Time flies when you......are busy with 2 FPIES babies

Almost a month has passed since my last post and so much has changed and yet so little has changed. Hayls continues to speak long sentences and sings songs even making up her own words to tunes she knows. Heath has turned into an active very loud 6 month old who shows no signs of slowing down or softening his screams at his sister. Hayls is slowly warming up to Heath and holds his hand and pats his head but won't let him touch her or won't sit on my lap if I am holding him. Life goes on with two kids under two and sometimes I fool myself into believing we are a "normal" family. Sometimes I even think of feeding the kids food.

Behind these seeming normal things my world is being rocked and shattered daily. Hayleigh is crying for "food" more and she knows that we don't eat carrots for every meal. Heath is getting upset when he cannot eat anything (We are yet to try him with food and I have no idea when we will). My heart is being torn to pieces every day in more ways than I can count but I put on a smile for the kids and move forward.

I am fighting daily.....still fighting for so many things...... such as something as simple as medication for my kids. Motrin, neither child can have it so the pediatrician and I have been going through red tape to get just the ibuprofen powder so I could provide pain/fever relief if necessary. Something as simple as Nystatin for yeast (which is causing Hayls incredible discomfort in many areas) needs to be compounded for them. Basically everything you ingest needs to be reconsidered, turned inside out and torn apart and then stripped to the basic ingredient to see if they can tolerate it.

Finally our battles with the Drs seem to be paying off and we have gotten approval for both kids to be seen at Stanford. We also have what seems to be a great allergist on board and we see a new GI next week but they still all tell us that they have no clue about FPIES and so much is unknown. Many questions follow, such as is FPIES just part of what is going on? What else is going on?

I haven't blogged in a while because I feel as if I can barely keep my head above water with the regular kid stuff, the FPIES battles, hubby traveling and the dog having seizures.

However, I continue to thread water and whenever I tire, my great support: fellow FPIES moms, friends and family help keep me afloat. You know who you are and I would not be where I am without you! Thank you for your continued support through these very though and trying times, thank you for everything!