Tuesday, January 29, 2008

And now, for a medical update. . . .

The boys FINALLY had their orthopedic consult this afternoon. I have been anticipating this day for quite awhile since both of the boys have orthopedic special needs. While we have learned a lot from their x-rays, lab work and various other doctor's appointments and consults, we have always known that this appointment would be the most telling.

I actually found Joshua's portion of the appointment quite fascinating. His defect is very rare and we have all been waiting with bated breath (doctors, nurses and specialists included) to see what his treatment options might be. For those of you less familiar with Joshua's condition, he has been diagnosed with sacral dysgenesis, caudal regression and phocomelia. Both of his femur's are absent and he is missing the tibia of his left leg. His little feet (which are not so little) are perfect. Today we discussed several options for Joshua. The first is to do nothing at all. Now, by nothing at all, we simply mean that we would not pursue surgery or prosthetics. This may not seem like a great option, BUT, Joshua has already proven to us that he can and will do whatever he puts his mind to. He is already crawling (his own version of crawling of course) and can sit completely unsupported. . .when we brought him home almost 3 months ago, he was barely rolling over. While conventional thinking tends to suggest that all people should be up on two legs if at all possible, the truth is, there ARE other methods of mobility and those methods are often preferred over prosthetics for many individuals. The second option, which I don't think we would ever consider, is to amputate his feet and fit him for prosthetics. Before we met Joshua, we had considered this option, but now that we have him home, I simply could not imagine taking his feet. He uses his feet. He LOVES his feet. . . .some babies suck on pacifiers or carry blankies, Joshua plays with his feet (and who could blame him. . they are within arms reach!). The third option, which I found to be bizarre, yet fascinating, is to use his ankle joints as knee joints. This would be achieved by essentially turning the ankle joint around (basically, putting his feet on backwards), straightening the feet to act as his lower legs, and fit him with prosthetics. While we did find this option interesting to say the least, like amputating his feet, it would leave him without the use of his feet and I just don't think we could go that route. Finally, the last (and most probable) option is to fit him with "unconventional" prosthetics (fitted over his feet). There is also an option within this option of lengthening his left leg (which presently barely extends past his hip) to help even out his legs making the use of the prosthetic easier and also giving him the option of walking without prosthetics. At present, this is the option that we are most strongly considering.

Thankfully, our orthopedist feels strongly that, because Joshua is still young and still learning how to use his body, the best thing that we can do for him right now is to allow him more time to develop so that we can get a good picture of what his abilities will be. The entire orthopedic team will see Joshua again in 6 months and will reevaluate our options based on his development at that time. All-in-all, I was very pleased with his orthopedist and our visit.

Evan's appointment was very straightforward. While most of Evan's treatment will come in the form of physical and occupational therapies, there are several surgeries that he will need to undergo in order to achieve mobility. The first surgery will be for his feet which are clubbed. The doctor hopes to be able to straighten his feet by correcting only the soft tissues rather than the "bony structure." This surgery will be followed by several months of casting. Once his feet have healed, the doctor will then try to loosen the contractures in his knees. There is a high recurrence of knee contractures in arthrogryposis, so there is a chance that this surgery may have to be repeated later in life, but, these surgeries will hopefully allow Evan to get up on his feet! We will wait a few months before scheduling the surgery for his feet as we feel that Evan needs a little more time to acclimate to his new life before beginning the next whirlwind of events in his life, but we are glad to have a game plan.

Overall, I was very pleased with the visit and am happy to finally have a glimpse of what our options are!

13 comments:

Mark and Courtney said...

Valerie, for Evan's clubfoot surgery casting, check out the new brace by Dr. Dobbs. My husband is a PT and works with him and he's done incredible work on helping children who have club foot. Check out this link or google him for more info (or feel free to comment on my blog and I can email you!): http://www.sciencedaily.com/releases/2007/06/070628161441.htm.

Shelley said...

I'm glad to hear that both boys do have options. We've been through the club foot surgery...and it wasn't nearly as ba as I thought(nor was the casting/recovery). We're in the "get that boy up on those feet" phase now. It's amazing to look back at how far Xander has come in such a short time. You'll see so much of the same with your boys. They are both such handsome little guys....and so lucky to have parents who are taking the time to make the best decisions for their future.

mommajeane said...

I am so amazed at how much alike our little boy, Luke is to both of your boys issues... We went to 5 diff. ortho. ped. surgeons before we settled on what we felt was best. We were offered the Van Ness procedure/Borgieve Rotation plasty (the ankle rotation to a knee). I researched it and felt it was not what we wanted to do. Amputation was also given and we refused... Finally we settled on leg lengthening and muscle releases and he was in external fixators for almost a yr... Now he walks without any help... He was born with his leg fully attached to his back like an accordian and his other leg was webbed and he had a clubfoot... We use the International Center for Limb Lengthening in Baltimore,Maryland. Dr. Standard is a fabulous, caring man.If you ever need another opinion I recommend him highly. Please email me if you need encouragement or help... I have been there and it is a difficult road at first but oh the joy of seeing them overcome...We have 2 children who were given the prognosis of death and never walking... Luke is a living testimony as well as Mya- she was paralyzed by polio and now she too walks. Let me know if I can ever help. mommajeaneb@aol.com

Palmer Family said...

Wow. I am in awe at the love and support you are giving these boys. You have both amazed me through this process and I feel humbled to know you and call you friends. We will continue to pray for your sweet family.
-sarah

Christine said...

All I can say is wow! I'm sure Joshua will be walking sometime soon whatever you decide because he sounds determined too! :) God Bless.

M said...

Thank you for sharing this...it helped me understand more about the boys. I am glad there are options and you are not forced to accept anything.

If you are interested I know Jeannie's blog is about correcting her sons club foot and it has been an amazing journey to watch. E-mail me if you want more info.

Melanie said...

Thanks for the update! It's nice to know where things are currently, what you can expect for the future, but also allowing Joshua the chance to develop more on his own before making any decisions. I'd probably go with the last option as well. I love how you put it... "his little feet are perfect" - Those were my thoughts, too :)

Thanks for visiting my blog, and I'll send you an email w/my number this week. I'm going to be out-of-town for the next week, but I'd LOVE to chat when I get back.

schoolmother said...

Hi Valerie, I hadn't visited your blog in awhile so had to catch up. What cuties you have. I pray that God gives you and your husband much wisdom regarding the various surgeries ahead. While being here in Ukraine I have definitely seen some bundled up kiddos.
Joy

Lisa & Mike said...

Thank you Valerie for keeping us all informed about how things are going with your new little guys! They are SO sweet.

If you begin to consider the option of surgery to turn his feet around, I may have someone you could talk to about it. A friend of a friend had a baby girl who developed a very rare form of bone cancer when she was less than a year old. She had to have a large section of bone/tissue removed from her leg. They did exactly what you described with her affected leg. She's probably 2-3 years old now, so the mom could probably provide you with some personal observations and opinions on this option. If you'd like me to try to get the two of you in touch, please let me know.

Jenna said...

Please check out or blog if interested. www.powellfamily-logan.blogspot.com our son was born with out a tibia in his left leg. Nothing, stops him! I found you blog through a friend, god bless you and your beautiful family.

Charissa said...

I just want you to know I think of you ALL the time as we are trying to adjust to ONE in diapers, and trying to figure out the feeding schedule, etc. You are truly my hero, Valerie!!!!

freasabird2003 said...

I am Melanie's Mom and am so honored to be able to follow this journey with all of you. Your family is beautiful!

Grammy in Savannah, TN

Brian said...

Hi Riebens,
I've really enjoyed reading your blog. I spent a couple of months working at the U.S. Embassy in Tashkent, as well as working at a camp for orphans in Ukraine, and I really have a heart for adoptions. I'm helping my aunt and uncle wade through the process; they're interested in checking out both Ukraine and Uzbekistan. They're a little stumped on one thing, though - trying to find a qualified, trustworthy facilitator overseas. Do you have any advice about this? Can you point them in the right direction for trying to locate someone?
I'd love to hear from you:
manning08@gmail.com
Thanks so much,
Brian Manning