December Iowa Trip

We went to Iowa during the first week of December. I love traveling around Christmas time. It's so hard to believe that last year during the same time, we were flying every week to Iowa. I do miss seeing the airports decked out in their holiday cheer, and I miss that time that I got to spend with X-Man (or Little Lou when the husband took X-Man). This trip, all four of us drove to Iowa.

We made really good time - I was a little nervous for this trip because 1 - it was our first trip with a potty-trained kid, and 2 - it was December. We got to see a lot of snow. I believe snow in the country is so much more beautiful than our city snow. The drifts on the side of the road were beautiful.

'Icebergs' on the Mississippi

Once we made it to Iowa, we checked in at the Ronald McDonald House - it looked so beautiful with all the Christmas trees! We got to meet some wonderful people who helped put our lives in perspective. There were a couple clubfoot babies there, it was nice to be able to talk to a mom who was in my situation last year. I was excited for her on the changes that were going to happen to her baby! We also met a woman who had a child with several heart issues. She said her child had to be revived almost daily - whenever she gets upset there's a chance her child will lose consciousness. I can't even imagine how scary that must be for her. It helps me keep my life in perspective and want to help others whose children were born with defects.

Also, in the house I read this poem. I remember reading it before, but kind of forgot about it. I love it so much and it really does voice how I have felt and has helped me make the most of our situation:

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

Love it. Every time I read it I get a little teary.

Okay, back to our Iowa visit. The morning of X-Man's visit, we had breakfast while the hubby loaded the car and warmed it up for us (since, Iowa is arctic-like in December!). Well, our car wouldn't start. Luckily, there's a free bus that goes between the parking lot across the street and the hospital. The kids actually LOVED the bus!

We arrived at the hospital and got in to see Dr. Morcuende very quickly. Unfortunately, X-Man decided that he needed to throw a huge tantrum. We were still able to get him to cooperate - Dr. Morcuende was very impressed by how good his feet look. He said we'll need to get at least one more set of Mitchell's with the plantarflexion stop, then we'll be able to get a 'normal' pair of Mitchell's.

After our appointment - we took a bus back to the RMH. We arrived just as AAA was finishing up with our car - luckily, it was just a dead car battery. I don't really remember our drive home, so it must have gone well!

I cannot tell you how incredibly thankful I am of all that Dr. Morcuende, and all the staff has done for my X-Man. I am so thankful for Dr. Ponseti who first implemented a non-surgical method of treatment and for all those that have followed in his footsteps.

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?

Iowa - week 6

I have a feeling this is going to be a pretty long post - so, unless you have five or ten minutes to read my ramblings, you may want to come back later :)

This week, we were thinking about driving to Iowa. Special thanks to my sister Kris who was willing to drive out with me. Luckily, on Thursday, Ben found some tickets for a very low rate as long as we flew out on Saturday instead of our typical Sunday.

So, our flight was around 4pm which gave us time to spend with the family before leaving. This week, X-Man and I went to Iowa, and Little Lou and Ben stayed home. The flights went well - as usual, X-Man was very well behaved. From the Cedar Rapids airport, we took a shuttle, the driver was VERY nice. He took us to the RMH - it was strange to be there on a Saturday, almost everyone of the 30+ rooms were booked.

Our home away from home


Since we would be in Iowa all day on Sunday with nothing to do, we decided to head into Coralville and visit the Iowa Children's Museum (it's free for RMH residents). A couple volunteers from the house drove us over to the museum. The museum is located in Coralville mall - we were quite impressed as there is a HUGE ice rink when you walk in. The museum was very nice too - there were lots of pretend stations (a grocery store, doctor's office, ambulance, dentist office, pizza parlor, post office, bank, house, farm and barn), a motion exhibit (you can build cars and tracks and send golf balls down the tracks, there was also a rock climbing wall), a puppet kingdom, and a new flight exhibit (with an actual cesna, hot air balloon, HUGE 2+ story slide, air rockets, air guns, pretend planes, flight simulators, control tower, etc). We had a lot of fun there, and spent 2-3 hours there. We took a break and got some lunch at Panera (their new macaroni and cheese is quite impressive) and walked the mall.

After lunch, we came back to the museum and met Dr. Dobbs' sister-in-law (he's an excellent Ponseti doctor in St. Louis). One thing that I love about being in Iowa City, is that I don't get the dirty looks that I do here; people don't stare at X-Man. People recognize X-Man's casts as clubfoot-treatment. Almost everyone I've run into in Iowa has been very non-judgemental and kind. People seem genuinely interested in him and how treatment is going. It's a great place to be.

Here are a few photos from the museum:

Dr. X-Man, DDS

X-Man the pizza-maker


Buying groceries
He LOVED this walker, in fact, he tried to steal one from a child at the RMH
X-Man the medic

Huge Slide - yes, I did get to carry him up the steps too many times to count!

When we were done at the museum, we called the RMH and asked if someone would be able to pick us up. Unfortunately, there weren't enough volunteers to give us a ride, so they suggested that we call a taxi company (the free bus doesn't run on Sundays). When I called the taxi company, they said they couldn't pick us up because I didn't have a carseat for X-Man. So, I went to the information desk at the mall and explained our situation. The girl I talked to gave us a number to another taxi company. I called them and asked if they could give us a ride. Since we didn't have a carseat, the dispatcher said that it would be up to the driver. Luckily, the driver was willing to give us a ride. It was my first time ever riding in a taxi, so I didn't know what to expect. The driver was super nice - he told me that he spent a lot of time in the RMH as a child for a genetic disorder that he has. I told him all about X-Man. He took us to the RMH and said, I'm not going to charge you. I said "Please, let me at least give you a tip" - he said that he wouldn't accept any money from us. How amazing is that? He could have made at least $15 off of us, but instead did a good deed. There are still good people in this world. Please, if you ever go to Iowa City, use the Yellow Cab Company.

We got back to the house and played in the playroom and had some dinner. A local sorority made us some very yummy cheese tortellini, salad and garlic bread. The girls were so nice, we walked into the kitchen and they immediately started talking to my little guy. We also met a few other children with clubfoot (I counted four other children there!) - there was someone from Russia (this was the 4th country that she's taken her son to for treatment) and someone from Colorado. It was really neat, I met one of the ladies that belongs to the Yahoo nosurgery4clubfoot group and her daughter WW!

Playing at the RMH

The rest of the evening, we played and read books. I gave X-Man a bath and we prayed for a good appointment on Monday morning (I stayed up late reading The Shack - so far, it's really good!).

On Monday morning we ate breakfast (donated by Panera - YUM!) and walked to the hospital. Oh - did I mention, last week, they had the worst blizzard in 20+ years? There was snow all over the place, but the sidewalks were clean. The weather wasn't too bad.

X-Man did much better than normal. He still cried, but not nearly as much as usual. We sang songs and looked at books. Dr. Morcuende said his left foot is 100% corrected (take that ATTT surgery!) but his right foot is still a little stiff. He's hoping that the right foot will be corrected after this cast. They took impressions of his feet for new braces - which should be in by our next appointment on Monday. His braces will need some special inserts because of the stiffness of his feet (likely because of his second surgery).

After his new casts were applied, Maria told me that they will give us his braces free of cost (they are over $500). How amazing is that? They are so good to us. I gave her a big hug and cried a little. I really feel like God has favor on us and takes care of us. I feel so silly when I worry about these things and they're solved in ways that I never would have thought of.

We walked back to the house and ran into Susann and her daughter WW. They were on their way to get casts with Dr. M.

We cleaned our room and did our chores and had some lunch before checking out. Then our shuttle came to pick us up (BTW - if you're ever in Cedar Rapids or Iowa City, please contact the Airport Shuttle Service - they give free rides to residents of the RMH). Susann and WW rode with us to the airport - it was so nice for X to have a friend with casts, and I loved talking to Susann about her experiences.

Our driver from Saturday night is also a TSA agent, we saw him and he recognized us right away. A lot of the other agents recognized us as well (one said - "I see you came with Mommy this week!") It's such a small airport, that they remember you after being there a couple times.

Our flight to Chicago went well. We had a two hour layover, so we did some Christmas shopping and ate dinner (we of course had to buy some more of their delicious popcorn!). The flight home went well, X-Man actually fell asleep.

Flight to Chicago


After our plane "taxied in", X-Man woke up and started coughing. Right as I asked him to please cover his mouth, he got sick. All over the place. He continued to get sick for the next five minutes. I think everything that was in his stomach came out. Everyone was so nice, people were grabbing bags, and giving us paper towels, someone even gave us all her baby wipes. After all the passengers left, I changed his clothes. The attendants (United Airlines) were so nice, they asked if we needed anything and patiently waited for us to get off the plane. The pilot walked us off and asked if we needed a ride. He also wished us luck in X-Man's treatment.

All in all, it was a great trip, minus the puke.

BTW - side note, if you need to get odors out of casts, make a paste of water and baking soda and apply it to the stinky parts. The baking soda will harden, but it won't smell bad!

Delays

So, today Little Lou and I dropped X-Man off at the Airport around 10:45; their flight was supposed to leave at 12:30. Ben calls me at 1:30, the plane is still on the ground. Apparently, there was some sort of mechanical malfunction (thank God they noticed this on the ground!) so they had to wait for a mechanic to work on the plane.

At around 2, the mechanic shows up, then they find out that something else is wrong with the plane, so they have to wait. Finally around 2:45 or 3, they let everyone off the plane because there is something else wrong with the plane. They re-board and finally leave at 4:00pm. I can just imagine how crazy that must've been to have a two year old on a plane for over two hours, not going anywhere.

Now, here's the good news. Their connecting flight in MN was supposed to leave at 3:45. Luckily, this flight was delayed until 7pm, so they were able to catch their flight (totally a God-thing). Then, Ben called the RMH to tell them what was going on (I talked to them earlier in the day and was told that they wouldn't be able to stay there tonight because they would be arriving after check in hours; they did find some hotel accommodations for a reasonable rate) one of the employees volunteered to stay late to check Ben and X-Man in.

Without a doubt, the people at the RMH are amazing. Because of this employee, we saved so much money. The shuttle company from the airport charges $70 round-trip; however, as a RMH resident, we get a free ride each trip (we just have to tip the driver) also, volunteers bring dinner to the RMH most Sundays (so if they stayed in a hotel, they would have needed to purchase dinner) Panera brings breakfast on Monday morning (so they would have had to buy breakfast too). How amazing. I am so thankful for the Ronald McDonald House. They really are amazing.

Ben had a rough day today, but he said X-Man was a trooper. I am so proud of my little guy; I can't wait to see him tomorrow! He said he's going to get one green cast and one red cast, what a spirited little guy! This may be his last week of casts if everything is still progressing. Looking back, it's hard to believe how quickly the past couple months have gone by. I'm so thankful for this chapter in our lives; it has made us stronger as a family and has made us re-evaluate our values. Thank you God.

Iowa - Week 3

Yesterday Little Lou and I dropped X-Man and Ben off at the airport for week three. I was a little worried for Ben because when I got X out of the car and into the stroller, he (X) informed me that he would like to ride a school bus (there was a church bus in the parking area) before he rode the plane. I told him that he needed to ride the plane first.

According to Ben, X-Man did not like security. They let him stay in his stroller, but patted him down (I'm glad to hear that he didn't like some strange man patting him down!). They found out they went to the wrong terminal, so they had to go back through security. This time Ben had to carry him through, but luckily, X-Man wasn't patted down this time. He did well waiting to get on the plane. Ben said they watched planes and talked about which plane they were going to ride.

Their first plane flew them into Chicago, O'Hare. At first, X-Man was whining, most-likely due to his ears popping, Ben gave him some lollipops and that seemed to solve the issue. He apparently was singing Sunday school songs at the top of his (how cute is that?!) and looking at his books.

Ben and X-Man

Looking at books and eating snacks - what a life!



When they arrived in O'Hare, they had a two hour layover, so they had PB&J sandwiches that Ben had packed. The flight attendant gave him some free trail mix, which kept him busy during the whole flight on the way to Cedar Rapids.

X-Man enjoying snacks - doesn't he look like such a big boy?

They arrived in Cedar Rapids around 3:30 CT and were taken to the RMH by a shuttle service.

As usual, X-Man had tons of fun at the house. Since the weather was nice, they got to spend some time outside in the "red car" (cozy coupe). Because of his casts, he couldn't move on his own, but he enjoyed being pushed around by Ben. Some students from University of Iowa prepared dinner for the whole house. After dinner, they spent some time in the playroom.

After a long night (X-Man protested bedtime) Ben and X-Man walked over to the hospital for an 8:00 appointment. X-Man enjoyed playing in the waiting room but started crying as soon as they took him to the casting room. He cried when they cut his casts off. Then, when they went into the examination room, he cried as soon as they put him on the exam table. And, he cried the whole time. He decided that he wanted purple casts this time (yesterday, when I dropped them off at the airport, he wanted blue and yellow - I wonder if Ben talked him out of the Michigan colors). Dr. Morcuende said that he could see some improvement this week, but that X-Man would likely need 3-4 more casts. I am just so thankful that we're going to avoid a major surgery - I don't care how many more times we have to go, as long as we're doing everything we can for him.

University of Iowa Medical Center

After his appointment, they headed back to the RMH for lunch and met another family of a child with clubfoot; they traveled from Colorado to see Dr. M.

Another shuttle took them back to the airport. X-Man did very well on both flights today (hopefully this means there won't be any issues when I travel with him in two weeks!). I was so excited to see the two of them (so was Little Lou). Unfortunately, X-Man was disappointed that we were going home - he wanted to go back to the Ronald McDonald House!

Twins?

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.

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.