Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Friday, December 24, 2010
Santa Claus comes tonight....
We got the news that Little Man will need to stay in the hospital over the weekend, and through next week, to continue the TPN full strength for a few more days (until biospy results are posted), and then wean back onto his hemp formula. The change will be the addition of the multivitamin (intended for TPN solutions) added in to his daily regimen. His hemp milk formula has many vitamins and minerals but is missing some, and since we have not (and do not know when) been able to increase his diet to provide for those vitamins and minerals; it is essential that we find a multivitamin that he can tolerate. I have searched every vitamin supplier I can find and can not find one that fits his needs and avoids his allergens. This one is the closest, and since designed for TPN (dissolvable) solutions, there is hope it can be something his body will not sensitize to. As with everything else, only time with tell- it will be a trial. We discussed that it would be a 2week trial, we would push through minor symptoms and if there is questionable symptoms at the end of the 2weeks, he would be re-scoped to be sure we haven't lost his baseline before proceeding.
The villous atrophy is what scares me with proceeding...the silent damage that was being done- and we don't know what from. Was it soy? Was it from corn and his inflammation never healed? Was it millet? Is millet too closely related to wheat? Is it a small bowel bacterial overgrowth? (aspirates were taken for that). Without knowing for sure, can we really just push through small symptoms? Are we risking villous atrophy again? All questions only time will tell....and Faith. Faith that I will continue to be led in the right directions with my instincts, instincts that connect me to my little man like nothing I've ever experienced. I have no doubt where this Gift comes from.
Tonight, we would celebrate this great news of healing-- but we are a little busy preparing for another celebration. We will celebrate our Christmas early, tomorrow. Both Little Man's daddy and I work on Christmas Day....we both have been on FMLA so much over the past year (most recently the past 7weeks) and Little man is stable, with my sisters here to help with him and his brothers, so we can honor our commitments to our jobs. To the fellow co-workers who have given so much of their own time to make up for our many absences.
So, Santa Claus comes tonight....he has already visited, his elves work fast when little boys slip into slumber. The best Christmas present will not be under the tree....we arranged for Little man to have a pass for 4hrs tomorrow morning so our family can have our Chirstmas celebration, together....even if just for a few hours. It will all be part of the surprise for his brothers tomorrow morning. They will wake up to presents under the tree and this letter, from Santa:
Dear Meyer Boys,
Desperate times call for desperate measures. Not many kids understand that I start delivering presents
the morning of Christmas Eve. Where it is Christmas Eve for you it is Christmas Day to others. I know both your mom and dad will be working Christmas day, so I made a little detour to your house. I want you to know that I have kept up on how little Sam is doing. Although little boys can always be better, the Meyer boys are some of the best behaved boys I know. Your strength, courage, and loyalty to your little brother shows the depth of love you have for him. It is not easy to have brothers sometimes, but it would be a very lonely place without them. So I have made your Christmas Eve into Christmas Day. Have a very Merry Christmas and a Happy New Year.
St. Nicholas (aka Santa Claus)
Merry Christmas Everyone!