6th & Final week of casting...?

Well, today was full of surprises. We went in for our 6th cast removal, fully assuming that we'd be getting a tenotomy afterwards and then having 2-3 additional weeks of casting after that. I was even more sure that it was going to happen since our doctor, who normally wears a suit, walked into the exam room in operating room scrubs and he had two assistants with him. He examined her feet, stretching them as far as they could be forced. He said it could get her to about 20 degrees up, and that ideally he'd like to see 25 degrees - but that ultimately he wasn't sure that just doing physical therapy (the "french method" he called it) of stretching her daily wouldn't work just as well as the surgery to get that extra 5 degrees. So, for now, we are holding off on the tenotomy and have 5 weeks to see if we can manually stretch her feet. Fingers crossed!!

Second surprise was that her feet have grown enough to skip the AFO boots and go straight into the ponseti bar.... size triple zero - just like big brother had. I guess there is actually one size smaller than that, so what a moose!! :) Her feet are both stretched out to 70 degrees making them almost totally to the sides.

We waited to put her ponseti shoes on until we got home and had a chance to give her a real

bath. During the bath we suddenly noticed that the tops of her feet looked very bruised, which they did not look that way while at the hospital. I quickly asked around to my clubbed footed support groups and so far it sounds like it's pretty normal so long as it goes away in a couple days.

When we first got home from the appointment we showed our son the baby's new shoes. He immediately ran away and started sucking his thumb. I then realized he probably thought the shoes were for him! He's been without his braces for about 4 months - but he must still remember them. Once we put them on baby sister and

explained that they were baby shoes only he calmed down.

We had some trouble getting her ankle down into the boot as she was resisting bending. I think next time we redo the shoes (usually just after baths) we'll try putting the shoes on while breastfeeding her so she is relaxed.

First night with the ponseti bar on was a bit of a struggle. My daughter had been sleeping 4-5 hour stretches at a time, but last night she was up probably every 2 hours. She is a side sleeper, and I think the new angle of having her leg up in the air was making her upset. Plus I discovered

in the morning that her left foot had slipped out a little bit, so the heel was raw from rubbing on the shoe. :( Oops. I've made them tighter now and she hasn't done much complaining since then.

All night I had two angels on my shoulders. One telling me that the baby was complaining because the shoes bothered her and that I should take them off to relieve her pain, and the other one reminding me that I have to suck it up and leave the shoes on as it's the only way she'll ever get used to them. Second angel won. I left the shoes and bar on all night, even though my sleep deprived angel really wanted me to cave. I think tonight will be easier because I was so strong.

Tenotomy

Tenotomy is a very common surgical procedure for children with clubbed feet. This and related procedures are also called tendon release, tendon lengthening, and heel-cord release (for tenotomy of the Achilles tendon). I was lucky to avoid all surgeries with my son, but since my daughters achilles tendon does not appear to be stretching as well as his does I am worried that surgery will be our fate.

A tenotomy happens in 80% of all clubbed foot cases. The surgery involves cutting and stretching of the achilles tendon. Sounds horrible, right? Well, without it a child's feet wouldn't heal properly and they'd end up walking on tip toes for the rest of their life since their calves would be so tight the heel of the foot couldn't reach the ground.

Tenotomy is performed in order to lengthen a muscle that has developed improperly, or become shortened and is resistant to stretch.

Club foot is a common developmental deformity in which the foot is turned inward, with shortening of one or more of the muscles controlling the foot and possibly some bone deformity as well.

A muscle can become shortened and resistant to stretch when it remains in a shortened position for many months. When this occurs, the tendon that attaches muscle to bone can shorten, and the muscle itself can develop fibrous tissue within it, preventing it from stretching to its full range of motion. This combination of changes is called contracture.

During a tenotomy, the tendon is cut entirely or partway through, allowing the muscle to be stretched. Tenotomy may be performed through the skin (percutaneous tenotomy) or by surgically exposing the tendon (open tenotomy). The details of the operation differ for each tendon.

During a percutaneous lengthening of the Achilles tendon, a thin blade is inserted through the skin to partially sever the tendon in two or more places. This procedure is called a Z-plasty, and is very rapid, requiring only a few minutes. It may be performed under local anesthesia.

Tenotomy carries a small risk of excess bleeding and infection. Tenotomy performed under general anesthesia carries additional risks associated with the anesthesia itself.

After tenotomy, the patient may receive pain medication. This may range from over-the-counter aspirin to intravenous morphine, depending on the severity of the pain. Ice packs may also be applied. The patient will usually spend the night in the hospital, especially children with swallowing or seizure disorders, who need to be monitored closely after anesthesia.

Casts are applied to the limb receiving the surgery. Before the cast is applied, the contracted muscle is stretched to its normal or near-normal extension. The cast then holds it in that position while the tendon regrows at its extended length. Braces or splints may also be applied.

After the casts come off (typically two to three weeks), intensive physical therapy is prescribed to strengthen the muscle and keep it stretched out.

Properly performed, tenotomy does not carry the risk of mortality. It may cause temporary pain and bleeding, but these are usually easily managed.

Reference: http://www.surgeryencyclopedia.com/St-Wr/Tenotomy.html

5 Weeks In...

Well, we went into the appointment with happy thoughts of this being our last week of casting. We started off thinking it would only be two weeks (based on what the doctor told us) and it turns out we're on cast #6 already.

During the long process of removing the old cast and putting on the new one the casting tech made a comment about us just having a "few more weeks of this business." Her comment caught my attention, but I figured I had to of heard wrong. Later that night I asked the question on Facebook to all my clubbed footed support folk regarding casting after the tenotomy surgery. Turns out - after the surgery there is a cast left on for three solid weeks after the tenotomy. Ugh! So, in the end our dear daughter will have 10 weeks of casting... double what big brother had done. Boo!

One positive note - the rawness from behind her knees was almost completely dry! Yay for no cheesy knees!

Apologies, I forgot the camera so there are no pictures from this hospital trip.

Support Groups

I've discovered many support groups online to obtain information and sympathy from. One thing I realized while trying to find these groups is that not all group owners have them advertised very well. Try searching for "clubfoot" instead of "clubbed feet" and you'll get a whole new crop that would otherwise be hidden.

Here are groups I am a part of;

Baby Center Community:

Clubfoot Support - http://community.babycenter.com/groups/a52555/clubfoot_support

Clubbed Foot Club - http://community.babycenter.com/groups/a6714901/clubbed_foot_club

Facebook:

Parents and Friends of Children with Clubbed Feet

The Dr Ignacio Ponseti Appreciation Society

Yahoo:

Non-Surgical Clubbed Feet - http://health.groups.yahoo.com/group/nosurgery4clubfoot/

What groups have you found?

Celebrities Born with Clubbed Feet

Kinda fun to check out famous folks who were born with clubbed feet. So many athletes! Looks like maybe the corrective process gives kids super powers! Ha! Look out Olympics, here we come!

http://www.clubfeet.net/celebs.php

4 Weeks In...

Well, todays appointment raised my blood pressure a little bit. Sometimes it's hard to be going through this a second time because the medical staff assumes that I am old hat at it, but we must remember that I had it pretty "easy" with my son and everything was 'best case scenario' with his recovery.

In conversation with the casting technician I mentioned that I thought the doctor was having us do these extra few weeks of casts to avoid the tenotomy surgery (where they cut the achilles tendon). The casting technician told me casually, "Oh no, she'll be getting it done, her cords are very tight still." Gasp! No! :( Not my baby!

Then another casting technician came in to assist with putting on the new cast. I was making

small talk conversation again and mentioned how I kept forgetting to buy a pacifier to use during this procedure. It takes about 90 minutes to remove old casts and put on new casts. That's a long time for my aching back to be bent over letting my baby suck on my thumb. There are no breaks for breastfeeding, and crying baby most of the time because her sensitive legs are being messed with. Initially we decided not to do a pacifier for her because it was only supposed to be 2 or 3 casts. We let our son have a pacifier during the procedure 2 years ago because we knew that it would be 6 weeks of it. I joked that I hadn't picked up the pacifier yet because I was in denial that we're still on the casting phase. She then casually mentions to me that I should get mentally prepared for the tenotomy next time I see the doctor (which is 11/29/2010). I inquire further and find out that after the casts are removed it is highly likely that the tenotomy will happen right then and there. They do a numbing cream on the skin and then local anesthetic to block all sensation to her ankles/feet. Then a little slice... cut and stretch the achilles tendon... and close her back up. Very quick procedure... but surgery on a 7 week old baby none-the-less. Eek gads!! I'm glad that the techs were so frank with me, even if it was disheartening to hear. Without talking to them I would have walked into the appointment on the 29th with thoughts that we'd be taking off casts for the last time and then going to get her pretty AFO shoes set up. Surgery immediately never even occurred to me. Now I know to make sure my husband is with me at the hospital and that we have extra child care for her son set up at home (Yay for Grandma!)

So, random info about her process... it's still raw behind her knees and now she has another raw spot forming in between her toes on the right foot. She did the cast extra high this time so we can separate her toes for cleaning, but we have to keep an eye out for swelling with that much of her foot exposed. She's also started a habit of curling her pinky toe under, and the tech suggested that I should try to uncurl it every time I see her doing it otherwise it can lead to other problems. She'll end up walking with the top of her toe on the bottom if that makes any sense.

Comfort Measures - TIPS & TRICKS

Casted legs are heavy and pull on the hips when a baby is sleeping on their back. Rolling up a towel and putting it under the knees helps take some of the pressure off and hopefully help baby sleep better. I've also seen parents do this in the car seat if the angle seems to be too steep to let the legs rest easily.

3 Weeks In...

Bye, Bye casting room......

Or more accurately... see you next week. :( We're not done with casting as previously expected. During her first appointment the doctor thought 2 weeks would be enough. This was her 3rd week... and we're still not there. We might only be HALFWAY. I have mixed emotions about this... with my son we were done earlier than expected - and I like that much better.

Right now her ankles can be bent/forced into a nice "L" shape, but the doctor wants them to be in that position just while resting. The casting technician was surprised to see us back and seemed to not necessarily agree with the doctors decision. She made a comment about him "striving for perfection on this one, eh?" I certainly want my child to be "perfect" so I won't disagree. Another week or two is only going to improve her stretching and lessen her chances of surgery. Her achilles tendon was really tight, he's hoping a few more weeks of casts will stretch it enough that we won't need the tenotomy (surgery to clip and stretch the tendon).

During the visit with the doctor she spit up all over the place, I think she disagrees with the diagnosis too. This is the only photo I took of her with the casts off... she's half dressed after the disaster spit up. I was too crabby to do any other photos.

ETA - Her skin underneath her knees are still funky, so they packed extra cotton on there again this week. The right one was almost healed, but lefty was shiny, raw, and gross. :( Poor baby! The doctor said that the benefits of giving her skin a break don't outweigh the risks of letting her be cast free until it heals.

Decorate - TIPS & TRICKS

Make casting fun! Decorate them... have friends sign it every week... let older siblings color on them... crochet little leggings... tons of ideas to make the process a little brighter. :)

Odd Sized Shoes - TIPS & TRICKS

When all is said and done for clubbed foot babies sometimes their feet are different sizes. My son's are about a 1/2 size off from each other, but we just wear the same size. I know some children have a bigger difference and need buy two pairs of the same shoes to get the right sizes or find places that will let you order different sizes. I found these places can help parents like those of us with different foot sizes by providing mix matched shoes.

Hope these help some of you too.

National Odd Shoe Exchange

Birkenstock Express

Mixmatched Shoes For Sale

Hatchbacks

$h*t Happens

Sigh. No matter how careful you are... at some point in the casting process... it... will... happen. Babies poop a lot and it's only a matter of time before some get on the casts. We're 16 days into her recovery and shockingly have been able to stay poop free until this point.

Tips for staying poop free - make sure the diaper is tucked in and that skin is visible all the way around the leg. Use removable cotton wrapping on the edge of the cast, if a diaper leaks sometimes the cotton will take the blunt of it saving the casts. Our hospital gives us rolls of the stuff for this very purpose. Trouble is that the cotton wrap does move on the leg when you put clothing on, thus why ours failed this time. The poop got on the sock which is inside the cast and doesn't wash easily.

Any other ideas?? Thankfully we're done with casts tomorrow (knock on wood), but other ideas might help the next family who has a little one in casts.

Two Week Appointment

We had our appointment this morning to change out baby girls casts. We were hopeful that today would be the end of casting... but it looks like one more week is our destiny. Her feet aren't quite in the "L" shape yet. Fingers crossed that this is the last week!

They used the buzz saw today to remove the casts. We had brought our own tools to the clinic

to remove it ourselves like we did last week at home, but they wouldn't let us do it. Too much of a "liability." I didn't get any photos of them removing the casts as I was too busy comforting our screaming child. :( It is very loud and scary!

Once the casts were removed the technician discovered that our daughter has some raw skin under her knee from it being skin on skin with no air for so

long. She tucked some extra cotton into the fold this week

to help keep it dry and allow for some airflow.

She has certainly gained some noticeable weight this week. We weighed her between castings and she was 8 pounds 8 ounces (she was 7 pounds 3 ounces at birth 3 weeks ago). Check out the crease where the cast used to be! Ha! From the thigh to feet she is still a newborn as the casting doesn't allow her to grow, so the fat just stops at the point of the cast.

FYI - The orange/yellow stuff on her legs is glue.

Gassy Baby - TIPS & TRICKS

All babies have some gas/upset tummy issues, but I believe it gets worse when your legs are constricted in casts or braces all day. Kicking and bending helps move that air around in their bellies! Right now the casts are too heavy for her to be able to move her own legs, so by rolling them around I am mimicking what a typical baby would be able to do. I'm not sure if it helps... but it makes sense to me!

What I tried to do with both children is lift and roll their legs up a few times a day. I mostly did this during the few wake periods they had in a day - figuring if they weren't in casts this is when they would be doing these motions on their own. Be careful not to do it after nursing - they'll just spit up! Oops!

I just lift the legs up and rotate around from side to side.