As we are approaching Thanksgiving I thought I'd do an update and just let you know how everything is going. Aaron is doing very well - he is still not allowed to put weight on his leg but he is happy and always in cheerful spirits. We've had lots of fun activities - he went on a train ride on Halloween with other kids from PCH and Make a Wish, he has had lots of time with his two cousins playing and doing crafts, and has made a friend on our street that he adores. I posted two pictures - one of us with the Make A Wish wish granters and one at the splash pad that was a good picture of Ben doing what he loves. I posted an update about Make-A-Wish but I don't think it got distributed. If you look at that one there are more pictures.
Ben is making great progress after going through the JumpStart program and I think we are on the right track. It is a constant fight for services for him due to the state budget cuts, so please pray that I can get him what he needs. It is being decided right now if he qualifies for a program that would really get him the therapy he needs, but it isn't looking good. He still has no functional speech so it frustrates me that this is even a fight.
Speaking of Ben, he has contracted what they suspect is H1N1 so he and I are home and Aaron is spending the days away. They put them both on Tamiflu, and obviously it is a big prayer request that Aaron doesn't get this. So far I am fine, and I am going to try to get on Tamiflu as well today. Poor Ben is pretty miserable, but hanging in there.
Aaron has scans coming up in a couple of weeks so I am going through my usual anxiety this time compounded because his doctor doesn't want to do the PET scan. I was given a protocol from that doctor that included PET every three months for the first year post treatment, so I'm not sure what has caused this change. I'm going in next Monday and I'll push for it then, because a ct scan of his chest and xray of the lung won't tell us if there is a tumor somewhere else. Crazy! I am learning how to fight for my kids through all of this for sure!
Damon always says that I leave messages that are too "cheery" and don't tell the bad stuff. I think I do, but I will be transparent and just ask for prayer for our family. I think the wear and tear of both boys having medical issues has worn us down and with the financial problems that have been created through it all some days are pretty bad. Ben is progressing, but autism is difficult on a family because it can limit normal activities because of the behavioral issues, etc. Please pray for our marriage that we can stay unified and connected, and for me that I won't be as anxious and can somehow keep my sanity!
Looking forward to Christmas at HOME this year, and making it a special and magical time for the boys. Wishing you all a very wonderful Thanksgiving Day and I'll check in with scan reports soon.
Thanks,
Barbara
