Late posting this but all went well with Jennifer’s surgery. She had her laryngeal cleft repair done at Children’s Hospital Boston on July 14th. It couldn’t have gone better. She spent two nights in the hospital there. No complications or setbacks. Thank the Lord for that!! For the entire medical story click on her caringbridge site link in the sidebar.
She has already had her post-op appointments too. We are to start weaning her thickness of her fluids around the beginning of August. Then her next swallow study will be in early October. Wish us luck with the weaning!
The other bit of news that we have received is that she is possibly fructose intolerant. She had been having loose stools, bloating and gas for awhile and went for a fructose breath test which was abnormal. They aren’t sure if the thickener she has to have in all fluids to not aspirate them played any role in the abnormal results though. For now we treat her as if she is fructose intolerant and keep sugar out of her diet as much as possible and then the GI doc wants to repeat the test in a few months once she no longer needs thickened fluids.
My poor girl. Now add sugar to the things we have to limit along with no milk and soy. Uggh!!! Though at least with the sugar it is a limit rather than a total elimination like the milk and soy. She seems to at least have it pretty mild as taking all juice out of her diet seems to have helped a ton.
I think that’s the updates for now. I’ll try and update more often.
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:
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.