Enjoying days with a baseline and the last days of summer...

Little man has been doing well. It is like we have a new baby, someone we are just getting to know. As his mom, I knew he was there under the mask of pain and tummy upsets but now we get to see more of him and play with him, explore with him, giggle with him....

I have continued to tweak his formula and now have added Hemp high protein powder to his current formula. This bumps up his protein and calories well, it also makes it a bit thicker so I am still playing with the right ratio of ingredients to make it most palatable for him. He has had varied intakes over the past week/week and a half and it always makes me nervous when he doesn't seem interested in his bottle -- especially when we are moving in such a positive direction for him. I am so nervous about him being sick again - not only losing ground but backtracking. I just wish everything could continue to go in this direction all the time.

He has had some 'typical' toddler things this past 2weeks- he is teething his 1yr.molars, tonight I felt a sharp tip on one side so those are close to coming through. Then, we are a sharing family- and that includes the germs and Little man has quickly developed a cough. He was diagnosed with asthma during our consultation at CHOP so we have the usual medication profile for an asthmatic. Except, how do you give an inhaler to a 14mo. old? Well, when he needs it- you give a nebulizer treatment instead. Little man got one last evening because daddy didn't like the way his cough was progressing through the day. The albuterol in the treatment made it difficult for him to sleep last night....well, at least that is what we are hoping it was from. Sleeplessness has been a part of his previous reactions to foods. Is he reacting to something in the Hemp protein? Is it too much protein for him- afterall he does have Food PROTEIN INDUCED enterocolitis - what if I make him intolerant to hemp? What would we do then? Please, please, please - let this just be a cold!!

My updates are few lately- we've been busy!! Busy doing what? ENJOYING our Little Man!!! This little boy is SO full of life, SO happy to be pain free, so loving. He plays nicely on his own, plays great with his brothers- now getting in on the wrestling and games, "asking" them to play, "joking" with them. This is a beautiful thing to watch -- and one of my favorite things as a mom....just to sit back and watch them play....watching from a distance so they don't know I'm watching (and not asking me to referee every 2 seconds) but watching them interact with one another, help one another out, big boys caring for the little boys. It is what fills my tank....so, so, so many months going on "E" - now my cup runneth over and I find myself wondering if I can really believe it, really trust it. When that lingering thought tries to come in, I just dive into some hugs and kisses from Little Man. It's as if he knows- he smoothers me with kisses and comes running up to me and throws his arms around my neck- squeezing in a hug! I can't get enough of that.

His brothers are starting to trust it more too- this is the longest we have seen a baseline, a pain-free and happy/content little boy since he was 2mo. old. They now fight over who gets to be his buddy for the day, who gets to show him this new thing, or teach him that new thing. It warms my heart beyond what words can express. When I can't express the words and I worry about the memories escaping with time, I photograph moments. Here are a few....backyard swing time, popsicles (hempsicles for little man), a trip to the local zoo, and a Eagle attraction center. We've been busy- we've been "normal" family of young children.

Honeymoon period

This is what Little Man's daddy and I have coined the time period when things look like they are going to work out and finally start to improve and "coast" on this rollar coaster ride for awhile.....right before we hit the wall and fall off the bridge.


Please,please,please dear Lord - I PRAY this is not one of those times. Little Man has been doing SO wonderfully the past few days....I lack the adquate words to describe the giddiness that I am having a more and more difficult time keeping a lid on! My little man is SO happy....could this be? Could we have finally found something to help him finally thrive? I can barely contain the anticipation of the next days- watching him be so happy, hoping for things to stay this way (and continue to get better so we can begin food trials).

Little man had a endoscopy in March, he just had the repeat one 2weeks ago. The first endoscopy, the inflammation wasn't quite visable but the biopsy's told the story...."non-specific inflammation", they kept saying. Now, on the re-scope- the inflammation was "patchy" and visable on scope (so yes, worse) and confirmed as worse on biopsy.

Corn fail has sensitized his system and it is almost so identical to when we started experimenting with supplemental formula bottles and I was still nursing- he was then reacting to trace proteins in my diet and we couldn't figure out why he wasn't gaining weight...and he just kept growing in his sensitivities....

Certainly makes a lot of sense to me, now to just move away from those trace proteins again.....they weren't ok in my breastmilk, why would they be ok in a formula? Clearly, it's not (for my guy who is sensitve to corn)....just have to clarify as kiddo's who are ok with corn thrive so well on the formula's and that is SO great but this just makes so much sense as to why our little man has been so super sensitive and so far away from a baseline for so many months. And why his scope had more inflammation after so many months on an exclusive elemental diet than before.

We re-initiated Neocate in his hemp milk formula, we began immediatly to see his inflammatory markers cascade of symptoms; we saw this plateau off - just right before we began to see blood in his stool. I keep logs of his caloric intakes (everyday since April), the past 10days since dismissal from the hospital, Little Man has been consuming an average of over 1000cal/day (he used to average around 600cal/day). He had a weight check today, he is down again. My theory of what is happening is that his system was assualted by the trace corn proteins in Neocate (once again, higher sensitivy after corn fail), it continued to assualt until it bled his intestines, now he is malabsorbing nutrients again. Time to make some changes....stay tuned....