2 years later update

   Time flies when you're having fun, huh? And I never realized I had to change a setting to get notifications of comments. Yikes!

   Ok, E has had 2 sets of x-rays done since my last post - the ones Dr. Dobbs ordered at that time, where he said things were healing well still and confirmed that we did not need a revision surgery, and a follow up set a few months ago, where he said he was "pleased" (BOY - my heart still does a happy dance when I remember that!) with how E's foot was healing. Dr. Dobbs did say we could stop using E's brace at naps and nighttime after the 2012 post, so we've been bar/brace free for 2 years now, and anyone who watches him run would never think he ever had a problem. I can still see it - his running gait is not quite up with the other kids his age, he isn't confident with reciprocal (step over step) walking down stairs, and he can't balance on that right foot as well as his left when trying to stand on one leg. I can also see that his feet still overpronate a bit, but Dr. Dobbs warned us that was likely because it wasn't fully corrected. I'm actually looking into getting him inserts for his tennis shoes, because I see it much more when he's playing soccer (standing, running, and walking around on uneven, grassy surfaces). He's learned to swim like a fish recently, and I'm really happy with that, as the kicking motion is more of an encouragement to stretch that foot than any time mommy or daddy wants to sit with him and stretch it. An almost 5 year old is much less willing to sit there and just let us do that than the almost 3 year old was, but his progress has been (in my eyes) phenomenal, and none of our friends watching him would ever think he'd had foot surgery at not quite a year old.

   Our journey through this has been pretty amazing! I'm so thankful to God for blessing us with this beautiful, sweet, generous, sports-loving, (not so) little boy!!

Finally emailed Dr Dobbs

About our follow up. Last summer, Dr Dobbs had said that odds were good E would not need revision surgery, but if he would need it, it would need to happen before he turned 3. Well, that's October, so I sent Dr Dobbs an email with pictures of E's foot fully flexed and video of him walking and standing. He's ordering us some x-rays, but he said things look good and he does not think E will need follow up surgery. YAY! Now we just need to figure out when he can come out of the brace at nap and nighttime. That's going to be our holdup for potty training overnight (life goes on, even with bracing, right?). Oh, and I totally recommend Oh Crap! Potty Training by Jamie Glowaki. She's a genius.

I'm not so good at blogging when real life happens, apparently

Just wanted to drop in an update - between the move to a new house, the third trimester of pregnancy, and the first 2 months of newborn life, I fell off of the wagon again on blogging. We ended up not buying the Dobbs bar and just bought a new pair of shoes for E's Denis Brown bar. We decided that he was used to the lack of mobility, it was correcting the problem, and there was no need to change courses on that at this late in the game (totally would recommend pushing for the Dobbs bar when you're starting though!). We're actually far enough along now that my hubby is pushing me to email Dr. Dobbs about this summer. I'm feeling confident in where E's foot is that we won't be needing the revision surgery and castings this summer, but he wants me to shoot some video of E's foot and send it to Dr. Dobbs to get his opinion on whether or not we should bring him back for a hands on examination. The flexibility in the right foot is pretty close to the left now, and when he's walking we forget which foot it was that had the surgery - both with shoes off and on. His gait is normal, even from my perspective. We are so very thankful for how well he's healed, especially when I think about how bad his foot could have been. We do still do the exercises, and he still wears the bar at nap time and at night (another question for me to ask Dobbs when I email him - no idea how long we should stick with that, but I think transitioning E to a big boy bed will be difficult if his feet are still braced together). But things are slowly calming down again around here.

Dennis Brown bar and Markell shoes

We've been in the DB bar and white Markell shoes since right before Christmas, when E came out of his post-op casts, so I guess it shouldn't be shocking that in seven months he's grown out of the shoes.  His left (unaffected foot) toes hang way over the edge and the right (affected foot) side isn't too far behind.  I don't think that would actually make too much difference, since the design of the bar prevents him from doing much standing aside from balancing on the screws beneath the shoes and occasionally swinging one foot or the other forward while pivoting and holding on for dear life to the crib bars.  However, the straps look like they are close to splitting, so when we were in St. Louis last month, I asked Dr. Dobbs about replacing the shoes.  I'd always preferred to have the Dobbs bar and AFO's, but if you'll recall from an earlier post, that got shot down by our former surgeon.  I figured that E was used to this set-up, so there was no point in investing in a whole new bar and shoes when all he needed was a new pair of shoes.  We are still in the middle holes, so there's room for E to grow into the bar some more with some new shoes.  I was rather surprised by the orthotist's reaction, although I probably shouldn't have been.  Dobbs apparently thought they still had some of the shoes, so he sent the orthotist in to talk to us.

According to the orthotist, though, most insurance companies have stopped paying for the DB bar and Markell shoes, so they quit carrying them in stock.  We've only been in the stupid things for 7 months, and somewhere in that time frame, the insurance companies decided that they weren't the most effective ones to use (usually why they quit paying for something).  Grrrr.  So, it looks like we'll be getting a Dobbs bar and AFO's after all.  We could probably buy a new pair of Markell's somewhere else, but on the other hand it seems like an opportune time to upgrade to what has always looked to me to be a better system.  We'll be in Florida during the next few days, and one of the first things we plan to do is get in touch with one of the orthotists recommended by Dobbs' office.  I'll be interested to see what the out-of-pocket costs will be compared with just buying a new pair of the shoes, and how much insurance will cover for a new set.

The New Normal

I hope you'll forgive me, as I'm feeling a bit introspective today.  We can blame the pregnancy hormones, I guess.

It's just strange to me - how "normal" can change from person to person.  I have friends with kids who have no physical or mental disabilities, there are kids like E with a mild physical "issue" (funny - I have a hard time classifying it as anything else), there are friends with kids who have major medical problems looming constantly overhead (ie a life-threatening food allergy or a major issue with asthma), and I know of kids with truly life-altering disabilities who are wheelchair bound and require round-the-clock nurse care.  What becomes the new normal for us - daily exercises, brace donning and doffing for naps and nighttime, repositioning him during his play to better use the affected leg, watching to see how E's foot responds to the therapy, and prayers for flexibility; and what is the normal for my friends with kids with medical issues - like my godson whose parents have to restrict where he eats, read all labels on everything, and cook way more often than they ever wanted to in order to provide their son with safe, fun, foods so he won't be left out due to his life-threatening egg allergy.  These are the things you don't think about, or at least I didn't, when I was pregnant the first time.  It's just not what I imagined when I dreamed about life with our new little one.

Now, I hope it goes without saying that I wouldn't trade my child for anything in this world, and I'm not thinking that the small things we do every day for E's foot is in any way comparable to our friend of a friend whose son will not move around outside of his wheelchair for however long we are blessed with his short little life.  But I was describing our trip to St. Louis to some friends without kids, and I talked about the changes in how we were treating E's foot and the possibility of another trip out there next summer to either just have Dr. Dobbs re-check it or to plan for a few months stay to fix it again, and to her it just seemed so amazing.  It's normal for us.  It's actually way better than the worry and concern from last month when we thought E would be facing a foot reconstruction surgery because it wasn't healing perfectly.  But to my friend, it was outside of her perspective of normal.

It's just striking me as funny today.  Happy Friday!

Fell off of the wagon...

It's been a busy 3 months, and I've been lousy at keeping up with this blog.  Death in the family, house under contract and closed, packing up the house, and chasing after a 21 month-old.  Oh, and going through the first trimester of pregnancy.  Lots of positives, but some things had to give, and unfortunately this blog didn't make the list.

When last we spoke, the hubby and I were discussing taking E to see Dr. Dobbs and whether or not to stay with Dr. H's protocol.  Well, the more we talked, the more we decided that Dobbs protocol makes so much more sense, and it also made sense to take E to see him to have his foot checked to make sure it was healing correctly.  We opted to take E out of the AFO during the day, and his gait improved SO much in a short amount of time, as long as he was wearing shoes.  We added stretches, and I took E's brace to an orthotist friend of mine who showed me how to adjust it so the affected foot was in a neutral position.  My only concern was in the last month - we were staying with my parents, who have a pool, and it really gave me an opportunity to watch E walk without shoes on.

I keep him in shoes, as I feel like given his history, he needs the support.  With shoes on, you can't tell there's any difference right vs left.  While barefoot though, he walks with the right (affected) leg rotated out and he does not roll off of his toes (termed toe-off in PT speak).  This can be a common way to accommodate for a limb that is weaker (he was in casts for 5 months and then a solid AFO - weakness would not be surprising), and it can be habit (he favored the right side while casted because he couldn't use it), but it definitely made me nervous.

The visit to Dobbs however, helped put me at ease.  He agreed with Dr. H that, according to the x-rays, E's foot was only partially corrected.  While E's range of motion is fairly good, and he can use the foot in a functional matter, there is some rigidity at the end ranges that concerns Dobbs.  If we lived closer he would suggest a re-do of the procedure (casting and pinning) to complete the correction.  We don't, however.  Dobbs said that most kids with a correction to E's level and some mild rigidity remaining go on to do fine, but there's no way to tell for sure (obviously).  His recommendation was to continue with stretching, make a few further adjustments to the nighttime bracing (bringing the unaffected limb into a more neutral position because it makes no sense to have him braced into outward rotation anywhere and we'll try toeing him in a little bit on the affected side to increase the overnight stretch), and just to watch how E does.  They like to have corrections done by the time the patient is 3, so we'll have until October of next year to see how he does.  If he continues to do as well as he has up until now, we're good.  If his foot gets tighter, the kids and I will be taking a trip to St. Louis for a few months next summer for a revision.

In the meantime, we're moving to south Florida and preparing for a new job (hubby) and a new baby and life with an increasingly active toddler.  Life is good!

Whoops - the last post, didn't!

So I will attempt to re-create that one.  I was re-reading the article "A new approach to the treatment of congenital vertical talus" out of the Journal of Children's Orthopedics published in 2007.  It was the only article I could find published in the last 10 years on the treatment of CVT leading up to E's surgery, and the surgical procedure described was similar to what Dr. H was proposing.  I noticed this time, however, that the authors talked about the post-op bracing being done on CVT kids with an emphasis on keeping the foot in neutral (not in external rotation which was where E was braced into) and on frequent stretching (not recommended by Dr. H).  Now, keeping the foot in external rotation (ER) never made a whole lot of sense to me.  For one, it was the hip that was rotated, not the foot.  It puts no stretch on the outer tissues of his foot as it puts the foot into the same directional rotation that it was when he was born.  Dr. H assured me that was the correct position, however, so we went with it.  I have been stretching E's foot since it came out of the cast.  I'm a physical therapist - it's part of my genetic makeup to stretch.  It's good to stretch if you have NO orthopedic problems.  It cannot hurt to stretch someone who does.  So that, too, made sense to me.  The article does NOT talk about wearing an AFO during the day.  Attached to the article was an email address to Dr. Dobbs, of the Dobbs brace, who happened to be one of the co-authors.  Now, the article was published in 2007, so I figured no way was it still a valid email address.  But, on the chance it was, I sent off an email with a quick synopsis of E's case.  At 10pm on a Friday night.  And I got a reply by 10:05pm.  Seriously.  I've worked in health care for 10 years now, and I don't think I've ever had a doc respond to a question I've asked that quickly - or even close to that quickly.  


He said that yes, that was still his post-op protocol for CVT kids and he braced them differently than club foot kids because the problem was basically the opposite of what goes on with a club foot.  Putting the foot in neutral keeps it in a better position.  He is a strong advocate of stretching the foot, and he does not put them in an AFO during the day unless there is something else going on with the child.  All of which made sense to me.  So, trying to be fair, I called Dr. H's office on Monday to find out what his rational was for putting E in a standard club foot brace and position.  Tuesday afternoon (a much more normal doctor-returning-calls-via-the-nurse time frame) his nurse called back and said he put E in that position because it was the position your foot naturally goes when you lie down, but we could change it if we wanted.  Not really a ringing endorsement, in my book.  


So we're leaning toward switching protocols now.  And Dr. Dobbs has offered to take E as a patient.  However, Dr. Dobbs is located in St. Louis, and the funds are a bit tight right now.  We are looking at the Ponsetti docs down in southern Florida, since we're moving there this summer.  I'm planning to call the 2 closest to us to find out what their protocols look like, since switching over to one of them makes sense.  Of course, we could always still fly to St. Louis - who knows?