Baby Steps

We had our Doctor visit today, Henry has dropped weight again. I thought for sure that he was gaining weight and it hit me pretty hard. It seems like such a small thing I know, it just kind of took me off guard. I wasn't mentally or emotionally prepared to have him lose weight. They are worried that he's failing to thrive. Which I would understand except that yesterday we were playing and he was laughing. He was smiling and we got his table today, for him to put his toys on and play. It helps him stay sitting up right so he doesn't damage his back any more. He really just enjoys throwing toys off of it, but still likes it.
Sometimes when we go through trials we think the big things feel like a roller coaster, when really it's the small ups and downs and the twists that catch you off guard that are really harder to handle. If that makes any sense.
On the plus side Henry is responding really well with the Vinblastine. His rash is getting better, and his organs are shrinking again. So that's a good sign. I usually do well at focusing on the good things that he's doing and the small steps forward, but today I wasn't prepared for bad news. Like a punch to the stomach when you're not looking. Really if you saw him you wouldn't think he was sick, minus the tube in his nose... We're making progress it's just slower than we hope.
Mom and I have been doing research on LCH and specialists in the US. Turns out there are only 4. One of them is at Vanderbilt Children's in Tenessee, not sure where the other ones are but we're working with the Histiocytosis Foundation to get some more answers. More information on LCH if we can. We'll let you all know what we find out.
Thanks to all of you that keep Henry in your prayers, we really appreciate it. And I pray that the Lord will bless your lives for your love and support.