Slowly but surely

10th Percentile

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.

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 winter 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

One Mad Cat

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Back in the day….when I had a quick-growing boy, the frustrations and expense of constantly shrinking clothes and shoes was kind of a pain. Perspective is a wonderful thing, and when River starts showing signs of growing out of things I get enormously giddy with excitement! I’m here to announce that River is now a 4T……4T people!!!! I literally can’t wait to go out and shop for some new things! Of course, she has a closet full of things that still fit, especially items that were bought a little too big. I get really gaga over this because it indicates her weight gain and growth!

We recently had our check up with Dr. P, and he was pleased to see her little dot move back up to a more acceptable growth curve. Her current gains have only taken her back up to an 8th percentile, but at this point we consider that her average. Dr. P continues to feel that this is where she wants to sit naturally, and that she looks overall healthy and bright, so he is not pushing us to do anything new. We will continue along her current feeding plan, which consists of 10-15oz of tubed food a day. We had her tube switched out at this appointment, which is the most difficult portion of the visit. She really throws a fit now, and gets very panicked about it hurting. Dr. P was able to finally get a new tube in, but unfortunately we haven’t figured out a non-traumatic way to get River through this. If the newer AMT-minis get easier to change(as their new design is supposed to do) I may try to go back to changing them out in her sleep as I did before, because it was 100% non traumatizing for her! But that was with the Mic-key button, which has a really smooth design, and easy to switch out. The AMT has a ridge that makes it stay in nice and tight(less chance of being accidentally pulled out) but a lot harder to put in. Dr. P said River’s g-tube tract is very healthy and tight, which is good for some reasons, but makes changing extra difficult.

River’s perception of her own g-tube has started to evolve. She is really fascinated with the new glow-in-the-dark version she received. She has some understanding now that we give her food through her “tubie” because it’s helping her to grow, and because she doesn’t eat enough herself. Sometimes we give her a choice, like if it’s just whole milk, water, or formula, going in, to try and drink it instead of having us tube it. Every once in a while she opts to drink it! So we are slowly moving into a zone of comprehension. But when we talk about the future when she might get the tubie removed she seems frightened by this prospect. Her tubie is a part of her, and it’s all she’s known. It’s extremely understandable that she feels this way. We gingerly approach the subject with only positive conversations.

I am still not ready to give her a trial wean again. We are patiently waiting to see how she does day-to-day, and look for signs that she’s ready. With her new found “chubbiness” we can see a time when a trial weaning might be nearing.

I know that many parents find my blog hoping for guidance, or ideas, or hope for their own tube-fed or heart kiddos. I don’t have a lot of advice, I only know what I’ve experienced. But I know that I was convinced that River was going to get her tube out long before we reached the age of 4. I was sure we wouldn’t be one of the ones who had toddlers, or older children, with a g-tube. Not us. No sir-ee. River was going to be one of those who figured it out at the age of 2 and would be among those early tubie-graduates.

I’ve learned that you only take one day at a time. Don’t give yourself unrealistic goals, or put this kind of pressure on yourself or your kid or your family. We went crazy going to therapy after therapy, to the intensive 2-week clinic, and beyond. Yes, we have achieved a lot, River was a baby who couldn’t put anything into her mouth or swallow. Now she eats! We have come so far! Just enjoy the little triumphs, have fun with your baby, love them, they will get there when they are ready. If we keep going forward, one day at a time, one day we will look up and before we know it things will change. Be at peace that your child is doing exactly what they need to be doing. Yes – therapies and clinics and research and effort is key to progression, but don’t drive yourself to misery because your tubie kid isn’t off their tube yet. There are so many more important things, like that they are well fed and growing enough with the help of the tube that their brains can develop, that they can be bigger and stronger to play, that they are happy and surrounded with support and love. One last thing I’ve learned: use real food whenever possible, get a Vitamix, don’t let your baby develop on formula that’s filled to brim with HFCS, sugars, over-processed crap. USE REAL FOOD.

MUSEUM OF GLASS

River recently won a spectacular prize!! Back in March, both the kids made a little drawing while visiting our local Museum of Glass, and entered their Kids Design contest.

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This was her entry, and she was chosen to have her drawing turned into glass art for May 2014. We were invited to attend the session and watch them make it live. River wasn’t exactly thrilled with the whole thing. Ewan really understood what a cool thing this was, and was very excited for his sister. She is very shy, and the whole experience was a bit overwhelming for her. She also confessed to me she didn’t like her drawing anymore. Oh poor baby! She will understand when she’s older, that even though she may not like her drawing anymore, that we all like it, that the artists at the glass museum saw something great in it, and it will be a piece that we will all treasure forever!! As an artist, I get that you don’t often like your own art, it’s totally normal. She’s also 4. 🙂

Here is more pictures of our amazing day at the hot shop! The museum makes two pieces, one for the museum to keep, and one for us.  We will get it in a few weeks!

 

Early stages
Early stages
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This is us clapping at the end!

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Finished piece, still very hot
Finished piece, still very hot