So Rachael took Jimmie to an Occupational Therapist at Children's Mercy today. The OT thought Jimmie was doing a good job eating rice cereal from a spoon. She said he had good tongue movement and coordination. She does however, feel that he has an aversion to the nipple.
She thinks when he went off the oxygen it was harder for him to breathe while he ate which was scary for him. Jimmie does seem sensitive to that. Rachael can hardly put a shirt over his head because he freaks out. It must have been traumatizing to be born when he was and not be able to breathe.
So eating became a struggle and he developed reflux which hurt and also caused him to have big scary pukes during which his heart would slow briefly and he would micro-aspirate. After which he sometimes had some small retractions in his chest. That signifies a struggle to breathe.
Now he associates all of that with the nipple. So the OT is recommending going to the sippy cup for good. She also is having them thicken his liquid and wants Rachael to introduce some strong flavors to kind of shock him into enjoying drinking as something different.
Rachael will be doing these things. The OT also thinks Jimmie's neck and head control and his back is developmentally more like a 6 month old and that Rachael should feed him sitting in a high chair. Rachael will have to figure out how to prop him up a bit because he's still so small. He is 11 1/2 pounds.
Unfortunately the OT does think it will be a while before Jimmie will be taking all of his nutrition by mouth. She doesn't see the tube going away for a few more months. )-: However she was encouraging about that eventuality.
This OT will be working with him twice a month.
Keep praying for our Jimmie Jim Jim. If he could just get over this hurdle things would be almost normal. Rachael and Justin want to get rid of that tube so badly. They are having a really hard time with this process. It just seems very slow and haphazard to them. Rachael doesn't feel like anyone is really offering a straightforward plan to actively wean him from the tube. Everyone at Children's seems to refer them around to specialist after specialist. Rachael is very grateful for their expertise, but she wants someone to actively help her wean him from the tube. The OT didn't want that responsibility. The nutritionist won't encourage it because she doesn't feel comfortable. The Neonatologist after Rachael pushed them gave that plan to take him off for 48 hours, but only if he'll take 80mls by mouth every 3 hours which is completely unrealistic. She and Justin are trying hard not to get discouraged. Pray for them too.
Happy 4 month (developmental) birthday little man.