Day 14: First Clinic Appt

Today was the first time that we've actually gotten to go to the IRP clinic for the normal weekly visit. John's labs from yesterday are all good, his weight is up to 9.7 kilos that's a whopping 1.1 kilos higher than admission weight 2 weeks ago, that's 2 pounds 7 ounces in 2 weeks.

We got to meet with the feeding therapy doctor and her fellow, it was a nice conversation and basically they teach the kids to like the things that they need to eat. I must admit that I was a little incredulous when she told me that they would teach John to like drinking his Neocate formula, the doc claims that she could teach kids to drink motor oil if she wanted them too, this didn't help my incredulousness but when she compared it to teaching people to drink coffee, which to me is vile, I finally get it and am looking forward to seeing her at work. Now if she could teach me that lettuce was better tasting than say cheesecake that would be amazing!!! For the most part she won't be really working with John until after surgery.

I got to meet the head surgeon today, of the 35 STEP procedures that she's done there has only been 2 cases with complications, both completely resolved and only 1 of those needed further surgery to resolve it. She did say that if it was easily gotten to that she would remove John's gallbladder at the same time that she did the STEP procedure as short gut kids have notorious gall stone issues and it's better to just get it over with now then wait and have to cut him open again later. We talked about John's stomach muscle issues and she had already been giving some thought to a few options there and she will be checking records to be on top of his clotting issues. I was very impressed with the whole group, it's also nice to know that I can call them at any time.

I did get to ask the surgeon the one question that I get asked most: How long will we be here? Followed by the next most asked question: When will John be ready for surgery? The answer to the first was at least 3 months, but she doesn't think we'll be here for the whole year, of course anything can happen between now and then. The second answer was when he doesn't look like all skinny arms and legs. What she explained is while he may have the reserves now to endure the surgery, he wouldn't have the reserves to recover from any complications and it's better to be prepared for the complications and not need the reserves than the other way around. So there again, when it all comes down to it the answer to both questions is really that only God knows.

All in all that's not really that hard of an answer to live with right now. We came here with in mind that we will be here every day of the year and are willing to stay longer if it means that John has a better chance at life, any day shy of a year will just be a present.

The one thing that we did find out at clinic that will make life easier between now and surgery is that it doesn't really matter much what he eats. They are really not counting on his gut doing much to help him gain weight, so a little sugar within reason isn't going to hurt him so long as it doesn't cause him to go into diarrhea or anything. He was thrilled to be eating Frosted Flakes for lunch. The hard part is that I am supposed to make him lay off the ice some. Silly kid, he eats ice like other people chain smoke or drink and lately has been chomping about 64 ounces a day, that's a lot of ice no matter what size you are and for someone John's size it's a ton. So we're working on limiting the ice without totally ticking off the toddler, so far today it's been successful, we'll see how this evening goes.