Iowa - Week 2

X-Man and his awesome Halloween/Bengals casts

This week's trip went pretty well. The kids behaved much better in the car than last week, so that was a huge relief! The weather was beautiful for the most part (there were a few showers here and there). We decided to do a progressive lunch in the car and that seemed to work really well; plus, we arrived at the RMH by 3:15 central - meaning our travel time, including diaper changes, gas station trips, and rest breaks was less than nine hours. Not too shabby!

When we arrived at RMH we unpacked and headed straight to the playroom. We got to see little guy's dad (little guy's name is Lee). He was saying that Lee was getting a tenotomy on Monday and then they were headed home (it's a 19 hour drive for them!).

We went out to eat then came back and played in the playroom for a while longer. X-Man just loves playing with Lee. I think it's neat for him to see another child in casts. I also met a couple from Iowa who were staying in the house because their baby (who was born 3 weeks ago at 26 weeks gestation) was in the NICU. They were a really nice couple and were told they would have to stay until January. I'm looking forward to hearing more about their baby in a couple weeks when we head back. They also took some time to show me around the kitchens (last week we stayed in a suite with our own kitchen, so I didn't know where anything was!).

On Monday morning, we went to University of Iowa for X-Man's appointment. We saw Lee and his dad at the check in desk. When Lee saw us, he got really excited and started yelling for his dad to look over. I'm going to miss them the next time we go to the house and they aren't there.

We also met a family with an older child who was there for his annual checkup. In the cast room, we met a preteen who was getting new casts for his clubfeet too. I think X-Man liked him.

Since we got a plaster cast with fiberglass on top last week, X-Man had to have his casts cut off with a saw. He was so scared. The saw is super loud, and the plaster was flying everywhere. After a few minutes (and Daddy blowing bubbles), I think X realized that the saw wouldn't hurt him and he started to calm down. They gave me rags and soap to clean his feet and legs - I missed seeing his legs last week!

We spent some more time in the waiting room and X played with some older children. The one child wore a back brace, but he was so proud of his back brace. I hope X has this attitude as he gets older.

After being taken to the examination room, Dr. Morcuende and his med students came in. He said there wasn't a lot of improvement since our last visit, but that this is typical. He said that by week three or four, there's normally some noticeable improvement. They also took Ben, X-Man, and my DNA to study more about clubfoot; they're hoping to locate the gene that causes clubfoot so that they can maybe prevent it in the future.

X-Man was a mess from the time we entered the room. He didn't want to lay on the bed and he didn't want new casts. He cried the entire time; not because he was in pain, just because he didn't want to be there. It was tough. When they asked him which color casts he would like, he just said "no!". Luckily, he already picked out his colors in the cast room. He decided on one orange and one black (as you can see). Unfortunately, he wouldn't let me take his picture without making a sour face!

X-Man and Little Lou fighting over cars

After his appointment, we headed home. I think we arrived home around 10 pm. It was a long day.

Today we drew on his casts with black and silver markers - he loved that. We also booked two flights for his next two appointments - we were able to find really great rates.

His next appointment is November 9. Ben and X will be flying out together, I think it'll be a nice experience for them; I'm just sad that I won't be with him the first time he rides in a plane.

The past few weeks, people have been so kind and generous to us, and we are so thankful for that. We are so incredibly blessed.

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

We're here!

We have arrived in Iowa. Luckily, today was a beautiful day, perfect for traveling! We had quite a few meltdowns on the ride here, but had lunch at a rest stop with a playground; that was perfect for X-Man.

Our picnic lunch






We checked in at the RMH around 3:30 central time and were given a wonderful room with way more than we ever would've expected. The house itself is amazing, 25,000 square feet with a children's library (Ben is reading to X-Man as we speak), game room, play room, playground, four kitchens (plus, we have one in our room), a music room, basketball court, and so much more. Everyone has been very friendly.

X-Man's favorite toy on the playground

Little Lou had fun walking around the playground

After checking in, we set up the playpens (thanks Mom and Dad for letting us borrow one!) and then took the kids out to play on the playground (it was 60 degrees here!). Then, we went out to dinner and came back to the house to play in the playroom. We met another child and his dad who have been seeing Dr. M. In the past few years, I've only met two other people who had children with clubfoot, so it was very encouraging to talk to him and talk about all the progress his son has made. X-Man also seemed very interested in the little guy's casts, and started talking about how he wants to get white casts like the little guy

Having fun in the playroom

I'll write more once we get home. We appreciate everyone's continued prayers and will keep you posted.

Blessings

There hasn't been any new news about out upcoming trips. Today I have to call University of Iowa to verify their rules about visitors - OSU no longer allows any children to visit due to H1N1, so I guess I should make sure that Little Lou is allowed to tag along. If not, I guess she can hang out with Daddy at the RMH. I guess I should also call the RMH to find out if we have to check in by a certain time and what we need to bring. I feel like I've spent all of this week on the phone.

I wanted to share how amazing our family and friends are. This week, I have received multiple calls from people offering money, snacks, and childcare. I feel so incredibly blessed to have such selfless people in my life. I feel even more blessed to have God on my side. This week, I have felt his presence like never before.

I am in a way, thankful that X-Man's feet have relapsed. I of course, don't want to him to have to go through this. I know how difficult it is going to be for him to not be able to walk for a couple of months, and I wish his feet were already corrected. But, just seeing how much people care, and knowing that X-Man is finally getting the best possible treatment is just amazing. I feel so thankful to have the life that I do.

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?

Insurance - how I love and loathe you...

So, I thought I'd provide an update of today's calls and plans... This morning I received a call from a nurse in the precertification department of our insurance company, here's the jist of our conversation:
IN (as in, insurance nurse): Good, morning, this is _________ from Anthem.
Me: Oh, hi, how are you?
IN: Good, you?
Me: Good thanks.
IN: So, we called Nationwide Children's Hospital and they said that they do the Ponseti treatment
Me: Yes, they say that, however they are not a Ponseti approved provider
IN: Oh, I didn't realize that they had to be a Ponseti approved provider
Me: Yes. We were going to a doctor with Nationwide for treatment, but they won't recast children that relapse - they go straight to surgery. There is no one in the state of Ohio who will recast relapsed children.
IN: Oh. Well, you know this Dr. M may not be able to correct your son's feet with castings and he still may need surgery.
Me: Thanks for the negativity (okay, so I just thought this)
IN: I'm going to have to forward this to an M.D. for approval - they should have an answer in 24-48 hours

I'm hoping that we hear back tomorrow, if not, by Thursday.

So, then Nurse Maria at Dr. M's office called me (she is much nicer than Insurance Nurse). I tell her about the situation with our Insurance company. She says that Anthem normally isn't a problem but that if they (Anthem) aren't able to approve us for treatment, they (U of Iowa) can work out a payment plan and give us discounted rates. She assures me that we will figure this whole situation out. What a Godsend. So, we have decided to schedule six appointments between next Monday and December 7. I've been praying all day long that insurance will help us with the costs, but I'm so happy that regardless of what happens there, we can still go and X-Man can have treatment by perhaps the best Ponseti doctor in the Nation, maybe even the World.

I put in a room request at the Ronald McDonald house each Sunday before our Monday appointments. We won't know until each Sunday if we have a room because they give first priority to critical care families and families that are already staying in the house (families get to use their room for as long as they need it). It's a nine hour drive from Columbus, so we will need to leave each Sunday morning and we'll return Monday evenings. We're looking into churches with Saturday evening services so that we can have some sort of worship schedule.

Today, we also went to half-price books (I LOVE that place!) and picked up some books. We're going to give X-Man a new book at each Doctor visit in hopes that he'll stay still during casting. X-Man knows that we are going far away to see a doctor so that he can get casts on; we've been looking at lots of pictures of kids in clubfoot casts. I've also explained that he won't be able to walk with his casts, I don't know that he really understands that part. It'll be tough, but we'd take this over another surgery any day!

So, I would never wish this on any one, but there are definitely some huge blessings coming out of this situation already:
1 - I am realizing how truly blessed I am to have two healthy kids.
2 - My relationship with God has gotten so much stronger over the past couple of weeks. I've been praying more, reading more, and fasting more. And in all this, I'm not worried. I know that everything will work out for our little guy. I'm frustrated that we have to travel 1000 miles each week and that insurance is being difficult, but I know it will be okay.
3 - Ben and I are doing really well. We aren't arguing about silly things and our relationship is much stronger.
4 - I am calming down. I'm not worried about the dishes in the sink - they'll get done. I'm concerned with my family and not the chores and everyday things.

One more thing. This morning when the kids were eating breakfast, I read them Proverbs 13 (since today is the 13th). X-Man asked me to read chapter 15, there was so much that jumped out at me today. Here's two verses that seemed especially appropriate:
Pro 15:13 - A happy heart makes the face cheerful, but heartache crushes the spirit.
Pro 15: 30 - A cheerful look brings joy to the heart, and good news gives health to the bones.

I can't control this situation with the insurance company, but I can control my attitude. And that's what I shall do.

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.