Lou is two and X has flexible feet!

So, this time I'm not going to apologize for taking months (again) to post an entry. I'm a slacker. If you've been following, this is nothing new. Well, let me re-phrase... I'm a slacking-blogger. I'm a busy girl, for real. I've been busy taking care of my amazing kids, planning a two-year party for my darling Little Lou (she chose an insect themed party, which was AWESOME!), taking X-Man to weekly PT appointments and AWANA (more on that later), working more hours from home than ever (job-security yo!), all while trying to keep a clean home and sleeping eight hours a night. So, blog posts have been pretty low on the priority list - understandably so, right?!

As I mentioned, Little Lou is now two. It's so hard to believe. I remember when that sweet girl was born. Perhaps the most prominent memory is that of the first night in the hospital. In the middle of the night, I hear the LOUDEST baby coming down the hall. The baby was getting closer, and closer, and I think I may have said "That better not be my kid!" - guess who it was...

This girl:


Now, two years later, she is a confident, spunky, beautiful little girl. She loves animals (in fact, she has to kiss them when she sees them in books or in real life), baby dolls (she tries to sleep with five of them each night and names them all 'Kitty Cat' or 'Turtle'), and insects. If she sees a bug, she'll immediately try to hold it, and, if for some reason she's not allowed to hold the bug (because of pinchers on ickiness), she will stomp it until it no longer moves. She's passionate.

So, X-Man has started AWANA - he is a first year Cubbie and LOVES it! He is so good at memorizing scripture and enjoys earning things for his efforts. Tonight he earned his first patch for his vest, I am one proud Mama!

As I mentioned above, X-Man has been going to physical therapy each week. Three weeks ago, his physical therapist, measured his dorsiflexion, and it measured at... ready for this? Twelve-fifteen degrees. If you have a child with clubfoot, you know this is amazing, especially for my guy who was at zero less than a year ago! So, the following week, Lindsay (his PT) measured again, and both feet were again, between twelve-fifteen degrees. So, we are now going to PT every other week - we're very excited about this! We still stretch every evening, and I can tell there's a huge difference between now and even two months ago.

I can't believe that tomorrow is the last day of September. It's even harder to believe that a year ago I felt unsure and scared of X-Man's future with clubfoot. We thought for sure that he would have to have an ATTT and even that didn't have guaranteed results. Luckily, we were able to avoid that surgery and he is doing better than ever. He has a very confident walk - most people call it a strut, and he runs as quick as children his age without clubfoot. So, life has been good here. There's been a lot of craziness and keeping bust, but the big things are all in place, I feel incredibly blessed.

No news is...

Good news. Right? Things have been going very well here. I realize how much I complain, I am much better about posting when I'm complaining or worrying - luckily there hasn't been much of either lately!

So here's a recap of the last three months (yes, three months, I am a slacker).

In March - X-Man's foot did heal. In only a week or two he was back to being himself, running and jumping. Now, because of daily stretching and weekly PT, he can even stand on his toes and squat for a few seconds (YAY!).

In April his flexibility continued to improve. He gained a few degrees of dorsiflexion on each foot. In April we also found out that my husband was offered a new job. Unfortunately, that meant that beginning on May 1, we no longer had health insurance for a month (unless we chose to have Cobra which cost more than our mortgage payment!). I talked to his therapist and she was kind enough to let us come every other week and shorten the sessions so that our self-pay bill (which, BTW costs $231/hour) would be greatly reduced.

In May we went to Iowa for a follow up appointment. Because of Ben's new job, he wasn't able to come; however, my sister S stepped up in a big way and traveled with the kids and I. Dr. Morcuende seemed very happy with X-Man's flexibility. Since our last visit, X-Man had gained about 5 degrees of flexibility in each foot. He said the main thing is to continue stretching and going to PT. Nurse Maria was on maternity leave (in February she didn't even look pregnant - lucky lady!), we missed her but still had a good visit.

Aunt S with Little Lou and X-Man

X-Man at THE Ponseti Clubfoot Clinic (we are so blessed!)


In June we took a much needed vacation. Little Lou and X-Man fell in love with the ocean. Our church also had VBS which was a lot of fun. On June 1, our new insurance benefits kicked in so we went back to weekly PT visits. His therapist also gave me some information on the local University's physical therapy department. Because of his clubfoot, the students would like to study him and learn more about how to treat other children with similar conditions. I'm thinking about going, I just have to figure out childcare for Little Lou.

We've been having a pretty great summer so far. Near our home is a pretty large reservoir with many steps and a ramp right next to the steps. About once a week we go and walk up the ramp two or three times to stretch his feet. By the way, in case you were curious, there are 123 steps - in the photo below, X-Man and Ben are about halfway down (or up).


I know this post was short and sweet, I'm hoping to post more throughout the summer, but no promises! At any rate, I continue to see how incredibly blessed we are and am so thankful to have the life that I do.

Some notes I should have included in my last post...

Okay, so I tend to get a little overwhelmed by this whole blog thing. I wait forever to post and then forget to say what I wanted to say. Here's a few notes that I either forgot to list or just felt to lazy to type:

1 - If physical therapy doesn't help with flexibility, Dr. Morcuende suggests that we look into getting an AFO for X-Man to wear during the day, then bracing at night and bedtime. He would prefer not to go this route because X-Man already has severe atrophy of his calf muscles and the AFO could cause this to get worse. So for now, we spend an hour at PT each week and then do exercises daily and stretching twice a day. We go back at the end of May, so we're hoping and praying that we good get results! Of course, he's already had AFOs and it really wouldn't be a huge deal - I'm just as happy as can be that we're not even discussing surgery at this point. It's amazing how much different the treatment is from a true Ponseti doctor compared to one who just claims to be.

2 - So, X-Man somehow broke his foot. We noticed after his initial Physical Therapy consultation that he was turning his left foot out and hyperextending his knee when he walked. He would also scream whenever we tried to move his foot or put them in shoes. I emailed Dr. Morcuende on a Sunday afternoon and he had emailed back by that evening (how amazing is that?!). We emailed back and forth and he recommended that we either come out to Iowa or see a doctor here in town. We took him to our pediatrician and they wrote an order for an X-ray. The X-ray showed that he had a reaction to an occult fracture in the shaft of the third metatarsal. I emailed the report to Dr. Morcuende and he said that it was likely a hairline fracture that would heal on it's own in 7-14 days. Luckily, that was the case and X-Man is walking great again with no pain (thank you, God!).

X-Man just finished week 4 of PT (week 3 with his "physical parakeet Windsey" (PT Lindsay)). He loves PT, not a big fan of stretching, but normally I can bribe him with some sugarless gum. His ankles are already feeling looser. They're still very stiff, but it's progress, and we'll take it!

A month later...

So, obviously I am not the most consistent of people, at least in terms of blogging. X-Man had a follow up visit on February 15, so a month later, I figured I'd update you all on how the appointment went as well as other happenings.

Mini-Vacation

So, we heard that it was supposed to snow on Sunday, the 14th, and maybe a little bit on the 15th (although our local meteorologist said the snow should miss us on Monday). We decided to head out to Iowa on Saturday evening and then spend Sunday in Coralville enjoying Valentine's Day together. The drive to Iowa went well. We ate in the car and changed diapers at gas stations. Outside of gas-stops, we only stopped at one rest stop. We made it to Iowa in a little over 9 hours, which is excellent time.
The kids as usual had a lot of fun at the Ronald McDonald house. We ran around and played games. A local church made us some delicious dinner and dessert. X-Man and Little Lou played in the playroom and we checked out the new library (they got brand new furniture and it looks amazing). Ben and I stayed up for hours playing chess. Ben and I have been together for over seven years, and I never knew he played chess (quite well!).
Sunday was Valentine's day. We headed into Coralville and spent a few hours at the mall. The babies LOVED watching the ice skaters (we're going to try to get X-Man into speed skating soon). We also went to the Iowa Children's Museum.

X-Man showing Little Lou how to get to the museum
The kids loved the exibits, and it was wonderful to get out of the house and do something different as a family. I think we'll have to do this more often during our Iowa trips. We came back to the house and played and then went out five to seven games and only won two times.

The appointment

We arrived for X-Man's appointment on time. Nurse Maria saw us in the waiting room and said "Hi X-Man (only she said his real name :))!", I think it is amazing that she remembers us by name. It just goes to show how much they really do care. When we went back to the room, X-Man didn't cry or fuss at all, that is, until I tried to get him to sit on the table! He wanted to sit on my lap the whole time, and luckily they were able to examine him on my lap.
X-Man was a little shy with Dr. Morcuende. This time, he had a physical therapist from Australia with him. I just love the education and awareness that is spreading about the Ponseti method.
Dr. Morcuende said that his feet were looking pretty good. Unfortunately, X-Man has complex clubfeet, so many of the rules of bracing don't really apply to him. His magic shoes were at 40 degrees (typical clubfoot is normally set around 60 degrees). but due to some sores, they decreased the angle to 30 degrees. Luckily, we have moved down to only 16 hours of bracing each day.
Dr. M wanted to see X-Man walk. I bragged about the fact that this is the best X-Man has ever walked. He doesn't limp or hyper-extend, he walks like a little boy with normal feet.
His dorsiflexion still isn't very good. He's got seven degrees in one foot and zero in the other (on one of my earlier posts, I mistakenly noted he had 15 degrees of dorsiflexion). The stiffness is likely because of the tendon lengthening surgery he had at 18 months of age. Unfortunately, at that time, we didn't realize that this surgery was not part of the Ponseti Method. Also, because of this surgery, a second tenotomy will not be possible. Dr. M does think that Physical Therapy could help with flexibility and strengthening.
Dr. M recommended that we find a Physical Therapist in our hometown to help with flexibility and strengthening.

Coming Home

We headed home after the appointment. The drive was going very smoothly until we got about three hours outside of our hometown. Then the snow started falling. We drove for about two hours (and traveled the same distance we normally travel in an hour and a half) and stopped at my favorite pizza place. It was nice to sit and relax. There was only two other people eating in the restaurant. As we ate, we realized that the snow was accumulating at a very rapid rate. We decided to pack up and have the babies eat their pizza in the car.
The rest of the drive was traveled at no faster than 40 MPH (in a 65 MPH zone). It was very scary, the snow was so heavy that you couldn't see where the road started and the shoulder began. We prayed quite a bit and made it home in about two to three hours. We saw many cars that had wrecked and even saw some that had flipped over (including a semi-truck). I was so happy to have made it home.

All in all, it was a wonderful trip. We got to spend some time together as a family, had wonderful new at X-Man's appointment, and stayed safe. What could be better than that?

Snow!

So, here in Ohio, we have tons of snow. Not as much as the East Coast, but still, quite a bit. On Friday, we had no snow on the ground, by noon on Saturday, we had 15 inches. And I welcomed all 15 inches. It's beautiful, and the kids love it.

X-Man and Little Lou all bundled up

Fast forward to Tuesday. We got 4 more inches of snow. Once again, I welcomed all 4 inches, although my welcome wasn't nearly as warm.

Fast forward to today. I see that we're supposed to either get snow showers or 2-4 inches of snow on Monday. Snow has overstayed its welcome. Enough already. Don't get me wrong, I love the way it looks. It's gorgeous. It feels magical to watch it fall all day. However, we are headed to Iowa on Saturday for a 4 week follow up appointment on Monday. The weather is supposed to be decent on Saturday and Monday from Ohio to Iowa (minus Monday's snow showers), not so nice on Sunday... This is part of the reason that we'll be headed out early. We also thought it would be nice to take Little Lou and X-Man to the museum and maybe ice skating for Valentine's Day.

I'm hoping the appointment goes well. X-Man's feet are looking better and better. His left foot has almost completely dropped, his right foot still has maybe 5 mm until it drops all the way down into his shoe. Each day, we've been doing stretches for half an hour two times a day, and I can tell that they are helping. His feet don't feel nearly as stiff as they used to. And, X-Man is walking better than ever. Tonight he was running, and I was amazed at how fast he runs now! I am a little concerned about his right foot as it just doesn't seem 100% corrected yet. Dr. M said that there was a chance he would have to have a tenotomy on the right foot... I'm hoping we won't have to do this (as it would mean driving 10+ hours with a child who just had surgery, followed by 4 weeks of casting and relearning to walk... again), but, I have peace that Dr. M knows what he's doing. We're hoping and praying that we have safe travels and that X-Man's feet continue to progress.

Support charity by searching online

Hi everyone! We haven't blogged in a while; I could blame it on cleaning, or planning a birthday party, or just laziness. At any rate, I wanted to let you know about a very cool search engine.

If you use www.goodsearch.com, they will donate $.01 for every search to your favorite charity. If you don't have a favorite charity, consider using mine - the Ponseti International Association. http://www.goodsearch.com/nonprofit/ponseti-international-association.aspx
Please consider making this your homepage.

Thanks for reading!

Before and after

Before - photo from October, 2009


After casting - they look so much better. It really is amazing.


This is his "difficult" foot, but it still looks so much better than it did a few months ago!




It amazes me how much different this foot looks now


X-Man and his magic shoes - he really likes them



We're very pleased with the results from his casting. We're hoping everything is corrected and that he won't need to get a second tenotomy. We won't worry about it right now because that won't solve anything.

We will keep bracing and praying and we'll leave the rest to God.

Cast free is the way to be!

So, X-Man is cast free! We are so excited. He's been in casts since the middle of October, so we're so happy to have made it to this point.

We were able to get an Orthopedic office to take his casts off. I was so proud of X-Man, he didn't cry at all when he had his casts taken off; even the cast tech was impressed! He really did a great job. At one point, he did start to panic a little bit and started counting super-fast. The tech stopped for a minute and said, "it's alright, I'll give you a minute". I was really impressed with the tech, he was really good with X-Man and wanted to learn more about why we went to Iowa and X-Man's treatment (I love when I get the chance to educate people about the Ponseti method!). He even helped me figure out how to get X-Man's "magic shoes" on.

I can't wait to post photos of his new shoes - unfortunately, we seem to have miss-placed our camera. I have a feeling that a certain little girl hid it somewhere... She's lucky she's cute.

When we got home from his doctor appointment, he was so excited to take a bath in the bathroom (we've been doing waterless baths and sponge baths in the living room). His skin is so dry and his legs and feet are really sensitive. I can tell that his knees are sensitive to extension too (probably from being bent for so long!). He tried to stand up, but his legs were unable to hold him up. I'm sure this is temporary, but I think it scared him. Luckily, he has figured out how to crawl with his brace.

His feet look so much better than they did in October; when our camera is found, we'll post comparison photos - you'll be amazed.

Three years ago

X-Man on his birthday - pre-casts

Pre-casts, he was one or two days old

X-Man and his first set of casts, three days old

So sitting here, I just realized that exactly three years ago, X-Man got his first set of casts. I remember him being so tough. He was only three days old and was already the love of my life. I remember trying so hard not to cry while they put his casts on, but I couldn't hold back tears. I remember putting his clothes back on, trying to be careful with his new casts. I remember feeling the warmth of his casts and panicking, thinking that they were burning his legs. I remember calling my mom from the car, I was sitting in the backseat, to X-Man's right, I remember exactly where on interstate 71 that we were. And I remember sobbing, telling her that my sweet tiny boy had huge heavy casts all the way up his legs. I remember just wanting my mom and dad. I never felt more like a child in that moment. But also in that moment, I realized that ready or not, I was an adult and was responsible with the most beautiful child I had ever seen.

I teared up a little bit thinking back to that moment. But I wouldn't change it for the world. It was one of the most difficult, yet most wonderful moments of my life. And the past three years have been (hands down) the best years of my life. My X-Man continues to bless me everyday, he really is a tough, amazing guy. I don't know that many other children would do as well as he has with everything.

We really do have an easy life compared to so many people; we feel incredibly blessed to have two smart, kind, healthy children. Clubfoot has become a normal thing to our X-Man. He's not embarrassed, and neither are we. When people come to our house, he loves to show them his "cool, blue casts" and his new "magic shoes". On Wednesday, X-Man gets his last set of casts removed here in town. We've been telling him each day how many days until his casts are removed. Last night, as we were getting ready for bed, we told him "three more days until you get your casts off!" and he said "no, we leave my casts on!". He actually likes his casts!

When his casts are removed, he'll start wearing the Mitchell/Ponseti boots and bar 18 hours a day. It seems daunting and I was a little worried about his mobility. Then, I remembered that's what I was worried about when we started casting. Luckily, his casts haven't held him back, and I wouldn't be surprised in the least if his braces met the same fate.

The past three years have been filled with so much love and amazement. I'm looking forward to the next three years; but for now, we'll enjoy one day at a time.