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Update

Tuesday, August 2, 2011

Where are the days going?  They seem to be slipping by me so much faster now.  Is it because we're rolling into the new school year within weeks?  Or is it because we've scheduled our life right down to the hour?  Either way, it feels a bit like life is coming and going incredibly quickly these days.

Bennett had a weight check today.  He has gained one pound since his last check two weeks ago.  Today, he was tipping the scales at 27 pounds, 8 ounces.  I'm happy to see that he's continuing to gain even though he's starting to show alot of refusals during his feedings.

I spoke with our contact at Our Children's House at Baylor to better understand what we should do next with regards to Bennett's new feeding refusals.  We've seemed to have reached a plateau with Bennett and need to move through it.  Bennett seems to be "pocketing" food more often and refusing to swallow.  So, we're trying to figure out how to help him work through this. 

I can feel really lost when Bennett's feeds don't go well.  I feel like I'm supposed to be in control of his eating so when the feedings start going poorly, I feel like I've lost control.  But it helps to speak with our experts at Baylor.  They are wonderful at helping me think through solutions and ways to gain more traction with our efforts.  We have put so much time and energy into help Bennett wean from the g-tube.  It feels really disappointing to see him refusing our efforts.  However, I'm hoping a few changes on his menu and a few changes with his food textures will make the difference.  We shall see.

We have a CF Clinic appointment next week.  It will be our first at Children's.  I'm a bit nervous about it. We will test Bennett for any lung infections (always nerve-racking).  And, we will reconsider his current medications.  I know we will begin two medications at this appointment so new changes are about to come our way. 

I'm trying to think about other things in life outside of feedings and Cystic Fibrosis treatments.  Tonight, I was excited to teach Oliver how to make cookies from scratch.  It wasn't until I got to the end of the recipe that I realized something went wrong.  I couldn't find the directions on how long to cook the cookies.  Brian, hearing my concern over not knowing how to cook the cookies, asked me what recipe I had looked up online.  I explained it was a Chocolate Chip Cookie Dough recipe.  I had found it on FamilyFun Magazine's website.  "Did I not get a reliable recipe??" I wondered.  Brian asked me to go through the recipe and tell him the ingredients.  It was clear something was wrong.  There were no eggs or baking soda in the recipe.  It was then that Brian reminded me that I had found a recipe for Chocolate Chip Cookie Dough, not Chocolate Chip Cookies.  Dough?  Doh!  Oh well, Oliver cooked Chocolate Chip Cookies/Dough twice tonight, getting lots of licks in there!  So, it didn't turn out all that bad.

2 Responses to “Update”

  1. :) We have an appointment the week right after yours. I hope everything comes out ok. Azer started out with a drippy nose a few days ago, and it's progressed into a junky cough. With the Stethoscope, he sounds a little noisy. I'm hoping maybe it has something to do with the heat ... or allergies .. something besides bacteria .. you know what I mean.

    It's so great to hear Bennett is gaining weight!! You are doing such an awesome job. You really are the best mom in the whole world to those sweet little boys.

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  2. Hi, you have a precious family! I came across your blog last night while I was looking for people who had been in the inpatient feeding program at OCH. My son is 3 1/2 and has severe eating issues due to sensory problems...we have tried other places, without success. We finally had our evaluation at OCH, two days ago. The waiting list is 6 months long, but they felt he was critical enough that we check in Aug. 29th. Unlike you, we have not had any hospitalizations before. With all my heart and mind I feel this is the right program for my son. But the two of us staying in a hospital room for a month, is a little overwhelming to me right now. We live a couple hours away, but do just have the one child. I would love to be able to email you to ask you questions about your stay - even simple things like what size rug should we buy :)

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