2nd time's a charm....

We were scheduled for Ryan bilateral femoral reorientation osteotomies on November 18th. When we stopped in Denver for our layover for that trip, Ryan sneezed. Derek and I immediately looked at one another, hoping it was just a fluke. We continued on to Philly, got situated in the Ronald McDonald house and as the evening progressed, Ryan got more and more congested. We knew we were in trouble. At 5 am we called the hospital to let them know Ryan had a cold, They told us to bring him anyway. After an hour or two, we saw the anesthesiologist and he confirmed what we suspected, surgery was not going to happen. We called the place where we got our charity airline tickets this time around and the wonderful lady there (Frontier Airline's program), changed our flight and we headed home that Friday.
We were rescheduled 3 weeks later - December 16th. Surely he would be fine by then, right? Well, after a trip to our local pediatrician on the 14th followed by an east coast/west coast conference among doctors to discuss Ryan's remnants of this cold, we got clearance to head back to Philly for surgery......and don't call me Shirly!

We arrived on the 15th, headed to RMDH once again. Passed by a crime seen of the latest victim of the Kennsigton Strangler, only a mile from where we are staying, and settled in ready to go. Ryan still had a cough, so we were guarded just in case there was a last minute pulling of the plug and we got rejected again, but, alas, they gave our baby some sleepy juice, which got him loopy and they wheeled our baby off behind closed doors as we left our precious boy in the hands of Dr Van Bosse.





4.75 hours later, Dr Van Bosse came out and let us know that surgery was successful and that Ryan was doing well. There was only one *slight* complication.... as they worked on his fist leg (his right one), after they cut through the femur and rotated it so that Ryan's leg was facing forward, they inserted what looks sort of like an allen wrench into the top portion of the femur. They then placed 3 screws into the bottom part of the bone, thus joining the 2 parts of the broken femur together again. The Dr. got it all situated and then tried to flex Ryan at the hip, to which he did not have much range (only 45 degrees flexion, not enough to even sit), so the screws were loosened and he tried to flex him again.....and SNAP! Broken was the device and off snapped a chunk of Ryan's bone. Apparently the device twisted in such a way that it put pressure where the bend was. We're hoping he doesn't need that chink of bone that broke off. So, the doc started over on that right leg, inserting an even stronger contraption. This is why surgery took longer than expected. Dr Van Bosse said this usually happens only once a year, where the device breaks. We have such good luck!

Today is Friday and Ryan is doing ok. He's been on a morphine, valium epidural cocktail, though we are not sure if that epidural is working, so anesthesia is going to come down and check it today. We should be released from the ICU on Sunday, unless the epidural isn't working, in which case they will take it out of his back and we can head down to a regular room at that time. Derek and I are doing ok - I stayed last night with Ryan and Derek went back to the RMDH, since only one person can sleep over at the hospital. I am a bit of a zombie today, but I'm not driving alone at night on these icy roads with a serial killer in the vicinity. YIKES!

Doing great in Philly

We are on the third casting change for Ryan. So far he has done really well. Yesterday's cast gave him a little bit of a hard time - I think they are giving him a pretty strong stretch - but he is handling it like a champ! His feet have made such good progress that Dr. Van Bosse had to double check the last measurements because he was surprised how well Ryan's feet have adjusted.

To date, Ryan had serial casting previously for 7 weeks starting from the time when he was 2 weeks old, followed by an achilles tendon release surgery at 2 months of age, 2 years of dennis brown shoes and bar for sleeping, ankle foot orthotics daily, 2 1/2 years of physical therapy and now another week of serial casting...see the progress for yourself - pretty amazing.
Here's a comparison from birth:





Ryan got a surprise package yesterday....it was the perfect day for a treat, as he was not too happy with the latest round of casts...



And over the weekend he fulfilled every little boy's dream:


Hopefully this week we will get to visit more friends and family. So far we have seen Ryan's Jersey grandparents - Mor-mor & Papa, Aunt Janelle & Uncle Adam, 2nd cousins Grace and Sophia and my cousin Katie, Aunt Peggy and Uncle Roy, Michele (Noni to the kids), Jake and Abby....it's been nice to visit everyone and get out of the house! Ryan has made a lot of friends and has warmed the hearts of everyone! What a kid!

Thanks for all the well wishes! It's great to know our support system is so awesome!
xoxo
k

back in Philly!

Ryan and I woke up a little before 4am on 10-10-10 to head out for our philly trip. It's going to be a long 3 weeks away from our family, but have no fear - we have "CATER-PICKLE", Ryan's trusty made-in-china plastic caterpillar. We've been setting up shots like this one to send to Devin and Lily each day..."The Adventures of Cater-pickle"...maybe I'll write a book ;)



Anyway, Ryan was awesome on the plane rides - we had a stop in Denver, but not a peep out of him....except for singing his preschool Halloween songs at the top of his lungs while we boarded, earning laughs and smiles from all the ladies around us. We arrived at the Ronald McDonald House in Camden, NJ around 7pm Sunday night, ate our pizza I picked up on the way out of the airport and went to bed for some much needed sleep.

Monday's appointment went well. We met the most adorable little 5 year old with blond curly hair and a personality that reminded me so much of Lily! Her and Ryan hit it off pretty well, once Ryan got rid of his grumpy face. We also met AJ, a little boy from NJ who was about to have his casts removed. Here's a pic of the three, though blurry, it was the best I could get...



We also met Juan, a little 19 month old who flew in from Columbia! Juan and his mom are also staying at the RMDH, so the boys got to play cars and stuff, even though they don't understand what each other is saying. Kids are cool like that.

As far as casting went....Ryan didn't cry, so there's that, but he did growl the whole time Dr. Van Bosse was rolling out the plaster casts to his legs. As soon as they were finished, Ryan turned to me and said "Ok, mommy, now we take them off". Sorry kid. I have a feeling he is going to be more than a little unhappy when we saw these casts off and then put new ones right back on. Most of the evening Ryan did pretty well in the casts. He can still crawl around in them, which is great, but they are big and cumbersome and heavy. He slept pretty well, waking up at around 7:30, just enough to wake me up and then he fell back asleep.



For those who aren't familiar with NJ, Camden, the city I am staying in, is not the nicest. From wikipedia "In 2009, Camden had the highest crime rate in the U.S. with 2,333 violent crimes per 100,000 people while the national average was 455 per 100,000"
THE HIGHEST IN THE US!!! YIKES! So, we are not going out for evening strolls of finding a local playground...but the RMDH is nice and is gated, and I feel pretty safe. Last night, as I was resting in bed, there were flashing blue lights out our window. I thought to myself, ugh - police action right outside the house! A few minutes passed and I noticed the flashing was sporadic.....so I got up to see just how many cop cars were flashing their lights.....only to realize we were having a lightning storm! Haha! Guess I'm a little paranoid ;)

xo
k

the PLAN

So here we are with some major events about to occur. Ryan and I headed to Philadelphia Shriner's Hospital in August to consult with Dr Van Bosse and Dr Kozin. These two doctors came highly recommended from people on the AMC support website. SInce we have had a difficult time with our local orthopedist, we were really hoping to find a team that was interested in treating Ryan. Unfortunately, that team is on the east coast!
Here's the plan.....from Oct 10th-Oct 30th, Ryan and I will be in Philadelphia, staying at the Ronald McDonald House. For this trip, Ryan will undergo serial casting (again) for both of his feet. The goal is to get the feet flatter and well as gain some range in his ankles. We will be sent home in casts for a few weeks, once the serial casting ends.
Then, we will return to Philadelphia for his surgery on November 18th. The surgery is called bilateral femoral reorientation osteotomies. This will put his legs in a better position in relation of the femoral head to the hip socket. He will be in a petrie cast (you can google that) until Christmas-time, when we will once again return to Philadelphia to remove the casts and pick up his new AFO's (ankle-foot orthotics). Then, hopefully we will be done with surgeries for a bit and begin a rigorous physical therapy schedule.
We are excited to see how the serial casting and surgery change Ryan's prognosis and we obviously hope to see him stand on his own two feet unsupported sometime in 2011. We have to trust we are making the right decisions in regards to his treatment, and after traveling to Seattle, Albuquerque, Philly and of course our local Stanford Hospitals, at least we know we have heard the opinions of some brilliant minds, even if the right fit didn't happen until Philly.
Thank you all for your well wishes and we hope you keep Ryan in your thoughts over these next few months. We are all a little stressed and worried and it's going to be tough for this family of ours, but we always seem to find new strength even at times when we feel there's nothing left. We appreciate your support and love - that makes all the difference in the world!
love,
K

link

I taped this yesterday, (July 14th)
Enjoy!

http://www.youtube.com/watch?v=JrV8Vn4dddw

So much to do, so little time....

Ok - so I haven't posted since February....MY BAD! Things have been busy, to say the least. Let's see if I can catch you up to speed.
At the end of March Ryan and I headed up to Seattle Children's Hospital. We were lucky enough to make this journey with our good friend, Alexis and her daughter, Laelia who also happens to have amyoplasia-type arthrogryposis, and yes, that is the dianosis in case anyone wasn't clear. We met the geneticist who literally wrote the book on arthrogryposis and has spent the past 30 years of her life studying the condition (Judith Hall). We also met with an upper extremity as well as a lower extremity specialist. Things went well. The general wrap up quick version was:
Geneticist - Ryan's type of arthrogryposis is not genetic (they have found amyoplasia is identical twins, with only one twin affected). Nor is there any they have found that links it with anything I could have screwed up during pregnancy....nice to hear.

Upper extremity specialist - I begged this man to write me a prescription for serial casting for Ryan's elbows. I have always wanted to try to get him in casts to gain range, but nobody has been willing to do it. Finally - I found one - he wrote me a prescription for serial casting. Hooray. Once I got back to California, I found out the prescription is useless since that particular doctor has no hospital affiliation here.

Lower extremity specialist - gave me his input of not performing surgery on Ryan's hips - to just leave them alone. That is the current trend, not surgery. The plan is to rotate his leg, from above the knee down. So, no big decisions at this point - maybe early next year.

We had a great visit with the PT there. She was pleased with Ryan's mobility and applauded the work we have put in with therapy (3 times per week for the first 8 months, twice a week since then). She was impressed with Ryan's ability to balance on his knees and his emerging knee-walking - she asked how I knew to work on knee standing and I told her I read it in the Arthrogryposis Atlas (the main medical book by Dr. Hall). This PT replied "oh - I wrote that section". Nice.

So - that was Seattle - good information, but really not too much changed (besides not touching the hips). Good trip and great to see our friends. Ryan and Laelia had a blast - it was great to see two kids with the same abilities play together! It seems that our next doctor visit will bring us back east to Shriner's in Philly. Apparently the orthopedic surgeon who needs to be Ryan's doctor is there, so planning that trip is in the works, as are several surgeries that will bring us back east over the next year. I have blown off the May appointment with Dr. Rinsky. For being our local Stanford orthopedist and having a great reputation for being great at surgery, his lack of involvement, action and plan for Ryan, other than Ryan being comfortable in a wheelchair, has never worked for me, so I have shut that door for good.

Since then, Devin has turned 6, Ryan has turned 2, I've been to two weddings - one in Mexico (with 2 weeks of Montezuma's afterwards), the other at Sundance resort. Devin has graduated kindergarten and has lost not one, but two teeth within the past 2 weeks. Lily has completed preschool and has also performed on stage for the first time in a tap recital..... and that brings us to date. Now - the most recent thing is that Ryan got his walker. This thing is amazing. I spoke with the engineer who helped design it and build the prototype seven years ago - brilliant man.
Anyway - I could tell you all about it, but really - a picture is worth a thousand words.....video even more.
xo
k

February Update

So we are at the end of February. Ryan has really exceeded our expectations physically over the past few months. The difference we have seen since just the beginning of November is amazing. He is becoming such an active little boy and we are really having fun watching him blossom.
Ryan and I will be heading to Seattle at the end of March for a special arthrogryposis clinic. They are one of the top world-wide hubs for the condition and geneticist, Dr Judith Hall, will be seeing Ryan. She's in wikipedia if you want to read about her. She is the premier doctor for Ryan's condition....she literally wrote the book on arthrogryposis, and almost any article written on the subject references her, so it is a pretty big deal for us to have the opportunity to meet with her. Ryan and I will be joined by our friends Alexis and Laelia. Laelia also has arthrogryposis and Ryan and Laelia often send videos to one another of their triumphs, while their mothers keep each each other sane. We are glad they are able to join us for this trip.
We also ordered Ryan's first walker. He's been so active that we thought it might be time to give him the opportunity for mobility, even though his legs are not yet strong enough to support him. The walker is pretty neat in the fact that the seat (kind of like a rectangular bicycle seat), moves as his hips move - it is not in a fixed position, giving him the ability to really feel the sensation of hip movement as he moves. When he demoed it at therapy, he took off - down the hallways and out the door. It was amazing how quickly he was able to maneuver this piece of equipment.
On the home front, everyone else is doing great. Derek is keeping busy at work. Devin and Lily will be in ski school for the first time, as we are heading to Tahoe. Lily is really enjoying her tap/ballet class and is getting closer and closer to being able to audition for any casting call for shirley temple that might arise. Devin starts t-ball this week, while I continue to drive....everywhere!
xoxo
k

Ryan's crawls

Well, it's taken a really long time for this and a lot of hard work, but on Christmas Eve, Ryan surprised all of us by showing off his ability to crawl. We honestly thought, especially by all accounts of what we have been told by doctors, that we likely wouldn't ever see this. On behalf of Ryan, I give *raspberries* to them and have learned that sometimes it is more important not to listen to what people say you CAN'T do.
Anyway, Ryan is currently knee walking while pushing his new ride-on train from Grandma & Grandpa and I have caught him several times, trying to get from knee standing to regular standing, so I see this as definitely something we might see this year. Ryan has also begun using a pediatric walker to start tog et around, and although he can get around with this, his gait is completely wrong, but we'll get him working on that once he gets used to the walker.
ON the surgery front, we are not going to see his orthopedist until May or so, but I am hoping to be able to make it up to Seattle the first half of the year to the arthrogryposis clinic they have up there quarterly. I would like some more opinions on Ryan's situation before we take on any major surgeries.