Tuesday, June 16, 2009

Feeding Team

I want ALL of Randy's doctors to buy the same scale and calibrate them the same and measure his length the same!

Whoo; I feel better now. Randy had his follow up with the feeding team today. This was a long appointment where they want to see him eat and he is evaluated by the nutritionist, OT, speech therapist, nurse, and GI doc. His last appointment was in February. He grew more than two inches and gained 31 ounces. His current stats are:

Weight: 18 lbs 10 oz
Length: 29 inches
Head circumference: 43.6 cm

They were not pleased with the amount of formula that he is taking in. He is drinking 8-10 oz per day, and I sneak another 3 oz in with his cereal. They want to change him to a "toddler" formula once his allergy testing is complete. It really is more like a nutritional supplement. The nutritionist wants to try Pediasure (if no milk allergy/sensitivity) or Elecare Vanilla (if there is a problem with milk). Both of these are either 30 cal/oz or can be mixed to that. His current formula is 20 cal/oz.

I also learned that an ENT is part of the feeding team. He was called in because of the fluid on Randy's ear, the failed hearing tests, the lack of interest in bottle, and the summer ear infection. He was not in agreement with the "wait and see" approach. He felt that we had waited long enough and it bothered him that Randy had an ear infection in the summer. He says that is not a good sign about the fluid build up. He wants to proceed with tubes. He does not want to jeopardize his speech development, and he feels that the feeling in his ears could be jeopardizing his fluid intake. He was an amazing ENT. He took a "holistic" approach and talked about how many of these small issues were related and the larger implication, mainly his growth and development.

He consulted with the GI (who usually comes in, but sent the ENT instead) about ruling out any medical reasons for Randy not wanting his bottle. We know that some of it is related to solids, but he wants to make sure that his anatomy is working properly and that we are adequately managing his reflux. Randy will get a video swallow study and an EGD. He will have to be sedated for the EGD, so the tubes will be put in at the same time (that was the selling point for me).

I left the two hour appointment with my head swimming and wondering if the pendulum had swung the other way and we were moving too fast. But my gut is saying to go ahead with the tubes and the EGD. I have researched them and know that even if they were unnecessary, they will not bring him fatal harm and they will fall out in 1-2 years. I cannot risk my son missing any more months of clear hearing. He has enough hurdles to climb without me not removing one that I can. I love him way too much to know do all I can for him.


  1. I can't believe your medicaid is ending at the end of June. That's crazy. Can your case manager help?

    You know, one of my son's had lots of ear infections. Once we took milk products away, the ear infections went away. We got tubes and still had infections until the milk went away. I fully expected the ear infections to be gone after tubes, but they weren't. The milk allergy is supposed to be an easy test. It's a very common allergy. I hope they can figure out the ear infections soon.

    He looks so good - what a cutie!

  2. Liam doesn't get constipated on all of his additives. With his delayed emptying he gets the erythromycin and then miralax helps keep it soft. He usually poops two- three times a day.