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?

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!

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.

Iowa - Week 5

Week 5 = festive casts!
This morning, X-Man got his 5th set of casts. As usual, he cried when they removed his casts, and when the doctors came in to apply his new ones. Ben was told that X-Man's left foot is progressing as expected (YAY!), but his right foot isn't as loose as they thought it would be. It sounds like he may need another cast on his left foot, but probably two or three more on his right. He may also need a tenotomy on his right foot (he had a tenotomy on both feet at seven or eight weeks of age).

I'm kind of bummed, but I know things will be alright. We were hoping to only go out one or two more times, but now it sounds like it may be closer to four times. His next appointment is on Monday, so we're hoping to get airline tickets for Sunday/Monday. Also, Nurse Joyce (she was Dr. Ponseti's nurse for years) gave us some information on Angel Flights. It's a charity that gives free private flights to children (and their families) for medical treatment. I think we may look into this option.

At any rate, please keep praying for us. Everyone has been so generous and kind, and we are forever thankful for that.

Appointment number one

I thought I'd start off with a photo of Little Lou playing with measuring cups in our room (it has nothing to do with anything, but I thought it was cute!).

Today's appointment went pretty well. The hospital is maybe the biggest one I've ever seen - it really was amazing. I got a little emotional when it really sank in that we were at THE Ponseti Clinic.

X-Man under the sign of THE Ponseti Clinic - also, he's holding a new friend that he got from the RMH

Joyce, Dr. Ponseti's nurse walked us back to the room. She also told me that Dr. Ponseti passed away yesterday (he had a major stroke that left him comatose on Thursday). It was so sad to hear; although I didn't get a chance to meet him, his work has made X-Man's life so much easier than it would've been years ago. We also got to meet nurse Maria - she is just as nice in person as on the phone.

Then, we got to meet Dr. Morcuende. He was so nice. Both Ben and I felt completely comfortable talking to him. You could tell that he really believes in the method and took the time to explain why just having surgery won't get us good results. And, although the Ponseti Fund will be covering our health care bills, he said he would like to work with us to fight the insurance company - not necessarily to get them to cover our bills, but to make sure that other parents don't have to go through the same thing. He also had two or three doctors with him - he was teaching them the method. It was great to see that the method is spreading (one was actually visiting from Japan!).

After we talked more about X-Man's treatment, they started casting him. At first he did really well. I could tell he was uncomfortable with the stretching because he kept holding his breath. Towards the end of the first cast, he started tearing up and was crying uncontrollably by the end. It's so hard to see him uncomfortable, but, we're avoiding an unnecessary surgery, so it's totally worth it.

Our next appointment is next Monday. I feel so blessed that X-Man has been given such an amazing opportunity to be treated by such an amazing medical team.

X-Man chose green casts for week one

I loathe our insurance company, but I love God!

So, this morning starts off by a call from University of Iowa's financial office. The guy on the phone tells me that our insurance company has denied coverage for X-Man's castings (wow, I am so glad not to have his job!). He tells us we can become self-pay and gives me an estimate of how much all of his visits would cost us. Let me tell you, they were so generous with the amount that they will charge us - I was expecting charges much higher than what he told me. As a self-pay patient, we will have to pay $700 on Monday and then pay the rest as we go on with treatment.

After I put the kids down for naps, I called Anthem and asked if they could provide a reason that our coverage was denied. They tell me it's because people in Ohio do the Ponseti method (once again I explain that they do the method for babies, not for relapsed children). I ask what option I have, can I talk to someone else to get this taken care of? They tell me to call Dr. M and ask for three times that they can call him for a Doctor to Doctor consultation.
I call Dr. M's office and leave a message for his nurse, Maria (she, BTW is maybe the kindest person I've talked to in a while). She calls me back and says (paraphrased)
"I'm sorry that your insurance company is giving you so much trouble. I talked to Dr. Morcuende, and he said don't even worry about the insurance company. Come to your appointment on Monday, we will cover the costs..."
I can't breathe. I can't talk
"We have a fund set up for people in your situation. Of course we like to make money, but we want your son to be able to have treatment."
I tell her "You're going to make me cry... " I think I muttered some non-sense and then thanked her again, and again, and again.

How amazing is that?

I called Ben, I feel bad. There are so many people who are in much worse situations than us. He tells me "Michelle, this is God's hand at work". Wow, that Ben is so intuitive. We agree that we will pay back every cent so that someone else can have this amazing opportunity - it may take a year or so, but we'll do it.

I woke up this morning praying that God would have insurance cover our costs... God responded by giving us an amazing opportunity. Our X-Man gets to see the top Ponseti team in the world for treatment, and we only have to pay for our travel costs. Talk about answered prayers.

Thank you God... How could I ask for more?

I'm a blogger!

Well, it's been a crazy few weeks. We've had some pretty low lows and some pretty high highs too. I should probably add that none of this was drug induced.

We found out two weeks ago that my darling X-Man's feet have relapsed and that he needs surgery on both feet. After tons of research (we're talking up til 3 am every morning), joining groups for other parents with children who have clubfoot, tons of correspondence with doctors, and of course, nightly meetings with God, we found out that we may be able to avoid this surgery.

I've been in contact with Dr. Morcuende in Iowa City, Iowa. He worked with Dr. Ponseti (who is a god in the clubfoot world) for the past 15+ years, so he knows his stuff. After sending some photos of X-Man's feet, Dr. M said that he is pretty confident that his feet can be corrected by applying 5-7 casts. Unfortunately, there are no doctors that use the Ponseti method (on relapsed feet) in all of Ohio. So we will be traveling to Iowa every week through the middle of December.

Now comes the politics of all this... We have amazing health insurance; X-Man has had castings, surgeries, and braces, and we've only had to spend maybe $300 out-of-pocket. I've had two babies and haven't had to pay a dime for either birth (AMAZING). Granted, we pay a ton for insurance, but it's totally worth it. Unfortunately, we just found out that we have no out-of-state benefits. There are no doctors in Ohio that do this treatment, and because of that, we may end up paying out-of-pocket - how insane is that?! Luckily, Dr. M's office called and said that if our insurance gives us trouble, they will give us a deeply-discounted rate and give us a payment-plan.

At any rate, we've been updating family and friends about treatment and my BFF (yea, I said BFF) Jaimie suggested that I start a blog to update family and friends. So that's what I did.