We…I say “we” because it is a team effort around here…we are now back at the 10th percentile. Based on charts from the CDC, for our country. I looked at the WHO chart because I’m curious and if she’s at this weight when she turns five she’ll be like in the 18th percentile, from a larger sample of the world. Either way, she’s a little thing. My River, she has had so much growth since I’ve last blogged, developmentally speaking, but almost nothing has changed with her tube feedings. We are content to let her be her, and not push it. But I have decided to take a new approach to feeding her, at least until I can eye ball it, but I will see if there are more creative ways to get a calorie goal down her everyday.
Having just visited the GI today, I have several things to share. First, River weighs in at 32.8 lbs, and we are pretty sure that her sweater accounted for some of that weight 😉 103.5 cm tall, almost 3.5 feet. Second, we discussed our little tubie falling out incident that happened a few weeks ago, and how we installed a Mic-key after that. I’ve been nervous about doing changes at home since we had switched to an AMT mini in the last couple years. River’s gotten highly anxious about tube changes since the AMT as there is more discomfort during the change due to some ridges on it. Once in, an AMT is less bulky and more comfortable than a Mic-key. We discussed my options for changing at home in the future, I feel better about handling it at home since it will cause River less stress. Our wonderful doctor assisted me change it out in the office, and this was the best change since getting the AMT-mini! So, now I will just do them here, and continue to work on relaxing River during this very minor procedure. I’ve been working with the kids on breathing techniques for relaxation, and although they have a hard time getting the hang of it, it really has benefited them during these things.
And lastly, I needed a good set of numbers from the dietician to work with. I really have had no clue as to calorie intake lately, or what maybe she should be aiming at in a day. We’ve gotten too use to just feeling out the day, and continuing the supplemental bolus feeds and seeing her slowly but surely gain weight back to her typical growth curve. So my next adventure will be to see what 1050-1350 calories looks like for River, and what 1250 ml in fluid intake in a day looks like for River, and how that might be accomplished. She still has her slim eating days, and some big binging days. I will explore this avenue again, but with a dose of humility. River never fails to let it be known that she is in control of her body. Her body will show us what it’s capable of. Her stomach will let us know what it can handle, and what it can’t. This is really all River, I’m merely the provider of nourishment. But as we approach the age of five I am seeing hints of discovery in her, signs of understanding of the world around. It won’t be forever, it’s really just around the corner.
We visited the CHD Awareness tree at Mary Bridge placed by the Mended Little Hearts group. We were unable to participate this year but it’s great to know that it’s there! I love visiting River’s little chubby baby face that hangs on it.
Our lives have shifted a lot in the last 6 months, and we’ve found a new direction to take our family in, and it’s unschooling. This blog was not intended to be about unschooling, or homeschooling, or whatever food I’m baking is. So I won’t go into it much! But I am thrilled to be able to spend much of my time taking my kids on this new journey, and focusing our lives on our personal and educational growth, and the tiny every day things that make life so worth living. Like this fun episode of The X-files that I happen to be watching out of the corner of my eye. “E.B.E” a classic! #Xfiles2015 (priorities, you know, it’s a trending topic).
I’ve found it hard to attend those Mended Little Hearts meetings, those meetings that I needed so very much in the beginning and I’m so grateful for. There is time for support and then there’s this time that I need right now not focusing on medical conditions and our earlier story. We have stepped back from all speech therapy, physical therapy, occupational therapy, and feeding therapy. As well as the federal early education preschool standardized test form things. We are blissfully enjoying minimal medical intervention. GI every four months, Cardiac once a year, Pediatric once a year. It’s like literally amazing, it’s the freest River’s ever been from medical hassle. River and Ewan have also been free of all contagions since summer, no colds, flus, fevers. We are so grateful and continue to be blessed everyday by just the mere presence of these children.
Mad Cat with One Ear is now on display at the Museum of Glass, Tacoma, WA. We got the chance, randomly, to visit it on opening day!! Pete’s cousin came to town, we took him there and boom there it was! Even a little blurb about River. Tacoma has a cool art scene, not gonna downplay. It does.
Until next post…