I am SO thankful for our bad day on Saturday! Like really thankful. Sounds silly, I know but I try to keep things on the up and up and positive. Day like that make days like today EVEN BETTER. :-)
Today, Wyatt took in almost 20oz by mouth! Holy Moly! Praising the Lord all.day.long. Sitting here reflecting, it's just like WOW! :-)
He went down to breakfast after a little playtime outside. He drank an ounce of water before breakfast too. That's wonderful! He drank 3oz of milk and 2oz of yogurt. I did not give him any blend after his FIVE OUNCES of food for fear of losing those 5 very awesome ounces. :-)
We had a little break after breakfast and played some more outside as a reward for eating good. We base that not on how much he takes in but on following directions and not "standing off" with the person feeding him. :-) We are also hoping he associates fun with going into his little room...a little play time before and a little after! :-)
Next Wyatt had back to back to back therapy sessions. He handled them like a champ though.
At 11 he had an actual Speech Therapy session with Cammy, his therapist. This session focuses more on skill rather than volume and calories. She said he did really good in his session. She did mouth stretches. I so want to video this part because it is so super funny. :-)
She "brushes" his teeth and his tongue with one of these:
And she had him bite down on a chewy tube like this:
And of course she introduced him to two new foods, blended thin refried beans and blended potato soup.
The right after, Wyatt went to OT. He did much better not being clingy and upset. So, tomorrow I may see if she wants to not join and wait outside.
And next on the agenda was lunch time. I was a little worried he'd still be full, he did eat 2oz just half an hour ago. It makes me remember how at one point in time, he could barely tolerate ONE ounce an hour... wow. Big improvement! :-) God is good, so so good! This kid blew me out of the water and ate/drank 5.5 ounces at lunch time. Wyatt always runs out of his feeding room into my arms. Today, I was talking to someone and I don't think he saw me and his feeding tech didn't realize how fast he can be and he ran around the corner. She went after him and I followed and he had fallen down. We helped him up and I just knew in my gut that he was about to lose it... and he did. He fell right on his belly. It's always SO sad and even more frustrating to watch him work so hard to eat and drink and him to fall down of all things and vomit it all up. It broke my heart and I think everyone else who saw.
At snack Wyatt ate almost 4oz and another 3.5oz at dinner! What a champion!!!!! PTL!!!!
I also had a nice one on one meeting with out case manager. It was really good to have. We talked about the schedule Wyatt is on and hashed out all the concerns I have we concluded that what is currently available, we need to stick with what we have but as different options become available, we can talk about them.
We also spoke about James and my overall goals for Wyatt. Our #1 goal for Wyatt is for him to no longer require using his tube. We know that that will require a different type of blended diet for him but worth it to not use the tube anymore.
This month isn't our magic month to a normal eating kid. It's a step in that direction. And who knows, maybe we never have a totally normal eating little boy. We set, what we hope to be, realistic goals for Wyatt and adjust them as need be.
And with hesitation, I addressed our being asked to take down our video monitor. And to make a long story short, this issue that someone actually asked we take down due to being watched and being uncomfortable, is being addressed and we are allowed to have it and use while he is sleeping.
I also spoke with Wyatt's dietitian about how to go about keeping up his daily calorie intake. As of this morning, he was getting an ounce of our home blended diet food plus half an ounce of water after each feed. In addition to those bolus feeds, we were giving him 8 ounces of the blend at night once he falls asleep.
After talking to James about if we wanted to drop the night feed first or the bolus feeds during the day, we decided the day bolus feeds are the first to go. :-) I'm hoping that if Wyatt keeps up his doing so well and hopefully continues to do better, we can quickly ween down that night feed and then eliminate it all together!
Prayers are appreciated and thank you for keeping up with us. :-)