Mothers Intuition

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."

Tuesday, August 2, 2011

Setting up CHOP appointments, are we really doing this again?

Little Man's biggest issue right now is his anemia.  The hematologist here feels it is nothing but iron deficiency anemia and he will continue to have it with the diet he is on. As if I can just change that? We need a second opinion before he needs a 3rd blood transfusion.  Maybe this would be a benefit of going back to CHOP as well?  To at least have assurances that they acknowledge the FPIES mechanisms into considerations of why he continues to fight such threatening anemia.

No one, no one wants to feed my child more than I do. But how many times a day do you give your child something that will hurt them? Something is NOT right in his gut, and he will continue to build these reactions until we figure it out. And then he'll have no foods left to try because his gut will have pushed everything over his limit and attacked it. THEN we will be in more trouble than we are now.  We have a great GI, helping us at every step; but it is clear that we need more heads in the game, more opinions to get to some next steps.
So, it is decided.  With our GI's support, we will get appointments lined up at CHOP.  We called and immediately got a follow up appointment with Allergy for Aug.23. I have NO idea how we are getting there or how we are paying for yet another trip out east but I really feel we need to do this- for Allergy, GI and Hematology appointments, all while we are there.

Little Man still weighs 24#, he is 18% for height and 7th% for weight at today's appt. No weight gain in many weeks, months? We need to get labs done, check CBC so we can see how his hemoglobin is doing, and GI wants to run a full immune panel as well (something he had done in the very beginning) to have fresh labs done for CHOP. We also need to do IV iron again soon. We await to hear if/when our GI got his other appts scheduled for, so we can work on finalizing the plans....

No comments:

Post a Comment