Monday, September 28, 2009

Children's OT

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.



  1. i hope that they can come up with a good plan to get Jimmie Jim Jim to eat by mouth! We will be praying for him. What about one of those little seats? My mom and Tiff have one, I can't remember the name, Bumbo or something like that. Adam and Kendall's baby is about as big as Jimmie and he could sit in it no problem. They have little trays like a high chair too. You can get them at Wal-Mart. Maddy likes eating in her nap nanny too, you could try that!
    It was great seeing you guys, I miss you already! It sucks living so far away! Love you!!!!

  2. That's great that he likes eating off a spoon!! It's always fun (if messy) to feed new stuff to a baby. I hope you all manage to have a good time with that, and don't forget to get it on video!! =)

    We'll keep praying for a great (and quick) solution to everything! We love you all!!

    Hugs and kisses,
    Adrian and Janelle

  3. Good luck with the new OT! Sounds like she's got some good ideas! :) I will keep praying.

    Take care,

  4. Praying... I saw Jimmie at ballet yesterday- what a little sweetie!

  5. We are praying for all of you!
    One quick thought...the high chair is better than a Bumbo seat (they put babies in developmentally inappropriate positions, i.e. sitting up too soon). Sorry that I can't offer up a better solution, though. I have read this post a couple of times, and I just keep thinking..."bird by bird".
    Lots of love and prayers to all of you, and especially Jimmie Jim Jim (my husband is Jim, too).

  6. Jimmy has had to work so hard, but he seems to have an indomitable spirit! God bless Rachael and Justin as they persevere through these obstacles.

    Shannon was thrilled to see him at the studio--Jimmy is kind of a hero around our house! :)

    Denise and Shannon F.