Wednesday, December 22, 2010

Relapse Concerns


My 2 year old son - front & back view of his legs

I've been much more involved in clubfeet support groups going through all of this a second time, and I've heard many more stories about relapse. The leg braces are supposed to over correct the feet and once they stop wearing them the feet start to turn back inward. But it's supposed to stop at the normal neutral position. That doesn't always happen.... sometimes it just keeps turning and turning and suddenly your child is walking on the side of his/her foot. My son's left foot has always rolled a little to the outside, and our doctor has assured us that when his feet get to a more neutral position it'll naturally fix itself. He's only been out of braces for about 5 months.

One thing that has been bothering me is other parents being surprised that my son did not receive the tenotomy surgery (cutting of the achilles tendon). They are surprised/confused because they had been told that without a tenotomy there was a 100% guarantee of a relapse. This concerns me on two levels - first off... is my son doomed to start the whole process over again? And/Or second... these poor family's who put their children through surgery when it may not be necessary!


video

I am posting the photos and video in the hopes that those who have gone through a relapse might weigh in their opinions. Is there anyone who did not have a tenotomy who was able to avoid a relapse? I don't believe my son is relapsing right now, his legs are more forward facing than they were 5 months ago when he stopped using the braces - and our doctor wasn't concerned about how they roll onto the sides slightly. BUT - I am willing to listen to criticism/opinions as I know that doctors are not always right.

EDIT 1/3/2011: We spoke with the doctor and my sons feet are doing exactly what they are supposed to be doing. A relapse would actually be rolling the complete opposite way, so that the outside edge of his foot is on the bottom. Whew! Feeling a little silly for not thinking it through, but glad we got some answers. http://adventureswithtriangles.blogspot.com/2011/01/follow-up-5-weeks-in-braces.html

Monday, December 20, 2010

Breastfeeding a Triangle


Breastfeeding with leg braces on is an art form... but with pillows and some patience anyone can do it! :)

Thursday, December 16, 2010

Two Weeks in Braces

So it's been two and a half weeks of bracing. We've had one week with the original shoes that had the crappy rubber insert and then the rest of the time with big brothers old shoes. Our doctor said it was "very resourceful" of us to switch to the old shoes.

Baby girls feet are still angled down when at a resting position. We've been doing her physical therapy stretching, but I have a feeling the tenotomy will be our destiny.

Here is a photo of big brother's legs after one week of braces and then little sister after two weeks... see the difference? Daughter is in blue and our boy is in brown. Yeah... she's doomed.



Our doctor also said that there isn't anything we can do about her toes right now.

Side Sleepers


Many club foot babies appear to have the desire to sleep on their side in common. During the casting process this is easy to do, but once the leg braces are on it is near impossible. Lately I have been using our boppy pillow to prop her up on the side and she loves it! Boppy's are not meant for children to sleep with, so use at your own risk.


With my son we just propped him against the side of his sleeping area. Worked okay too!


What tricks have you used?

Monday, December 13, 2010

Giant Clothing Pity Party


Let me start this post off by saying do not feel like I am ungrateful for gifts we have received. Many of these I probably registered for before we knew that our children had clubbed feet. Why would someone ever think their child would be unable to wear a certain article of clothing?? Right?

These are all 3 month and under size saved from my son. I saved them figuring that although he was unable to use them, surely our next child would be able to. Well... we all know how that turned out. WRONG. Sure, I could cut the clothing... but the sensible conservationist person in me says not to ruin a perfectly good piece of clothing that someone else could use. We have plenty of other clothing that does work with the casts and braces, so why ruin them?

I'm not going to ruin them... but for my own sanity I do need to get rid of them. It's weirdly depressing to have around. 19 footy pj's, 12 sleeper tubes, pants with feet or narrow ankles,
handful of socks and infant shoes. That's a lot of clothing that someone else can use! Thank goodness for girlfriends who have baby boys! Get ready for a whole new wardrobe!

Tuesday, December 7, 2010

First Week In Braces



Since my post last week my daughters toes have curled even more! Now the 3rd, 4th, and 5th toes are all curling under. I have a feeling that the casting was holding the 3rd & 4th toes up and now that the cast isn't there anymore they are free to curl. The surgery to correct this is a tenotomy of the tendons in the toe/foot. They are too tight and are causing the toes to curl down permanently.
We have submitted photos to our orthopedic doctor to see if putting rolled up cotton under her toes would do anything to correct the tightening without doing surgery. I will update when
we find out the answer!
When we received our ponseti bar and mitchell sandals last week they cut out the leather tongue and provided us with this rubber insert to help distribute the weight of the middle strap. It is our official review that the rubber insert doesn't work. We were unable to tighten the strap small enough to push her ankle into the back of the boot. This caused blisters on her ankles, and also wasn't doing the job of getting her foot into the desired "L" position. After trying it for 6 days we threw in the towel and found our son's original sandals with the intact leather tongue. Thankfully they wore the same size! We were able to tighten the middle strap two holes tighter and get her ankle down into the shoe. MUCH BETTER. We're not sure who made the decision to start
using the rubber insert... but I think it was meant for a baby much bigger than ours.

The bruising in her ankles went away after about three days.

Her feet are still angling downward quite a bit when just relaxed, so I am thinking a tenotomy is in our future for her ankles. Maybe we can take care of the toes at the same time and just have one trip through anesthesia. Who knows!

On a developmental side note, she is already starting to get some strong muscles and can even get her tush in the air a little bit. My mom is convinced she will be an early crawler because I was crawling at 4 months old. Maybe the clubbed feet won't slow this girl down afterall.

video

Sunday, December 5, 2010

Ponseti Method

This is straight up copy/pasted from Wikipedia. I know, I'm lame this week... Ha!

Ponseti treatment was introduced in UK in the late 1990s and widely popularized around the country by NHS physiotherapist Steve Wildon. The manipulative treatment of clubfoot deformity is based on the inherent properties of the connective tissue, cartilage, and bone, which respond to the proper mechanical stimuli created by the gradual reduction of the deformity. The ligaments, joint capsules, and tendons are stretched under gentle manipulations. A plaster cast is applied after each manipulation to retain the degree of correction and soften the ligaments. The displaced bones are thus gradually brought into the correct alignment with their joint surfaces progressively remodeled yet maintaining congruency. After two months of manipulation and casting the foot appears slightly over-corrected. After a few weeks in splints however, the foot looks normal.

Proper foot manipulations require a thorough understanding of the anatomy and kinematics of the normal foot and of the deviations of the tarsal bones in the clubfoot. Poorly conducted manipulations will further complicate the clubfoot deformity. The non-operative treatment will succeed better if it is started a few days or weeks after birth and if the orthopedist understands the nature of the deformity and possesses manipulative skill and expertise in plaster-cast applications.[2]

Clubfoot (talipes equinovarus) affects almost 150,000 children annually. Almost 80% of these children live in developing nations. Dr Ponseti's technique is painless, fast, cost-effective and successful in almost 100% of all congenital clubfoot cases. The Ponseti method is endorsed and supported by World Health Organization [3], National Institutes of Health[4], American Academy of Orthopedic Surgeons [5], Pediatric Orthopedic Society of North America [6], European Pediatric Orthopedic Society [7], CURE [8], STEPS Charity UK [9], STEPS Charity South Africa [10], A Leg to Stand On (India) [11] and others.

At the 2007 International Clubfoot Symposium attended by 200 doctors from 44 countries, papers were presented for an estimated 10,000 children successfully treated with the technique around the world in the past few years.

The Ponseti International Association for the Advancement of Clubfoot Treatment was founded in 2006 at the University of Iowa. The Ponseti International Association aims to improve the treatment of children born with clubfoot through education, research and improved access to care.

Steps are as follows:

1. The calcaneal internal rotation (adduction) and plantar flexion is the key deformity. The foot is adducted and planter-flexed at the subtalar joint, and the goal is to abduct the foot and dorsiflex it. In order to achieve correction of the clubfoot, the calcaneum should be allowed to rotate freely under the talus, which also is free to rotate in the ankle mortise. The correction takes place through the normal arc of the subtalar joint. This is achieved by placing the index finger of the operator on the medial malleolus to stabilize the leg and levering on the thumb placed on the lateral aspect head of the talus while abducting the forefoot in supination. Forcible attempts at correcting the heel varus by abducting the forefoot while applying counter pressure at the calcaneocuboid joint prevents the calcaneum from abducting and therefore everting.

2. Foot cavus increases when the forefoot is pronated. If cavus is present, the first step in the manipulation process is to supinate the forefoot by gently lifting the dropped first metatarsal to correct the cavus. Once the cavus is corrected, the forefoot can be abducted as outlined in step 1.

3. Pronation of the foot also causes the calcaneum to jam under the talus. The calcaneum cannot rotate and stays in varus. The cavus increases as outlined in step 2. This results in a bean-shaped foot. At the end of step 1, the foot is maximally abducted but never pronated.

4. The manipulation is carried out in the cast room, with the baby having been fed just prior to the treatment or even during the treatment. After the foot is manipulated, a long leg cast is applied to hold the correction. Initially, the short leg component is applied. The cast should be snug with minimal but adequate padding. The authors paint or spray the limb with tincture of benzoin to allow adherence of the padding to the limb. The authors prefer to apply additional padding strips along the medial and lateral borders to facilitate safe removal of the cast with a cast saw. The cast must incorporate the toes right up to the tips but not squeeze the toes or obliterate the transverse arch. The cast is molded to contour around the heel while abducting the forefoot against counter pressure on the lateral aspect of the head of the talus. The knee is flexed to 90° for the long leg component of the cast. The parents can soak these casts for 30–45 minutes prior to removal with a plaster knife. The authors' preferred method is to use the oscillating plaster saw for cast removal. The cast is bivalved and removed. The cast then is reconstituted by coapting the 2 halves. This allows for monitoring of the progress of the forefoot abduction and, in the later stages, the amount of dorsiflexion or equinus correction.

5. Forcible correction of the equinus (and cavus) by dorsiflexion against a tight Achilles tendon results in a spurious correction through a break in the midfoot, resulting in a rockerbottom foot. The cavus should be separately treated as outlined in step 2, and the equinus should be corrected without causing a midfoot break. It generally takes up to 4-7 casts to achieve maximum foot abduction. The casts are changed weekly. The foot abduction (correction) can be considered adequate when the thigh-foot axis is 60°After maximal foot abduction is obtained, most cases require a percutaneous Achilles tenotomy. This is performed in the cast room under aseptic conditions. The local area is anesthetized with a combination of a topical lignocaine preparation (eg, EMLA cream) and minimal local infiltration of lidocaine. The tenotomy is performed through a stab incision with a round tip (#6400) Beaver blade. The wound is closed with a single absorbable suture or with adhesive strips.The final cast is applied with the foot in maximum dorsiflexion, and the foot is held in the cast for 2–3 weeks.

6. Following the manipulation and casting phase, the feet are fitted with open-toed straight-laced shoes attached to a Dennis Brown bar. The affected foot is abducted (externally rotated) to 70° with the unaffected foot set at 45° of abduction. The shoes also have a heel counter bumper to prevent the heel from slipping out of the shoe. The shoes are worn for 23 hours a day for 3 months and are worn at night and during naps for up to 3 years.

7. In 10-30% of cases, a tibialis anterior tendon transfer to the lateral cuneiform is performed when the child is approximately 3 years of age. This gives lasting correction of the forefoot, preventing metatarsus adductus and foot inversion. This procedure is indicated in a child aged 2–2.5 years with dynamic supination of the foot. Prior to surgery, cast the foot in a long leg cast for a few weeks to regain the correction.

Wednesday, December 1, 2010

Woes about Toes

Our son has what they call "curly toes" where the middle toe is too low and it's pushing up on the toe next to it. He was born with the right one that way, and through correcting his clubbed feet the left has also crossed. It is possible that over the next few months they will fix themselves as his feet move into neutral positioning, but if not... we may be headed for a minor surgery. They will simply release the tendon that is holding the middle toe too low and then things should align naturally. We've battled whether this is cosmetic surgery or not, and it is something we will talk about extensively before agreeing to surgery. It is my feeling that this would be mighty uncomfortable in shoes as his feet grow.


Our daughters pinky toes like to curl under so that the nail is on the bottom. We haven't asked
the doctor about it, but the casting technician was pretty concerned and told us to stretch her out anytime we see her trying to curl under. It's a little hard to photograph - but this is the bottom of her foot and you can see the white in her nail on the pinky toe.

Tuesday, November 30, 2010

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.

Thursday, November 25, 2010

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



Wednesday, November 24, 2010

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.

Monday, November 22, 2010

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:

Facebook:
Parents and Friends of Children with Clubbed Feet
The Dr Ignacio Ponseti Appreciation Society

Yahoo:

What groups have you found?

Friday, November 19, 2010

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!

Monday, November 15, 2010

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.

Wednesday, November 10, 2010

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.


Monday, November 8, 2010

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.

Sunday, November 7, 2010

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. :)




Saturday, November 6, 2010

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

Wednesday, November 3, 2010

$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.

Tuesday, November 2, 2010

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.

Monday, November 1, 2010

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.

Wednesday, October 27, 2010

Emotions



With my son I remember being worried about the basics;

When would he crawl?
Would he be able to walk?
Will there be surgeries?
Will he have a "normal" life?

This time around I have a mix of different emotions. Almost two weeks after my daughter's birth I am still in amazement that this happened to us again. I am less worried about the stuff I had originally been fixated on with my son and more worried about things like;

Will I be able to wear her in a sling?
Do we need to get a double stroller? (the original plan was to wear my daughter until my son was old enough to walk independent of the stroller)
Will her recovery be as smooth as our sons?
If I have a third child will this happen again?

Anytime I hear of a new parent-to-be finding out that they are expecting a clubbed footed baby I always say that of any handicap, this is the easiest and most recoverable one out there. It is hard to take my own advice and roll with the recovery process. I'm doing my best not to get sucked into a pity party. Maybe next week when I get to pick out some pretty AFO shoe's I'll cheer up.

I've also asked around on some baby wearing boards and have some ideas for being able to babywear my daughter, though with most of them she needs to be old enough to support her neck, so it'll be a while. So far she has been rather unimpressed with being in a sling, so maybe my whining is a moot point anyway because she might not want to be worn!

Thanks for listening to me whine!

Tuesday, October 26, 2010

One Week into Recovery




My baby girl has been in casts for a full week. Her ankles are already straight! What a big improvement. I've had many questions about what the casts do, and the basic answer is that they help align the calves and ankles to be straight. It holds her legs in position and helps stretch out the tendon that has her legs curling. There is a science behind what angle her legs are held in. When she moves into the Ponseti bar braces they will be angling her feet into the correct position. Actually, they OVER correct because once she is out of the brace there will always be a period where the feet start to turn back inward. Yearly follow up appointments will make sure her feet are on track. So, casts take care of the legs and the braces take care of the feet. That is my understanding of it anyway!

Many of the support forums I am on for clubbed feet have parents who mentioned taking casts off at home the night before an appointment. I made the mistake of mentioning this to my husband, and before I knew it he was unwrapping the casts. It was terrifying to hold down my son while they took a buzz saw to his leg two years ago, so I didn't do a whole lot to stop my husband from manually removing our daughters casts. Here is a video of a little boy getting his spica cast removed... this is the sad baby we didn't have to experience this morning; http://www.youtube.com/watch?v=PLvkUHnXq0A

At our appointment today we were scolded a little bit for removing the casts 16 hours before her appointment. They said that her legs were more stiff than they would have been and that they didn't bend as far as they probably would have had we let them remove it. My husband wasn't in the room, but I explained their concerns to him and I think his plan is to remove her casts manually the morning of her next appointment. I'm making him call in and get permission! I don't like not following doctors orders, and as much as this whole process can be painful/annoying I do know that the closer we follow their outlined planned the faster she'll be done with the whole thing. I'd hate for us to have an extra week of casting just because she isn't stretching as fast as they'd like her to be.

Next week she could graduate to the AFO shoes, or have one more week of casting. How well she stretching this week will determine our fate! I am hoping we'll be done! Casts might be the fastest part of recovery, but it is my least favorite stage for sure!

Saturday, October 23, 2010

Babywearing with Spica Cast

I asked for advice on BabyCenter Community babywearing board and there is a mom whose daughter has hip dysplasia and needed to be put in a spica cast at 7 months old. Here is her reply to my request for help with possibly being able to babywear my daughter;


I used a woven wrap and faced out because of the bar on the spica cast. The spica cast keeps the hips in the proper position. Without it, you have to be very careful to make sure the rails are under the legs, and supporting your DD in a seated position. Since it is not as bulky as the spica cast you might be able to use the Pikkolo or Gemini. Those are buckle carriers that can face out in a seated position. Most of the forward facing carriers are pretty bad. I know you can rent them from PaxBaby. Jillian is very sweet and would be glad to help you out. I do have to warn that you need to watch out for overstimulation when forward facing. Jilly used to get pretty fussy if we were in a busy place too long because there was no place ti hide her head and get away from it all.

Steps to wrapping:

1. Safety pin the wrap in 2 places in the back to keep it in place.

2. Pick up the baby and thread the wrap up through the bar and over the shoulders. Make sure it is tight and baby is close up against the body. The straps should be in an X across the front.

3. Cross the straps around the back, in an X across your back. Tighten thoroughly.

4. Bring the straps under the baby's bottom and tie the wrap.

5. Spread the wrap so that it is supporting baby's bottom and back well.

6. Thread a strip of cotton gauze through the center of the wrap and tie it around the baby and yourself to add support to the sides.

Here is a video of the type of wrap I am basing this on.

http://www.gypsymama.com/beginner.htm#x


Here are 2 other techniques using the Front Wrap Cross Carry. Both eliminate the need for an extra peice of fabric or safety pins.

http://www.wrapyourbaby.com/frontwrapcrosscarry.htm

Both techniques start with finding the middle of the wrap and holding it up to your chest then bringing the rails over the opposite shoulder.

The first technique has DD facing out like the above technique.

1. Instead of making a pouch, the piece of the wrap around your chest is used as cumberbund. It must be left pretty loose to get the baby in there, and the baby will be facing out instead of in.

2. Then tug on the rails to tighten the cumberbundt securely around your babies middle.

3. Thread one rail through the bar of the cast, downward and spread it across your baby's bottom for support. The rails will make an X.

4. Bring the second rail down thorugh the bar and spread evenly.

5. Bring the rails around your back and tie them off.

Photos and information reposted with the moms permission. Thanks a bunch Candy!

Wednesday, October 20, 2010

What Causes Clubbed Feet



Short version of an answer.... NO ONE KNOWS!!

I get asked where clubbed feet comes from all the time... and based on what I can tell - your answer depends on what your doctors opinion is on where they come from. But from speaking with other parents of clubbed feet babies... I think the real answer is that there is no way to know what caused it.

Clubbed Feet, also known as or congenital talipes equinovarus (CTEV), is a common birth defect effecting approximately 1 in 1000 live births. The root cause for clubbed feet comes from a long list of possibilities, and it could be one or many from the list. The list of possibilities has been broken down into two categories; Postural or Structural. Without treatment, persons afflicted often appear to walk on their ankles, or on the sides of their feet. Approximately 50% of cases of clubfoot are bilateral (both feet). This occurs in males more often than in females by a ratio of 2:1.

Structural TEV is caused by genetic factors such as Edwards syndrome, a genetic defect with three copies of chromosome 18. Growth arrests at roughly 9 weeks and compartment syndrome of the affected limb are also causes of Structural TEV. Genetic influences increase dramatically with family history.

Postural TEV could be caused by external influences in the final trimester such as intrauterine compression from oligohydramnios (deficiency of amnio fluid) or from amniotic band syndrome (ABS). However, this is countered by findings that TEV does not occur more frequently than usual when the intrauterine space is restricted. Breech presentation is also another known cause.

So, there ya have it... some basic information but no real answers. Obviously it's easy to think in my case that we are dealing with Structural TEV because my husband used Ponseti braces to fix his being pigeon-toed (feet turned inward) as an infant/toddler and now we've produced two children with clubbed feet. All things considered, it is still very rare to end up with two children affected - so we should certainly go out and buy a lottery ticket!