Today marks EIGHT MONTHS since KayTar's last episode.
(knock on wood)
It is amazing, miraculous, wonderful. They used to torment her every TWO WEEKS. She would have had 16 in this time frame, instead she has had zero. We never thought they would stop.
I still think that the trigger is nutritional/metabolic in nature, that something isn't functioning quite right in the intricate processes of catabolism and anabolism, and that her steady intake of Pediasure is responsible for many of the positive changes we've seen in her health and development, including the decrease in episodes. The last time she was very sick, we took her to the hospital to correct her hypoglycemia and fluid imbalance sooner than we have in the past and I think that kept her from having an episode in a situation when she typically would have. Regardless of the reasons, I'm just glad they have been absent for so long and hope they continue to stay far away from our girl.
This year it is easy to get all of her Pediasures in. Every morning she gets 4 ounces of Pediasure via her g-tube before school, then we send her to school with 8 ounces in a sippy cup. She drinks it during breakfast and snack time at school and when she gets home, she finishes whatever is left and I make her a second cup. We try to get in one more in the evening. Usually by bedtime she has had 2.5-3.5 cans of Pediasure each day, along with food. Next year, in full day Kinder, we aren't sure how we will accomplish the same level of intake. It takes MANY, MANY reminders to get her to drink her Pediasure. If things are busy, she gets distracted. We tube feed her when she doesn't feel like drinking it by mouth. Next year in Kindergarten, she will be busy all the time and be in school full day and it will be a different ballgame. We don't know if she will need to go to the nurse for a full tube feeding at midday or if we need to invest in a pump for her to wear during the day to give her steady amounts of Pediasure throughout the day. We'll figure it out, I'm sure.
We're just glad to know exactly how important it is to her overall well-being, and thankful for her g-tube and the ability it gives us to ensure that she gets what she needs every day. Most of all, we're thankful for EIGHT whole months of peace for our sweet girl...she sure deserves it.