Hi All,
Well it's been a little over a month since I last brought you all up to speed so here goes.
First, let's talk about "Operation Starvation Dehydration". At our first weigh-in of the new year, I was down to 21.67lb and the doctor was getting concerned that I wasn't growing. In addition, I wasn't eating as much and being tube fed more than half my intake on most days. Since we weren't making any progress in either improved weight or improved oral feeds, it was time for more drastic measures. Doctor Rosner's last ditch orders to kick start my progression were "Stop feeding him..." What? What was that? "... through the tube." <<insert ominous music>>
Well, you read that right, we've been on operation starvation dehydration since Monday January 28th and so far here's a summary of the results:
It started out as expected, I didn't eat very much and drank almost nothing. I slept a little more than usual but otherwise I was my normal self. The next few days showed glimmers of progress, I started to eat some more solids, I was eating minigo yogurts again, I even drank my morning sippy without argument. Overall I was still only taking about 10-12 oz of formula (half of what I should have). I was eating the same solid foods, but more volume.
By the end of the first week my mood had changed to grumpy as my tummy was growling and I didn't know how to stop it from feeling so painy. The plan was to meet with Dr. Rosner again on Thursday to check my weight, do some blood work and generally discuss how things were going. Thursday Morning came and I was going to be ready for it. I held back my poop, and began the day with an 8oz sippy of formula! As many of you know, I am accustomed to 6 oz bottles and usually won't take the whole thing. But 8! 8 full ozs! That's awesome!
When my bum hit the scale, we watched and waited. My weight came in at 22.33lbs! AN INCREASE! I was in the midst of operation starvation and didn't lose weight! booyeah!
Dr. Rosner threw open the door and exclaimed "What are you feeding him? Lead?" She was happy and as surprised as we were and concluded that the plan should remain unchanged. As such, we're still on the path of no food if doesn't go down the old pie hole. I'm still eating plenty of my crackers and cheese, not nearly enough fluids but definitely on a positive road! Will update you again soon!
In other news, let me take a minute to update you on our goals from last time:
Physiotherapy:
Since my walking skills have continued to make leaps forward, my physio appointments have been pushed off to every 6 weeks instead of every 2 weeks. I still can't squat to play but I can stand up and sit down with the help of a piece of furniture.
Texture Therapy:
Well I haven't had any additional formal therapy in this area however, mommy and daddy play macaronis with me on the floor in the living room on a regular basis.
Speech:
No news yet on the "Target Words" classes for my folks but I have started to blurt out the occasional "Aye" which means hi! My sign language has increased to include up to 15 signs now.
Feeding:
Lynn (my dietician) read my food journal memoirs and said that it was a good start. Onward and upward, the plan is still Eat Eat Eat and to increase my liquids. She had suggested to get me to eat fruit. My parents laughed as my fruit interaction has been to scream and cry when it is near me.
School:
The goals for school of accepting foods remain the same and with the help of the girls at daycare writing down my food intake, I've been making strides there too! I even eat a yogurt while I'm there, although I've declined on the formula more often than not.
No word yet on the release date for the "average height and small waist" niche clothing line yet, but my mommy did buy me 9 month old pants and they don't fall off me so much.
All the best my friends, we'll talk again soon!
-Ethan
P.S. I ate a piece of popcorn with buffalo wing seasoning on it and didn't spit it out, how cool is that!
No comments:
Post a Comment