It’s the last day of the year and I’m finally inspired to write a post, a little catch up on the life of River. Now recently we had a check-in with the dietician back in November, and at that time we had tapered down some of her tube feedings, in hope it would encourage her to eat more at school. Her program, Head Start, provides breakfast and lunch, and of course most of the time River just picks lightly at her food. It would have been counteractive to send her with a full tummy in the mornings. So on that last visit, which was two months after the September visit, she only gained 3 ounces, she was at 27lbs 4oz! ARGGG we said.
So at that appointment the dietician recommended we change the formula we’ve been giving, to a higher calorie one. Previously she was on a “1” which is 240 calories per 240 grams, 1 calorie per gram. We have now started giving her Boost Kid Essentials 1.5, which has 360 calories per 240 grams. Her recommendation also was to not necessarily bolus her more formula but to just offer this, and hopefully get 10 ounces into her a day. Well we are lucky if we get around 7-8 ounces in her a day, but we weighed her and she has gained over a pound in the last month!!! She weighs in at 28lbs 7oz (according to our scale)! We were very thrilled by this development and are happy with this new formula. Her oral eating and drinking remains at what is usually is. She eats, she drinks, but if left on her own, doesn’t gain weight. We believe she may have to be on her feeding tube for much longer than we hoped. We still have tentative plans to start another weaning trial in the late spring, probably after her 4th birthday. The plans hinge on weight. If by then we have packed some extra cushion onto her little frame and her growth is on track then we will discuss this with Dr. P.
Whatever!! River is River, and she will do what she wants at her own pace, I’ve come to realize I’m only here to assist, not direct. Preschool is going well. As we suspected, and teacher confirmed, she is definitely shy. She tends to not speak up or talk much during class, but usually enjoys herself and gets along well in the activities(sometimes herded and mothered by many adoring girls, sometimes a little too much). I’m really hoping she’ll open up more next year. She is only 3! She is also the youngest and smallest in class, and is very intimated by all the rambunctious 4 and 5 year olds.
What River did this fall was help me complete college. Well, she at least helped win over one of my professors! I graduated with my BA in Art this quarter at The Evergreen State College. The last 2.5 years have been a whirlwind and sometimes I can’t even believe that I did it, all the while taking care of this little munchkin. This is where other people came in, because I certainly didn’t do it on my own! I have to bow down to the excellent assistance provided by my husband, friends, and River’s nanny Patty for all the pick-ups and drop-offs and time and energy spent helping me and my family through this time! Woo Hoo I’m done!!! Onto to the next phase!
Christmas was good for our family, besides the pesky long-living cold River contracted, full of high fevers and buckets of snot. We managed to get up to the snow once, since it refuses to fall down here in the Puget Sound much. Leavenworth was beautiful and exciting, even if overwhelming in it’s crowd size! River’s favorite gifts this year? A fairy puzzle, a calico critter car, and some of those cute stuffed animals that come in purses. Not too mention the gobs of Hello Kitty clothes and books, she still loves good old HK.
Her speech is coming along well, she has added many more words to her daily vocabulary, even if they are still hard to understand. She wants to be understood and tries her best! I’m starting to think though that a dx of apraxia is not that far-fetched. Not that it makes a difference in treatment, she receives the necessary speech therapy, regardless of dx! And I have heard of other cases of siblings both having Apraxia. So with age 4 around the corner, and listening to other toddlers much younger than her speak so clearly, I am truly wondering if Apraxia isn’t the culprit.
I love my children, they, so cliche, complete me! Apraxia, feeding tubes, surgeries oh my! can’t stop us. Those do not define us, what defines us is how we deal with them and how we continue along on our journey.