Monday, September 15, 2008

Home Sweet. . . . . . Philadelphia?

Do you recall how I mentioned that August was a busy month for us? Well, let's just say that, at that time, I didn't truly understand what "busy" actually meant! Before I begin detailing the many adventures of the past month, I must apologize again for the novel that this is sure to be. Some day I may learn my lesson and return to updating my blog on a regular basis. . .until then, you will have to bear with me!

Our adventures began on September 11th as I piled Joshua and Evan into the car and drove the 9+ hours from Ohio to Pennsylvania for our initial consult with the doctors at Shriner's Hospital for Children in Philadelphia. For those who are unfamiliar with Shriner's Hospitals for Children, they specialize in orthopedic care, spinal cord injuries, burns and cleft lip and palate. They provide ALL of their services free of charge. Recently, Dr. Harold Van Bosse, an orthopedist and a specialist in arthrogryposis, accepted a position at Shriner's in Philadelphia. Evan and I had the opportunity to hear him speak this summer at the Annual Arthrogryposis Support Convention and, after a brief, informal consultation with him during the convention (and many recommendations from other parent's of children with AMC), I knew that I wanted him to take over Evan's care.

As many of you know, Evan had surgery in April to repair his severely clubbed feet (a common characteristic in children born with arthrogryposis). We had our bumps along the way to recovery, but in July he finally came out of his casts and received his first pair of AFO's (ankle-foot orthotics). Although his feet were not perfectly straight or flat, I thought they looked pretty good and his doctor seemed fairly sure that we had achieved the best results we were going to be able to achieve. When we arrived at Josh and Evan's appointments on September 12th, I did not think that Dr. Van Bosse would have much else to say about Evan's feet. I was wrong. The first thing he did, upon seeing Evan, was inform me that his feet would need to be serial casted. To say that I was shocked was an understatement. Arthrogypotic clubbed feet are among the most difficult to correct and the regression rate is extremely high. Knowing this, I had fully trusted our orthopedic surgeon when he told me that, the results achieved through surgery would be the best that we could get. Dr. Van Bosse quickly informed me that that was not the case. Evan's feet were far from where they could and should be.

Evan received his first set of casts that same day and I was told that I would need to bring him back every week to be re-casted until the desired results were achieved (in Evan's case, about 4 weeks). Although I was not completely prepared for the news of weekly trips to Philadelphia, I had received some warning from several of our friends from amcsupport.org whose children were also being treated by Dr. VB, so it did not come as a complete shock. We also discussed the next steps in Evan's treatment (to follow the casting), which are, to address his externally rotated hips and his contracted knees. Both of these issues will require surgery. We have decided to wait until the beginning of the year for these surgeries so that Evan can spend the holiday season pain-free and unrestricted by cumbersome casts (his next surgery, bilateral femoral osteotomies, will require that he be in long leg casts with a bar between his legs for at least 6 weeks. . .not exactly the most comfortable position to be stuck in). This time last year was such a busy and chaotic time for our family and we feel like it will be best for everyone if we can spend a "low-key" holiday season together.

Joshua was also seen by Dr. VB at our September 12th appointment and we were able to learn a few new things about how our little man is "put together!" For example, Dr. VB explained to me that Joshua has no hip sockets (we had previously been led to believe that he had a functional hip socket on his right side). His legs (which consist of a tibia and fibula on the right side and a malformed tibia on the left side) are held in place by only soft tissue. This is simply amazing to me. Joshua moves at lightening speed and is able to stand with support on his right leg. So he is bearing the weight of his entire body on his right leg which is held in place by soft tissues! Like I said, simply amazing!

It was not long after Joshua came home from Uzbekistan that Richard and I decided that the surgical options we had been presented with for Joshua's treatment were not the way to go for him. He uses his body so beautifully and we both felt like, altering his body surgically, would only hinder, not help, him. Prior to his appointment with Dr. VB (who not only specializes in AMC, but lower limbs as well), Richard and I had discussed several non-surgical options that we might like to pursue for Joshua. The option that we were most heavily leaning towards was having him fit with an unconventional prosthetic (a prosthetic that fits over the existing foot) on his right side and having him use forearm crutches for balance. Because he is unable to bear weight on his left leg (he uses it to pivot himself and for balance, but it collapses under his weight), we did not think that a prosthetic on the left leg would be possible.

Upon observing Joshua (and having the prosthetist observe him as well), Dr. VB said he wanted to try fitting Joshua with a short prosthetic on the left side that would support him at the hip (allowing him to bear weight) and would even out the right and left sides, allowing him to balance and stand without support. He was fitted for the prosthetic that afternoon.

I was incredibly happy with the outcome of our visit for both boys, albeit, a little shell-shocked at the new schedule we would be keeping, with weekly trips to Philadelphia. Upon arriving home, I immediately set to work making arrangements for the next several weeks. Thanks to the knowledge of several of our AMC friends, I learned of a program through Midwest Airlines called Midwest Miracle Miles, where Midwest patrons donate their miles so that families traveling for medical care can fly for free. I contacted the woman in charge of the program and she immediately set to work finding flights for Evan and I for the coming week (Thank you BJ!!). I was also given the phone number for the Ronald McDonald House in Camden, New Jersey which was just a short drive from the hospital and was able to make reservations there.

I am a member of my local Mother's of Multiples club and was scheduled to sell at our bi-annual Children's Clothing and Equipment sale the next weekend (19th-20th). In order to sell at these sales, you must also work a shift. I was scheduled to work the sale that Saturday from 8 am-12pm. I wasn't sure what I was going to do. I needed to sell at the sale. We needed the money and we also needed to reclaim the space in our garage! Thankfully, at the last minute, I was able to get approval from the sale committee for Richard to work my shift for me (while my family took care of the other kids) and everything went without a hitch.

Evan and I had another great trip to Philadelphia and I was AMAZED at how much better his feet looked after only one week of casting! We returned again the next weekend (25th-26th) with Joshua and Evan (we even brought Maren along just for fun), so that Evan could be recasted and Joshua could try out the prototype of his prosthetic. We decided to drive that week since, logistically, it was just easier. We made the drive on Thursday, stayed at the Ronald McDonald House that night, spent the next day making the rounds at Shriner's and then loaded up and headed back home late Friday afternoon. Once again, I was amazed at the progress of Evan's feet and, apparently, so was Dr. VB. He had Evan fitted for his braces (AFO's and KAFO's) and told us that we would not need to come back until his braces were ready (4 weeks). YIPPEE!

We arrived home late, late Friday (26th) night and spent the weekend relaxing with Richard's dad and step-mom who were in town for a few days. The next week was fairly low-key and we thoroughly enjoyed finally having a week off from traveling. I was finally able to start preschool with the kids last week (October 6th) and I am LOVING it! My friend Stacey and I are doing preschool at my house on Mondays, Wednesdays and Fridays and it has been a blast so far. We are still getting into the swing of things, but it has been so fun to watch the kids get excited about learning!

Richard and I celebrated our 6th Anniversary on September 21st. Because it fell in the midst of all of the traveling, we had to postpone our anniversary getaway until this past weekend. Richard's mother came into town on Thursday evening so that she could take care of the kids for a few days while Richard and I got away. We left Friday afternoon after we got Evan off to school and the other kids down for naps. We drove down to Cincinnati, enjoyed a nice nap at our hotel, had a quiet dinner together and then spent the evening at Kings Island (an amusement park). We slept in until 9am (gasp) Saturday morning, spent the morning shopping at the new IKEA, caught a matinée at the movie theater and enjoyed dinner together before heading back home. It was WONDERFUL! We haven't had a chance to get away together since Ukraine last November, so it was a real treat to have a few days to ourselves. We definitely need to take those opportunities more often!

Joshua, Evan and I will head back to Philadelphia on the 23rd. Evan will be having his casts removed and will get his new braces and Joshua will be receiving his prosthetic! Needless to say, we are really looking forward to this appointment! We will likely have one more follow-up appointment before the end of the year and then we will be able to enjoy what we hope will be a fairly quiet holiday season before the chaos of the new year is upon us!

Now, for your viewing pleasure, here are some pictures captured over the past month. I was hoping to find a better picture of Evan in his casts to show you how far they are stretching his feet during casting, but this one is as good as it gets for now. As you can see, it looks like his feet are on backwards. It is amazing that he never complains about how uncomfortable they must be (they go all the away up both of his legs).

Evan in his first set of serial casts

Evan after getting his second set of casts removed

Evan's feet prior to surgery in April (I'm not sure why some of these pictures rotated vertically when they uploaded and I'm not quite sure how to fix it, but you get the idea)

Evan's feet post-surgery, prior to casting at Shriner's

Evan's feet after his second set of serial casts were removed

A close-up of Evan's foot after serial casting (again, not sure why this rotated when it uploaded)

This is what Evan's thinks about long clinic days!

Joshua at Shriner's in Philadelphia

You just want to squeeze him don't you!?

Evan with his AMC buddies G and P at Shriner's in Philadelphia (aren't they the three happiest kiddos you have ever seen?). These babies are my heroes!

Maren enjoying her trip to Philadelphia with us

Evan enjoying his break from Philadelphia

You just want to squeeze him too, don't you!?

Picnics with Daddy are the BEST!

Preschool fun- Maren making a caramel apple (our letter of the week was "A")

Our friend, Will, making his caramel apple

Lukas concentrating hard on the art of making caramel apples

Jacob painting a pumpkin

Maren painting her pumpkin at preschool

Richard and I enjoying some quality time together!


12 comments:

Stacey Kirchner said...

I'm SO glad you two got to get away and have fun!

Charissa said...

The feet look amazing! You must be so pleased. Everyone looks great, it's good to see you again. Keep blogging! :)

Tracey S. said...

I loved the picture of Evan, G & P in clinic! It was great seeing you in Philly. I'm sure we'll meet again....I have pretty much committed to being in this lovely fixator until March-Aprilish. Dr. vB is going to lengthen my leg out with the same frame.

Spencer and Kami said...

Valerie - you are an amazing woman. You are my hero! And yes, I could just squeeze Evan and Joshua! They have the sweetest faces!!!

accordingtothemother said...

Wow! His feet look so good. It's nice to see new pictures of everyone -- love those monster t-shirts!

You slept in 'til 9am? You decadent woman, you.

Charity Brown said...

Wow!!! Evan's feet look absolutely incredible!!! I had no idea! That's great!

I also had no idea about Shriners! That is awesome that all of this is working out so well for your family! You are all so amazing!

We miss hanging out with you guys and definitely need to get together soon!! Wii night?

Thanks for finding Ryan for me... you have no idea.... or, I bet you can imagine my panic! I had been looking for him for a good 10 minutes at least... running through the halls! Eeek!

Beth said...

Wow! I haven't stopped by in a long time, and I've missed a lot!

How wonderful to have Shriners to help with the boys' issues. The progress in Evan's feet is amazing!

Happy Anniversary, belated!

Dolores said...

Wow, I'm so amazed by this and following your link to Shriners, I see that they also have them in several other locations! That's wonderful!!! So happy for you and your boys!

Do try to get away at least every six months, that's what we do. So important.

adoptedthree said...

Hey cute pictures! Okay when do we do the play date??? I am open. shriners is the best! We are taking O there for her P surgery and inpatient the week after next in Cincy.
Prayers please!!!

The kids look awesome!

Dunstan Family said...

His feet look so so so good. I am so happy for you. Thanks for being such a great example.

Jill said...

Yes, I want to squeeze both Evan & Josh! They are SO adorable! I hope that Irina will chunk up like Evan has done - she's SO skinny, poor girl!

Coiner Family said...

Wow you guys are like super-parents! Your family is so cute!