Well.......

After spending the day at Cook's on that Monday that feels so long ago, I was no closer to an answer, but I did have a few "a-ha, so that's how y'all do it" moments. We showed up for our upper GI fasted & ready to go. After a solid weekend of me trying to convince Little Man that Elecare was not so bad & him refusing everything I hid it in, he was very suspicious of the bottle of white stuff that they wanted him to drink 6 OUNCES of- I almost laughed.  I knew he wasn't going to have any of it. I was able to remember my NICU feeding lessons & was able to get 2 ounces into him before they got crunched on time & we had to do the test. Capt. Chaos & I waited outside in the hallway. When the test was done the radiologist said that it went fine, he did drink enough of the barium stuff & they got a good picture of it because.... his stomach emptied so fast, he said that what ever goes into his stomach leaves it very fast. Maybe this is why he's having problems? I thanked him (he was a real nice older guy) & collected out stuff & headed off to neurosurgery since we still had oh about 4 hours till we needed to be in the lab for the rest of the tests.

I thought it would be a good idea & now that I know I am super niave I will go about things alot differently if I am ever in this position again. You see, Little Man still has his original shunt. In hydro babies its very important that shunt failure or infection is ruled out before you look at anything else. Little Man was exhibiting several of the signs, but those signs also point to belly troubles. A little part of me knew it was his belly that was bothering him but I had been drilled in the NICU that I had to keep an eye on that shunt & if anything happened I should have it looked at. So I went there & asked if any neurosurgeon was around, or any of our NS's nurses. Luckily, the nurse who knows us best was there, but whne I asked about getting his shunt checked (they can "tap" it with a needle to test it I've been told) She said that since no dr. was there (some conference? Other clinics?) if I really wanted to get it looked at I was to go to the ER.  UGH! I did NOT want to hear that- but now, loking back, it makes sense. I just did'nt want to camp out in the ER with my perfectly healthy 3 yr. old & my "maybe" healthy toddler (who does'nt toddle) I also did'nt want a new, potentially random doctor who did not know Little Man calling the shots. I guess I'm a snob. I wanted his dr!

So, I declined, & went up to Labs to see if they could take me a little early & to apologize that he hadn't pooped yet so we couldn't do a stool test:( They would have to do what they could with his sweat & his blood.

So from the Friday of his GI appointment to Tuesday Little Man was so out of sorts & NOT eating. I had our ECI dietician come out & see him, I had our ECI co-ordinator come out & see him. I took him to the pediatrician & told him to "Find Something" that was wrong with him that we didn't already know. p.s. he's healthy despite being "failure to thrive" I got a student dr visit before our pedi came in & then I got a lecture on vaccines after it was discovered that he is behind on his shots. I argued that he gets his flu shots but I'm delaying everything else because he is delayed. It makes sense to me & I did'nt care at that point who thought I was crazy. I left several dramatic messages on several people's voice mails. I had the neurosurgery department in a tizzy. In between visits, phone calls & tiraids I reaserched everything that had to do with failure to thrive, poor eating, fast stomachs & food allergies. I came to the conclusion that my Little Man has reflux. Signs of it? Poor eating, not eating even though I KNOW he's hungry, food allergies (he's got them) then he gets "unusual"- a constant dry cough, congestion even though his lungs are clear, hiccups, trouble drinking liquids, a constant grimace. Hmmmmm..... I called my dietician and pitched her my idea. We took the soymilk out of his diet, added rice milk, removed gluten (again!!!!) and with the GI's blessing, gave him a TUMS.

I had a new kid. I believe that 30 minutes after he had the TUMS, the heavens opened up & angels sang. Little Man ate. And ate and ate. He slept through the night & woke up happy & ate some more. This whole experience peeled 2 pounds off him that he could not afford to lose- he was so weak his left eye got "lazy", its only in the past day that he's strong enough to focus 2 eyes at the same time but I have him back. My poor baby. Hopefully now, we can get him better reflux meds, but Tums can be used as a calcium supplement & it tastes better that what we were using.

Does it answer all my questions? NOPE! His sweat teat came back inconclusive to anything. His bloodwork revealed nothing spectacular things were still in the relm of "normal". I have lost a little bit of faith in this GI doc though- she said his allergy tests came back negetive for dairy & borderline for celiac disease. I can buy the celiac disease, but for as long as I can remember as soon as he has anything with dairy in it, he pukes it up & turns bright red. That to me says "allergy allert!"

We have a long way to go. As of tonite, he is 14 lbs. 15 1/2 lbs. is the magic weight where he is able to bear weight on his legs & arms of his own will. It's like the desire to move meets the ability to move & he does amazing (to me at least!) things.

Dang! He's Soooooo Cute!!!