This has been a tough week. Just when I think I've got it all figured out and things hit a good, even stride we hit a speed bump!
Most pausing was finding out early in the week that our mito friend Emma had died. She had been doing very well so the news was really shocking. Emma was 9. Such a doll. Please keep her mom and dad and 1 year old brother and sister in your prayers. As hard as this week is I can't help but think that the next few will be just as rough. Once the friends and family go home, once the daily routine gets going again. Once the medical equipment has to go back. Please pray for Karrie and Jason.
At the visitation on Friday I found out another mito friend, Jackson, wasn't feeling and was running a fever. By Saturday morning he was in the hospital fighting an infection. His fever has been down and he seems to be better so I'm praying this will be a quick visit!
These are both kids who moms I adore! Don't get me wrong, the kids are amazing but I admire their momas so much! These are ladies who I enjoy getting to meet for extended meals every few months. Ladies that I could talk to for hours. Ladies who I wonder how in the world they get it all done....then I remember it's because they have to and failure is not an option! I love these momas to pieces and pray for them daily. To see them hurting and struggling is not what I wanted!
And in very minor terms considering what my friends are going through, we found out that we need to completely change Asa's diet. I am by no means comparing a minor bump in my own road to the huge road blocks my dear friends are meeting but it is a bump for us still.
Asa is 99% Pedisure feed. He drinks 3 or 4 cups of Pedisure a day. He eats bites or nibbles a few times a day but I'm usually just trilled if he will put something in his mouth! I'm not worried about the calories or content because he has the Pedisure as his main nutrition. Pedisure is dairy based though and allergy testing (via blood test) done in Houston in March showed the Asa is allergic to dairy. Just to be sure though we saw an allergist locally who did the stick test on Friday. Well, he is still allergic to dairy. Along with peanuts, pecans, soy and cats! On and some grasses but that can be fixed with meds.
For the dairy we will remove the allergens for a week. After a week try the foods again. See if we notice a difference. So we began reading labels and trying new foods! Asa has been so happy to try new foods lately so I'm hoping this will be the push I need to really, REALLLLLY, try real food.
I'm not sure it is going so well! For breakfast this morning he had 1/2 a pancake and a cup of Rice Milk. For lunch he had less that 1/2 can potted meat and 1/2 a banana. He also had a applesauce pouch and a handful of Poptart bites. Add in 1/2 cup of apple juice and a cup of tea. That's it for today. How many calories do you think that is? He has already lost a tiny bit of weight since we've dropped from 4 cups of Pedisure to 3 about a month ago. I'm ok if he looses some weight but I don't want to create a problem!
An alternate option is to try an elemental formula like he was on before. I'm not sure he'll drink it orally though. He may, he seems to lack taste buds! Since he is trying to eat more and try new foods then I'm really hoping this will be the push we need get him eating real food! I've just got to get creative and I'm feeling very lazy and creative!
And I'll say again. These are all just minor, minor issues compared to what my friends are dealing with so please say a prayer for them all!