game. He told us about his morning and was very pleased with himself before joining his sister in opening the remainder of the presents.
Another Treatment Journey
We traveled to Connecticut in December for 10 days of medical treatment and a little bit of skiing too. Unfortunately, Scott's grandfather passed away the day before our trip, so he and Megan flew from Connecticut to Michigan for the services while Cam and I remained in Connecticut for his scheduled treatment.
When we arrived to Connecticut, Cameron had been spiraling downward again as his ammonia levels had again become very high and a downward domino effect ensued. Cam became emotionally unstable and we were witnessing meltdowns for the first time in a very long time.
We had scheduled a week of intensive treatment at Center IMT. Cameron was scheduled to be at the center for four hours a day (with a break in the middle for lunch). After Cameron's initial evaluation, the center director and clinicians explained to me what they felt were some critical areas to address with Cameron in order to meet our goals. I didn't notice any real changes on Monday. Tuesday Cameron was extremely defiant and energetic as the team began clearing Cam's lymphatic system. Wednesday morning was much of the same. We opted to add an additional hour of treatment on Wednesday evening (a "homework helpers" session for those familiar with the process). Cam had four bowel movements that day (apparently completely clearing whatever the team had been working on) and Wednesday night I had a new child. Suddenly he was making up his own jokes, drawing, making up games and was simply a delight.
On the way to the center each day we had to drive past a Gamestop store. Cameron would beg to stop and shop there every morning and I always told him that it was closed and wouldn't be open until the afternoon. Then we would strike a deal that if he behaved all day at the center then we could go there in the evening. One morning Cameron came to me with a "letter" that he had written while I was getting dressed. It read: Gamestop, Open, Cam
He held up his letter and told me "You drive to Gamestop, I'll get out and the Shrek guys (his favorite little toy characters) will tape the letter to the window!" I explained to him that I would make sure that Gamestop got his letter but that we needed to be getting to the center now.
Saturday we took the kids skiing at a little local ski hill. They had a fabulous time and did very well. Later that afternoon, Cameron asked to go to the center again. He knew how much better it had made him feel (even if he didn't like it much during the sessions) and wanted to return for more. I explained to him we were done at the center for this trip.
Sunday evening Cameron was fooling around while putting his pajamas on after a bath. He slipped and landed on his elbow. He screamed and cried for an hour and then fell asleep. We thought that perhaps he was asleep for the night (even though it was only just after 6pm. However, he awoke again after 10pm again screaming and crying that his arm hurt. This response was not like him at all and worried us. I decided to drive him up to the children's hospital and have him looked at. At 2am, while we waited for the doctor to return and go over Cam's x-ray, Cam announced "it is almost morning mommy, we need to be getting home!" The doctor found that Cameron had bruised the bone on his elbow and it would hurt pretty badly for a few days but that he should recover.
Monday morning we awoke and headed out to New Haven for the children's appointments to see Dr Jones. Dr Jones is considered the leading pediatric Lyme specialist. We were very excited to have him consult on the children's cases. He gave us four hours of his time, knowledge, experience and a prescription for a plan of attack for the next four months. We gave him $1600 and returned home the next day feeling good about our trip and looking forward to the future.
Cameron held his own for the first three weeks back from Connecticut. Everyone was amazed by the progress made at the center. I've requested that his OT begin testing him so that we can objectively measure his progress.
The kids (and I) have worked our way up to a full dose of our new antibiotic combination. Megan has responded the best (which makes sense since she has been affected for the shortest time and does not have as many compounding factors). I've been the sickest (again making sense since I've had a chronic and persistent infection for more than 20 years). Cameron seems to have become backed up and high in yeast. It has been four weeks since his last IMT appointment. The holidays and other issues have caused his last four weeks to be cancelled which has likely contributed to this. However, even so he is doing much better than he would have handled all of this a year (or even 6 months) ago. Thankfully, he has an appointment this week. We have planned on him taking his sister's appointment time as well and getting a full two hours of IMT in to get him back on track.
So we stay on this roller coaster for now. But we are beginning to get bigger and bigger tastes of the finale.
We joined the NAA for their Holiday Donation Match Drive this December. We helped to raise $575 this year for some wonderful Autism programs run by the NAA. The NAA was giving a $500 gift certificate to the team that raised the most money. We were secretly hoping to win so that we could use the gift certificate to purchase books and videos for the resource center we hope to open. We were very proud of our friends and family who helped us raise so much money and help us come in second place. Thank you to everybody who sponsored us. While the contest is over, we continue to invite you to support the NAA and make a donation through our fundraising page ( www.firstgiving.com/camsvoice ).
Thank you again to everybody who has supported those affected by Autism with their donations, well wishes and prayers. Here's to a Healthy and Hopeful 2008!
This site was last updated 01/09/09