I’m working on making a database of all of Daniel’s medical information on Google Drive so I can access it anywhere. It’s been a headache to try and make space and sort all the paper copies of all his specialists and the different appointments. I’m excited about this maybe helping me out.

When I scanned in Daniel’s Bulgarian vaccination records, I could smell cigarette smoke. SO MUCH cigarette smoke in Bulgaria! Reading the “discharge protocol” for Daniel and the place where I signed for “parent taking custody” …

That’s powerful stuff.

I’m looking up a Bible study that Anna can do. Some friends suggested Seamless, so I’m checking that out.

I’m looking up good audiobooks… got a lot of good-sounding suggestions from facebook friends…. haven’t made a list or checked them out yet.

Saw a meme that represented the mutual respect doctors and patients need for each other:
Doctor: “Don’t confuse your google search with my 6 years at medical school.”
Patient: “Don’t confuse the 1 hour lecture you had on my condition with my 20 years of living with it.”

Anna’s new dog poops in the house a lot. He’ll learn and Anna takes him outside a lot, but when he poops in Jordan’s play room and we don’t notice… oy vey.

Daniel has requested to sit on the potty twice and both times went! Took some waiting, but he did it.

Speaking of Daniel – he yells at me a lot. Calm down, dude. Time out is for crossing your arms and grumbling, not thrashing and screaming nonsense. Somebody needs to teach him how to do this so I don’t go crazy. Nobody? Too bad. 🙂

Tension headaches like me. I started a 13 week core program and I hope that it resolves some significant amount of neck and therefore headache pain.

We took Daniel in to a nephrologist to see if any of his genetic markers related to kidney function are causing any problems. We did testing ahead of time, but when we showed up, she hadn’t reviewed his genetic testing, took texts on her phone while we were talking, and had no answers. In the end, I sent a complaint to Doernbecher for the wasted appointment. And then she called me to tell me why she had done nothing wrong! It was uncomfortable and… umm… not patient-centric. Anyway, she had all kinds of concerns and said we should see a nephrologist specialist at the Mayo Clinic in Minnesota. Yeah, not what I wanted to hear. I contacted his genetics team recently to update them and to ask for a referral for something unrelated (endocrinology) and let them know about the nephrologist and that I’d find a new one. They reviewed his labs and said that it looks pretty clear to them that he is at a higher risk for kidney stones and to keep him extra hydrated to reduce that risk. And didn’t suggest any follow up at all. I’m still planning on following up with a new nephrologist but….. yeah. The saga continues!

Our DME provider that sent us tube-feeding supplies for Daniel those first few months misquoted us… collected bills… changed the bills… changed the bills again – increasing from an expected $250 or so to closer to $1250. We endured lots of unpleasant phone calls, emails and getting shuffled all around. Anyway, they finally waived the patient portion and that’s a huge relief. The supplies these are in regard to were worth about…. $150 if I had bought them privately. I think. I haven’t done the math. But tape and cheap syringes aren’t that much!!!! So ridiculous. Happy, happy, happy that it’s finally done! We’re ordering all his tube feed supplies privately through facebook groups and ebay now. Cheaper and more direct.

Facebook post of the day:
Problem: Brian left early and works late. Typically, I barely make it (energy/emotionally/mentally) through a work day. I love Brian getting home, because he is AWESOME and makes dinner and bedtime so easy on me. How can I make today better?
Solution: Cancel all book schoolwork. Task Anna with making cookies. Agree with Maggie baking something she calls Quick After-Battle Triple Chocolate Cake that is in the back of a book she read that involves dragons, battles, and the Frying Pan of Doom. Tell them they’ll have to wash dishes. Hope for the best! Focus on me and the boys and let the children run free in the kitchen. That’s right – no supervision. They’re good cooks.
p.s. If anything epic happens, disaster or success or some mix of the two – I will post photos. Unless there is mostly disaster. At that point, please send pre-made cookies and ice cream and take my three girls away for a couple hours to reduce the size of the calamity.

Huffing, yelling and stomping from one girl-child. Oooh, followed by a door slam. Possibly will have to follow up with that. Jordan’s banging on walls and Daniel is singing. I need a shower. Further update as situation warrants.

Made it to eleven-hundred hours and it only felt like ten-hundred hours passed. No children crying and cookies were successful except batch was too small and they’ll be gone by lunch. Dangerous cake making occurring in kitchen. Shower still unattempted, but weight of grease in hair presses this task to high priority. Oldest man-child is hungry and bored and youngest man child is laughing about throwing legos. Note to self: Put on shoes. Husband is a four hour drive away. Music has been banned. The day progresses.

Checking in at whatever hundred hours 3:30 pm is. All humans are still living and the chocolate cake is good. Fatigue is high, but only in the mothership. All child-directed ships are at full throttle. I tried for a nap, but either Jordan or Daniel has me back up again. Stacks of paperwork uploaded into Google Drive for Daniel’s medical record-keeping. I can see the light at the end of that tunne. If only I could see the light at the end of the Brian’s-at-work tunnel. No respite provider for a month for Jordan and the work-weeks are longer than they even were before we ever had respite. Maybe. ETA of my knight in shining flannel…. about 7pm. 210 minutes. I can do this.

Daniel did have a few smiles at the dentist, but was more scared than comfortable! Here tehy are with their prizes. No cavities!

Daniel chose the pack of finger lights from the dentist prize shelf and put them on his fingers.

We went in the sensory friendly dentist room to put Daniel more at ease. I also brought Carolyn, who LOVES the dentist in order to help him. She’s holding the long light strands. The sounds and seeing Carolyn getting worked on freaked Daniel out a bit, but it was not a bust.

Such a cute hygenist photo bomb!

Daniel thought that the light strands in the dentist office were awesome. His black eye is healing, but still pretty magnificent.

This whole bundle of light strands is made for holding while at the dentist!!!!

Anna at her dog training class!

Captain learns quickly.

I made a washcloth while Anna was in the dog class.

Will pose for pepperoni

Pepperoni, please?

Pleeeeeeeease pepperoni?

Looks like a happy place to me!

Found these x-rays to be interesting as I was populating google drive with all his medical records.

Daniel the day we got home from Bulgaria…. poop in your intestines is not supposed to show up like that. So glad he’s thoroughly hydrated now!

Before Daniel got his feeding tube, we put contrast juice in his stomach and watched it go into his small intestine to check for malrotation. It was cool. 🙂

Jordan in his pod swing with his face smooshed against the back, spinning like he likes…..

Quote from Daniel’s doctor’s notes from his first orthopedic appointment in January, 2018:
“We had a lengthy discussion with the patient’s mother regarding future implications and treatment alternatives. She is especially interested that he learn to walk, and we have discussed that, although we share her desire for him to walk, it is likely that ultimately he will require wheeled mobility for independence.”
Soooooooo – I still think he’s going to want/need a wheelchair sometimes, but I think he’s already exceeded expectations with regard to learning to walk! We have not done physical therapy formally, but have given him every opportunity to move and be successful within his home. I am so excited for how it’s going!!!

Daniel has done this several times in the middle of rooms!!!!! He’s going to be able to stand up in the middle of a room!??!! WOW. (He hasn’t stood up in the middle of a room yet, but this looks like once he’s stronger and has better balance… he just might!

At the physical therapy clinic getting an annual evaluation to help us order equipment. This time last year, we were discussing ordering a stander to hold him up to stand. This year, we’re talking about how to help him walk! (We never got the stander) – I apologize to the PT for the not super flattering photo of her face/expression here… so I won’t name her, though I like her.

He tends to stand with his hips out behind – this is very upright for him. We’re discussing why he stands that way and how to help him become more upright.

A good friend’s (small town) church is outgrowing their building and designing a new one. We want to share our insight into how to make a church more welcoming to those of us with special needs, so we’re going to try and distill our impressions and thoughts into something coherent to send them. It’s nice to have them welcome input.

New day here – how did today get here without me havinga plan for it?
Solution: Maggie and Carolyn are looking through the links and videos I’ve saved over the last two years in a “homeschool” folder. They’ve done typing, watched how Harry Potter movies are made and I think they’re onto a nature video.

Cool mom move: I spent $20 on a huge bucket of bubble gum and a huge pack of eclipse chewing gum. Sensory solution for sensory crazies on bookwork days. Positive sensory input in stressful moments. Playful and desireable (and $.03 per piece) solution for relationally challenging moments. Now…. I just have to stop chewing so much of it myself so it lasts awhile. 😀

Noticed something with Daniel that explains a lot about his speech articulation and his severe oral aversion. He cannot move his tongue hardly! He can stick it out. Then he tried to copy me moving it to one corner of my mouth, but it hardly moved. Same with the other side. He cannot tip the front of his tongue up and cannot touch his top lip with his tongue unless he closes his mouth on it! I knew he had coordination deficits in his mouth but…. that’s pretty complete! So we’re playing tongue games in the selfie screen of the cell phone sometimes. I’m hoping that just USING his tongue will find that he has physical capability there. Sometime we’ll get a speech therapist on board – I think it’d be helpful. But the fear levels need to drop a bit more first, I think, so it doesn’t backfire.

Jordan was mostly awake and laughing hysterically or crying from about 3AM on last night. Not his happy giggle – his “something is bothering me” giggle. He’s still not himself this morning. I gave him some cold medicine in hopes of addressing whatever is hurting or uncomfortable. Headache? Stuffy nose? Aching something? School is going to be difficult this morning, so I’m taking a moment of peace to set up school for the girls. Something that involves the sunshine and them going outside. If you think of us – pray for Jordan and for the rest of us too!

This post is a good week long string of thoughts now. Posting it and moving on! This is for you, Mom – not on facebook!

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  1. GramC

    Thanks Rachel…… you tons and looking forward to seeing you Friday if it still works out. xoxoxo

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