A brief study of Clubfoot

Tightly would up legs

Congenital Bilateral Talipes Equinovarus.  I had no idea when I got pregnant that this diagnosis would be in my future.  When we were told at the 20 week ultrasound that our baby would be born with clubfoot on definitely the right foot and probably the left also, we had no idea what we were in for.  We tried to just forget about it, and "pray away the diagnosis".  I'm not poking fun at people that have prayed and been healed.  I prayed my HEART out that the doctors were wrong and my baby was perfect.  I prayed for Colton to be born in His perfect image, and to PLEASE have perfect feet.  I tried damn hard not to google "clubfoot".  And I didn't tell a soul for the next 20 weeks.

Bilateral, meaning BOTH feet

When he was born, I was afraid to ask.  When David didn't say anything right away, I felt elated.  Surely, he would have said something to me the second he showed Colton to me.  Surely he would have given me some indication that all was not right.  But he didn't and I felt elated that I'd actually managed to pray hard enough that we managed to stave off a lifetime health issue.  And then once we were all together in the recovery room, he casually mentioned that, "Looks like he does have that foot thing, but it will be fine".

Casts #1

I felt like my heart exploded into a million pieces.  My nightmare scenario had come true.  Casts, surgery, and 5 years of bracing followed by a lifetime of possible relapse.  My sweet baby infant losing his babyhood to hospitals and doctor appointments.

This is how good his feet looked after 9 days in the first set

I quickly learned the "lingo".  Ponsetti bar vs. Dobbs bar.  Markell boots vs. Mitchell boots.  Plaster casts vs. Fiberglass casts.  AFO's, bnb, bilateral, unilateral, complex.  I felt like my heart was breaking when my MIL insisted that Colton would be "cured" by the casts and would never have to wear his brace.  She believed in the glory of God that He would heal the baby, and his feet would be so perfect that he'd never even have to worry about a Mitchell boot.  When I mentioned to my husband that it didn't work like that, he blew up at me and got very upset that I was being negative and not believing.  But here's the thing; I WAS still praying, every DAY for the road to not be impossibly bumpy.  I cried the day Colton was casted the first time.  I cried when we came back a week later to have the casts cut off with a power saw.  It broke my heart when we gently scrubbed the casting material off his sensitive little legs that were checkered with red marks, dry spots, and painful looking places all up and down his legs, but MAINLY around the ankle area.  I was so optimistic he wouldn't need surgery and could be flexible enough that the casts would be enough.  Again, not to be.

After casts #2

The casting phase was the worst.  I felt like I couldn't even change his diaper any more.  The casts were right up against his diaper to covering the tips of his toes.  The peanut gallery on facebook said the casts didn't look good; they were too bulky and the toes came down too far.  What they didn't know is I was at one of the top rated Ponsetti hospitals IN California.  I didn't even know if they'd accept him as a patient; their referral process is for the BIRDS.  When we got the call that he'd gotten in, I was so happy.  His doctor comes well recommended, and the program is huge.  Kids travel from all over to be treated for clubfoot at the Sacramento Shriner's, so I felt very lucky we'd made it in.

After casts #3

Anyway, his knee was bent at 90 degrees, and he could no longer kick his legs to move gas along in his digestive system. He became very fussy and agitated.  He would wake up the second you tried to put him down at ALL.  He was showing signs of silent reflux, and I just knew he was soooo uncomfortable all the time.  I couldn't even give my baby a bath.  I wanted to cry every time I strapped him into his car seat because with each subsequent set of casts, it seemed like his legs and feet were rotated more and more out until his toes were practically upside down.  After his tenotomy surgery, his fat, bulky casts were squishing his toes and David actually snipped the cast back.  Problem there is by cutting the cast, he made a sharp edge that I could SEE was rubbing a sore spot on his toe.  3 weeks of that misery with no breaks.  At least with the previous 3 casts, he was cut out of them and he got about a 40 minute break each time.  The surgery casts were 3 weeks in, then cut them off and go straight to bnb.

Surgery casts

It took me time to realize that God has been with us this whole time.  I'm a member on several CF facebook groups, and I realize that Colton has been a perfect, textbook case for CF.  3 sets of casts (pretty much the bare minimum), dual tenotomy (most cases end up needing it done) 3 months in 23 hour bnb, then naps/night time for 4-5 years.  And let's ALL be honest.  It's a miracle that most of us have been blessed with "normal" babies.  Birth is so incredible and SO many things can go wrong.  If I have to have a baby that isn't "perfect" (and to me, he IS perfect), then clubfoot is a pretty good gig to have.  There are outlying cases that require painful surgeries, external fixator devices to stretch bones/tendons/ligaments, relapse after relapse, complex cases requiring custom AFO's and serial casting long after the 7-10 week mark, and in some EXTREME cases, amputation.  God has blessed us beyond measure with an "easy" and smooth experience.  We got in with a good doctor, we have good insurance, and the baby has really been cooperative with treatment.  He almost never cried both during casting, and during the removal process.  Dr. Lerman said he came through the tenotomy like a CHAMP.  Our casting techs were amazing (RIP Matt) and the atmosphere is always so upbeat and positive.

Perfect little feet, NO MORE CASTS!

I encourage ALL the parents that are dealing with a clubfoot diagnosis to trust your gut.  DON'T be lulled by doctors promising "early release" from bnb.  Even though the idea of bracing until age 5 is daunting, it's been PROVEN that the relapse rate significantly decreases.  The key is routine, routine, routine.  We gave Colton his free time at the end of the day, and once the boots and bar came back on, it was time to have a bottle and go to bed.  We went with the Dobbs bar because it allows some measure of freedom and movement.  We play with him in it, and let him kick to his heart's content.

Mitchell boots with Dobbs bar.  YES, they were a pain in the butt until they were broken in, but now we have no issues at all.

I'm grateful for our journey; Kody was a pretty damn easy baby.  Colton's been more of a challenge, but still is so, so good.  This is our journey, and we're taking it step by step, day by day.  I'm so grateful for God's grace and for trusting us to be the parents of this incredible little boy.  I'm SO excited to say that Colton has been granted 12 hour wear, and now get his "naked legs" all throughout the day.  He has slept like a CHAMP since the switch on Tuesday (KNOCK ON WOOD).  Once he's Kody's age, he'll not even remember any of this part of the journey.  I'm no longer embarrassed or self conscious about Colton's diagnosis, and I hope to encourage other parents on this same path.  Ask questions, research, advocate.  I love my baby's little feet!!!

After 4 months, we're finally FREE!!!  12 hour wear and hopefully by God's grace no more casts/surgery/long days in the bnb!

Frankly, my dear ... no one really gives a damn

Week 2 down.  What is really interesting about being back in the south is how truly nice and polite everyone is.  I mean, even more so than in GA.  It's SO weird, I'm not used to it!  I love CA for the landscape, but the people leave a LOT to be desired.  My work peeps were far and away the nicest people I dealt with in the entire 3 years I lived there.  I had to get off at "the merge of death" every day; I mean, NO ONE would yield and give you more than an inch of space to bully your way in.  I almost wrecked on more than one occasion.  On the streets here in TN, people not only yield and let you over, they will slow down and wave you on!  That does NOT happen in CA.  In fact, on a very memorable trip to Tahoe, we were trying to make a left turn across traffic.  Some jerkoff pulled up and closed a very small gap that we could have squeezed in to turn ACROSS him, not even trying to get in front of him.  Burns my blood just thinking about it, lol.

A couch full of Bishops

The other day, I bumped into a lady in Kroger.  She turned around, grabbed my arm, and said, "Oh Honey, I'm so sorry!  Excuse me!"  Again, in CA, people will run you over like you are taking up their God given real estate with nary a sideways glance.  TN peeps are very ... country, and I love it!

Neyland Stadium

One thing I haven't missed at ALL is the heat and humidity.  Ugh.  Back to sweating just by walking outside!  We've ridden into Pigeon Forge to eat at the Paula Deen restaurant ... OMGosh, DIVINE!  And yesterday we went into Gatlinburg to eat at the Log Cabin Pancake house.  Again, DIVINE!  We side-tripped to Knoxville to visit UT.  Got to go in the gate and take a few pics of the field; I think Kody may actually go there after all which would be so awesome.  When he was just a baby, I joked that I needed to go ahead and buy the UT diploma frame for him :D  We'll see what happens!

David and I have settled into the new jobs.  Not gonna lie, I miss the rapport that I had with my CA crew, but all the girls at the new place are very nice and outgoing and have been very welcoming.  It's hard adjusting to a new way of doing things, but I've had a lot of ideas to help things run smoother, and hopefully they will!  Love the Dr, she's super nice and of course does great work.  My drive into work is absolutely beautiful with amazing views of the Smokeys.  I've never spent much time in the town of Maryville, and I have to say that I am absolutely in LOVE with it.  Such a gorgeous little foothills mountain town with that small town feel to it.  I can definitely see us living out a LONG time here.  Our house here has a fabulous fenced in back yard, and a PANTRY!  It's weird because the kitchen is almost identical to our Cartersville house ... deja vu!

View on my way into work

Colton went through a little bit of a rough patch over the last 2 weeks; the time change threw off his sleep routine, and he's been up late several times a night.  FINALLY, the last 2 days have been better.  He slept well, and is starting to get back into his routine.  SO grateful.  The cross country drive went well, and Yellowstone is every bit as beautiful as I guessed it would be.  So happy and blessed to be here, can't wait to see how life pans out in the next few years :)

The drive into Pigeon Forge

Finally showing some smiles!

Yes, it's pink.  Don't judge!

SO much to say, so little time

The whole crew

There's so much I want to say on this blog post.  It's a little harder to have the time to take out ye old computer to update, so when I have a minute to do it I feel like a novel is in my head, lol!

SO blessed!

It is with mixed emotions that we pack up the last of our apartment this weekend.  I only have 1 more day of work, and they were so sweet and threw me a surprise going away pot luck.  Everyone signed a card and it just made me want to cry.  It has been a rough road at times, and I ALMOST walked away early on, but I stuck it out and have carved out my own space in the office.

We forced him to go down in a giant lava tube!

I am so excited to say that David and I both will be starting new jobs as soon as we arrive in TN.  We get there on Tuesday the 12th, and we start work Monday the 18th.  David with his same company, I with a new doctor.  We really hit it off during my phone interview, and I'm super excited to begin a new job, hopefully one that lasts a L O N G time :D

Such a blessing to FINALLY have happy baby

Baby is doing AWESOME!  Most nights, he sleeps from 9:30-10:30, just depending on when we get him wound down, to anywhere from 6:30 to 8 the next morning.  WIN!  He will STILL only nap during the day when he's physically ON someone, but at least he's sleeping all night.  He was 13 weeks/3 months exactly yesterday on the 1st.

We didn't tell him our day would involve cardio ...

I want to dedicate the bulk of this post as a shout out to the amazing man that some of you may have heard me talk about.  Words can't express how blessed and humbled I am to have Paw paw here with us.  I felt unbelievably overwhelmed when I started to look for CA daycare for Mav; my sweet 7 week old baby going to daycare??  And the going rate here in our area is $100 per day for infants.  Yes, you read that right.  $1200 for a month of 3 day per week child care.  That amount was putting a serious crimp on our moving savings, especially considering we're having to pay rent on TWO houses for TWO months.  Then, my MIL asked if we would consider having my FIL come out to watch the baby for us.  According to her, before I even went on Maternity leave, he mentioned he wanted to come out here and live with us until our moving date so he could stay with his grand son.  I said OF COURSE!

So many roads traveled, so many more to go!

Paw paw arrived late April, and when I went back to work that last week in May, he was prepared.  Mav was SO fussy and frustrating those first few months, but Paw paw took it all in stride and NEVER tried to pawn him off on anyone.  He's used to having the freedom to be outside, working in his shed or the freedom to hop on his motorcycle and ride down the road on a whim to NOW sitting inside our tiny disaster of an apartment holding a baby for what feels like 23 out of 24 hours of the day.  I just thank God for this amazing man that is in our lives helping us out, and for raising his son to be such a fantastic father and husband.  THANK YOU David Bishop, Sr for blessing us beyond measure, we all love you so much.  Kody is loving having you around, and I'm just tickled to be surrounded by 3 generations of amazing men.  We've loved having you here, and Mav is so lucky to get to spend time with you.

Amazing Grand Father

Little man has an appointment in Kentucky at the Shriner's in Lexington.  Looks like that's where we'll be going for all his follow up appointments.  I won't have a day off during the week anymore, so David will be taking him.  I'm nervous about it, but I've read that the doctor there is as good as the one here in Sac, so that's good.  Apparently there are quite a few orthos out there that "treat" clubfoot but don't actually know what they're doing, causing people to have to travel to either Missouri or Iowa to visit 1 of the 2 world renown clubfoot experts to fix what the other doctors messed up.  We've been incredibly fortunate to be just 20 minutes up the road from the Sac Shriner's, and now to be within 3 hours of the KY one for what will only HOPEFULLY be twice yearly visits.  We just pray for no relapses which would mean weekly casting appointments again. The bnb phase is the "maintain the correction" phase, which goes for 4-5 years. Just pray for us every now and then, we'd appreciate it.

Just for fun, a little Kody baby pic

It is with mixed emotions that we prepare to leave out in less than a week, but I'm just looking at the positive moving forward of our lives.  Excited to see some of our friends and family again, and excited to see what the future holds.  Love and God Bless you all!!!

Always looking forward, but definitely will miss this