What I have noticed is that his appetite is not as big when he is strong. Kinda backwards. He eats, but not great and I have gotten to where I have to force him to eat. I really only have to pin him down to get the bite in his mouth, then he chews it up and swallows it on his own. Crazy kid.
We added pediasure to his bottles which he loves (duh, sugar, what's not to love) so he drinks about 3 eight ounce bottles a day. It's a combination of formula, goat's milk, and pediasure. He gets a good boost of calories from the bottles so we are thankful for that. He doesn't tolerate cow's milk very well and goat's milk is really expensive. So not sure when we will get him off the formula. The Doctors aren't really concerned nor is the nutritionist.
I of course pray that he stays strong, but the reality of Mito is that this cycle will probably end soon. The last time he was this strong was at the beginning of November. Then at Thanksgiving he went down. We don't know what "normal" will be for him yet. It will probably be another 6 months before we see a real pattern. As far as the vitamins, we hope they are doing some good but honestly we don't know and probably never will. Caleb started them very early on in the whole process (compared to many other children, some go for years not knowing what they have) so we really don't know what his baseline was before vitamins. I'm totally ok with that and we will keep taking them believing that they are doing some good.
My last thought for the day...(wow, I'm not writing this at midnight! score!) the title. Jason and I first really learned this phrase back when we were first married and going to counseling and some recovery groups. "One day at a time." Usually used to reference addicts and helping to cope with the overwhelming feelings that sometimes happen. You don't have to not do (fill in the blank) for the rest of your life, just take it one day at a time. Sometimes one hour at a time. Well recently it has taken on a new meaning for me. Last time Caleb was strong it was really hard when he started coming down. I didn't really enjoy any days that he was strong after that because I just knew it wouldn't last. People would comment on how well he was doing and in my mind I would think, "yea just wait until next week." While that may be true, I can still enjoy his strength today. I can take it one day at a time and enjoy the victories of today. Tomorrow may be a different story, but if I don't enjoy the strong days, well, I need to. I'm not going to lie, it is really hard because short of a miracle from God (which we still pray for daily) he probably won't "get better." The physical therapy and occupational therapy is really just keeping his muscles moving and trying to teach them how to work. But it's not like it's going to teach him to walk, or to get stronger. His muscles don't make the energy necessary to give him strength. I think he will walk when he gets a little more mature and independent and understands what it all means. But I am so thankful that we have these amazing opportunities and people that can work with him one on one. They come to the house and they provide emotional support too. So with all that rambling, I am learning to be thankful for the strong days. If there are 1, or if there are 30. I rejoice for Caleb's little victories. Like catching a balloon with two hands, putting a Mr. Potato Head piece in correctly, or army crawling 5 feet. He is my little champion and I can't wait to see what the future holds for him!
On that note the pictures posted throughout the blog were taken just a few weeks ago. If you would like "real" prints please email me, don't try and print these :)