Some updates
Posted by: Tracey on: July 6, 2008
I haven’t updated this blog in awhile. So, here is the latest: We are gearing up for Jen’s surgery. Prior to that we were dealing with month long loose stools on her. It was torture for her and us. It started out being 1-2 times a week and then at it’s peak it was daily. It eventually got to the point where she didn’t have a normal stool in almost a month. I talked to her GI about it and we did some stool testing and started her on a probiotic. Jen thought the stool testing was pretty cool since she got to poop in a special “hat” that sat in the toilet and then Mom got to put it into containers!! The things that amaze these kids!!
We just had another visit to Boston Children’s. 
It was a 2 day visit this time. The first day involved a 3 hour test that looked for a condition called fructose malabsorption. This could have been the cause of the loose stools. She was supposed to drink this high fructose drink and then blow like this:
It was a 2 day visit this time. The first day involved a 3 hour test that looked for a condition called fructose malabsorption. This could have been the cause of the loose stools. She was supposed to drink this high fructose drink and then blow like this:
multiple times over a 3 hour period. Sounds like a long involved torture session right?!? It actually wasn’t. We had to go back every 15 minutes times 2 and then every 30 min for the rest of the time so it actually went quite quickly. This is what we spent our time doing in between:
And she thought blowing into it was pretty cool so that helped a ton. I don’t have the official results but I’m pretty sure it was negative which is wonderful because if it was positive it would involve a radical diet change and there would be little the poor girl would be able to eat anymore.
This test was to rule out one possible reason for the loose stools though. Now we are pretty sure it was something called toddler’s diarrhea. This is caused by too much juice in a day. I was pretty much giving her anything she wanted to drink as we risk dehydration with her due to her liquids having to be honey thick consistency and her not liking that. When we first started this consistency she was close to having to be hospitalized for IV fluids since she wouldn’t drink it. Now she’s pretty good about it though. So, we’ve cut back on the amount of juice and she drinks it way more watered down and her stools have normalized.
The rest of the visit was to handle all her pre-op stuff. It is all taken care of now and she is ready from a medical standpoint for the surgery. (See the original post on her story for what her surgery is)
While we were up there we checked out Boston Common too. Jen had a good time watching all the dogs play with each other and immediately made a friend in this woman named Annie whose lap she spent 45 min in!! Here is a pic of her there:
The last 2 are pics of her being swallowed up by the bed in the hotel!! And one of her playing in the suitcase when I was packing to get ready to go. Next up is her surgery which will be on July 14.
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Jennifer in her PICU room right after her laryngeal cleft repair
Playing once she was transfered to a regular medical floor
Jennifer’s type 1 laryngeal cleft
Just after waking up from the laryngeal cleft repair
Doing the fructose intolerance test
Getting ready to do a swallow study to check for aspiration
Samuel having an echocardiogram (US of the heart)
Samuel’s heart
Jennifer showing off her IV
Where are you visiting from???
Samuel having an echocardiogram
Echo picture of Samuel’s heart
Jennifer showing off her IV
July 7, 2008 at 3:21 pm
I’m glad to see an update, Tracey, and that you pretty much now know why the diarrhea for the month. We’re past the toddler years, but you probably remember me talking about that happening here for the month of May.
Can hardly wait to see those pictures!