Wednesday, December 30, 2009

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).

Tuesday, December 15, 2009

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!

Monday, December 7, 2009

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.

Sunday, December 6, 2009

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!

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."


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.