Annual Checkups

It's been a long time since I've updated - mostly because 2015 was an insanely emotionally busy year - but also because not a whole lot has happened with the kiddos feet.

Miss Lena's ATTT surgery is on hold until her tendons are bigger than spaghetti noodles... who knows how long that will be. Middle school?? She did have a growth spurt about 2 months ago which caused us to go into the clinic to have her overnight AFO braces adjusted. I'm almost disappointed that we will need to wait to have her surgery done. I feel like being older will make the whole experience more difficult, and she will actually remember having it done to her. Can't change what you don't have control over - that's for sure.

Mister Emerson has been on annual maintenance checks for 6 years now and no sign of relapse. I'm pretty sure we missed bringing him in last year... but too late now! He'll be 8 years old in just a few weeks and we don't anticipate anything changing until he hits some growth spurts in the teenage years.

We go in tomorrow for their dual 6 & 8 year old feet check. I'm anticipating no big news!

21 minutes

The staff at Gillette Children's Hospital were amazing. We arrived in the late morning and they had all kinds of toys and games for her to play while we waited for surgery. Everyone involved with the surgery checked in with us and made sure we were doing good. They asked her to pick out a color for her cast, to which she responded that she wanted yellow AND red. The nurse said they would do their best to make a swirl for her.

Only one of us could go back into the surgical suite with her. I was really hoping my husband would volunteer because I was starting to have panic attacks about all of it. But when he didn't... I knew I had to because there was no way I was going to let her go back there alone! I got all dressed up in the space suit and we wheeled her back into the surgery suite. They had me hold her (something I was not expecting to do) while the anesthesiologist worked his magic. They had be bring a chapstick from home that had a familiar scent to it and rub it on the inside of the mask. He sang her ABC song and Itsy Bitsy Spider while the mask was over her mouth and nose. She started to fight it and wiggle a bit in the last few seconds (something they told me would happen).  Then she just went limp in my arms and they took her over to the table.

Lena's surgery was all done in 21 minutes! We barely had time to eat lunch. Dr. England met us back in the waiting room and explained he was able to do everything all in one incision instead of two. So, that's a bonus! Only one scar!

We were told she was ready to meet us in post surgery so we started our way to the back of the hospital. I could hear her screaming. :( I really had wanted to be there when she woke up, and I'm not sure how long she was scared with the staff. But we got there as quickly as I could. Lena was struggling with the nurse wanting to rip her IV out of her wrist. We tried to distract her with with television and snuggles until it was time for the IV to come out. Once it was out she calmed down quite a bit... until she saw the yellow and red swirled cast... then she screamed "NO!!! Only RED!!!!!" To which we had to giggle a little bit at the "difficulty" of being 3 years old and making decisions.

She ate a bunch of crackers, juice, applesauce, and popsicles. They let her pick out two stuffed animals and then it was time to go home! I think we were at the hospital about 5 hours.

Eve of First Surgery

Nerves are all a flutter as we prepare for our little girl to have her first surgery tomorrow. The doctor will be lengthening her muscle and a tendon on the inside of her right leg to correct how her foot is being pulled out from under her. It's been steadily getting worse for the last few months.

The surgery will be about 1.5-2 hours long and then we'll plan on being at the hospital another 2 hours or so during recovery and discharge. Then she'll be in a walking cast for 20 days - hopefully cleared for summer fun once all that is over with.

Going under the knife

Well, we've decided to get surgery done on little Miss Lena. After 9 months of physical therapy it has come to a point where we've done as much good as we can... and it just isn't enough. We'll still have to do lots of physical therapy after surgery, but this will get her ahead of the curve.

 

Oddly enough the surgery will only be on her right leg - which was deemed the "better" of the two last year. If you recall, last year we were told that lefty was "for sure" going to need surgery and that physical therapy would be very difficult even for a professional to get just the right stretches in to correct her tripod, and that righty was just a rubber crowbar that needed some strengthening and corrected posture. We started physical therapy essentially only to fix righty because Dr. England believed that leg could be fixed with physical therapy, but that if it couldn't he wanted to do both legs at the same time. Made sense to us! Well, somehow we magically fixed lefty... but righty is flat and curving in (I guess you could call it a partial relapse??).

We're still in shock and of course left the appointment without asking any questions. In fact, we left without realizing he only wanted to do surgery on one leg. We had to call back! The surgery is schedule for April 18th (Good Friday - that's good luck, right??). We have many weeks ahead of us to ask questions and verify our course, and although this is scary it does feel right. Our doctor is not very "knife happy" and wouldn't be recommending this surgery unless it were totally necessary. Odds of having TWO children with clubfeet not need any surgery is probably impossible.

Any words of advice from all of you that have had children undergo a surgery??

And you shake it all about....

So yesterday we had a regularly scheduled visit with our home physical therapy teacher. Lena has had regular appointments with speech and physical therapists for a few years through the Early Childhood Intervention program. Big brother Emerson had the same thing. We were tapering off Lena's appointments and getting ready to be done this fall when she turns 3. Now this new surgery lingering in our future is going to increase the amount of time out PT will be available.

She came yesterday and gave us a few ideas of how to begin the PT to hopefully avoid surgery on the right foot and maybe improve the left as well. I could tell after just 45 minutes with the PT mixing stretching and playing that Lena was already exhausted. We'll start off with just once a day (and maybe doing one leg in the morning and the other later on in the day). The goal is to keep her happy and avoid her being upset while doing PT... because if she becomes a crabby pants about it the whole thing becomes 10X more difficult.

For the right leg we're supposed to realign her foot to a neutral position, slide her butt forward so the knee is in line with the foot, and then give her toys to stretch and reach for while we hold her leg in place. This will allow HER to be the one stretching and we can avoid injuring her by pushing too hard. Secondary stretch (shown in photo) is to support her foot and just pulling back gently to stretch her Achilles.


For the left leg we need to find a little square bone at the top of her foot near where the crease is going up to the leg. Slide it over to the middle to be centered with the leg and then stretch it similar to how we did the right leg. This is a difficult stretch to achieve, but we will do our best! There is also a massage to do all down the outside of the calf to help loosen up that tendon which will eventually be lengthened.


 Our home PT will be coming back the next two weeks and then we finally have our official appointment with the PT specialists at Gillette at the end of July. This will give us a good start and hopefully their information just builds on what we'll already be doing.

Once a triangle always a triangle....

Our daughter has been brace free since November and we had no scheduled appointments until fall 2013 for just a regular maintenance check-up appointment for both kids legs.

Mid-winter we started to have some concerns about the position of her feet. When a child is on recovery from clubbed feet the Ponseti bar OVER corrects their feet and then when the braces are removed there is a period of time when the tendons tighten back up a bit and move the feet into neutral position. Lena's feet were not coming forward at the same pace. We have a physical therapist who comes to the house twice a month who was also a little bit concerned. Long rambling paragraph short... we ended up doing nothing at that period in time because it started to get better on it's own and we were a little bit distracted with additional appointments for our son who was having some reflux issues.

About a month ago we became concerned again. Her feet were just not looking right. We brought her into the ortho surgeon and learned we have two different problems going on.  Consider your calves to have tendons on both sides that work like horse reigns. On the left side of both of her feet the reign is too tight and short. 

Her right leg is a "rubber crowbar" where the inner J tendon that runs from mid-calf to the arch of the foot is tightening which means when she goes to take a step it is slow to get to flat position when she goes to put weight on it again. I think this could be considered a mild relapse of the club feet. This could be fixed with physical therapy and stretches. 

Left foot however has a bigger problem. The foot is basically a tripod for where it makes contact to the ground. Two spots on the front and then one on the heel. Hers is leaning because the tendons on the outside of the foot are too tight and pulling her foot out from under herself. That one most likely cannot be correct with PT. He said it is a difficult stretch to gain and even a professional might not hit it just right. Basically you have to move her foot into neutral and THEN stretch it... otherwise if you don't get it exactly in neutral you'll just be stretching the wrong area. 

We asked what would happen if this was all left untreated. The doctor explained that once she hit puberty and started to grow fast and when she was getting more into sports her feet would be come incredibly painful. So, obviously we have to do something about that! We have an appointment with the specialist PT at Gillette at the end of July and we'll also receive help from our home PT. Hopefully through that we can avoid surgery on the right leg. We'll hold off on surgery until the fall to give that a chance to work, and because no one wants to be in a cast during the summer time! She will need to be put under general anesthesia, so IF we are unable to fix the right leg with PT this summer we'd want to take care of both feet at the same time rather than doing the left right now and then ending up needing to do the right leg in a year. 

Both surgeries are fairly simple and quick. Just cutting the tendon to lengthen it slightly through an incision about 1/2 inch long.   I believe he said she'd be in a cast for about 3 weeks and that she'd even be able to walk on the cast. 

80% of children with clubbed feet need a surgery or two to correct the birth defect. We have been super fortune to have not needed anything other than the casting and braces up until this point. Surgery can be scary, and I don't consider us unlucky now. Just more like an "Oh darn, so close to avoiding all that stuff!!" 

Freedom Eve?

Remember Remember the 5th of November.....

Tomorrow we have our 6-month follow up appointment at Gillette. Our daughter is just over two years old. I know the average correction time of clubbed feet is 2-4 years. Our son was the same age and we were surprised to go to the appointment to learn we were all done! No more braces! Just follow up appointments for a few years and then maybe some checks when he gets to adolescents with some growth spurts.

Now I have an expectation that tomorrow's appointment will go the same way... and I don't think I'm mentally prepared to hear "6 more months". Mostly because of he says that... what's to say it won't be 2 more years and I'm only halfway? I can't think of any reason why she wouldn't be done... her feet look super over corrected (which is how they are supposed to look). She's been walking for about three months now and has really started to meet more of her peer groups milestones. It was like a dam broke and now she's catching up!

The only real difference between my two kids is size, my daughter is considerably smaller than my son was at the same age. Two years old - Size 2-3 shoes, barely 20 pounds, and 30 inches tall. My son was all that at 12-15 months old! And we thought HE was small! Ha!

I am very grateful that of all the complications that can happen that clubbed feet is what we ended up with. I know there are much more difficult diagnosis and life-long challenges that can come from a birth defect. Clubbed feet are very correctable and not too invasive if you end up with mild forms like we have. No surgeries between the two kids and so far (knock on wood) no relapse with my son. He is now 4 years old and has been brace free for over 2 years. If he tells us 6-more months tomorrow I will of course comply and continue the treatment. Being consistent and constant with the braces is what finishes the job.

So for now I am resisting the purchase of nice warm fleece footed pj's and just keeping my fingers crossed that tomorrow starts a new brace-free chapter in our lives.