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.

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 four recap

Week 4 = yellow casts
So, last Sunday and Monday, X-Man and I were in Iowa. I've been meaning to update you all but have been so busy. Here's a recap:

Sunday morning Ben and Little Lou dropped X-Man and I off at the airport. We got there about two hours before our flight took off. When we arrived, TSA had us wait in a glass box so that they could test X-Man's casts for explosives, drugs, whatever. They wanted him to sit in a seat by himself, but he completely lost it. One of the TSA agents said I could hold him in my lap - so I chose to listen to him. They were very nice, I'm glad that they do all that testing even if it is a little inconvenient. After all the security stuff we had about an hour and a half to wait for our plane. We treated ourselves to some Starbucks and watched planes.
Our first plane

X-Man loved looking at books during our flights

Our first flight was to Chicago O'Hare. I cannot believe how big that place is, seriously, I think it's bigger than my hometown. HUGE. We had a three hour layover. We got some popcorn and ate lunch (Ben packed our lunches for us). Then, we spent about an hour watching planes and reading books (one of the families at our church gave us boxes of books last week, so those were life-savers!). Unfortunately, the layover was during his normal naptime so he was very restless. We walked up and down our terminal for a half hour or so to burn energy. People stared - it still bothers me. Some people asked "what happened?!", that used to bother me a lot, but now I see it as an educational opportunity.
Watching planes in Chicago

Our second flight was to Cedar Rapids; when we arrived, we took a shuttle to the Ronald McDonald House. Our driver was nice.

We played for a while at the RMH and then ordered dinner. I didn't meet anyone new this week, there didn't seem to be a lot of people in the house. We spent a lot of time in their extensive library reading books, so maybe we were to sequestered to meet new people.

On Monday morning, we walked to the hospital. It was pretty cold, but the hospital is only maybe a half mile away so it wasn't too bad. Once we arrived, we played for a few minutes in the waiting room (it will be a miracle if we don't end up with H1N1 by the time we're done with all his visits!) and then went back to the cast room. He immediately started crying and saying that he wanted to keep his purple casts. We sang to him and talked to him - he still cried. Once they were done taking off his casts, he was fine. The skin under his casts was so dry - he scratched his legs and they began bleeding. Poor guy, we need to remember to bring his eczema cream next time.

Next they took us back to the examination room. We read books and he continued to scratch his legs. As soon as Dr. Morcuende and his team entered the room, he began crying again, so they left for a few minutes. When it was time to get new casts, X-Man was very upset. We tried toys, books, bubbles, etc. Finally, we discovered that the alphabet song kept him from crying so we sang that twenty times. One of Dr. M's med students/residents is from China and one is from Japan, nurse Maria jokes that the residents could learn their ABC's in English from X-Man.

Dr. M said that he thinks only one more round of casting should be necessary, maybe two on his right foot (YAY!). It's so nice to have an end in sight. I'm so glad that we were able to avoid surgery.

After our appointment, we watched the self-playing piano in the lobby and then headed back to the RMH to play and get our daily chores done.

The shuttle service took us to the airport and we headed home. X-Man did very well on all four flights (two each day). He loved singing and looking at books.
Waiting for the shuttle at the RMH

All in all, we had a great visit - better news than I imagined. I feel so blessed; just all that is going on makes me so thankful.

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?

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.

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.