The title says it all. Jennifer is my hero in so many ways. She has been through so much in her short life but she just rolls with the punches and moves on. Now, don’t get me wrong, she isn’t all peaches and cream or anything. She is a typical toddler/almost preschooler. She’s stubborn and boy does she have a temper!!! But despite all that, at the same time she just blows me away.
When we first found out at 2 that she was aspirating and that she had to go on nectar thick liquids she didn’t bat an eyelash. I tried the stuff and man is it nasty. Then a few months after she turned 2 we found out about the milk and soy intolerance and had to radically change her diet. Her past favorites, like goldfish crackers for example, were no longer allowed. She only half batted an eyelash at that one. Then we had to go up to honey consistency on her liquids and she gave us trouble at first but then after a week got used to it and acted like it was no big deal. Have you ever tried to drink something as thick as honey??? Can you even consider something as thick as honey still a liquid beverage???
We won’t even talk about her multiple hospitalizations, procedures and recent surgery here as they are in other posts except to say that she has always handled them like a champ. Including going back to her recent surgery in my arms while singing to the anesthesiologist!!!
Her most recent intolerance is to fructose, AKA sugar, resulting in another diet change. At first it was easily managed by just taking juice out of her diet (yup, you guessed it, didn’t bat an eyelash!!) but she then started having symptoms again. So, onto another source of sugar out of her diet…….fruit snacks. This is a kid who begs daily for some fruit snacks. We actually used 1 fruit snack (not 1 package) for her for potty training too as she couldn’t have the mini m n m’s. She’s been potty trained for about 8 months now but still begs for that fruit snack every time she pees!! You can imagine how I thought it would go when I told her no more fruit snacks. But the little trooper she is, I just told her that they were hurting her tummy now and that she shouldn’t have them anymore and she proudly announced to Daddy that she was having no more fruit snacks “because they hurt my tummy”!!!! She really is my hero. She’s just amazing. No tears, no fuss, no nothing.
And on the occasion that she does give me a hard time about something she isn’t allowed to have then I just ask her “what will happen if you eat that??” and she will tell me “it will hurt my tummy” so then I ask her “should you have it then?” and she’ll say “No” and move on.
On to the thickener updates…..I make her 24oz of VERY watered down juice at a time (20oz water to 4oz juice) and use 8 tbsps of thickener in it to make it honey consistency. Just after her surgery we had to go up to 9 tbsps as she was coughing a bit due to the changes in her throat anatomy. But after a week we were able to go back to the 8. After unsuccessfully trying to go to 7 I went to 7 tbsp + 1/2 tsp and she did that successfully for 5 days. Yesterday we moved down to just 7 tbsp and she did great with it.
We are supposed to thin a bit more each 4-5 days until we get to either her next swallow study which is Oct 9 or until we get to regular thin liquids and then have the swallow study. So far, so good. Dr. Rahbar did say she’d have some trouble here and there (like we did at first try when I tried to thin too much) but the hope is to be on regular liquids by the swallow study. 70% of kids who have the cleft repair surgery are. I’m praying we are in that 70%!!