Tuesday, December 13, 2016

Feeding Update


No. That can't be right. She's looking at me. She knows this is too low. 

-Let's do it over again.
-We just had it calibrated.
-Well, that can't be right. We were just at GI and he weighs 37 pounds. Bud, step back on the scale; real quick.


I felt the tears. Here they come and once they start they don't stop. 

She offers to try a different scale, so Isaac puts on his shoes slowly, and deliberately because his socks have to be just right (double checked and rechecked) before he puts the shoe on and then the strap has to cross the velcro in just the right way. After a couple minutes of watching the shoe donning process I say cheerily, "Good job, Bud!" We've worked hard for this independence. Then we march down the hall to another scale. 


She gives me the, "I told you so" look. I ignore her. 

"Okay, Bud. Time to put those shoes back on!" And we walk around the corner to meet with the rest of the team. By this point tears are dripping down my face. I tell them I'm about to have a meltdown, so they should get ready because this is going to be a big one. The behavioral psychologist tells me we'll come up with a plan. I tell them that I don't want to hear another plan, and I drove two hours just so that I could sit there and have three people analyze everything I'm doing and question why my son is suddenly down almost two pounds! It's dramatic, I know. But I've worked for every single ounce this child has gained over the last five and a half years. 

Isaac has had some vomiting lately, so we're attributing the weight loss to that. Part of me refuses to believe the number on the scale.

Other than the initial upset, the appointment went well. We have some new ideas for his outpatient OT who is focusing on teaching Isaac to chew. We're also working on a plan toward more independence during his meals, and trying to figure out new ways I can threaten him, I mean, encourage him to finish his drinks on his own. During our family game night on Friday, I meant to tell Isabella it was her turn and instead said, "two drinks!" We all burst out laughing. Some days I feel like my thoughts do not go beyond telling Isaac to take two drinks. 

We're also looking ahead to summer and considering another inpatient stay to push Isaac to the next level of eating and managing food in his mouth. He has made significant progress but only eats pureed food blended to a very specific consistency. This is fabulous, and I am happy to remain in this place but I also want to keep moving Isaac forward to more age appropriate food intake. Every time we go back to The Children's Institute in Pittsburgh, he asks if we're going to get a room and walks around like he owns the place. I'm thankful he has such a positive association with the hospital and I know if we were inpatient again he would take it all in stride.

We continue to maintain The Institute's meal schedule at home. He has five meals each day. Two meals consist of his eight ounce drink and the other three consist of six ounces of puree and his eight ounce drink. He has thirty minutes to complete the meal, and we do use the iPad for motivation. If it weren't for the iPad (and of course our inpatient stay), he would still be tube fed. Isaac does not understand his own hunger though he has started to express thirst, so I think this is a good sign, and he has no inherent desire to eat. He doesn't even really care what things taste like, just that they are perfectly pureed, so you'd better believe I'm amazing with a blender!

That is all for now. If you have any questions about inpatient feeding programs or The Children's Institute and their philosophy, do not hesitate to ask.


1 comment:

  1. Keep the faith. You have both come so far. I know you can make it through this hurdle too. You can do all things through Christ who strengthens you.