Good things don't always last forever, but I can say that we enjoyed it while it lasted. For a few months, Gabriel had been coasting on a good rhythm. We had 20 solid foods that he could enjoy, we had a regimen (long, expensive and difficult none the less) but a regimen or medications to keep him under control, a freezer full of safe meals prepared in advance, a home school system to keep him up on his curriculum, and routine that seemed to be working for a while. It almost, for a moment, began to feel like we were normal.
3 and a half months ago,Gabriel reacted again. He hasn't had a new food in over a year, that was for sure. It was very clear that our luck of enjoying the variety of 20 foods was diminishing. I prayed it wasn't apples. I don't know how much Gabriel even likes apples, but it was the point. Don't you love to eat out even when you don't fall in love with the food? Apple juice was for sale at the McDonald's or Starbucks drive through, and pre-packages apple slices were for sale at most fast food restaurants these days. Apples was Gabriel's eating out luxury.
We started an intense elimination diet, and Gabriel ate only one food for an entire week. I mushed the rice into every shape I could imagine, Fun tastes better, right? With the help of our new Gastro Specialist from Oakland Children's Hospital, Gabriel started drinking Neocate E 028 Splash. It is an amino acid based formula with high enough calories to maintain a healthy body, with necessary vitamins, and free of all "food" or allergens. It tastes like grape flavored vomit, and costs nearly as much as my mortgage, but it keeps him healthy.
I sent the next few weeks thinking up creative ways to drink formula. Upsidedown. IN a cup, with a straw. Gabriel's uncles Kyle and Tim have always been an important part of his life, and as healthy men who workout often they both drink protein shakes, or, "muscle drinks." Formula earned its way into becoming Gabriel's muscle drink. The first time, he chugged an entire serving with Tim-- IN less then 3 minutes, I teared up, and felt an incredible sense of relief. When you need formula to thrive, and you don't drink it, it's not good. The stupidest, manliest, chugging and burping contests I've ever witnessed might have been one of my proudest moments. I smiled because I knew that it would be OK. And I told myself that if driving 44 miles to my sisters house to see Uncle Tim chug with him every day made that difference, I would. A few weeks later we SKYPEd uncle Kyle, and drank muscle juice with him, and imagined Gabriel's muscles growing so big they ripped his shirt like Hulk as he drank it.
Gabriel's test with Apples failed. So did beef, berries and lemon. 4 out of 8 foods have been successful, and I am incredibly thankful that we have Gabriel's muscle drink to make up the difference.
There are only 13 states in the US that require formula- or medical food to be covered by insurance. California is not one of them. There are many times when I say that "it takes a village," and in this instance, I cannot be more thankful for my village, our village, who has helped us fill our fridge with enough formula to help Gabriel get by.
For the first time since Gabriel was 2. The first time in 3 and a half years, Gabriel has gained 5 pounds.
For the last 14 weeks, every Monday I consider what new food we will try. and I always consider none. Is it worth the torture, pain, and injury to try to taste one food this week? I ask Gabriel at the beginning of each week , what will be next?
If YOU could only eat 4 foods, what would they be? What if you couldn't pick them, what if the 4 you liked didn't work?
We took a visit to the GI last week. We celebrated Gabriel's weight gain, and crossed our fingers for more good news to come. I left the doctors in high spirits. Considering how the past few months have panned out, a reward like this makes it all so very worth it. We "cheers-ed" his formula to my coffee cup, and celebrated on our long drive home.
Voicemail from the doctor. Concerns with Gabriel's X Ray. Good news gone. Gabriel's x ray showed "copious amounts of stool impacted throughout the colon" in the doctors words. How much of his 5 pound gain was glued to the walls of his intestines? How much pain must he be in? We started Gabriel on a laxative cleanse last week, in hopes that we can avoid surgical intervention.
We saw a nutritionist this week. She was able to share some vitamins and minerals that Gabriel's limited formula and 4 food diet was lacking, but still not quite sure how to supplement them in safely. She said something that I've never heard before. I told her that Gabriel doesn't want to eat, I beg him all day, and he is simply not interested. Food is necessary. Our bodies are fed by food. That is how we breathe, move, grow, and thrive. Food is our fuel. Humans were created with sharp teeth, upright stature, and eyes in the front, because we are intended to eat. Not eating is not an option. And then the nutritionist told me; Gabriel, he drinks formula. For Gabriel, Eating is recreational.
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