It’s been 3 months to the day since I posted, a busy last 3 months! I’ve been suffering from blog-aversion, but I’m going to try to give it a go.
River started off the summer with a new attempt at weaning. After leaving the last GI appointment we went ahead with taking away all tube feedings. We enjoyed a road trip with Grandma and headed to Oregon and Utah. It was So Nice not having to tube feed, it was a relief to think we might be done, although I was skeptical it would last.
As we launched forth into 100F average summer temperatures in the area it became our duty to try and keep her hydrated and healthy and having fun. We went about 4 weeks into this wean before we were forced to begin tube feeding again. We had, what I call, the “dehydration incident summer ’13” happen at a water park. The unforgiving Utah sun sapped little River dry one day even as I did my best to keep her drinking. She experienced terrible stomach cramps, and took naps in between the pain at the park, and that night started having fevers. I began tubing her juice and water that evening, and in a few days we ended up at the ER at Primary Children’s. Although she didn’t continue to suffer from dehydrations symptoms (other than a dark color in her urine and diaper) she had fevers and I was worried about bladder infection. So the hospital wasn’t much help, but they seemed to think she would be fine soon, only testing for a UTI which was negative. If this had been a normal kiddo with no direct port to the stomach, I would have taken her to the ER straight from the water park that day, but knowing I could slowly and surely hydrate her continually at home, I didn’t. I was so bummed about this incident, not for the weaning failure, but that I allowed her to get heat sick and get stuck all day at a stupid water park and experience such discomfort and come close to a serious brush with major dehydration! My son also got sick at with a cough and sore throat also a few days later. I continued to tube feed her from that day, as while we were at the ER I noticed her weight was stagnant, no gain in a month! No good, need to put some weight on my little girl which is what we’ve been working on ever since.
We still had fun adventures and got to travel during that month, yet grateful to leave 100F behind, back in Western Washington where we were occasionally having 85F. When we returned home we also got back on track with potty training, currently doing awesome with that! We’ve kept up about 8-10 oz. of formula tube-fed daily, spread over 2 different times. She is steadily gaining weight again, and currently about 27lbs!
River received several speech therapy sessions this summer with Julie. I feel there has been some improvement since then, River usually speaks in incomplete words, typically missing syllables, and the endings of words. Since ST has begun, she has altered a few of her errors, and has new words now that include an ending sound. Example “Hello Kitty” use to sound like “Eh-Lo-Ti”, has now turned to “eh-lo-ti-Ki-tee”. And “Chip” and “Dip” use to be missing the P sound, but she says them good now! I’m glad we had the few sessions we did as to help her become aware of her speech. Her ST will pick back up at her new preschool, Head Start.
So on to the big preschool news!! After MUCH paperwork, APPOINTMENTS, and some paperwork, and phone calls, and don’t forget the FRIGGIN’ PAPERWORK, River is enrolled in Head Start! Head Start is a federal pre-school program, typically for low-income families, but they also have spots for therapy kids. River will get weekly ST at the school, as well as being able to attend a half-day great program! Fortunately she does not need to be tube-fed at school. I’m so glad that we are in the position to just feed a few times at home, conveniently, and no strangers have to mess with anything. Of course I had to do a bunch of stuff with the Head Start nurse, and they have an emergency plan in place, but hopefully the school year will go smoothly and her g-tube will be a non-issue.
Preschool started this week and she’s attended a few days now. So far she’s doing great, except she melts into tears as soon as I pick her up! But then they tell me how great she did all day. She is also taking ballet class over at the Y, we started her back in June for a couple times, and now she goes about once a week and loves it! She’s so adorable in her leotards I can’t stand it. She loves playing with her “ballet friends”.
We had our 3 month check up with GI and Dr. P. They were happy to see the weight gain she’s made, but of course sorry to hear that the weaning didn’t quite work out. She has reached up to the 8th percentile of BMI…. which is actually a gain on last june’s around 6%. We have some goals to get her growing even more, and we’ve all decided to hold off on any more weaning notions for the time being and revisit it in the spring.
We were able to make it the Mended Little Hearts annual picnic this year! I won’t stop plugging them…. Also we a facebook page now for the group: Mended Little Hearts of Puget Sound