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 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!

Saturday, September 6, 2008

Crazy days of Summer. . .

Wow! I have become incredibly lazy when it comes to blogging! My apologies to all of you who have been patiently waiting for an update. I must say that August was possibly one of the busiest months we have had in a long time (in my world, a long time translates into a 2-3 month time span). So much has happened that I'm not sure that I can fit it all into one blog post without boring every one to tears, so again, my apologies if you find yourselves asleep on your keyboards halfway through this post!

Evan FINALLY got his AFO's (Ankle Foot Orthotics aka Braces) at the beginning of August. For those who are unfamiliar with AFO's, they have two general purposes. The first is to offer support to the foot and ankle for weight bearing. The second is to help keep the foot in the proper position. The second purpose is especially important in Evan's case because corrected clubbed feet tend to regress if they are not properly braced (it's like wearing a retainer after you have had braces on your teeth). Evan wears his braces from about 8 am-7pm every day and his feet look fantastic. Unfortunately, I do no have a good picture of his feet or his braces at the moment, but for the purpose of providing a visual aid for this post, I will try to get some this afternoon!

Evan has also started on his physical therapy rotation again and is doing great! We are still working on strengthening those trunk muscles and he is working especially hard on learning how to get into a sitting position unassisted. We still have a long way to go before we reach this milestone, but he has really made amazing progress. He is also learning how to bear weight on his legs and had literally taken his first steps in learning to walk. We are using a gait trainer in therapy (think oversized, high tech, baby walker) and he is working on learning how to push off the floor to move forward (he has already mastered the walking motion. . one foot in front of the other, but hasn't quite grasped the concept that he has to push off the floor with his feet in order to move forward). We are hoping to get approval for the use of a gait trainer at home as well so that he is able to spend more time upright.

In occupational therapy, Evan is working on self-feeding. His therapist is in the process of making him modified utensils and a cuff for his wrist so that he can start learning how to feed himself with a spoon. He LOVES this part of therapy because it usually involves chocolate or vanilla pudding! He has also started to use his arms and his hands more. He still does not have active movement in his fingers or his hands, but he has figured out how to use them without full function. I will have to work on getting a video to show you exactly what he is doing, since trying to paint a mental picture is a bit tricky, but he has essentially learned how to "pick things up" and "hand" them to me! For example, if I put a pen in his lap, he can move his hand over to it, slide it between his fingers and put it in my hand (right now I keep my hand on the same level as his lap, but he is getting better at lifting his arms a little as well). Because the use of his hands and arms have always been our biggest question mark, this progress is very, very exciting to see!

And now for the most exciting news for the month of August. . . . .Evan started preschool!! Evan started preschool two weeks ago and he is LOVING it! A few days before school started we went to his open house and met his teacher, her assistant and Evan's aide and had a chance to explore the classroom. Evan was very happy with what he saw and I was very hopeful that his transition would be a smooth one. I had decided to drop him off and pick him up for the first week of school because I didn't want to overwhelm him with too many changes at once. The first day I dropped him off he cried when he realized that I was leaving. His teacher told me that he only cried for a minute or two and then a few times on and off during class. He was ecstatic when he saw me waiting for him after school. He cried again the next day when I went to drop him off, but again, his teacher told me that it only lasted a minute or two and that he didn't cry at all during the rest of class. Again, he was so excited to see me when I went to pick him up and his teacher told me that he had mentioned wanting to ride the bus. Evan and I had talked about the bus and he had always been excited about it, but I was still a little nervous about pushing too much on him too fast. He talked about riding the bus non-stop for the next two days until I finally gave in. I called transportation and told them that we were going to give it a shot. When I told Evan he was going to get to ride the bus he was thrilled! Because he takes his wheelchair to school, he has to ride the wheelchair lift on the bus. He was NOT happy about that part! But his bus drivers told me that he LOVED the bus and only cried on the lift (and I don't blame him. . .I rode the lift with him the first day and it's a little disconcerting!). All-in-all he is having a fantastic time at school and on the bus. He has learned that mommy and daddy will ALWAYS come back and I am very, very impressed with how quickly he has adapted to all of these new experiences (these two things, along with gaining confidence and independence, were the main reasons we felt he should go to preschool). Needless to say, we are SO proud of Evan and so excited for all this year has in store for him!
Evan's First Day of School!

Waiting for the bus!

The week before school started, we made our first trip to the ER for an injury! I consider us lucky that we were able to make it 3.5 years with this rowdy bunch without serious injury! Maren was the victim, a pillow, wielded by Uncle Chris, the attacker! I had taken Evan to OT that morning and had dropped the other kids off with my younger brother and his friend for babysitting. While I was gone, a pillow fight ensued between Maren and Chris, a favorite pastime of theirs! Apparently Chris had whacked Maren in the back with a pillow which knocked her off balance and sent her flying head-first into the corner of the wall. I arrived home a few minutes later to find a very macabre looking Maren (blood on her face, shirt and caked in her hair) and a very repentant little brother! He had cleaned the wound and loving placed a band aid over it (in her hair I might add. . .it was cute). I removed the band aid and it only took a slit second for me to determine that it was going to need stitches. The cut was about an inch and a half long and fairly deep. I quickly questioned my brother about her state of consciousness and mind following the accident, reassured him that everything would be just fine and that would likely not lose his position as favorite Uncle and then loaded Maren into the car and headed back to Children's (Evan has his therapy at Children's as well). My daughter is a beast! She did not so much as shed a tear the entire time. In fact, she was practically indifferent to the entire experience! She could've cared less when the nurses cleaned the wound and didn't even flinch when the doctor placed four stitches in her head! I think she was just enjoying being the center of attention, not to mention the fact that she walked away with a new pair of hot pink sunglasses, a Popsicle, a coloring book and crayons and several stickers! And of course, because she had done such a fantastic job, she got to have lunch at the fast food joint of her choice (in this case Burger King). I actually went home hoping that she wouldn't injure herself intentionally in the future now that she knew it provoked royal treatment! But really, WHAT A TROOPER!

After a long, eventful and productive month, we made a road trip to my grandma's house in Kentucky for Labor Day weekend for some rest and relaxation. My younger brother, Ben, attends Morehead State University and works as a trainer for the football team, who happened to be playing my alma mater, Southern Virginia University, that weekend so we took the kids to their first football game (Morehead slaughtered SVU 49-6. . ouch). They loved it (Lukas and Jacob LOVED the game, Evan LOVED the marching band!). The rest of the weekend was spent lounging around, enjoying family and the fact that there was absolutely nothing we HAD to do and nowhere we HAD to be! It was fabulous!

September is shaping up to be just as busy, if not moreso, than August! Joshua, Evan and I will be heading to Shriner's Hospital for Children in Philadelphia, PA this Thursday for appointments on Friday. We hope that, after their appointments, we will have a better idea of what the next few months (and years) will bring for both of the boys. We hope to drive home on Saturday and on Monday, Evan is scheduled to have the same surgery Joshua had in May (and our fingers are crossed that this will TRULY be an outpatient surgery this time!). At the end of that week, I will be selling my oodles of children's clothing, toys and accessories at the bi-annual Dayton Mother's of Twins Clubs sale and on the 21st Richard and I will celebrate our 6th Anniversary! I will officially be starting home preschool for the kids on the 22nd, we'll have family in town the last weekend of September and, before we have time to blink, it will be October already! Whew! I need a nap just thinking about it!

Sometime over the course of the next few weeks, I will also be opening my new family blog, From the Trenches of Motherhood, as this blog was really intended to be strictly adoption oriented. I still plan to post here, but most of our day-to-day happenings will be found on my new blog, so stay tuned for the grand opening!

Again, my apologies for the silence and for the hideously long update! I would promise to do better about updating, but I am afraid I might leave you all very disappointed!