An overdue update

I know I haven't been here in a while posting updates.

I have a confession to make.

My lack of postings has not been due to any sort of laziness about this story.  It isn't a lack of interest or "forgetting" about my little project.


The truth is that I've been feeling guilty.


Jonathan is now 4 1/2 months old and his feet look perfect.  I feel like I made a bigger deal about his birth defect than was warranted.

Here is a quick summary of his progress:

 3rd Casting (3/24/2011)

Taking off his casts for the first time at home before his 3rd casting

Taking off his casts for the first time at home before his 3rd casting

Taking off his casts for the first time at home before his 3rd casting

Taking off his casts for the first time at home before his 3rd casting

First real bath at home!!!!!

Look at how far his feet are deflected outwards!!!!

We were finally able to give little Jonathan his first bath at home with the casts off!

He is still wearing the casts for a week at a time at this point.  He is a little fussy, but it's not too bad.


 4th Casting (3/31/2011)

Look how far out they have his feet set.  This is so that when the "spring" back to a natural position, it will be a "normal" one.

5th Casting (4/7/2011)....NO CASTS ANY MORE!!!!!!!!!!!

Today we went for our next casting.  SURPRISE!!!!  Dr. Gamble says that Jonathan's feet have responded so well to treatment that he won't need casts anymore!  We didn't expect this so soon.  We couldn't be more happy!!!

NEXT STEP:  We were referred to CIRS Prosthetic Orthotics today to be fit for a "Mitchell Brace."  This is basically a brace that Jonathan has to currently wear 23 hours a day for a few months.  This will keep his feet shoulder-width apart and keep his feet and ankles pointed out at an outward angle.  This will keep his feet in position while his muscles and tendons are growing.

One of the great perks of this is that he gets to be out of his casts for a whole week while his brace is ordered!


Jonathan gets his brace (4/14/2011)

We went back to CIRS today to pick up his brace

The Stanford Drs help us put it on for the first time

Fast Forward

So.  Since Jonathan got his brace he has tolerated it really well.  I was worried that it would hinder him somehow but it has not so far.

He went from wearing the brace 23 hours a day (1 hour break each day for his bath)....to wearing the brace 17 hours a day (6 hours or so off each day)...to currently (7/21/2011) wearing the brace at bedtime and then six hours or so during the day.

Its great to have him out of the brace for so many hours a day now.  He doesn't seem to notice either way, but it makes me feel better somehow.

Inconveniences

The only real inconveniences have been that due to the width of the brace, his legs didn't fit in his car seat so well.  I had to add some extra padding under his butt for him to fit right in the seat. (We use a Graco Snugride 32).  Also, since he has to wear the shoes, he can't really wear pajamas with footies to bed.  We either buy PJs without feet or we cut the feet out of his older brother's old PJs.  No big deal.

Today (07/21/2011)

As you can see, sleeping isn't a problem for my little guy with the brace on.

Jonathan weighs a whopping 18lbs, 4oz.  He is 26+ inches long.  He is a big boy!!!!  He's only a few pounds shy of his (1yr) older brother.

Summary

As I stated at the beginning of this blog entry, I've been feeling guilty about making such a big deal about this.  Writing this blog at first was a way for me to cope with the fear and uncertainty that I had from not knowing what to expect.  What I've found out now that we've been with our baby boy for 4+ months is that he is fine.  He is perfect.  He will have what I considered to be a "normal" life.  Sure, people give my wife and I strange looks sometimes when they see his brace.  SO WHAT.  I really could care less.

I know that some babies have cases that are more severe than Jonathan.  The fact is that even in some of the MOST severe cases, your child will have nearly perfectly functioning feet.

The only thing that matters is that Jonathan could not be a happier baby.  He is all smiles and he kicks his little legs around with strength and no difficulty.  He has never known living without the brace.  It is normal to him and doesn't seem to bother him.  Our feeling is that his progress has been so good that he won't even need to have his tendon cut at all later.

I suppose if anyone reading this were to take away one message, I would hope that it would be "However your baby is born is how they're meant to be.  They are perfect.  We as parents have fear for our children, but it's fear through the lens of our own lives and experiences.  They will never know differently and they will be happy with almost any challenge to overcome."

I would love to hear comments or questions from any new/existing parents of children with Club Feet.  I don't mind answering your questions.  If you want to know how I felt emotionally during a particular phase of this please ask.  If you have a technical question about the casts or brace, please ask.

Now that I've gotten all the guilt off my chest, my aim is to post here every few months with a simple update on Jonathan.  I don't think the detailed minute-by-minute updates are warranted any longer.  Hopefully for the next few years we can watch Jonathan grow, crawl, start to walk, then run together.

I hope that this gives all of you some measure of hope and inspiration for your own new baby boy or girl.

Love your babies no matter what happens, their smiles will get you through the tough parts :-)