Daniel is scared of doctors and nervous about casts and really scared of plaster saws. So in preparation for his serial casting next week, we purchased the necessary supplies to do some plaster casts at home. I’m blogging “how to do plaster casts at home” so that other families who need a practice round can do it! We did just plaster… skipped the fiberglass layer, because it’s expensive and extra hard.
Step 1:
We watched these videos together multiple times…
Total cost was about $120, though it would be less without the statue kit and more if I also bought material for a fiberglass shell. Since Daniel needs to have these casts done at the doctor… and he’s scared of doctors… well, it felt like a “deal” in order to give him a boost in confidence for the real doctor casting day.
The statue-making kit went well… except that we almost couldn’t get Daniel’s feet out. We had to tear the molding material to get his feet out, which partially damaged the final result, but gave a surprisingly good result, considering. Also, it made a mess. Glad to be done with that.
Brian held him an inch off the bottom of the tub full of molding material…. it’s liquid while pink.
It took 2-3 minutes to set… Daniel wiggled a lot, but the instructions said it would probably be okay. They were both tired of the awkward position by now.
Hello feet!
Okay – for the casting process, I just copied what they did in the videos. First, a sock. Then a cotton wrap to make a layer of padding, then plaster bandage (which is dry… dipped in water… squeezed out and then wrapped around the leg.). I held the foot in a position until it was hard enough to let go.
First, I made a “doctor” table and set up everything.
First the stockinette goes on… then the cotton wrap for padding.
Brian was the first volunteer so that if anything went wrong… it went wrong to him. He’s a good dad.
I only used two little rolls of plaster on his big legs, but it got pretty hard!
Maggie was the second volunteer! We brought Daniel in to watch. First, we did a massage with coconut oil, just like they do at his new orthopedist’s office.
Stockingette on…
Wrapping, wrapping, wrapping. The gauze was thinner than the cotton cast padding bandage I intended to buy, so I wrapped and wrapped and wrapped so that they would be safe from the saw when we cut it off again.
Silly girl.
Somebody is very interested in the process.
Plaster time!
Unsure….
Curious…
It’s hard!
Maggie took her hardened cast to show Daniel. Somebody got him crayons. Fear forgot what he was afraid of.
Wrapping, wrapping up Carrie!
Carolyn wanted to help rub the plaster around.
Easily the most photogenic person in our family.
Only Daniel and Anna were left. Daniel enjoyed drawing on the casts with crayons. He was nervous-excited, but willing. I think watching his siblings and dad go first made a big impression.
I think they may harden further with time as they still weren’t rock hard… but I also think that they had soft spots, because I just didn’t wrap the plaster very thick. That was on purpose! Next was the oscillating saw… a saw blade that moves back and forth in a very short arc. Brian very carefully tried it on his arm (both of us flinching about cutting open his arm)… first his arm hairs escaped unscathed. Then the air above his skin… then he touched his skin several times. He managed to give himself a small pink spot that looked a little roughed up. So we decided that it really is difficult to cut yourself with these. And everybody had a nice thick layer of gauze on top of a sock…. so… with trepidation, I began.
Once again, Brian went first. But I don’t have photos. Here I am at the end with the last cast:
After this experience, I would offer this advice: Make the padding thick and the plaster thin. Then you will have a hard time scraping anybody when cutting the cast off. If you had thick plaster and thin padding… I think it would be a lot easier to scratch the skin on accident.
Cutting with the oscillating saw…
After the saw… it didn’t come off easily as it stuck to the gauze a lot.
Using my bandage shears and trying not to poke him too much.
We did it! High five!
Only downside I can see right now is how mad he’s going to be when we don’t take his cast off at the doctor’s office immediately.
We’re doing well right now… mostly feeling strong at the same time as doing hard things.
My generation… the first with social media… has taught itself that we can do everything, be everything, succeed in anything, and a lot of other “be beautiful and awesome” mantras. That’s all well and good, except that we’ve also believed that we are failing as individuals if we don’t succeed in everything and are not filling every possible role (working/mothering/traveling/etc.) and doing it with style and flair. Keeping up with the Joneses has evolved from trying to keep the lawn mowed as nice as the neighbor to having nicer cars, cleaner houses, better dressed kids, higher income, more vacations/classes/outings for the kids, and always being the well-behaved, put-together and happy person.
That’s an impossible standard to keep. We are not always happy and life has never guaranteed constant success.
Funny that it’s taken me 35 years to have that sink in far enough that it means something to me. I do not have to feel guilty about having a wide range of emotions, positive and negative. I am not a failure if I am not always poised, informed and articulate. I can just be me. Just ME. What a novel idea. Those of you reading from other generations might know what I’m talking about or you might think that these are foreign concepts… and maybe it’s just that I naturally gravitate toward perfectionism, but this has been a big deal for me.
Oh, I also have been thinking about strength. Because, I KNOW that I’ve been doing “bodybuilding” in terms of emotional stamina, mental soundness and worldview integrity. It’s been sweat and tears to experience lots of hard things… and things get harder… and we continue to get stronger. And sometimes we injure out or fatigue. And sometimes we have big battles. It can be anything for you – for me, it’s being away from home and husband, navigating physicians and treatment plans, mentally and emotionally supporting my children through pain and fear, missing sleep sometimes, and managing a household while completely drained.
A warrior is trained. A soldier completes physically strengthening exercises. Practice, stress, training, enduring, preparing.
And then it’s time for a battle.
And it is STILL HARD.
It’s okay that my life is hard. I am as equipped as we’ve been able to become. As trained and creative and strong and prepared as possible.
And it’s still HARD.
I still get too tired and I still make mistakes and I still don’t always have confidence in my decisions. I get scared and I get discouraged. And sometimes I give up. But… we get up again.
Life.
I’m learning.
And on a day when I feel both strong and tired… well, I just wanted to write myself this pep talk for later.
Daniel’s first serious round of medical treatment is imminent. I’m stretching and warming up over here. Calling all my team together and preparing. We can do this.
So, I’ve been thinking a lot about heaven lately. If you read my musings here much, you know I dwell on heavy subjects of suffering quite often… and I don’t do well if I didn’t spend time considering heaven also.
So…. there are lots of opinions about heaven and lots of good study and literature about heaven. But I’m just going to share a few things I think about. Because this is my blog and I get to do that.
First – people who have died are not in heaven now. Heaven…. like with a capital “H” is on new earth and is an actual physical place. There is a place we go when we die while we wait for Heaven. Catholics call it purgatory, but I’m not Catholic. Protestants usually call it Intermediate Heaven, which is weird. Anyway, it’s where we wait. And we know that the martyrs are watching events unfold and talking to God about it, asking when He will intervene. I see no reason why I shouldn’t believe that all the saints can see us and still care about us.
Something cool about that – they don’t have the ache and pain associated with suffering… they have our Lord right by their side and no shred of doubt about whether good or evil wins. They know.
Something else cool about that – when I think about those that have died who I miss very much… I see no reason why I can’t talk to them. It helps a little with the loss and pain of their absence here.
Second – I was reading Isaiah 59-62. Roughly. I started skipping around after a bit. But I noticed four things that we will have once we are in Heaven – the eternal Heaven…. with the new Jerusalem and the new heaven and new earth and all that.
1. Babies. Lots of babies.
2. Cooking.
3. Gardening and farming.
4. Building.
5. Parties!
6. Commerce.
7. Peace
Verses:
1. Isaiah 60:22a The smallest family will become a thousand people, and the tiniest group will become a mighty nation.
2. Isaiah 62:9b Within the courtyards of the Temple, you yourselves will drink the wine you have pressed.
3. Isaiah 62:8b-9a Never again will foreign warriors come and take away your grain and new wine. You raised the grain, and you will eat it, praising the Lord.
4. Isaiah 61:4 They will rebuild the ancient ruins, repairing cities destroyed long ago. They will revive them, though they have been deserted for many generations.
5. I couldn’t find it again… probably was just reading about being dressed like a bridegroom. But… weddings are big parties and that’s happening!
6. Lots of talking about other nations bringing gifts to Jerusalem…. didn’t find more about that here.
8. Isaiah 60:18 Violence will disappear from your land: the desolation and destruction of war will end.
Anyway. I’m happy about the babies, cooking and gardening.
When somebody asks for help, I like to have something to offer. I don’t carry cash and since the majority of the people asking are on corners that I’m driving by… I don’t know them individually and don’t have time to stop and meet them. It makes me uncomfortable to hand cash out with zero control over how it’s used, though I don’t think it’s bad to do. Anyway, our family has been creating bags of useful things that we can keep in our car (and a few bus passes I keep in my wallet) that we can give away that are hopefully a blessing. They are given with love and appreciation for others as fellow citizens of this planet, and I hope that our respect is conveyed.
Over the years, what we put in the bags has changed, mostly based on how much $$ I could afford and how often I gave them away. Right now, I’m making bags that cost $20-$25 each to prepare and they are the most expensive collections I’ve ever made since I often have the opportunity to hand them out. My backup plan is generally one-day passes to the bus system or $5 gift cards to Walmart. Those are nice, because they fit in my purse too.
I’m pretty pleased with these bags – both the type and quality of the items inside feel like I’m giving something more valuable than some other efforts in the past.
Here’s my current list for a single bag. I make about 10 at a time to save with bulk purchases:
1 – Reusable grocery bag (something that looks/feels sturdy from the grocery store) – $1.50
3 – Bic Disposable razors – $1.20
1 – Batiste Dry Shampoo – $5 (Target and the Dollar Tree sometimes carry travel size!)
1 – Abundant Life New Testament – $2
1 – White crew socks – $.85
1 – $5 gift card for Walmart or Kroger or McDonald’s – $5
10+ – Menstrual pads – ideally overnight and thin… I’ll divide this up and put in a sandwich bag – $1.80
10 – Laundry pods – $1.20 (I will take out of large package and put into sandwich bags)
2 – Bags of nuts – $.65
3 – Packs of crackers – $.75
1 – Pack of Bandaids – $1 from Dollar Tree
1 – Toothbrush – $1 from Dollar Tree
1 – Antibiotic ointment – $1 from Dollar Tree
1 – Deodorant – $1 from Dollar Tree
1 – Water bottle – $.30 from local grocery bulk package
1 – Packet of printed info about local homeless missions from the local homeless ministry pages.
My wallet is empty too, so I’ll get a few more $5 gift cards or bus passes to carry for when I’m not in my car. Toothpaste is also a good idea. Probably, there are many more good ideas. I’d welcome hearing from you. Sunscreen during the summer and blankets during the winter…. though those are bulky, sometimes there are lightweight, but warm small blankets for under $5 when they’re on sale around Christmas. Protein bars and ziploc bags and shaving cream and cleaning wipes are good.
If you have ideas or recommendations, let me know! I want to make my dollar stretch as far as it can, getting things people actually want.
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/Solution
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.
follow-up:
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.
next:
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.
afternoon:
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!
