Home School… Year 2019-2020

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This is a rough draft as I begin ordering next year’s plan based off of this year’s ending point.

Slowly taking shape…
Anybody else find that preparation is one of their favorite parts? First, I decide which subjects. Then, which curriculum. Then… lots of review to make sure I haven’t missed anything or made it too heavy. Then making a chart for keeping track fo the schoolwork done as the year progresses. Then prepping those things that I’m setting up myself. Then shopping! Then setting it up on the shelf. Oh, I do love planning and preparing. Way more fun than the implementation for me. 😀

Starting with just my grade-level kids… I’ll add on Jordan and Daniel later when I get my head in gear for them.

Guiding thoughts: we’ve been strong on general education, reading, easy writing, science and arts. We have been really light on history and social studies and formal writing curriculum. Next year, therefore, I’m putting my focus on history and writing this year. I did try a history curriculum last year, but it was unsuccessful.

Work in progress:

History Supplementation:
Liberty Kids for Revlolutionary War period
How the States Got Their Shapes, Season 1 and 2
The Ultimate Guide to the Presidents
America The Story of Us, Episodes

Anna – 7th Grade
Writing – Institute for Excellence in Writing, level B
History – Sonlight D (American History 1 of 2)
Math – Teaching Textbooks 7
Social Studies – Christian Light Education level 5 (American History)
Science – Dog 4-H and Christian Light Education 6
Spelling – N/A
Occupational Education – Cooking, Housekeeping, Babysitting, Money Management and Budgeting
Language – N/A
Health & PE – English Country Dancing, It’s Not the Stork, …
Reading – N/A
Art & Music Appreciation – Art class & homework
Bible – Experiencing God, Youth (9 weeks) and The Fruit of the Spirit: A Bible Study for Tweens or Priceless: Who I Am When I Feel…

Maggie – 4th Grade
Writing – Institute for Excellence in Writing, level A
History – Sonlight D (American History 1 of 2)
Math – Teaching Textbooks 5
Social Studies – N/A
Science – Unit Studies by choice (Reptiles, pets, birds, ferns forests, knots, etc. Read/Watch/Projects/Observe/Report)
Spelling – N/A
Occupational Education – Cooking, Housekeeping
Language – Growing with Grammar 2
Health & PE – It’s Not the Stork, The Care and Keeping of Me, Kids’ Club Classes
Reading – N/A
Art & Music – Art class?
Bible – The Purpose Driven Life Devotional, book or audio (365 days)

Carrie – 1st Grade
Writing – Penmanship (my choice) and Cursive (her choice)
History – Sonlight D (partial)
Math – Singapore Math 2A and 2B
Social Studies – Christian Light Education 2
Science – Unit Studies (Doctor-related books, kits, shows, etc.)
Spelling – N/A
Occupational Education – Cooking, Housekeeping
Language – N/A
Health & PE – It’s Not the Stork, Kids’ Club Classes
Reading – Christian Light Education 2
Art & Music – Art class?
Bible – Christian Light Education 2

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Nemours May 2019

Packing everything for five people for two weeks…

Anna and I sometimes hung out together as the “old people” while the others played.

What a gift to be able to meet a mother I’ve long admired from a distance and receive her gifts. Thank you for coming, Susanna.

Monday – 13 May, 2019

Checking in and enjoying his bare legs a little bit longer.

Dr. Nichols gets pretty silly. It’s almost like she likes children or something.

Dr. Nichols wrapping plaster in one of her snappy outfits and trying to keep plaster off her shirt since she was presenting at a conference later that day.

Dr. Nichols fixing up Daniel’s cast… child life volunteer helping distract Daniel from any fear and discomfort, other cast room team people being Dr. Nichols extra hands.

Dr. Nichols and Reenee (Physical Therapist) often repeat… “Behold the power of casting!”

He did it!

We made heavy use of this wagon. Daniel liked to drag a stick on the ground as we went.

Back in our room.

Thursday, 16 May, 2019

Scared of the saw, but cooperating.

Off comes the cast! Notice we had the bear match Daniel?

Fruit roll ups for the girls and cords for the little boy….

First casts coming off! Somebody should teach me how to do my hair better. Sometime when I’m not traveling.

Off come the first casts!

Wiggle, wiggle, wiggle! Most frequently used words of the physical therapist.

Change wasn’t very visible when the first casts came off.

Getting second casts.

Lying down and listening to music while they cast his feet first (and his knees second.)

Feet wrapped in plaster… and now fiberglass. Holding the form while it sets.

We put the first two sets of casts on in a sedation room, unsure whether he would need sedation in order to get through it. He didn’t… he was amazing and we used no sedation for any casts and moved to the regular cast room in the future.

Too bad it’s blurry… the whole team taking care of the man of honor.

Dr. Nichols is both fast paced and patient. She’s also very skilled and considerate of us as people. Worth the trip.

I was impressed with Daniel not panicking just from so many people in the room!

Daniel picked his colors each time!

Both of us sweating at the end of these casts and Daniel pulling his hair… some things are hard to do, even with everything set up to succeed. Daniel was really brave through it all, but it was hard.

Striped casts!

That weekend…

Longwood Gardens!

Lovely!

Big girl.

It was quite warm. And Daniel was uncomfortable and fussy. And I was exhausted. Would like to visit the east coast with older kids and no medical treatment someday.

Finding a way to play in the dirt without getting dirt in his casts…

LOL – I have a picture like this that’s better of me, but… oh well! We visited Longwood Gardens and it was lovely, but I was too tired and Daniel too uncomfortable in the stroller for us to enjoy it.

Hanging out and watching lots of tv every night. I’m amazed they all slept well as sometimes I was up at night helping Daniel!

Daniel loved the kitchens… 2-3 microwaves and 2 ovens in each means LOTS OF CLOCKS!

Monday, 20 May 2019

Plugging ears and crying some as the saw cuts his cast.

The cast guy (he helped us multiple times, but I can’t remember his name!) took off his watch for Daniel to hold to help him have a good experience after crying from the scary cast saw.

One off!

The most fun of the day was the rice table!

Studying a club foot model.

Learning from a club foot model. I want one to study.

Reenee massaged and wiggled Daniel’s foot bones while Daniel played in rice happily.

His heel is not straight, but look… the sole of his foot is on the ground!!!!

Evaluating, stretching, supporting… this was our longest PT session while there. Was enamoured with his progress.

Daniel doing physical therapy and standing on a soft mat.

It was great for the girls to be given a little free rein in the PT room.

PT session wrapping up. Look at his knee sticking up!

Ronald McDonald House of Delaware…

We really appreciated the generous and delicious free food offerings at the Ronald McDonald House. It took a huge practical and financial burden off of us.

Poor Maggie felt like this more often than she liked.

Making boxed macaroni and cheese… while about six kinds of pasta are being served hot in the main area. 🙂

Mature, kind girls, all.

The doctor had an emergency surgery, so we hung out at the hospital for both lunch and dinner until she was available to put the third casts on. (Back to the rest of 20 May)

Daniel cried during this cast application… it was a long, late day. He recovered really quickly after getting his promised reward of a new cord! On this day, Carolyn decided to become a doctor after being silly with Daniel’s doctor… it may have involved shooting exam gloves across the room at each other.

The girls and Daniel all enjoyed decorating his casts. Look at how open his clubbed foot is!

It always did my heart good to see Daniel feeling good and walking and playing again after a few days of soreness from each new cast.

Our room at the Ronald McDonald house was about as organized as this wagon by this point.

Friday, 24 May 2019… surgery day! Surgery was scheduled for 12pm… then 1:30pm… finally started at 2:30pm. Daniel only had apple juice that morning, but he did great. I was running on fumes at this point, but hanging on, because I knew home was close.

At least there were cords everywhere.

The IV lady got his IV in the first try and then all there was to do was wait! Lots of waiting.

That’s me after laying my baby on the OR table. I felt good about walking him through all the hard stuff and that we’d survived until 2:30pm without food. Also, I knew how good I looked in scrubs.

BENDING KNEES! (in the OR, before surgery)

Look at his severely clubbed foot after the tenotomies!!!! That’s mighty straight and had only casting and minor surgery!

Foot with vertical talus post tenotomy… Doesn’t even look like his foot to me, but it looks beautiful!

Poor post-operative boy. Tired and disoriented and, as we learned, in some significant pain from ambitious stretching of his knees that the surgeon relieved by bivalving his casts the next morning.

25 May 2019 – Flying home. Left the Ronald McDonald House at 1pm and got home at 1am EST. My dad met me at the home airport and Brian had beds made and tucked us all in. We were up some with Daniel as he continued to be fussy from fatigue, disorientation and pain.

Struggling to be comfortable in the airplane…

On our first plane headed home. I’m glad to be done with that for now!

The day after surgery was rough. Partially because his legs and feet hurt from stretching. Partially because he was sleep deprived. Partially because we traveled from 1pm-1am. And partially because he was disoriented from narcotics. So glad to be home.

Daniel is doing well. It’s four days post surgery and pain is minimal now. He still complains as the tylenol wears off, but that’s all he has needed in order to function. I am glad we turned that corner and will learn how to live again, but with casts. We fly back for two days of appointments in three weeks to get braces for his feet… both AFOs and KAFOs. Still lots I don’t know, but I’m pleased with his care and progress. And relieved. Lots of relief to be home. I depleted every bit of adrenaline I posessed and made it through more than I thought I could. I can do a lot with a husband who believes in me and catches me when I get home. Resting and recouperating here. Glad to be through this.

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Daniel’s Treatment – Phase 1

Daniel has Noonan Syndrome and Arthrogryposis Multiplex Congenita. The treatment we’re doing right now focuses on those things that are most important for Daniel’s ability to have more mobility… specifically, his legs and feet.

Daniel has severe clubfoot on one side. It’s not a common club foot (congenial/ idiopathic)… it’s teratologic, meaning, associated with a condition and involves more malformations. He’s also old enough that his bones have grown and shaped somewhat to fit their curled-under position (they are “deformed). He’s also very stiff, with much less stretch and flexibility for correction. I think it might also fit under the category of Syndromic.

His other foot has Congenital Vertical Talus, which is a very different foot. The main standing bones in his feet are “collapsed” and he has a rocker bottom foot instead of an arch. The talus bone is turned from where it should be.

Also, his knees don’t bend. Well, maybe up to 30 degrees on his good side. Getting to 90 would make such a huge difference in what he can do. That tightness in his knees affects his feet too.

Anyway, all that to say that we took 18 months to track down a specialist who is going to have the best chance of getting his feet functional. We found a doctor that specializes in unusual feet and people like Daniel. She collaborates with all the other doctors whose names come up in the arthrogryposis and CF or VT communities and I heard a great deal of positive feedback about both her and her team. She’s a doctor people ask opinions of if they’re treating a foot that doesn’t look “like a foot.”

If you’re a club foot mama, Daniel’s treatment is going to look different than your experience, because his body is pretty unusual/different and he has a lot going on.

What is the treatment?

1. Stretch casts. These are awkward, uncomfortable, and somewhat painful on the first couple days. The feet (and knees, in this case) are casted with a gentle stretch in the direction they need to move. That’s it. We’re staying here on the east coast (we live on the west), in order to change casts twice a week.

2. Tenotomies: The day before we fly home, Daniel will go in the OR for several tenotomies. His feet are stiff and malformed… this should hopefully get his feet over a point they would move on their own. He will wear casts to hold their new position for roughly 3 weeks. (And then I fly back again.)

3. Braces: Daniel will likely wear braces for the rest of his growing years and maybe beyond. They will hold the corrected position, but allow freedom to live and grow. When we come back in 3ish weeks, we’ll remove casts, and fit him into his custom braces. We’ll stay another day to adjust them for any issues we notice in the first day of wear.

4. Repeat. Daniel’s feet are not going to be 100% corrected after this. The goal is to get them corrected enough to be braceable… and to get him back out of casts to live and grow and strengthen and be a little boy! This is going to help him WALK. In 3-6 months, we’ll be discussing what the next step of treatment is. Maybe more stretching casts. We’ll have more surgeries too, but I’m not sure when. There will hopefully be more and more time between appointments as we approach whatever is Daniel’s best foot “shape.” The fewer and more minor the surgeries, the better, long term. I anticipate that he’ll need some more “significant” care for his legs when he’s in his teens.

His knees are not an easy fix and we’re not sure on them yet. The amount of stretch we got with this casting is impressive and I’m eager to see what life is like with knees that can bend more than a few degrees. If he needs more bend to do what he wants, I’m not sure what we’ll do. One option that came up is a femoral shortening surgery, which scares me a bit, so I’m releasing that to my future self to deal with.

Sorry no photos… I’ll add them when I’m not working off my cell phone.

For those wondering, I’m pleased to recommend Dr. Reid-Nichols at Nemours duPont hospital in Delaware.

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Homemade Plaster Casts – Practice Round

Families that cast together, stay together.

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…





Step 2:
I ordered the following on Amazon…
1. Mabis Precision Lister Bandage Scissors Shears, Stainless Steel – $6.50
2. Oscillating Tool, 1.5A Oscillating Multi Tool – $33.99
3. Medline MDT221200 Non-Sterile Tubular Stockinettes, 2″x 25 yd, 1 Roll – $10.05
4. Gypsona S Plaster of Paris Bandages – $22.81
5. Disposable Elastic Gauze Bandages 4 x 4 – $9.99
(That wrap was not the right stuff, but it worked. If I ordered again, I would probably get this or similar for a thicker padding: Cotton Cast Padding)
6. DIY Plaster Statue Molding Kit – $34.75
I already had some exam gloves… both to look like a doctor and keep my hands clean. Optional.

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.

A bizarre scene on our kitchen table.

Memories made. Good ones.

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Struggles

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.

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