Another first! Today I had some errands to run after I picked Asa up from school. I realized that I forgot to take an extra can of Pedisure with us! Now, of course I could have bought a 6 pack of Pedisure for $10 but we have cases and cases at home and I kept thinking of all the other stuff I could do with $10. So I made a decision.....I would give Asa real food instead of a Pedisure cup!
I know that he eats lots of real foods but he has never had to rely on real food. I'm happy if he tastes and plays with real food. But I don't think he takes in enough calories from just food. But today we were gonna see. After school we went by McDonald's and I ordered food just for Asa, well I got a coffee for myself! I ordered Asa a yogurt and a cheeseburger. Asa gobbled the yogurt up and ate the cheese and bun from the burger. He can't chew too well so I only gave him a taste of the burger (I hear you cheering that I didn't give him the meat, Christine!). I thought it was pretty funny that he is nearly 3 1/2 and we've never ordered food for him at a restaurant!! After the grocery store he had an applesauce pouch so I don't think I had to worry about the calories! He never did eat his 3rd cup of Pedisure today. When we got home he got sick so he went to bed at 7pm after I tubed his meds. I just hope he doesn't wake up at 5am tomorrow!!
I've had to keep a feeding journal this week for the GI at Vandy. The first day I was tickled that he ate so much real food. It was a Monday and a day we don't have any appts or plans. On Tuesday he did ok but he couldn't eat in the morning. By Wednesday he was so gaggy in the morning that he couldn't even eat his breakfast Pedisure until after 10am. He ususally has this at 8am. He continued this gagging the next 2 days too. I wonder if he is having sinus drainage issues and is choked up in the morning. He just gags and gags and covers his mouth. I hate to see him stuggle with whatever it is but in the past he hasn't had the ability to gag without puking so this is progress believe it or not.
On a terriblely sad note, the mito community lost another little fighter yesterday. I've mentioned Cooper Knight on here before, asking prayer for him when he had a transplant last year. Sadly, the transplant didn't go as well as everyone hoped but Cooper held his own and he was back home in time for the holidays. In January, he went on his Make a Wish trip to Disney with his family. In February, he had another surgery and just didn't bounce back at all. He got very, very sick but would seem to be ralling back before he was knocked down again. Each time he kept fighting and his family kept fighting. Last week his family and doctors decided that Cooper's little body was too weak to keep recovering and it would play out long before his strong will and fight. Last week Cooper came home from the hospital to be with his family for as long as he could. According to his mom's blog and FB, they enjoyed every second they had together. He even managed a stroll around the neighborhood in his Power Wheels and have wars with his brothers using marshmellow guns! And even though his body couldn't fight anymore, he continued to fight. Sadly, he could no longer fight and last night he passed on to the loving arms of Jesus.
I know it is awful to think of kids dying and many of you may have no idea who Cooper is (or any of the other kids I've mentioned) but they have an amazing story to tell. Even as little kids they have more fight and love and life in them than many grown people I know. How can such little people teach us adults so much?! And the parents, siblings, cousins, grandparents and friends that love these little mito warriors are warriors themselves. Where many of us would curl up into a ball, these families share the struggles and joys of their little ones. They have faith when I'm not sure I could. They remain hopeful when everyone else has given up hope. These are the type of people I've become "friends" with over the last 3 years. I'm so proud to have gotten to know all these families and my heart breaks when I hear of another loss in our "community". Heaven has too many of our mito kids!
I guess that's why I share our story and their stories. To raise awareness of a fairly unknown disease that is taking away amazing kids. I wish we could cure mito but that seems unlikely to happen tomorrow. What will happen tomorrow though, is that mito will be attacking kids, harming them...many of them permently...and yet most people have never heard of mito. It is a silent killer! If it is going to steal away these brave souls then it should have a name and everyone, EVERYONE, should hate it! Not just a small community! I could go on and tell you all the reasons mito could affect your family. Things like diabetes, Alzheimers, Parkinsons and some cancers. And all these and more are true but tonight the reason to hate mito is for Cooper Knight......his mom Sarah, dad Kevin, big sister Caroline and big brothers Oliver and Adam! That's why I hate mito tonight!
Cooper's service is Tuesday at 10am. His favorite color is orange. I'll be wearing orange and thinking of Cooper even from miles, hours and states away!