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!

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!

Help Save a Child with Down Syndrome

American Express is GIVING AWAY 2.5 million dollars! The money will go towards the top projects created and nominated by AMEX card members. One of the projects in the running was created by the founder of Reece's Rainbow, Andrea Roberts. If this project is selected, ALL of the orphaned children with Down Syndrome currently listed on Reece's Rainbow will receive FULL GRANTS towards their adoptions. There just are not words to describe how incredible this would be for all of the waiting children and their potential families. While finding homes and families for all of these children would be amazing in and of itself, this project extends far beyond that. In the countries where these children reside, there is no place for these individuals in society. Every time a child with Down Syndrome or other special needs is adopted, governments and members of these societies are forced to acknowledge that these children are wanted and loved. So this project, if selected, not only has the potential to save hundreds of orphans with special needs, but will also have HUGE global impact in the way that these societies view their children and adults with special needs.

I have added a button to the sidebar of my blog that links you to this particular project. YOU DO NOT HAVE TO BE AN AMEX CARD HOLDER TO NOMINATE THIS PROJECT! Simply click on the button and select "Nominate this Project," sign in to vote as a guest or sign up for a guest account and cast your vote! It is quick and easy and your vote could literally save lives!

Without Reece's Rainbow, our sweet, amazing Evan would not be here! As a member of Reece's Rainbow, I have watched countless children come home to their forever families and have seen the incredible miracles that have been worked in their lives through the love of a family. Please, take a few minutes of your time and vote for this worthwhile project!

More pictures from this weekend. . . .

This weekend, after over three months in casts and splints, Evan was FINALLY able to get into the pool for the first time! As you can see, he LOVED it. . . .

Lukas, Maren, Grandma DD (Richard's mom), Evan and Jacob splashing in the pool

He kept saying, "This is so fun!"

A waterlogged Evan!

Jacob

Lukas

And finally, a picture of Maren smiling!

Walking to the park

Maren and Lukas

Lukas

Mommy and Lukas on the Tilt-o-whirl

Evan, ready for church

Evan and Jacob- the best of friends

Lukas, Maren and Jacob before church

Okay, I know this is probably TMI, but I just had to share! We have been working on getting the boys potty trained and have done so successfully for the most part, but the boys just aren't interested in putting their poop in the potty. Yesterday, during our party, Lukas disappeared for about 10 minutes and then came running out onto the patio to inform us, excitedly, that he had put his poop in the potty upstairs and he wanted to show us. Richard went with him upstairs where Lukas proudly showed his daddy what he had done. . .leave it to Richard to document the occasion with a picture! Needless to say, we are proud of Lukas as well!!!

Sticking Together Forever. . . .

This weekend was a particularly special weekend for our family. As many of you know, we are members of The Church of Jesus Christ of Latter-Day Saints (to learn more about what we believe, please feel free to follow the link). As members of the church, we believe that marriage and family are central to the plan of our loving Heavenly Father and that families can be together, not just in this life, but for eternity. In our temples, a sacred ordinance, known as a "sealing" is performed by a person having authority given by God (known as the priesthood) to perform this ordinance. In marriage, this sealing ceremony binds a husband and wife together, not just until death parts them, but for all eternity, if they uphold the covenants (a two-way promise between a person and God) made during that ceremony. Any children born to that couple are considered "born in the covenant" and a sealing ceremony is not necessary to bind them to their parents. However, if a couple adopts a child, the sealing ceremony must be performed to bind that child (or children) to their parents. (I know this is a lot of information to throw at those who are not familiar with the LDS church and we Mormons tend to have a language and culture all of our own, but I hope this explanation is not completely confounding!)

This weekend (Saturday), we had the opportunity to take our family to the Columbus, Ohio LDS Temple and have Joshua and Evan sealed to our family for eternity. Where most adoptions are final once a judge issues a decree, for an LDS family, a temple sealing is the culminating event! We have been looking forward to this day since we committed to adopt our boys and it was truly a great day for our entire family. The ceremony was simple (and by simple, I mean, it really takes less than 10 minutes from start to finish), but beautiful. In the temple, those participating in the sealing ceremony dress in white (in our case that included myself, Richard, Joshua and Evan, although Maren wore a white dress as well) and at the conclusion of the sealing, the couple or family being sealed has the opportunity to look into a mirror together and the reflection is endless (this is achieved by placing mirrors on parallel walls so that they reflect each other, causing the reflection to go on an on) in representation of eternity. What an amazing experience it was to look into those mirrors with all of our children and know that we will be together as a family forever!

Later that evening we went over to my parent's house to celebrate our forever family with our extended family and our friends! The theme of our party was "Stick"ing Together Forever and was complete with a banner and cake with stick figures of our family (thanks for lending us your creative mind Charity)! A great time was had by all!

How grateful we are for a loving Heavenly Father who has provided us with the opportunity to be with our families forever! We could not imagine life without our two newest additions and feel so blessed to know that they will be ours forever!

The Rieben kids outside the Columbus, Ohio LDS Temple

The whole family!

Mommy, Daddy, Josh and Evan

Nana (my mom) and Evan

Maren

Our family banner

The cake my mom decorated for us!

"Mommy! Arthrogryposis!!"

Last weekend, Evan and I had the awesome opportunity to attend the Arthrogryposis Multiplex Congenita Support (AMCSI) Convention in Dublin, Ohio. It was an incredible experience for both of us. Because Evan has endured a barrage of therapies, doctors appointments, surgeries and home nurse visits (among other things) since he has been home, he has become very familiar with the term arthrogryposis and how it relates to him. When we walked into the convention last Friday and he saw all of the other kids and adults just like him, he looked at me and with sheer excitement exclaimed, "Look Mommy! Arthrogryposis!!"

We had the opportunity to hear from several doctors/therapists who specialize in Evan's condition which was like a breath of fresh air, because, while most doctor's have heard of arthrogryposis, it is hard to find doctors who have much experience with treating individuals who have this condition. We were even able to consult briefly with one of the doctors who gave us some good insight on things to consider for the next steps in Evan's treatment. As a result, we have applied to Shriner's Children's Hospital in Philadelphia, Pennsylvania and hope to have our first appointments there in the near future.

Evan had the chance to play baseball at the Miracle League Field in Columbus and even got to do some painting! We also enjoyed an excellent concert by Mark the Marvelous Toy (this was one of the highlights for Evan who LOVES music)! We made lots of new friends, including several people who live in our neck of the woods and we look forward to cultivating some lifelong friendships.

I am amazed at the new motivation Evan apparently gained from attending this convention. While he has always been a hard worker in terms of pushing himself to achieve mobility and independence, he is now pushing himself ten times harder. He has come further in the last two weeks, than he has in the last two months! His new confidence really is inspiring!

I am also very grateful for the opportunity that Evan and I had to spend some one-on-one time with each other outside of a doctors office, hospital or therapy setting! It was wonderful to be able to focus all of my time and attention on him and to be able to learn about how we can help him meet his full potential. It was truly inspiring to watch all of the other children and adults with AMC as well and I walked away from the convention with an even stronger conviction that there will be no limits to the things that Evan will do!

Next year, the AMCSI convention will be held in Philadelphia and we are looking forward to making it a family affair!

Happy to be at convention!

Painting!

Have I mentioned that Evan LOVES to paint and color!?!

Enjoying the Marvelous Toy concert!

LOVING every minute of that concert!

Evan and his new friend Isaiah

Mommy and Evan

You might be wondering what the rest of the Rieben family was up to that weekend! They were all enjoying a fun time at home with daddy and you can read all about their zany adventures on Richard's new blog, Eastern Impact!