I've been slacking! I usually update while we are heading out of Albuquerque, but I just had no energy! I still don't have energy because of this cold I have, but if I don't do it now, It may never get done.
We headed up to Albuquerque on the 4th. He had 3 feeding sessions and we finally got in with the GI. Phew. The last time he had been seen by the GI was in August!
The first feeding session did not go very well, Pace refused every single item. He would not even entertain the idea of taking a bite. When he has bad days, it makes the entire process seem like a failure, especially when he refuses foods he normally will take bites of. I offered cheese, apples, yogurt and brown sugar maple oatmeal. He wouldn't even drink the juice until right before it was time to leave. Some days, he just will not eat. If we force it, his refusal lasts even longer. Sometimes we can trick him into taking bites to get something else, but that success rate is rather low. Needless to say, Pace did not get to play basketball or ride the bike during the session. The rest of the day followed suit and all he drank for the whole day was 8 oz of apple juice, and a couple veggie straws.
Later that day was his GI appointment. The nurse weighed him fully clothed, and with a wet diaper... that really bothers me. Why weigh a child that has trouble gaining weight, fully clothed with shoes and all. Each month he gets weighed at his WIC appointment (they supply more cans of formula per month than the RX with the pharmacy would). In October 2013 just after his 2nd birthday he was weighed naked at 26.44 lbs. In February at our last appointment, he was weighed naked at 26.60 lbs. Their scale is calibrated weekly as they deal with a lot of preemie babies, and children with nutritional needs, so their scale is quite accurate. Anyway, getting back to the GI appt. This was a new GI, and the only appointment we will have with her. She ordered a couple fecal tests (which came back normal for fat absorption and no parasites) and recommended that we take out all fructose from his diet, along with his minor allergic grains (oat, wheat, rice) as well as dairy if he is consuming more than 2 servings per day. I actually don't even think that he is consuming more than 2 servings a week. She said that after eliminating them for several weeks, to slowly add things back in one at a time, to see what is making him so bloated and gassy and hopefully prevent any random vomiting. Other than that, she was stumped. She said she felt bad that she didn't have any other magical ways to help him besides eliminating fructose. Hey, it's one thing we haven't tried yet!
You may be asking yourself what will he eat? .... so far, his list is Elacare Jr formula, Neocate Splash Formula*, corn tortillas, corn pasta, strawberries, grapes, kix cereal, chicken, plain tomato sauce, veggie straws (made from potato starch), ham, and cheese.
* The Neocate Splash is an elemental formula made by a different company than Elacare Jr, but it is in a juice box form and flavored differently than the Elacare Jr. Pacen thinks it is juice. So we roll with it. The state of New Mexico won't supply the Neocate Splash through WIC, and it costs roughly $130 for 27 juice boxes of it, (After getting it OK'ed by the Doc) we get it through an online medical supply exchange and just pay for the shipping from people who get excess of it from their medical suppliers. The lady that I came into contact with about it is a mutual friend of mine here! She lives in Arizona and adopts special needs kids. Her name is Julie, and she has a heart of gold.
His next feeding session did not go well either. We had to use a lot of distraction, a lot of reminders and modeling of chewing. He ended up eating 4 cubes of turkey, and 1 bite of ritz cracker. He did drink his milk (formula) and juice really well though. He got to decorate a cape for "Super Hero Month" at Carrie Tingley Hospital. This was his last session with Valerie, we will miss her! She was great and so fun to work with.
Friday the 7th was his very last appointment at Carrie Tingley, and our last with Stefanie. Pace had some negative behaviors in the beginning, but after a quick reminder that he would get to ride the bike after he ate, he tried some bites. The bike tactic didn't work the other two days, but he finally decided it would be a good idea to ride the bike. He also isn't expected to eat much during the session since he still tires easily with chewing and that leads to choking and gagging. I can't remember what I had for him that day to eat, but something like 1 oz of yogurt, 3 cubes of turkey, 1 ritz cracker, and 4 grapes. He didn't finish all of it, but he tried and stopped the negative behavior he was previously doing. He loves riding that little bike. It wasn't the week of feeding sessions that I'd like to close with, but it is what it is.
During our last trip in Albuquerque we had dinner with Boyd, Wendy & the kids for one last hoorah while were in town. Albuquerque has been good to us for the last 16/17 months. And now we are on to bigger and better things, and excited to get to Scott!
Here is our current timeline: (all dates and events subject to change)
17 March - Packers come to pack the house & we move into TLF (temp lodging facility) for the rest of our time here in NM
18 March - Packers load the house onto the truck
19 March - Clean the house
20 March - Clean the house & turn in the keys
21-23 March - Hang out and finish all last minute out processing for Levi
24 March - Leave NM
26 March - Arrive at Scott AFB
27 March - Sign our lease for our house on base - Grandpa Greg & Grandma Reba arrive
28 March - House Hold Goods get dropped off
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