Some Eating Progress

Greetings to everyone. Thank you all for your prayers.

We were able to bring Xavier to church for prayer last week. He had hands laid on him and he was anointed with oil, and prayed over. For me, that was a huge deal (you all know what a believer I am in prayer!), and it helped clam me and allowed me to gain focus. Rebecca was also inspired by it (she pressed me to get Xavier in for prayer as soon as we could). We tried to get Xavier to church sooner for prayer, but for various reasons couldn't until last Wednesday.

In the same timing, we got a referral for the first surgery. This is the surgery to insert the nasal feeding tube which bypasses Xavier's stomach and empties directly into his intestine. The doctors had also scheduled a liver biopsy, and to do the Nissan Procedure plus a series of other labs. Their thinking was, since we are already in there putting in the tube, why not get everything else.

Though we kept the referral, we told the doctors we were not going to put Xavier through this. We made it clear the Nissan Procedure was simply not going to happen, no matter what else needed to be done. Both the NG tube and the sewing of Xavier's upper stomach to his esophagus is filled with more risk than benefit. We've been doing a lot of research, and we've been observing Xavier through more educated eyes. We strongly believe the doctors have not correctly diagnosed Xavier's issues, so we are not going to allow any surgeries without significant proof of the doctors' diagnoses. There are still many, many unanswered questions for which the doctors are still silent in providing answers. What they are currently suggestion will do more harm than good, both Rebecca and I strongly think this.

Since the feeding clinic experience, we have been watching Xavier's intake very closely. In the last 14 days he has averaged about 600 calories per day, with a general trend upward and peaking at nearly 700. Just at his peaked, he got his first chest cold, which dropped his numbers back into the mid 500's the last few days. Coincidental with his cold, he cut at least one new tooth (his left upper outer incisor), so this also worked against his eating.

One of the questions (a big one we think) that needs answered is what, precisely, are the amounts Xavier needs to be eating on a daily basis. The people from the eating clinic suggested 36 ounces a day. We've run the numbers and that amount is huge! It's far beyond Xavier's capacity to hold that amount. This led to another question: if 36 ounces per day, what are they basing that amount on? A 20 pound one-year old? From our research (which we validated across several medical and government sites), it appears Xavier should be eating in the range of 760-830 calories a day. That works out to about 28 ounces a day, a far more reasonable amount for Xavier's size. Needless to write, this significant discrepancy have sent us back to the doctors for clarification, and an explanation on what they are basing their numbers on.

Through all of this, it looks like Xavier is once more taking to the bottle in a favorable way. We have had several times when he has eaten 4 oz at one time and kept it down. That, by the way, if not a miracle, is certainly something stupendous! We have not seen Xavier take 4 oz at one time in the last couple of months. We have been working with him to take increasingly larger amounts at one feeding. Our first issue is to get his stomach used to the larger amounts. Being off his feeding has let it atrophy, so it is not used to such large amounts.

We have had a couple of "divine appointments" as well. We have met several people in the last two weeks who have given us very useful information and understanding. One of the men who prayed over Xavier last week had a preemie who went through similar issues. We agreed to get together with him to learn from his experiences.

We also had a significant breakthrough that, until Xavier's cold and new tooth this past week, was getting Xavier to eat more and more every day. It was a simple thing, one we learned from a lady who runs a daycare. She got Xavier to eat 3 oz in one sitting, plus she got him to eat from a spoon with 8 confirmed swallows! We tried her bottle-feeding technique and from our first feeding using this technique, his intake increased at least 3/4 an ounce per feeding, more as the week went on. What was the technique? We swaddle Xavier! We never would have thought of this, he hates being swaddled. But, it works.

Another meeting we had was "out of the blue" in many ways. It led us to do some more research into what the doctors are telling us and added heavily to the list of questions we need the doctors to answer before we proceed with any GI tube. The benefits of the feeding tube may be overwhelmed by the problems brought on by the tube. In fact, the GI tube is likely to make things notably worse.

We are praying that

1. Xavier eat well and enough and consistently (consistently seems to be one of the real keys here); we want the diagnosis of "failure to thrive" overturned!
2. Continued wisdom and insight for us, Xavier's parents, so we make the best choices for him
3. For wisdom with the doctors and for the doctors

One of the Scriptures I've taken to speaking over Xavier every time he coughs is "By His stripes, you are healed" (Isa 53:5/1Pet 2:24).

Always, we thank you for your prayers and support. Great is our God and Father, and mighty is our Lord, Who has healed us!