Today was Avery's 10th radiation treatment and she is still doing well. She seems to perk right up after each session and wants to eat right away. She is up to 19.5 lbs which is where she was at when we started this whole fiasco. I feel like we've hit baseline now, course now our goal is 22lbs. Cheetos and Ice Cream still seem to be the best convincing items to eat, but we are trying to incorporate some healthy fats as well. The OT therapist indicates Avery knows what she is supposed to do in most all cases, but has a hard time with some of them due to her ataxia and weakness. I take this to mean she is brilliant. Which we already knew, but it helps to hear it....well sort of hear it.
Today we heard from a family in KC who just discovered their 1yr old Lucy has a brain tumor. Removal was successful and now they are looking at treatment options. We were lucky enough to connect via a Ryan Lawn & Tree customer that had been following Avery's story. From one who has been there, it was so nice for me to have someone to talk to about the journey we were about to start and I will forever be grateful to the Trysla's for sharing their story with us. We were hopeful that one day we could do the same for someone else....and here it is! Lucy is doing well right now but like Avery, needs all the prayers she can get. So please include her in yours tonight.....I have a feeling Lucy and Avery are going to have a very special bond as the years go by.
Love from the hot and humid land of gators....
Jenn
One of the gymnastics moms is a pediatrician at Boystown here in Omaha. She has suggested to us to put Carnation instant breakfast in ice cream. It ups the vitamins and calories of ice cream. I struggle to keep weight on Michaela but for obviously different reasons. We also do Boost at our house on gymnastics days b/c it is like chocolate milk, but has more vitamins and calories. It seemed to have the least sugar of the protein drinks and the dietician at Hy-Vee also recommended it. Don't know if this will be appealing to Miss Avery, but I thought I would pass it along. I will also say that Miss Michaela hasn't put on any weight, either, but I shudder to think how skinny she would be without the Boost! Hope you are hanging in there! You guys are getting close to coming HOME!!!
ReplyDeleteJen Petersen