Update on Miles' Casting

Miles has been undergoing treatment for the regression of his club feet since November 1st.  He has had a series of casts, changing them every 1-3 weeks.  He had surgery on December 18th where they cut the achilles tendons on both legs and were able to get his feet turned out quite a ways.  The doctor felt he would still need a couple more casts after surgery so that is where we're at right now.  We went on the 30th and were surprised and delighted to get short leg casts, coming up to just below the knee.  This makes it a lot easier to get around and allows Miles to get used to walking again.  The first couple of times he tried to stand up he was like a wet noodle, he just sunk to the ground and he asked why he was so heavy.  But since then he has to started to be able to support his own weight and has been taking steps with help.  It is just like teaching a toddler to walk but he's much taller.  He seems a lot happier with this style cast and kept saying on the way home how much better his legs feel.  The doctor must be happy with his progress, otherwise I don't think he'd have given him the short leg casts.  We go back on January 6th for a final set of casts, then James will take him on the 17th to get those casts removed and get him fitted for his braces/AFOs.  I am grateful they have been able to speed up the process for us and the baby expected on February 11th.  I would just like to know James will be present for the birth of that child.  All the things we have been doing with Miles have made my third trimester seem to go by much quicker than other pregnancies, which I am grateful for.  We have also been very blessed to be sponsored by the local shrine in Akron, Ohio, who have paid for our gas, tolls, and meals while we've been going to Philadelphia.  Not to mention all the toys Miles has received from the Ronald McDonald House and Shriner's Hospital.  Ronald McDonald House also invited James to their "Santa Shop," to pick out toys for all our kids for Christmas.  And all the meals people have brought to our home throughout this busy time.  We have not wanted for much and I am sometimes overwhelmed by the generosity of others.  

Miles' upcoming casting and surgery

Miles was born with club feet and a diagnosis/categorization called "Arthrogryposis," which means multiple joint contractures.  His wrists and hands are also affected by his Arthrogryposis.  He underwent serial casting (new set of casts weekly where they slowly stretch his feet) and then a double tenotomy (cutting the achilles tendons) when he was 9 weeks old, which is a pretty standard procedure for treating club feet.  He has done pretty well since then and has walked with AFOs (orthotics) since he was 20 months old.  Unfortunately we have noticed regression in the last couple years and have been talking to his doctor in Akron about what to do and had a second opinion in Cincinnati about what to do, all while waiting to see a doctor in Philadelphia who has specialized in Arthrogryposis, Dr. VanBosse at Philadelphia Shriners hospital.  We have been on that waiting list for two years.  Finally we were able to see him for the first time in June.  He recommends serial casting and a double tenotomy, the same procedure Miles underwent as a baby.  He says that no matter how the feet are treated (read: even if you do everything right, you'll still have regression), they will go back to how they were when he was born, but as he gets older, there will be more time in between regressions, and eventually they hold, they stay and you don't have to keep doing it.  I am SO glad we finally got to see this doctor and we didn't go with other opinions.  In April we were getting impatient and thinking we needed to just move on and see someone else, which was when we scheduled appointments with Cincinnati Children's hospital.  The day I got home from our first appointments in Cincinnati, Philadelphia Shriners called us with an appointment in June.  Just to put things in perspective, these are the different recommendations each of the doctors had for Miles:

Akron-remove a small wedge from each of Miles' tibias

Cincinnati-remove the talus from each ankle and tilt the calcaneus

Philadelphia Shriners-serial casting and double tenotomy

The casting will be long-leg casts that come above his knees, and usually they bend the knees in his casts so they can't come off, so he will be in a wheelchair from November 1st until probably mid-January.  We'll do the first set of casts in Philadelphia this next weekend, do the casts in November and December in Cincinnati, and then assuming casting is going well, he will have the surgery on December 18th in Philadelphia.  

I'm not too worried about the procedure itself.  I do anticipate that life will be pretty different with Miles in a wheelchair.  There will be adjustments that we will need to make and some things we haven't thought of yet.  I worry about how Miles will adjust to being in a wheelchair.  Through all of this I think the greatest blessing is the encouragement President Ballard gave a few years ago for us to counsel together as families.  Counseling as a couple, with Miles, and as a family has made the most difference in hopefully achieving a good outcome for Miles.  

https://www.churchofjesuschrist.org/study/ensign/2016/05/saturday-afternoon-session/family-councils?lang=eng

Baby Girl Mathatas, coming February 2020!

It's been a while since I have blogged, as in like 4 years.  But let's be honest, it's been a while since any of us have blogged, or read a blog, or even thought the word "blog." I have no idea if anyone will ever read this but I have felt lately like blogging would be good.  It's like journaling which really helps me emotionally.  Since I last blogged we had a baby boy, Thomas, in April 2018.  I had a miscarriage in March 2019 and we were really lucky to get pregnant right after that and are now expecting a little girl in February 2020.  We had our 20 week ultrasound this past week.  I was honestly going to be happy with either a girl or a boy.  I thought having a girl would be exciting but too much to expect.  Each time I have gone to that 20 week ultrasound I have gotten the gender I was kinda hoping for.  It's surprising to me and probably obnoxious to many others.  I was thinking about it this morning and how Heavenly Father answers our prayers in different ways to teach us different things.  I don't know where I heard this but I have heard:

He answers:
Yes-to give us confidence
No-to correct our course
Withholds an answer-to help us grow. 

So maybe Heavenly Father is trying to strengthen my confidence in the fact that He loves me, maybe I sometimes do know what's best for me.  I don't know.  There are probably a million reasons we are having a girl now and only a few have to do with me.

More than anything, it was so reassuring to have them do the full anatomy scan and see that everything is as it should be.  Perfect little feet and hands, heart, brain, etc.  What a huge blessing, considering the miscarriage (with three ultrasounds and nothing that really looked much like a baby), the things our other kids have had, and their cousin Ethan, who was born with HLHS. 

Birthdays!

We did two family birthday parties for Katie and Miles.  Katie TOTALLY knows what to do with a cupcake, no shyness there.  We had broccoli cheese soup (Panera's recipe) for Katie's birthday because I remember that was my last meal before she was born, and it tasted SO good, even though I was miserably pregnant and not much tasted good then because I would get full fast, or heartburn.  Hopefully we can make that a tradition until she decides she would rather have something else to eat for her birthday.  And speaking of deciding what you want for your birthday, we helped Miles pick some of his favorites:  smoked sausage, fries, green beans, broccoli and edamame.  And he loved it!  The rest of us are still retaining water, but, oh well.

Halloween

"Must have orange drink..."

"Oh, man, this stuff is so good."

"Why don't my parents ever buy this stuff???"

Fall Update

First Day of School

He was pretty excited!

Marathon Relay team minus 2 team members

A cute picture of Katie and James on surgery day

And then after

We took the kids to see the Columbus temple (Miles had been asking about the temple because I overzealously said one day, "Miles, do you want to go to the temple someday?"  He said yes, and he doesn't understand "someday," so he kept asking us after that when we were going to go to the temple) one cold and rainy night, mostly we wanted to eat at Red Robin, but they were packed! 

What happens during General Conference:

 James' watermelon

:(

The first ever Quaker Steak in Sharon, PA

Fritter 5K-"Will run for donuts"

A nice picture of Miles from tonight



Summer So Far

Payson Utah Temple



Making tu-tus



The garden box James made us

Sampling peas from the garden

at the 4th of July parade in Ashlan

Selfie!

Swimming at Lakeside

Riding the train at Lodi

Can you tell it was hot?!  I think Miles is excited about the bell.  HE LOVES TRAINS!

Two train enthusiasts, this was a replica of the train that carried Lincoln from DC to Illinois

A little soggy after visiting Niagara Falls via Maid of the Mists

Outside the Palmyra Temple

Niagara Falls, the American Falls