One Year Follow Up Appointment

Our son has been brace free for a little over a year! Today was his first official annual check up, although with attending baby sisters appointments he's had his legs peaked at a number of times in the last year. Dr. England observed big brother walking and the flexibility of his feet. Things are looking great! We'll continue with annual appointments from here on out, but he noted that generally if there is going to be an issue it would have reared its ugly head by now. Whew!

Sister has her appointment in December, but since she was with Dr. England took a peak at her progress. I mentioned my concerns about how flexible her hips are... this girl is out of control! He noted a "click" at about 45-60 degrees and suggested we get an x-ray done just to make sure her socket is perfect. We had time today, so we got it done right away. She's looking great! Kind of a fun little Halloween souvenir too. Having clubbed feet and being a girl just makes her predisposed to being extra flexible I guess. Olympics here we come!

Since baby girl was seen today now we don't have another appointment for six months! We're in the slow and steady part of recovery. The longer she wears the braces the better off she'll be. She doesn't seem to mind them at all, so it'll probably be another year of part-time wearing just like big brother.

Developmentally she pulls to a stand on furniture, crawls (and speed crawls too - when she's doing something naughty), and will occasionally hold on with only one hand.

Late Update...

Sorry I'm a slacker... she had her 9 month follow up appointment at Gillette back in July and there wasn't much to report. She's doing good! We got some new shoes (size double zero) since her old ones were about three seconds away from busting on the strap. The new ones have a roller on the buckle part... I'm still not "sold" on if that helps or hurts in wearing them. Seems like they are harder to get tight enough and the new straps are already looking worn after only two months of use. Hmmm.... :-/


Lena has been a crawling pro since mid-to-end of July. She mostly did an army crawl while holding her hands together... it was kind of ridiculously cute. Only recently she has moved up on all fours and has gotten quite fast.

She has been pulling to a stand for about a month. She hasn't done any cruising on furniture. Mostly just standing there and getting stuck in one spot. Big brother pulled to a stand at 12 months old and was cruising by 13, so if she's following in his footsteps it won't be long before she starts jetting around the furniture. If I had to put money on it... I'd say walking by 17 months... but I know earlier or later still puts her in a normal range. She really enjoys crawling so I think she might lack some motivation to try anything else for a long time. 




She VERY flexible and has her legs out to the side in a near split I'd say 90% of the time. Guess that is just how she is comfortable! She is hilariously impossible to get into any kind of exersaucer or jumper because of how wide she leaves her legs. Good thing she's barely ever in one! 


I've had some mild concerns about her joints in her arms and legs popping when doing diaper changes or clothing changes when I pull on her limbs. I've had friends who have had children dislocate their limbs doing the simplest of tasks, and I don't remember this popping happening with Emerson, so I'm a little paranoid that she is more loose than normal. Guess I'd better learn some skills incase she ends up popping out of socket! Owie!

Big brother Emerson turned 3 years old at the beginning of September and has been brace free for one year now! We have a follow up appointment for him end-October and then a 6-month follow up for Lena in December. We're in the "slow and steady" recovery part with her, which is good... but also frustrating because so many people forget that we even have this part of our daily lives. Braces are on during nap time and overnight for Lena until around 2-4 years old. It's a long haul! 

We Have Lift Off!

Well, baby girl has found ways to be even more mobile as of late. She can get up on one knee and launch herself forward in a crawling motion. She's very sneaky about it (just like with rolling) and I have yet to get it on video to show off. She's been doing it for almost a week now. She is very frustrated about not being able to go forward fast, but the anger is motivating her to get better. :) Right??

We have our followup appointment in two weeks. Her toes have been hanging over the ends of the shoes for about a month, so we are anxious to upgrade out of her size triple zero. They've had a loooong run. About 6 months with each kid. The strap nearly broke through a month ago and has just been hanging on by a thread.

This video is from her first night of crawling. Just shows her getting up on her knees and being crabby... but you get the point. :) Her brother used to do milestones on the number of his birth... so I bet she'll do something amazing on the 12th. Fingers crossed!

She's Got It... Yeah Baby She's Got It...

With or without braces on... she's unstoppable!

7 Months Old

Baby girl is 7 months old now and can sit independently, and as of two days ago can log roll across the floor! Surprised me! I was uploading some photos onto my computer and every time I glanced over at her she was another roll closer to the couch. She made it about 8 feet (about 4 rolls - 2 back to front and 2 front to back). Yikes! She's going at a turtles pace... but still making progress on traveling. I, of course, have yet to get this on film because she is camera shy. HOW do they find the camera even when you have it hidden?? Naughty children!

Sitting independently took her about two weeks to perfect. She started off being able to do it on the bed, something about the squish made her more confident. When I realized how well she was holding herself up I started to get brave about letting her do it on the carpet. She is a little slouchy with it, but I suppose with more strength she will get better at that. She cannot get to a sitting position without help - but if you put her that way she can hold it for a very long time.

She is brace free for about 5-6 hours a day and we are really enjoying it! I am finally able to enjoy some real baby wearing! I think by the time my son was brace free during the day he was a little too old to get used to the idea, and perhaps the Baby K'Tan wasn't comfortable for him. I was able to get an Ergo on babysteals.com a few weeks ago and baby girl seems to love it!

On a side note, from 4 to 6.5 months baby girl only gained 2 oz. This has been a little red flag on my mind. We go back in the middle of June for a 6 week follow up. I'm not sure if anything is wrong with her, if something was wrong with their scale (she was 2 pounds heavier on my home scale after about 3 weeks), or if nothing is wrong at all and she is just going to be a small baby. She was 13 pounds 3 oz and 24.5 inches long. She looks and acts completely healthy, so its hard to imagine anything is wrong.

Matching brother/sister outfits purchased from Bellarina Boutique.

Same stinky shoes, new angle

She loves grabbing her shoes!! Getting close to smacking herself in the face.

Had our checkup today! Dr. England says she is looking great and he put in an order to change her Ponseti brace angle from 70 degrees (which is almost straight outward) to 50 degrees. She has become so flexible that he was worried about too much of an over correction. Clubbed feet is corrected through over correction - but there is such a thing as too much. 50 degrees is still out pretty far (in fact our son had one foot at 70 and the other at 50 the whole time). So, this should be just fine.

And... drum roll please.... we have graduated to only wearing the braces during naps and overnight! She is three months ahead of our son on that note. Waaaahoooooo!!! Right now her nap schedule is two 45 minute naps in the morning and a long 2-3 hour nap in the afternoon, followed by a tiny nap in the evening sometimes, and then sleeping solid from 8:30pm-7am. We're thinking the two morning naps would be a bit much for on/off on/off, so our routine is going to consist of keeping the braces on until after her first nap. Then the braces will be off during that waking period plus the second morning nap and the waking period after the second nap. Then the shoes will be on during her long afternoon nap. She might get a short shoe break in the evening, just depends on what we have going on. So, really she's just gained probably 3 hour break from the shoes instead of a 30 minute one. I am super glad to have a squishy baby for any amount of time! :)

Wishful Thinking?

Standing on her tiny toothpick legs. Body of a 5.5 month old, calves/feet of a newborn!

We have our first follow up appointment since January next week. She has been in braces 23.5 hours a day for about four months. With spring/summer coming up I keep having wishful thinking thoughts that next week they will tell us she can graduate to naps/overnights only with the braces. But I'm not holding my breath. It would be really nice to have her be brace free during the day, or even just for two hours for pool parties. My son had his braces on 23.5 hours a day until 9 months old, so since baby sister seems to be a clone of her brother I anticipate we will be wearing braces for another three months. Sigh.

Her 3-5 toes are still curling under, in fact pinky#5 is almost gone!

Check out those chubby ankles! LOL! Roll Roll Roll!

New Milestone Report: Only thing I can think of is that she is getting very good and grabbing things and bringing them to her mouth. She will also reach up and hold onto things hanging on her play gym or on the carseat. Must be working on upper body this week! :)

Elimination Communication

We've been a little lazy the past 6 weeks because I had a knee surgery wasn't comfortable sitting/squatting to help her sit on the toilet. We still do it about once a day, but not nearly as diligent as we were in January. She also hasn't been waking up with dry diapers anymore, so I'm not sure what that is all about. We'll continue at our lazy pace because if anything it is keeping her familiar with the purpose of a toilet.

Roller Girl

Well, baby girl has done it! Rolling over at 5 months old. She has done it a handful of times, and I have yet to get a good one on tape. So... I cheated a little bit and put her on slippery material so it would be easier for her. But I promise she has done it on the carpet before. I just never have the camera ready when she does. D'oh!

Braces won't slow this baby down! :)

Dobbs Dynamic Bar

In more recent years there have been some advancements from the typical Mitchell Sandal and Ponseti bar that my children have both worn. Dr. Dobbs invented the Dobbs Dynamic bar that allows for more movement by having the shoes be on a hinged bar instead of a stationary one. Many parents swear by them and say they are a great benefit to have for allowing the baby to become mobile easier. There is a great video on their website to show the same child crawling with the Ponseti bar VS Dobbs bar.

I didn't even know they existed until a few months ago, and the option of having one was never given to us with our son. For that matter it has never been offered to us with our daughter either, I only found out about it online through support groups. I am on the fence about obtaining one for our daughter since they are not covered by our insurance and really the straight bar didn't hold my son back too much. He was crawling at 11 months and walking by 18 months. There is no guarantee he would have done this any earlier by having the mobility of the Dobbs bar.

I've heard out of pocket that the bar runs around $150, and that there is also an adapter you need to get if you are going to use the Mitchell Sandals. For now my daughter seems perfectly happy in the standard bar and shoes. She has no blisters, no trouble sleeping, and does not seem frustrated. We also have no trouble with compliance because we are very strict with ourselves and avoid the extended shoe break pity parties that I think many parents fall into by feeling sorry for their children and leaving the braces off for longer periods of time then they are supposed to do. You know who you are...

I'll keep the idea in my back pocket, but for now we are going to stick with the standard. Worked well for our son.... why mess with a good thing, right? :)

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.