Lucky number seven

So last Monday (December 21) was week seven of our Iowa visits. Before we got to Iowa, we spent over thirteen hours in airports. Before I tell you about the good news we received, I'd like to tell you about our crazy travels.

So, Sunday morning, around 8:30 am, Ben dropped X-Man and I off at the airport, about two hours before our flight was to leave. As usual, TSA screenings went well - we had to sit in the clear box so they could test X-Man's casts, but it was no big deal. By the way, since we've done so much traveling (X has been on 21 flights in the past two months) we can now go through the expert traveler line! We did our Starbucks run so he could get his chocolate milk (he LOVES the organic chocolate milk and enjoys drinking it while watching the planes go by). We waited at our gate for a good hour and a half before the gate attendant announced that our plane would be delayed. The lady at the desk was very helpful and got us on a plane from Detroit to Cedar Rapids later in the day in case we missed our flight (due to our first flight being delayed).

Chocolate milk time!


Once our plane arrived, we had a smooth flight into Detroit. The flight attendant asked that everyone wait on the plane and let the people with short connections get off first (I thought this was wonderful - I've never had an attendant do this before). We got off the plane and walked very quickly to the gate for our next flight; unfortunately, we did miss our flight (it was 12:20 and our flight left at 12:10). Since we had seats on the next flight, X-Man and I walked around and had some lunch. We played and read books until about an hour before our next flight was scheduled to leave. Normally we don't go to the gate until right before the flight leaves, but for whatever reason, got there early this time. When we got there , the gate attendant announced that our flight (3:50) had been cancelled due to the weather. She was very helpful and got us onto a flight to Minneapolis (around 5:00) and then a flight to Cedar Rapids (we would arrive around 7 or 8).

Can I just tell you that the Detroit airport is beautiful? It was built in 2002 and is absolutely gorgeous. There's this crazy-long hall that connects the two terminals - it looks like you're under water and they play calming music with lights that change colors in rhythm to the music - very impressive. They also had a bunch of people dancing and doing karaoke (some girls were dancing to a song about "dropping a booty" or something - X-Man felt the need to sing this song for the next ten minutes), and they also have a tram and a bunch of really nice stores, it was like going to a mall.

While waiting for our flight, lots of people stared at us and asked what happened to X-Man. I also met a girl named Sarah who was really nice. She was getting irritated that so many people kept asking about X-Man. I told her how it used to bother me too, but now I consider it an educational opportunity. Our flight to Minneapolis was short and sweet, everything went well.

We didn't have a lot of time to spend in Minneapolis, so we grabbed some dinner and walked very quickly to our gate, which, naturally was on the complete opposite end of the airport. If you've ever flown into Minneapolis, you were probably taken aback by how huge the place is. I was sweating and out of breath by the time we got to our gate (we must have walked a mile to get there - no joke). When we arrived, we were told that our flight would be delayed, so we decided to eat. X-Man was so restless. By this point, we had already been traveling for 11 hours. So, we decided to walk on the moving sidewalks. Hey, anything to make the screaming two-year old happy! Our flight kept getting pushed back farther and farther, about two hours later.

Finally, around 9:30 central (two and a half hours after our flight was to depart) they decided to delay our flight until 7:15 am. Luckily, they gave us a hotel voucher for a very nice hotel suite and meal vouchers. When we got to our hotel, everyone in the lobby (there were probably 10 people in line ahead of us) let us go ahead of them. I was so touched.

We grabbed a snack and settled in around 10:30 central time. I called Ben and told him about all the craziness - God was certainly working overtime on me because I didn't lose my cool at all. Our hotel was so beautiful, some place that we never would stay in, so really, it was kind of a blessing. X-Man and I fell asleep around 12 central time. Can I just say that I love my little guy, but it is no fun to share a bed with a kicking two-year old in casts?! I woke up around 2 am and couldn't get back to sleep. I had to wake X-Man around 4:15 so we could get dressed, check out, and catch the shuttle to be back at the airport by 5 am. Oh, did I mention that the hotel room had a view of the Mall of America?! Man, I wish we could have gone! Oh well, casting is much more important!

The gorgeous bathroom in our hotel


The view from our hotel


When we arrived at the airport, X was very fussy. Luckily, those vouchers covered our breakfast. Our plane got us to Cedar Rapids without any issues. And the shuttle company was kind enough to waive our fees (we normally aren't charged because we normally go straight to the RMH) and take us to the University of Iowa. Ben had emailed Maria and Dr. Morcuende and told them that we would miss our 8am appointment due to our traveling issues. They said not to worry as they would be there all day.

X did better than ever when he got his casts off. Al, from Russia (who we met the week before) was getting his casts off at the same time. Once X-Man realized that Al wasn't crying, he also stopped crying. I was very impressed! Once they took his casts off, we waited in the waiting room. WW (X-Man's friend at the RMH) was coming in for her appointment at the same time, it was great to see them!

We didn't have to wait long. X-Man started crying as soon as we put him on the bed. We sang songs and I told Maria and Dr. M about how well he did in the casting room. Dr. M said "X-Man, Al is here, do you hear him crying?" X-Man stopped crying when he realized Al wasn't crying. Man, I wish we would've thought of this weeks ago!

Dr. M showed me how to put on X-Man's new braces. They are really, really nice. They're much softer than his old braces, and seem like they would be much more comfortable. Like I said last week, his left foot is 100% corrected, but even this week, his right foot still isn't 100%. Both feet are now at 15 degrees when dorsiflexed (normal feet are 25 degrees), so we're getting there. Unfortunately, Dr. M said he may just have stiff feet. It could be from unnecessary surgery, or it could just be how his feet are. He did have to get re-casted this week. Before we went to the appointment, I prayed "God, I don't want him to have to be re-casted, but if his feet aren't corrected, please let the doctor see that," so, even though I was hoping he would be out of casts for Christmas, I know that it's an answered prayer that he was re-casted.

His casting went well (after we reminded him that Al wasn't crying) and we scheduled our next appointment (for mid FEBRUARY!!!). We then waited in the lobby (while watching the piano) for our ride to come. Our ride had to pick up a couple of people on the way to the airport (one of which was an, um, interesting guy who informed us of the role that El Nino plays and how the meterologists have no idea what they're talking about). X-Man serenaded us with Sunday school songs. Oh, to have faith like a child!

When we got to Cedar Rapids, we tried to get on an earlier flight home (since ours was to arrive home at 10:20 pm) to no avail. We were stuck in the airport for at least four hours, so X and I used some more of our meal vouchers and had a nice sit-down lunch at a diner in the airport. We also bought some entertainment materials to keep us busy. The TSA employees recognized us right away as "regulars", I told them we wouldn't see them for a few months, they seemed genuinely happy for us.

After playing for a while, WW and her mom came in. X and WW got to play together for an hour or so, it was really nice. They scooted around the airport together (they're not allowed to walk on their casts for the first 24 hours) and we read books, and colored in X-Man's new coloring book. I love that X has had the opportunity to meet other kids in casts. It's truly been a rich time in our lives.

X-Man and WW (please ignore that my child is trying to play with an electrical outlet) - check out their awesome casts!


Our flights (THANK GOD) left and arrived on time. We got home around 10:30 or so... I have never been so tired in my life.

The good news is that X-Man is on his last set of casts. He'll wear these for three weeks, and then will have the casts removed in our hometown. Once the casts are removed, he'll wear his new braces (with a bar between them) for 18 hours a day. Fourteen of these hours will be while he's asleep, we'll just have to figure out when to do the other four hours... Any ideas or advice on this would be great. I'm worried that he's going to absolutely hate them since they will restrict his walking (although, I thought this about his casts and we see that they haven't held him back!). My wonderful sister Sam said that she's willing to help me make a padded cover for the bar. Maybe if we let him pick out the fabric, he'll like it a little more.

I'm thinking we'll postpone his party until after he gets his casts off so that we don't have to worry about him injuring anyone during his party (I got a black eye last week from his casts).

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!

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.

Awesome article!

This is definitely a feel-good article. I am so thankful for them. Because of people like this family, our son is able to go to Iowa and receive treatment.

Thank you Mr. and Mrs. Whitmore!

http://wcco.com/health/minnesota.couple.donation.2.1350296.html

Dec 4, 2009 5:18 pm US/Central

MN Couple Donation Intended To Continue Doc's Work

IOWA CITY, Iowa (AP) ― The gift from Bob and Molly Whitmore of Eden Prairie to the Ponseti International Association is intended to let more children around the world benefit from the work of famed orthopedic surgeon Ignacio Ponseti.

A Minnesota couple has given $1 million to an association that trains doctors and nurses to treat clubfoot with a method developed by former University of Iowa surgeon Ignacio Ponseti.

Ponseti developed a low-cost, non-surgical alternative to treat clubfoot, a genetic defect that leaves children unable to walk normally. He died Oct. 18 at age 95.

"Right now, we are not at a point where we can be self-sustaining, so this gift will allow us to achieve our fundamental goals of worldwide education of the Ponseti method," said Dr. Stuart Weinstein, an orthopedic surgeon who trained and worked with Ponseti from the early 1970s until Ponseti's death. "Even though we have a foundation, we don't have any funds."

The money will allow the Ponseti International Association to hire a full-time staff for fundraising and pay part of the cost of sending physicians to teach the method in dozens of countries. The association also hopes nurses, midwives and physical therapists can learn the method and take it back to places with limited access to doctors.

Bob and Molly Whitmore's donation is the largest the association has received since it was started in 2006.

The Whitmores, of Eden Prairie, Minn., have close ties to Ponseti. Bob Whitmore's father, Bill, was a longtime orthopedic surgeon in Davenport, who studied under Ponseti and helped train African doctors in the method. Molly Whitmore's brother, Matthew Osterhaus, suffered from clubfoot and was treated as a child using the Ponseti method.

Osterhaus went on to run for the University of Iowa's cross-country team.

Ponseti developed his method in the mid-1940s, and in the following decades saw or advised in the treatment of 60,000 patients, most of them young children. His method involves gentle manipulation of the foot, plus the use of plaster casts to hold the foot in a new position while tendons and muscles stretch.

Dr. Jose Morcuende, a University of Iowa physician who worked with Ponseti for 18 years, said the low-cost treatment is ideal for developing countries.

"You are not using the time for the (operating room) that they really need for traumas and infection," Morcuende said. "The impact is tremendous in developing countries."

Though Ponseti perfected the method decades ago, Morcuende said it received little acceptance in the U.S. and the rest of the world until this decade. It has been endorsed by the American Academy of Orthopedic Surgeons, and the National Institutes of Health and the Centers for Disease Control support initiatives to promote the practice.

Some of the money will likely be used to send Ponseti International Association doctors to conferences in Guatemala and Russia next year, Morcuende said, though a final decision hasn't been made.

"Right now, most people are interested to learn the method," Morcuende said. "And that's why this money is going to be extremely important for us. It will allow us to go much faster than before."

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.

Heading to Iowa in the morning!

Tomorrow, X-Man and I will be flying to Iowa. I'm a little nervous because I get a little bit of motion sickness in planes; I also get scared with take-offs and landings. Luckily he's flown before, so hopefully he can help me to be brave!

I try my best not to complain, but I am disappointed in the airline industry. We're trying to find tickets for November 29 - 30 and December 13-14, but all the tickets are $200 more than other weeks (that's $400 more for two tickets). It's so frustrating! I'm trying to brainstorm what other options we have. We're thinking about maybe staying out there for a week so that he can get two sets of casts in one trip.

At any rate - we're still feeling incredibly blessed to get to see such a wonderful medical team. I have more things, people, etc, to be thankful for than ever.

When we return on Monday, I'll have an update on our visit. Hopefully they'll tell us that we only need to come out one more time - that would solve our traveling dilemma!

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?

Getting around

So, my little guy is now walking in his casts! What a tough kid. Please excuse the quality of the photos; every time I tried to take a photo he would stop walking, so I had to be sneaky!

We're baaack!

So we've been out for a while; back in May Ben won a trip with a local radio station, so we decided to spend a long weekend in San Diego. The kids stayed at my parents house and had tons of fun. Since we were out of town (Dr. Morcuende was also out of town this week), there aren't any updates in terms of Iowa trips; however, as usual, God has richly blessed us this week. I'll share some awesome things going on in our life:

1 - We had a great trip. With all the the craziness in our lives over the past month, there's been little time to communicate, so it was good to catch up. It was so strange to go out without worrying about kids menus and whatnot. We also spent a couple hours in Hollywood CA. We saw so many people digging in the garbage and then eating it. It completely broke my heart. I realized that even though we don't have much, we have more than enough.

2 - Our church takes such good care of us! Our church took up an offering for us so that we can fly instead of drive out to Iowa. We didn't ask for this; our church family gave it as a gift. I received a call on Sunday about the offering and was told how much they raised. It was far beyond what I could've ever imagined - I feel incredibly blessed. We will be able to fly out for most of X-Man's treatments and if we have any additional money after that, we will be donating it back to the church so that other people can be blessed in this way. I really don't know what I'd do without our church family. So many people have offered money, food, childcare, traveling companions, and even their cars to borrow. It's just amazing. It really brings tears to my eyes.

3 - Our family and friends are amazing. Just like our church family, people are offering so many gifts that it's almost overwhelming - in a good way. It's amazing that we haven't had a chance to ask anyone for anything - the generosity of our friends and family has covered expenses and fears and so many other things.

3B - Our family and friends are amazing, part B. My parents graciously watched our children and my sisters and brother sacrificed sleep, toys, going out, and even bedrooms to make sure that our children had fun and had some sort of normalcy. Ben and I really needed a chance to just be a couple - and we got that this past week. It was wonderful, of course I missed our children, but we had a lot of fun.

3C - Our family and friends are amazing, part C. Our dear friend Josh housesits for us whenever we go out of town. He's such an amazing and selfless friend. On Friday evening, Ben remembered that he left a can of pop in the freezer; Josh drove over and cleaned up the explosion of pop all over our freezer. And, today, Ben went to get the lawn mower out and noticed that our garage was clean. If you've ever seen our garage, you know that this is a HUGE deal. I'm not sure if Josh did it on his own or if he had help, but it is amazing.

God has blessed us so richly. As crazy as things have been lately, I really do believe that I live an amazing life and am so thankful for it.

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.