Thursday, May 17, 2012

Feeding appt follow up

So the good and bad news is that Jax weighed in about the same at 24lbs. Actually he was an ounce less, but they consider that "maintaning".

They see the weigh-in before coming into the room to meet with us. Yesterday's meeting was a check-in with the feeding psychologist and dietician to review weight and behavior. They were happy to hear he had a cold to explain the lack of weight gain, and that he did HOLD his weight. He still hasn't had any tube feedings during the day since leaving the clinic, so they were very pleased to hear he was able to get through an illness this way. So that was the good news.

The bad news is that he only weighs 24lbs. So while it's great he maintained his weight during illness without extra use of his tube, it's not so great when his weight is still this low. They will be happy to see him maintain his weight during illness when his weight is at a more acceptable place. So we still need to play catch up.

Our plan is to add a few more teaspoons of Carnation Instant Powder to his milk mixture, and for him to drink that instead of water when coming in from playing outside and thirsty. Which needs to be his "snack" since they don't want him screwing up his appetite for meals/snacks. Also, if he's resisitent to his puree food, we just push more milk since that is what has the most calories, protein, vitamins and fat.

Instead of meeting in 4 weeks for our next checkup, we're going a full 6 weeks when the full Feeding/GI team is scheduled to follow up. In these 6 weeks we're hoping for some good gaining and a further plan of action.

The dietician said she wasn't concerned with Jax's weight from appointment-to-appointment so much as his overall weight issues for the past 2.5 years (he weighed only a pound less at 15 months old). I got all nervous when she said that and felt myself getting flushed. I asked, "do you think something else is wrong with him?", and she replied that she knows Jax gained a half pound when not sick, and then maintained when sick, so far now, she's focusing on that. So we are REALLY going to work on Jax gaining weight without the use of his tube during the day.

Jax had his blood drawn for the Immunologist that the pediatrician is consulting for all the asthma and pneumonia issues Jax had over the winter, so I'll be waiting to hear from her with whatever those results show.

I also discussed our plans for a big toy donation to the Feeding clinic. This summer we're throwing a large carnival across our and our neighbor's lawn (with the generous sponsorship of some friends and their company's equipment) for the boy's birthday and a big celebration of Jax's progress. Instead of birthday presents, we're running a toy drive in Jax's name for kids going through the Intensive Inpatient Feeding program. The doctors were almost in tears when I told them our plans - there are so many children who have nothing when staying for this program and often don't even have their parents with them throughout the stay. I'm in the middle of setting it all up to run online up until the party, so stay tuned for that coming next week!

Oh, and to leave this post on a funny. I couldn't figure out for the life of me why our garage door was having problems closing for the past 3 days and now suddenly stopped working. Jason found a bunch of wire chewed through from our visitor the other night. That raccoon really trashed the place!
::sigh:: Silly critter.


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