Day in, day out

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I am not a frequent blogger, not anymore. As I ponder why I choose not to update the blog on the daily things or the once in a while things, I wonder where it’s going? I shockingly get 20-40 hits a day, and I’m filled with joy that maybe some of my words or information helps at least one of those seekers in a day. That’s why it’s here! So I thought maybe now would be a good time to just do a post on my reflections, where River is at in her life, and where we are all at.

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Various ingredients of our homemade formula

The typical day with River and her medical conditions have simmered down to low on the burner. She wakes up in the morning, we are currently co-sleeping, and calls for me. I grab my sleepyhead and plop her down next to her brother, who, like me, is already up. They take their time in the morning waking up, usually watching a little morning Minecraft. Then it’s time for breakfast, I can usually only expect a few nibbles from her. Her thirst is strong in the mornings and she’ll at least drink some juice and maybe eat half of whatever I gave her(after coaxing and coaxing). I give her ample time to digest and make certain I can’t expect any more oral eating before giving her the first “tube” of the day.

We currently bolus-feed and she gets about 8 oz. of homemade glorious green goodness formula. As I reported previously, her new formula, laden with whole healthy foods, primarily vegan protein, coconut, and some natural boosters, has improved her immunity. Last winter was very “sick”. Our little girl had like 5 colds over the fall thru spring. By summer all better. Just the warm weather?? I think not, it’s now February and River has had 2 teeny tiny short-lived colds since last May. I feel confident that the super formula I give her plays a large key role in that. It’s boosted with things like turmeric, ACV, grape seed extract, and fresh lemon juice. Not to mention the super foods like kale, spinach, hemp, etc. Oh sure, you say, well we can’t get our non-tube fed kids to consume stuff like that right?!?! I don’t have the answer to that other than just try everything! I try and sneak good stuff into my sons meals, and he does really well also (only 2 very short-lived bugs this year). And when I say short-lived I mean like 2-3 days of light symptoms.

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The day continues and the kids play and explore, read, watch, or go places. See, we homeschool, it makes life a bit slower and lots more flexible. I couldn’t be more grateful that I’ve chosen this for my kids, and I can’t emphasize enough how crucial I think it’s been to keeping River calm, healthy and happy. She experienced about 4 months of preschool at the age of 3. She was sick once for each of those months. She was also miserable there. And the paperwork! I am also so thankful to not have to constantly be in IEP meetings or 504 (or whatever those are for kids with medical exceptions in schools) and all that stuff meetings! I did that for years and years with my son for speech, and there I was going through it again with River for speech and tube-feeding. I love that we homeschool, more specifically unschool, and I can give them this freedom from constant evaluations, stipulations, observations, separations, and other “tions”. I highly recommend this for your tube-fed or CHD children.

River is sensitive. She had a really rough go of it in her first 3 years, not too mention those early crucial first months of life. Those of us with preemies know to expect some form of delay. We’ve had our fair share of “delay”. Speech delay, gross motor delay. Therapies after therapies. Thank God I’ve discovered unschooling. Yes, my daughter has some delays!! SO the Hell What?!? She still wants to smear food around like back in the old feeding therapy days. She can sit for hours with play dough and makes the HUGEST messes! But then there’s these great leaps forward as well with her understanding, her interests, and deep thinking. Unschooling is perfect for my children. They get to stop having to live up to predetermined lines of progress. We all know, you know this, I know this, that most children will eventually “grasp a concept”, but what ages they “grasp” or their brains just reach that stage of development is different for everyone. And as we all know, we know our children best, better than any doctor, teacher, or outside human. River is River, and I’m grateful that she gets to wake up when she’s ready, and I don’t have to take her to school where some other people get to have her all day, take care of her, give her tube feedings and fill out charts on her.

Going to her medical appointments has gone down to a minimum. We see her GI every 4 months. We do tube changes at home. I’ll go in to that a little. River hates to have her tube changed. Her tube is very tight, and it causes her great stress and discomfort to take it out and put one in. So I’ve learned how to do this at home, she still freaks out a bit, but much less than if it’s at the doctor. We bribe her to hold still and not fight us. She absolutely looses it when it comes to these tube changes. But after much gentle coaxing and the promise of any toy at the store the very next day, she’ll hold still. She takes deep breaths through her tears, and Daddy assists in helping her feet and hands from attacking me, for the 30 seconds it takes to switch out her tube. Every 3 months now a new stuffy joins her stuffy family after a tube change. Her fear is so deep and her anxiety so high, that it takes me all of my mommy powers to not cry with her. I have to have(or fake) confidence and no fear in order for her to give us that 30 seconds of trust. Maybe other people just hold their kids down or make nurses and doctors do that, but I won’t put River through one second of further trauma than I have to. If she can’t give us her trust, we wait till the next day, or for however many days it takes to talk her in to voluntarily allowing us to do this.IMG_1625

Back to the day in day out. Lunch rolls around, she usually eats ok at lunch. Dinner rolls around next, and by then it’s been many many hours since her last tube. She typically eats her best at dinner, so we always wait until after dinner to give her final bolus. We could bolus her more than twice in a day, since we give her about 15 oz in a day, but we chose to do it in 2 large boluses as opposed to 3 smaller ones for the ease of it. She can handle the 8 oz. at a time and we are fortunate of that! We give her that final one about an hour before bed time, and the tubes are done until the next day. We use large 140ml syringes for the boluses. We have to use lots of oil spray to lube them up. I use large mason jars to store our formula, which I remake about every three days. There’s always lots of jars, syringes, bolus extensions to wash around here.

We don’t know when our tube-life will be over. We have no idea how many potential heart surgeries or procedures she’ll need when she’s older. But life goes on. Everyday I am blessed she’s right here with me, growing up at her own pace, doing her thang. I also can’t wait for the day my kids are old enough to look back and read these blogs. I’m sure the eye-rolling will be in overabundance. And maybe, just maybe, they’ll also see how deeply I love them, so so much. 

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7 thoughts on “Day in, day out

  1. I’m even worse at updating our blog…how many years has it been now? When tubie life calmed and my when I had more faith in my parental instincts, the need for the blog slowed down as well.
    Oh how I wish I could unschool my sweet girl. I know she would benefit in amazing ways…but her father thinks I couldn’t be further in outer space. It’s a wonderful thing you are doing. And I do believe they will see all the love.

    1. You are right about that! The blog slowed down when we really “settled” down about everything! Oh how I wish you could unschool too! It took some time to get my DH to come around to the idea of it, I had to research and research and then try and boil it down for him, because he didn’t want to read much about it. But it really goes hand in hand with that parental intuition stuff, the more you can trust your instincts the more you can see how much you can trust your children! Thanks for that, I hope you and Haven are doing well!

  2. I have completely quit blogging, but when I read your updates I think maybe I should start back up again. My CHD baby is 3 now and my apraxia girly is 5. We are holding steady with our heart baby but have sort of come to a very difficult time in our improvement with our apraxia girl. We are working so hard on L right now and it makes me cry when I see her toung quiver to hold it in the right spot. We also homeschool and thank God for the opportunity to not have to fit into a mold made by someone else. So good to read an update.

    1. Thank you for the comment! I completely understand! I remember those ages with my son, and it was a tough time in his speech development. It wasn’t until about 7 or 8 when I felt like we could say with confidence that he will get where he needs to with speech. I mean I have no idea how long it will take him to perfect his speech, but around that age we could tell he’d mastered all the sounds, it is more about refinement and repetition. As well as getting him to relearn words he’d developed in error, we still have that and he’s now 10. But now at 10 he really can hear his own errors and he does all that self regulation they talked about. You will get there! I’ve learned, because of him, to cool my jets with River. While she’s not “apraxic” she has her speech errors and difficulties, but with my son as an example I feel assured that by the time she reaches closer to 10 she will probably be doing what he is doing- that self-monitoring of their own speech.

  3. Hi Michelle! Just so glad to hear about how things are going! Your post is so well written and articulate, you made me cry. It’s all good, that’s what tears are for and I’m sure your kids will shed a few in the future as they read about your struggles and joy. You also reminded me of how grateful I can be to be home with my son…it’s so true that I would spend my day jealous of someone else taking care of him, so screw the “highly successful professional Mom” model…I’m going for walks, smiles, seeing all the firsts, and ‘English immersion’ for my little guy!

    1. Oh thanks for that Cherri! I’m always certain that my writing is a hodge podge of words! 🙂 Soak in as much time as you can with him that’s for sure! I never knew I would reject the career person aspect of me for this style of living, but I listened to my instincts and it’s shown me how great it can be! Hugs to you guys!

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