On Hope

I was thinking about suffering lately… of grief and loss and pain and brokenness and sorrow and sickness. You know me, I always fall asleep thinking of daisies and sparkles! I am not a glum person, nor like Eeyore, but I don’t find it easy to ignore or move on from suffering after I experience or witness it. So I think about it and consider what it means.

Scared and hurting.

I’ve decided that suffering is inherently bad. It represents brokenness and pain, neither of which I would expect to find in heaven. My greatest hope is that heaven is where the brokenness is mended and the sorrows overcome. God catches all of our tears… He knows and tenderly responds to our troubles. Suffering is the experience of… all the things hurt by sin.

It seems logical that we ought to try to avoid suffering. And yet, in some bizarre twist, my experience is that suffering is also… good. It’s confusing. How can something awful also be beautiful, or produce beauty? Like light is brightest when beside darkness, I wonder if beauty is more striking for it’s presence in the heart of pain? I’m not sure, but I have friends who have endured deep suffering… and they have become more accepting, more gracious, kinder, gentler, and more loving. Certainly, not everybody changes for the better with suffering, but change, we do.

While I was traveling across the country (again) to do (painful and scary) treatment with my little child who has already experienced too much suffering… and as we have gone through deep waters the last five or more years as a whole family, I have been impacted by suffering really personally. I have discovered that I highly value and appreciate people who have been through suffering as well. I and too many of my friends have had to give up control of our lives. Most of us cannot say of all our children:
“But my child is healthy, so that’s what matters.” Because many of our children aren’t healthy.
“My children are doing well in school.” Because many of our children struggle with learning.
“My child is happy/sweet/loving/kind.” Because many of our children are deeply impacted by trauma/neglect/etc.
“I anticipate my child being successful.” Because many of our children have mental health diagnoses.
“I expect my child to live a long life.” Because many children go home to Jesus before we’re ready.
“We are an involved part or leaders in the church/club/community activities.” Because many of us are impacted by challenging behaviors and partially homebound.

Not an easy day.

There is a lot lost. And in a place very different than the life I anticipated, Brian and I have decided to live. We’ve decided to thrive here. Here in the land of loss and brokenness, we’ve made our home.

I realized I am so glad for the changes suffering caused in myself as an individual that I am not sure I would change the hard parts of my own story if I could. And I have begun thinking about suffering as a positive thing. Positive! I no longer consider avoiding suffering to be a worthwhile goal. Though we flinch when we see it coming and we don’t bear it particularly well, we do wade into it with familiarity. It’s cold, aching pull on our hearts and bodies means our priorities are refined. Our Christian faith has been stripped to the bones. We survive if we can and extend a hand to others in the same flood of blood and tears when we can. And it comes and it goes. Oh, and the suffering of many of my friends is much deeper and more prolonged than anything we’ve endured… but suffering is not something that one ever compares for the sake of belittling. Suffering is measured by the one enduring, not the one observing. Be generous and gracious to all you meet.

You know something that grows really well in suffering? The fruit of the Spirit. Yeah, bitterness and trauma and hate and depression live in the valley of death too. But right there also grows kindness, gentleness, self control, patience, love, faithfulness, and even peace and joy… though my own peace and joy plants are often overrun with anxiety and depression.

You know what else thrives in suffering? Grace and mercy. The kind of grace and mercy that I must extend to myself when I have failed at everything that is or was important to me. There are specific things that I identify as being important to my belief in myself… belief that I’m successful and valuable as a human being, as a mother, as a wife, daughter, sister, friend, and community member. And the last few years of suffering has broken the majority of those expectations. Goals have been demolished to the realm of the impossible and unlikely. Those kinds of expectations that are beautiful and full of hope and fullness… expectations that can’t be taken away without a tremendous personal loss.

Some simple examples: As a wife, I haven’t been able to provide food for my family reliably. My husband has had to do a lot of food preparation.
I haven’t been able to overcome my depression and anxiety or the ways it makes me unavailable to my family in different ways at different times.
I haven’t been able to develop a deep or sincere relationship with my oldest son, I often cannot comfort him or understand him or help him.
It’s a very real concern that we may not be able to keep him home and safe as he grows up.
There is so much that I just can’t fix… and I tried to, until my own health declined seriously.

Losing control over my life and being carried along by God’s grace and the kindness of friends, neighbors, and strangers has changed me. You know how trees change shape when weather and geography shapes them? The dwarfed, weak, bony cliff-hanging trees. The trees overhanging water with their roots twisted back behind them as water cuts away at the roots that used to extend below before the water washed the soil away. The giant
lightning-struck oak trees with a cracked, craggy dead trunk towering above the still-green side branches. The leaning, arched and curved trunk of a tree growing out of a mass of undergrowth, stretching to reach some light. Beautiful trees, but broken trees. Some short-lived and some of great age and long-suffering. These are the trees I identify with now.

As night gives way to morning.. as a seed dies to give rise to growth… as labor pains give birth to life… so suffering and loss give birth to something beautiful. Acceptance. Grace.Mercy. Kindness.

There is pain. Oh, have mercy Lord, there is still pain and struggle and sorrow and the battle against bitterness in my heart is not over. But I can recognize many of the people, who, like me, have experienced or who are continuing to experience things that break them. There is something of grief laid over them and a glow of… a glow of something like love that is at the genuine heart of our souls. I am drawn to it like a hot stove on a cold winter night. I love it like a hearty stew when I haven’t eaten all day. I am refreshed by it like a big glass of fresh lemonade when the sun has made me weak with heat. It’s beautiful to me, like seeing somebody I miss until I’ve ached, standing at an open door with their arms wide open. Maybe it’s the grace and acceptance they extend toward me? Maybe it’s the way their priorities and efforts reflect the refining effect of suffering. I don’t know, but it makes for sweet encounters.

This suffering has refined my hope in Christ to something razor sharp.
My faith is where I stand fast. All that’s left is usually just a little seed. But a seed it remains.
My love is where I live, pouring out what I have… both for myself and those around me.
My hope… my hope is for when things will be made whole. I long for that. I’m depending on it, really. My hope is deferred.

And that’s how I think about suffering lately. I hate suffering. But I am glad for it. And I dread it. Oh, to live is Christ… my brother and Lord in suffering. And to die is gain. I’m looking forward to the good long hug and nap room I’m sure God has been setting up for us. And peaceful gardens. And hiking trails. And relationships mended. And hearts, minds, and bodies made whole.

That’s all. Just thinking about the kind of suffering that is unendurable. And the kinds that can be borne. And what it looks like to continue to live, what it looks like to retain hope.

Spending time at a special needs family camp… beauty abounded – both campers and staff.

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Hello!

I love this blog for tracking memories and processing my thoughts and experiences and sharing both struggles and triumphs. It’s a way to be real… both with myself and with friends about adoption and parenting and personal life and growth.

And I haven’t written in awhile, because life has been faster than I can process. And I wanted to write, but I keep getting bogged down by trying to think of how to “catch up.” But that’s not really possible, so I’m just going to dive in.

1. Daniel and I traveled back to Delaware to remove his surgical casts and get fitted for braces.
2. Daniel’s personal and physical growth and health triumphs and struggles
3. Anna and having an almost-teenager
4. Maggie and her interests
5. Jordan’s development and life
6. Carolyn’s six years old!
7. Home… the care and keeping of our property
8. Self care – my health, strength, and goals
9. Marriage and how to make life work with a family as we are now
10. Brian and hiking and on being a good husband

I definitely can’t talk about all that.

Let’s just summarize based on what has impacted me most deeply and by what is appropriate to share. (My girls don’t appreciate me sharing certain details of their lives and I respect that.)

This Delaware trip was really hard. It was short, but hard. Day 1, we traveled… waking at 3:45am and heading to the airport… two airplanes and a drive to the Ronald McDonald House. It’s exhausting. The hospital is half a mile from the Ronald McDonald house and Daniel screams (fairly predictably) in cars, so I walk the distance most of the time with Daniel in a wagon.

Arriving in Delaware…

Day 2: We walk (ooooooh, east coast humidity is awful!) and get his casts off (yay!!!) and I get to see where his incisions were and what his feet look like now. We walk back and bathe and bathe and bathe those yucky legs and feet until six weeks of nastiness are soaked and scrubbed off and sensitivity is halved from “intense” to “touchy.” Walk back and get braces fitted…. and ajusted…. and changed again… and Daniel takes his first steps with his new feet. The walk back to the RMH was horrible… we were both tired and he was in so much pain he couldn’t move or speak and he avoids telling me where pain is, because he thinks it will make it worse. So dinner was with us both in tears and I took off the tall braces and went back to the little ones. And his foot didn’t stay in the braces properly, but that was okay, because we had another day for adjustments.

Dr. Nichols taking off the surgical tape and snipping sutures… getting our first look.


We can see the sole of his clubbed foot from below!!!!!


Very first steps on his new feet with physical therapist Reenee!

Day 3: Walk to hospital at 7am (4am home time) to start process to remake braces. Walk back. Walk to hospital again for a really great physical therapy appointment and doctor appointment where we all admire his feet and are proud of his strength and saw Daniel walk a good LONG distance on his new feet with just his short braces on. Also figured out why the other braces were hurting. Walked back. Walked back to hospital AGAIN to e fitted into new braces – took some time for adjustments and so forth. LIke the new braces much better. Pray they are gonna work out. Walk back again. So tired.

He walked a long ways!

Day 4: Pack up, clean up, clean room (RMH, we do our own room cleaning), make everything fit into suitcases and head to airport. Flight is delayed. Cry. Flight is delayed more. Cry more. Flight is canceled. I’m stuck at the airport from breakfast until dinnertime… going nowhere. Finally get on a flight that will get me halfway home. Land. All flights home are canceled. We sleep in the airport and I cry. I was really quite fragile and struggled more than I was okay with. Does that make sense? This was all intense and my endurance was shot. A flight attendant took pity on us and overbooked a flight so that we could get home before lunch the next day instead of evening the next day. I had no more food and no more diapers for Daniel. People were very kind. But I was still stuck. Made it home. Never want to leave again.

Ahhh… sleeping on a hard floor with airport announcements blaring at irregular intervals. Praying Daniel doesn’t wake and run away while I close my eyes. Wanting and needing to be home.

Pictures

I hate the KAFOs. I mean, they make the nerdy part of me thrilled and they are incredibly practical from a functional standpoint. But I don’t like them. I haven’t taken time to analyze or articulate why. But after all that work (and i haven’t paid the bill yet!), we haven’t used them once since coming home. Daniel’s knees don’t hardly bend still, and maybe that’s why it’s worked out. He didn’t take long to gain the strength to hold himself vertically and supported for significant periods of time. His walking speed has gotten faster and more coordinated and more upright. Brian just built him a walker with wheels out of PVC so that he can walk more while we’re at camp next week (lots and lots of asphalt areas), but we felt we had to “hurry and build it before he walks without it.” That’s a pretty incredible feeling. I can’t believe that he’s so close to independent walking!!! Yesterday, he was walking while holding my fingers and he barely leaned on them. I’m stoked.

Charging around the house…


Carrying huge amounts of dirt inside. This from a boy who was too overwhelmed to play in the grass last summer.

Daniel has dropped a lot of weight. He went from 30 pounds to 27. He couldn’t eat much during his treatment and after surgery and he apparently needs every calorie we feed him. That’s frustrating for me. He’s mostly back to normal now (what he can eat) but it still fluctuates with stress. Also, he has athletes foot and moisture isseus in his AFOs that I’m learning to manage.
I want to make his back look like this picture from last November….

Look…. no ribs showing!

Right after getting home, Brian packed up and got to spend a couple days enjoying time with my brother and his good friends for a sort of pseudo bachelor’s party weekend. SO GLAD he got to go. But I am physically and emotionally spent. Adrenal fatigue and all that. Brian and i work to take turns having periods of respite, but when we’re BOTH tired, it’s hard. Also – his time off of work is used up except for what we budgeted for two summer holidays, so I can’t call him home when I’m having a day where I struggle to get out of bed and care for the house and kids. Thankfully, things are going pretty well here, but whew, it’s a good thing!

Hiking was part of the fun!

Speaking of taking care of things, we hired my dad’s business to do some work around the property that will make tending sections of our property much less labor intensive. He and Austin did a really fantastic job and it feels GOOD to see some work done. Also, Brian and I have prioritized my personal health needs to the top of the stack and I’ve been digging in the last two weeks, pursuing a better diet and exercise. Intense physical exercise is really good for my mental and emotional health and it’s critically needed for everyday care of my boys as well, who need lots of physical support. Besides that, I’d like to make it to see and play with my grandchildren, and I wasn’t on track to do that. So sugar is mostly cut out of my diet and 3x/week, I’m participating in a bootcamp program at a Crossfit gym. Brian and i miss our evenings together those three days, but it had to be done.

Carrie had a tooth pulled, Anna is cooking a lot, all three girls rode on Grandpa’s truck for the 4th of July parade in Molalla, I’m going to the grocery weekly, Daniel is playing in the dirt a TON, and both Brian and the girls are taking an interest in learning how to backpack. Pediatrician and other appointments (dental, cardiology, nephrology, endocrinology, opthamology, phsychiatric) appointments are scheduled coming up in the next few months… mostly Daniel for those specialists. Brian and the girls went to his grandmother’s funeral. We’ve attended English Country Dances and I’ve been trying to prep for the next school year. My hands have been too swollen (or fat?) for my wedding bands in the evening, so Brian and I designed a ring that we ordered on etsy that I love. It’s symbolic for things he and I have been thinking through.

I’m sweaty and tired and feeling good!

The English Country Dance scene…

Our pediatrician has a nice student shadowing her right now. Think he’s going to make a good pediatrician from first impressions.

We love our pediatrician!

Parade!!!

<3

Daughter cooking… son standing. Couldn’t ask for more!

Carrie was awesome getting her tooth pulled.

Hiking!

Faith. Hope Love. All other things will pass away, but those three will remain.
Today, those look like specific things to me.
Faith – Stand fast. I will not let this be taken from me.
Hope – Made whole. One day, all the broken things will be made whole.
Love – Poured out. Every day, I pour out love for my children, my husband, and myself. Every day, I pray God will give me love to pour.

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Home School… Year 2019-2020

Archive:
*2020-2021 School Curriculum
*2019-2020 School Curriculum and Review
*2018-2019 School Curriculum and Review
*2017-2018 School Curriculum and Review
*2016-2017 School Curriculum and Review
*2015-2016 School Curriculum and Review
*2014-2015 School Curriculum
*2013-2014 Review

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. 😀

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.

Addition facts game: Shut the Box

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 – Christian Light Education 6
Spelling – N/A
Occupational Education – Cooking, Housekeeping, Babysitting, Money Management and Budgeting, Dog training
Language – N/A
Health & PE – Ballet, English Country Dancing, It’s Not the Stork, It’s Perfectly Normal: Changing Bodies, Growing Up, Sex, and Sexual Health
Reading – N/A
Art & Music Appreciation – Art class & homework
Bible – Experiencing God, Youth (9 weeks) and 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 You , Tae Kwon Do
Reading – N/A
Art & Music – Art class and homework
Bible – The Purpose Driven Life Devotional

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 – Tae Kwon Do
Reading – Christian Light Education 2
Art & Music – Art class and homework
Bible – Christian Light Education 2

Jordan – 5th grade w/ IEP
ABA 20 hours/week at home

Daniel – 1st Grade w/ IEP
He knows his letters and numbers, but can’t write them well.
He likes stories, but doesn’t sit for listening to read-alouds yet.
Has PT goals and there’s an expectation for more medical treatment.
Is continuing to learn English and develop clear speech.
Resists following instruction, sitting still, and paying attention.

School:
*PT: Keep him on his feet as much as possible by having lots of play options that require standing.
*Following instructions, sitting still, paying attention, writing/drawing/coloring/fine motor: Introduce Kumon books
*Sitting still, language development, paying attention, etc.: Read some of our favorite picture books aloud to him.
*Math: Introduce the concept and symbols for adding and subtracting

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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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