Slowly but surely

10th Percentile

We…I say “we”Ā 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 šŸ˜‰ 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 continuingĀ 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 bigĀ 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 fiveĀ 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.

Photo Dec 12, 12 06 57 PM

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.

Photo Dec 29, 1 48 36 PM
Bubbles in the warm, snowless winterĀ of Washington State.
Mad Cat officially displayed!
Mad Cat officially displayed!

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…

Photo Jan 16, 12 56 43 PM
Getting our archery on

Oh it’s been a while!

Mama got sucked into the vortex of college and couldn’t get out!!! I’m back, and it’s time for a River Spectacular!!!

Get the sillies out

River is doing fabulous first off! We had our 3-month check up with her GI clinic and she did gain weight, but sneaked down the scale a little bit, now coming in at 7% BMI. But Dr. was assuring and said that this is River’s trend and she still falls within her general curve and not to be worried. He changed out her AMT Mini G-tube button, and River cooperated so amazingly I was wondering who this little girl was. My little girl…not my little baby, anymore. She’s grown up so much this year! She would have normally pitched a huge fit and freak-out session, which is why we switched to changing out her tube usually while she slept. This new AMT is a bit trickier to get in, and I doubt she’d sleep through it like she would the Mic-key. She was uncomfortable, scared, but so brave, and she surprised me! We got the big news too, that if we can manage not to touch her tube for the next 3 months(by that I mean use it for supplementing her) that we may be able to get it out in the fall! This is exciting and scary. So far I haven’t touched that since last week, but I keep wanting to feed her extra! That 7% is bugging me, she was over 10% three months prior. We will just keep taking it day by day as usual. Assessing the situations as they arise.

In other related news, River recently got assessed in the local Childfind, and she has Ā been approved for preschool starting in the fall, where she will receive speech therapy as well as regular pre-schooling. She has been seeing Julie, her SLP, weekly since about March. Her speech patterns are similar to Ewan’s early errors, but she has caught on that we want her to add sounds, also to improve her volume and clarity. It’s been going really well, but I think it will take time for her to start integrating these improvements in her regular speech. She does excellent during therapy, and daily reminding, but usually doesn’t translate over to her talking. But I predict speech therapy will do it’s job to help her and by the time she hits kindergarten she won’t even need it!

Our “little lady” has also decided that she was ready for the potty, all by herself. Recently she was adamant that she did not want to use it, but she made up her mind and went and got her potty one day about 3 weeks ago. She’s been using it ever since! She is so proud of herself, we even managed to survive camping this week with a travel potty seat! We will be all ready for our summer trip to Utah soon! They will all be blown away by the girl they meet šŸ™‚

Ms. River is a head strong determined little girl who knows what she’s doing….maybe she is ready to let go of the tubie. Am I?

Hi from the lake!
Summer 2013! Yay it’s here!!

Having Lunch


Just a quick photo at lunchtime. River in her Elmo shirt hanging out watching some Seasame St and playing with Zoobs and getting her blended food! A typical day!