Five Month Update

Jokingly having her sit independently. Her tripod legs are useful in this ruse.

We're still plugging away at around 15 weeks in braces and haven't had any appointments since early January. We go in next at the beginning of April and I anticipate we'll get a "doing good" pat on the back from our doctor and then have another appointment three more months down the road. Our son wore his braces 23.5 hours a day until he was 9 months old, so I anticipate that our daughter will graduate along that same timeline. I guess you could say we're about halfway through the "braces all the time" phase. Time is just flying (eye roll and sarcasm). I still look at her sometimes and can't believe we are doing this all over again.

Milestones are still in the future. She gets close to being able to roll from back onto tummy, but just can't quite get enough momentum going to breech all the way over. She does do better practicing this with the bar and shoes on as she is just more comfortable that way. When the bar is off she just is not used to having her legs be two separate entities. She has started to be able to rotate around in bed and often ends up in a different direction than the one I laid her down on. Going to have to start thinking about how to contain her on the bed so she doesn't go over! We co-sleep and she is just on the mattress which is low to the ground. Not that falling from any height is good, but atleast we aren't talking about a 3-4 foot drop here.

We've started letting her have some time in the bouncy saucer exerciser. Without shoes on it does some good stretching just like the physical therapy we do with her doing her daily shoe break. We limit her to 10 minute segments twice a day (once without the shoes and once with) as those exercisers are hard on hips, and we were warned to be extra careful.

Here's a fun photo taken with baby's all born about the same time. Ella in purple is the oldest (born prematurely at 29 weeks), then 10 days later my baby girl was born, and then our man Chase was 3 weeks after that. Pretty so we won't be able to set the baby's like this as Lena just might get her whale tail brace going and crack her friends over the head. Look out folks!

Blog of Other Blogs

Yep - just a blog to tell you where you can find other blogs of parents with clubbed feet:

www.clubfootbaby.com

http://wherewillthislittlefoottakehim.blogspot.com/

http://www.kendall-itsmillertime.blogspot.com/

http://talipestogether.com/profiles/blog/list

http://blog.paulpounder.com/?p=172

http://parentingisntforpansies.blogspot.com/

http://clubfootmalaysia.blogspot.com/

http://lisasmithblog.typepad.com/cadens_club_foot_blog/

http://www.hannon3.blogspot.com/

hannahammonds.blogspot.com

If you have a blog please post it below and I will add it to the list. :) Thanks for sharing your stories!

End of January Update

Baby girl is doing fantastic in her recovery and is getting dangerously close to rolling over onto her side. She gets 30 minutes a day to practice without the brace, but she is even getting close to doing it with the brace on. Big brother is also getting dangerously close to being kicked in the face when playing too close to her... this is going to be an interesting year for injuries...

Off topic - she has started to do something amazing... she's going pee on the potty! I have heard of Elimination Communication (EC) before, but never pictured myself doing it. For about a month she's been waking up from 2-3 hour naps with a dry diaper. I often joked with my husband that she was going to be potty trained before our 2 1/2 year old son (who soaks a size 5 overnight diaper just during his nap time - yeah... not even sorta ready).

Yesterday I decided to experiment by sitting her on the potty. She smiled and laughed as I made a hissing noise at her... and moments later I heard a little trickle. Could NOT even believe it.

I met a woman about a year ago who was doing EC and it seemed like it would be a lot of work. But now after doing it for two days I've decided it is waaaay easy and worth trying! This woman taught me about the hissing noise and explained it was a trigger to let the baby know that it was "okay" to go pee. It's a bit like running water and how it helps even an adult to go potty. After nap time I set my daughter on the potty and just a few seconds in she is peeing away. It's worked 5/7 times we've tried it. Pretty good odds if you ask me. We're still waiting for the all mighty #2... but I feel like it's not far off!

Online I was connected up with Emma Kwasnica who I was told is a EC guru. Her 15 month old daughter has been diaper free since BIRTH. She recommended I obtain a copy of Ingrid Bauer's Diaper Free book at the library and visit www.diaperfreebaby.org . I've requested a copy of the book from our library and will hopefully get to read it next week. I am tempted to learn how to make my own baby panties... because they are darn cute.. and there is no way I'm spending $8/pair. I'm talented enough to make some. :)

Want to do a guest post?

Now that we've gotten into the "slow and steady" part of recovery I'm going to have less and less to blog about I'm sure. If anyone wants to do a guest blog just let me know! I'd love to share your story and any photos. If you have any ideas for blogs you could help me out by letting me know them too.

Developmental Delays

Let me just preface this by saying I am NOT saying that people with clubbed feet are mentally handicap. I've been in "trouble" before on this topic when people take it the wrong way. It is just that children of any physical handicap sometimes fall behind in other areas because their bodies and brains are working so hard in one area.

The first year of his life we had about 4-5 friends with boys all born around the same time. By everyone's first birthdays my son was just learning to crawl when everyone else's children were running. It was at that point that we started hanging around children 4-6 months younger than him, but he seemed to identify with them more. It wasn't a conscious move on my part to have him hang around younger kids, it just kinda happened.

Around 15 months our pediatrician became concerned that our son wasn't talking. At first I was reluctant, thinking that our pediatrician was being a little overly concerned as I didn't think 15 months was really an age to be concerned about lack of talking - especially for a boy. But then he explained how our son might really need an extra push in the verbal area since his body was working so hard just on crawling and walking. We figured it couldn't hurt, so we set up an appointment with a program in our area called Early Childhood Intervention.

Teachers came to our home and used the Bayley's Scales of Infant Development to determine if he qualified for help. He scored a 76 out of 80... just barely "failing" the test, which then qualified us for the program. It is an in home program, so a teacher comes to our house once a week for an hour until he turns 3 years old. At that point he can be re-evaluated and possibly qualify for continued assistance, though it would no longer be in home.

We are currently almost a year into having assistance and our son has BOOMED from barely babbling to having complete 3-4 word sentences. Super pleased with his progress and it is fantastic to be able to have verbal communication with him!

Follow up - 5 weeks in braces

Baby girl had her follow up appointment after just over a month in braces. Things are looking fantastic and we do not have another appointment until April (3 months out). We can go in sooner if something looks wrong, but for now it's the long haul of correction.

I had a nice chat with our doctor about my concerns about how far off the typical Ponseti correction timeline both of my children are following based on his recommendations, and my mind is at ease. Typical Ponseti timeline is casting, tenotomy surgery, 2-3 months in braces 24 hours a day, and then overnights until the child is 2-4 years old. 80% of clubbed feet cases fit that timeline, but my children are both falling into that gray 20% area where no tenotomy is necessary and they are so flexible that the braces are done with on the 2 year end rather than the far 4 year end.

Maybe I've watched too much LOST lately, but my brain is thinking "whatever happened happened" and "whatever will be will be". I'm going to relax and enjoy my children and not worry about relapses.

Another thing that put my mind at ease is we spoke about my son's foot rolling inward as I previously blogged about and our doctor pointed out that a relapse would actually be rolling the other direction. Duh us! Clubbed feet curls inward so the children would be walking on the outside area of the foot. Our sons foot are rolling just as they are supposed to towards the inside and will slowly get more neutral over the next few years as his tendons tighten without wearing any braces. Let's just hope they stop at neutral. :)

And baby girls toes 3,4&5 happen to all run in the same "tube" where the achilles tendon is running through so as the 70 degree angle of her feet are stretching the achilles they are also stretching her toes. So, the under toe curling might be correcting itself at the same time. How about that.

Physical Therapy

So since doctor has not recommended a tenotomy we've been doing physical therapy of stretching her a few times a day. In the last two weeks her ankles have turned quite a bit more, and even in the last week we could suddenly get the middle buckle one hole tighter, which really pushed her foot down nicely! We are pleased!

We have a follow up appointment on January 3rd, and we will be discussing the skipping of the tenotomy again, relapse chances, and all kinds of good stuff.

I was not aware that there is a standard Ponseti recovery timeline and our doctor does not appear to be following it. According to the Ponseti International website there should be a tenotomy, wearing of the braces for 2-3 months all the time, and then overnights until the child is 3-4 years old. My son did not have a tenotomy, wore the braces all the time for 8 months, and then overnights until he was just shy of 25 months old. Very different than the standard schedule. I am normally one to just trust what the doctor says is best - after all... they are the experts. But I also know that they are human and therefore flawed. I'm torn a little on what to do for my daughter. I don't want to insist on a tenotomy for her if indeed it isn't necessary. But the only thing I can think of that is worse** than going through clubbed foot recovery twice is also going through two relapse cases. Oy!!!

**of any deformity I would take a child with clubbed feet - for us it has not been that bad - I'm being melodramatic.