wrapping up 2008

So it's been a busy time for everyone and let me be the first to apologize for not keeping Ryan's blog up-to-date. Let's see if I can wrap up his progress since we last wrote in September.

From September through November, Ryan continued to wear his "Dennis Brown bar" and nifty suede booties to keep his feet straight, though by November, Dr. Rinsky has had us use them about 1/2 of the day (generally when Ryan is asleep). His feet look remarkably better than they were and it amazes me when I look back at the pictures posted on this blog from May/June.

We saw an upper extremity specialist in Sacramento, at Shriner's hospital. That doctor gave us a very positive outlook for Ryan's arms, especially his hands. He told us to continue with the stretching of the elbows and to check in again when Ryan is close to a year old. Hopefully we will gain a bit more range of motion by then (he currently has about 90 degrees in his left arm and about 40 in his right).

November we checked in again with Rinsky, this time to see about Ryan's hips. We did an xray, but the Dr was unable to make a diagnosis based on it, so he ordered an MRI. Before the MRI, Ryan, myself and Grandpa went to Albuquerque, where we met Dr. James Drennan. We were recommended to him by a bay area Dr/author on neuromuscular disorders who has been so very helpful to us. Dr Drennan was a pleasure to work with and spent an hour and a half with Ryan. We saw him to get his opinion on what to do about Ryan's hips, if they are out of socket, if we should move forward with surgery (apparently it is pretty controversial to do).

It turned out that it really did not matter too much the recommendation as we recently received the results of Ryan's MRI. Basically, and I am conveying this in as simple terms as I can, Ryan's hip sockets are not formed properly. Instead of a nice "C" shape which the socket should be, Ryan has more of a "J" shape. So, while his bone appears to be in socket, it is, in reality, just resting in the area it is supposed to be, but nothing is keeping it there. We have not been in to see Rinsky to discuss the next step at this point(we actually found out the results of the MRI through Ryan's new PT).

On a brighter note, Ryan continues to become more mobile and is rolling and wiggling to get from point A to point B. We are currently working on him using his passive range in his left arm to rest against the highchair in order to get a biscuit to his mouth. He's almost there and I will soon get a video on to show you all this feat! As mentioned earlier, Ryan has a new physical therapist, Jessie. She is from New York and she means business when it comes to getting Ryan functional. We are glad to have someone who seems to work hard for our son and we look forward to his continued progress. We have said goodbye to our friends at Stanford, Amy the PT and Jennifer, the OT - they both have been a great help to our family and we are much appreciative for their efforts.

Anyway - I have to log off now and I will update more by week's end hopefully.
-K

Ryan in the tub....

This is the first time I've tried Ryan in the tub like this...usually he doesn't have this much room to spread out and it was cool to see what he could do! Enjoy! xo Kiersten

Video

ok - it's been a few weeks since I tried this and I am doing it "unsupervised" from Derek.... cross your fingers... This is from 9/4 xoxo Kiersten

Ummmm...?

Derek here. Yeah, that's right -- I'm checking in after an absence that started after posting #1.

I just wanted to throw a general "THANKYOU!!!" out there to all of you who have been so unbelievably helpful/supportive/patient/encouraging/(lots of other nice words go here).

Kiersten - There is no way either Ryan or I would have made it through these first four months without you. If it was just him and me, we'd be staring at each other with matching drool puddles under our chins. You rock. And you're hardcore. (If you're unfamiliar, 'hardcore' is a good thing -- ask Devin)

Alexis - You have managed to send more support and encouragement to us than you will ever realize. Thanks to you and Laelia for letting us piggyback on your strength and example.

Grandma, Grandpa, Aunt Jen, and the rest of our local supporters - Thanks for being there day after day. For watching whoever we need watched whenever we need it. Thanks for always saying "yes", even when it means rearranging your schedule for the 100th time. Thanks for letting us stay quiet when we need to, and for being there to listen when we need it.

For our more distant supporters - Thankyou for calling to check on us. Thankyou for emails that let us know that you're thinking about us. Thankyou for cards that remind us of everyone who thinks about us and Ryan and the day-to-day challenges. Thankyou for all of your efforts -- there are days that those emails and letters and calls make all the difference, even if we don't tell you.

That just about covers it. I just can't prattle on all day about this stuff, I have important things to do. Plus, I don't want anyone getting a big head. Unless your head is unusually small right now, then, by all means, let it swell a little. Ummmmm...gotta go.

-Derek

Ryan's update

We headed to Shriner's hospital yesterday. Derek, Ryan and I left the bay area and made the 2 hour drive up to Sacramento. Ryan did great in the car - not a peep out of him. Once we got there and registered, we waited....and waited....and waited. By the time we saw a doctor, we had been waiting for 2 1/2 hours. We were happy that someone else took a look at Ryan, at least for that second opinion. The doctor we saw knows Dr Rinsky - she told us that he is a great doctor, well-respected and after looking over Rinsky's notes on Ryan's treatment so far, she let us know that everything that has been done thusfar is what should be done and that we would not get any better care than we are getting with Dr Rinsky at the Shiner's hospital. She also let us know that if it were her child, that she would have them with Dr Rinsky. That was reassuring. We did, however, make an appointment to head back and see an upper extremity specialist October 2nd, mostly for Ryan's right elbow, which barely bends at all.

We were told that the hip surgery planned for Ryan in a few months is a bit controversial. Sometimes the hips actually become more stiff after the open reduction surgery. So we will have to do some research on that one. All in all, it was a hard day, as we basically had to re-live all the heartache that comes with a diagnosis of amyoplasia, but we are thankful to live so close to a great orthopedic surgeon and we will continue to try our best at working with Ryan to get him as close to functional as he can possibly be.

I want to thank all of you who have donated books to the book display at Ryan's therapy. I can't tell you how proud I am of my family and friends coming together and helping me with this project. Thank you! EVERY single book there is now one that has been donated on Ryan's behalf and they removed the old, torn and battered books that were previously there. It looks wonderful. The therapists are also using these new books during therapy, especially with the kids who have trouble eating...I guess it distracts them and it has made a real difference, so thank you again!!!!

My plan this weekend is to get a video posted here to show you what Ryan is up to. He has quite a charming smile and is so sweet and easy. Devin & Lily both start preschool this week and are very excited for that. So is their Mom!

xo
Kiersten

On to the AFO's

We took Ryan's casts off on Thursday night. Unwrapping them felt like a little mini Christmas for me, as I was super excited to be done with the casts! Ryan got a well-needed bath at Grandma's house after the casts were off. Friday morning, Derek and I went down to see Dr Rinsky with Ryan to pick up his AFO's and to be schooled on how to put them on. The funny part about that is when we got home, I realized (after reading the instructions that came with the AFO's), that Rinsky had them on the wrong feet. I guess men just really don't ever read instructions, huh?

Anyway, here are a few photos of Ryan's feet from Thursday night plus one really cute one from after bath time. We will see Rinsky in a month, we will head up to Shriner's hospital on Aug 25th, we will continue to see Amy and Jennifer for PT and OT at Stanford weekly and in a few weeks, we should be begining home visits from Early Start to assist in more therapy for Ryan. Yes, I said in-home....HOORAY! Plus, I have a call out to Laelia's OT (Laelia is our little friend in San Diego) - this OT has configured the coolest elbow splint contraptions and I hope that maybe if I bring Ryan down there to San Diego, maybe she can make a pair for him. Elbows would be nice to have :)

I will get some more pictures up later of Ryan's AFO's so you can see what I am talking about. Right now, the bar seems to be bothering him the most and when I say bothering, I really mean it makes him scream at the top of his lungs non-stop until I have to take them off before he *up-chucks*. Hopefully he will get used to them soon.
Love,
Kiersten

Ryan's ANKLES!!!!!

Well, we got to see the results of Ryan's surgery. He did very well getting his casts off and we were very pleased with the results, which you can see here...especially if you look down at our very first post from mid-May.
Ryan's last casts (at least for a while) come off a week from Friday and he will begin wearing his AFO's (ankle/foot orthotics), which are shoes with a fixed bar between them.

Ryan still goes to PT and OT weekly...he got fitted for new splints for his wrists - ones that he can wear all of the time. I have decided to spear-head sprucing up the waiting room's children's books display at Ryan's therapy. If you want to donate a child's book on behalf of Ryan, just send it to Ryan and we will make sure it gets to the therapy's waiting room. I already donated the CD player I had bought for Grammie when she was in the hospital, so the therapists can incorporate music into their therapy....a fitting home for the CD player, I think! Now Ryan can be stretched to Puccini!

1st surgery - July 14th, 2008

Well, we finally got to the day of Ryan's 1st surgery. We all woke up around 4:30am and headed to the hospital by 6:30. We got in and everything went pretty smoothly. Dr Rinsky told us that he was able to get Ryan's feet bent further than he expected once he cut the tendon. He will get his new casts off the last week of July and get recasted for another week or two after that. Another tendon release surgery may be necessary in a month or two, but we are hoping for big progress out of our boy and his feet.
I won't blog for the next few weeks, as nothing is really going to change, so if you have questions, feel free to email me. And most of all, thank you for the love and support you have given us....we've needed it!
Love,
Kiersten & family

Yeah - the 6th casting is done!!!!

After a LONG and exhausting journey, Ryan's sequence of serial casting is over. Our big 2 month old is scheduled for his first surgery next week. He will go under with a mild general anesthetic, and the procedure is pretty simple, I have been told - no overnight stay. According to Rinsky (Ortho Doc), Ryan will most likely need to do this again, as his feet are "pretty severe", but he said it would not involve the weekly casting that we have done thusfar.
In physical therapy, Ryan is getting to like Amy, his PT. She plays with him while stretching and he throws her back a smile or two, a few coos, and then some crying. It has become a little easier to stretch his joints - I've noticed a difference in both his knees (I get to see them the mornings we head to ortho, as I remove the casts at home), and his wrists have more movement as well. We also think we are seeing some quadriceps movement happening, which is great because initially Rinsky said there was none. Still no movement in those biceps though.
Ryan meets his new hand specialist next week, her name is Jennifer. I am anxious to hear what she has planned for Ryan's hands. He has been using splints throughout the day, which I can remove when they start to bug him and we still see good open/close movement in both hands.
The worst news of the week is that both of Ryan's hips are dislocated. We found this out last week at his ultrasound. This means that he will have surgery to try to get them into the socket. This is more of a major surgery and will not be done until Ryan is at least 6 months old. Hopefully, enough of the socket has formed so that the hip joint can stay in place. I am also told this dislocation of Ryan's hips do not hurt him at this time.
Wish us luck for next week!!! Is 6am too early to have a cocktail in the waiting room????

5th casting

Well, another week where I am delayed with getting pictures up on this blog....
Anyway, we went in Tuesday for another packed day of appointmens. We started in the am with physical therapy. Since I remove ryan's casts weekly, I scheduled the PT for the same day as ortho so that the therapist could work Ryan's legs a bit. I am concerned that he has been in these casts for so long and hasn't worked the muscles that he does have, that I thought it was a good idea to schedule things this way, even if it does make for a long day.
It's nice to have someone else do the stretching of Ryan's joints. The wrist splints he got from his OT last week seemed to have loosened up his wrists noticably, so I hope that continues to go well. He will get fitted again this week for a 2nd pair of wrist splints, this time they will be ones where he can move his fingers and thumbs. Since the OT and PT is in the same office, Ryan has many admirers when we head in....it's amazing how quickly the medical group gets to know who you are. I still don't know all of their names!!!
By the time we got to ortho, I was exhausted, but Ryan still had quite a bit of energy to continue expressing his displeasure. Rinsky said that Ryan's feet were more or less at the point we wanted them at at this point....which surprised me because they still look like a wreck to me, but he clarified that we have only been turning his ankles from their inward position to a straight position...not working on making his feet flat. So, we are wating to be scheduled for surgery #1, which looks like it will be the week of July 14th. This surgery is a tendon release surgery, for his achilles tendons, which should help to flatten his feet. After the surgery, he will have 3 straight weeks of casts. Oh, and he has an ultrasound scheduled for this Tuesday to see what is going on with his hips...if they are dislocated or not.
Ryan has his first cold.....from his big sister lily, who refuses to listen to her mother and slobbers her 2 year old kisses all over Ryan's face. Oh LILY!!!! Other than being a little fussy from congestion, he's doing great, eating like a champ, and keeping his parents up from 3am to 7am....apparently he is on NJ time.
Love you all.....I'll get the pics up hopefully on Sunday.

4th casting

Once we returned from NJ, it was back to doctor appointments. Ryan began both physical therapy and occupational therapy. Physical therapy will focus on stretching at this point, while occupational therapy is concentrating on his hands. Ryan was fitted with custom wrist splints, which he wears while he is napping.
Ortho said we would look at the beginning of July for Ryan's first tendon release surgery. He was, once again, pleased with how Ryan's feet are looking.
Ryan has begun to flash his gummy smile around and he continues to be a pretty easy baby, all things considered.

Ryan in NJ

OK - I'm revising this first line from last week, as there is a picture of Ryan's 3rd casting I was able to get up today. I tried to get 3 pics up, but I have not figured out how to get multiple pics on the single posting..... the rest of this post is the same as it was last week...
Ryan did AWESOME on the flight out. So did Devin and Lily, but Mommy forgot to pack some cash, so no cocktails during the flight (which I really could have used).
It's been record hot here in NJ - 100 for the past 4 days. This has made us stay in, as I don't want to risk Ryan out in full leg casts in that kind of heat. Needless to say, it has been relaxing because of that, just sitting back, watching some movies, etc.
Ryan had his 3rd set of casts put on June 4th. He will go in again once we return to Cali and have round 4 put on June 17th. He also starts both physical therapy and occupational therapy Monday, the 16th, and we are looking forward to getting that started.
He's still eating like a champ and has begun to throw a smile once in a while, which is a joy to see. I promise to get pictures up of this vacation and Christening as soon as I get back.

2nd casting 5/28

Today Grandpa joined Ryan and me as the first casts came off and we saw the progress of Ryan's little feet. As an added bonus from the casts, his legs loosened up a bit, as you can see from the pictures (which we will try to get in focus for you next time). Dr Rinsky was pleased with how Ryan's feet looked today and also liked the range of motion Ryan had after just one week of casting. We are planning on 6 weeks total of casting, then Ryan will have his first tendon release surgery. After that, Ryan will have casts on for 3 weeks straight and then the doctor will assess where we are at - either we will continue with more casting or we will move to braces for his legs.
After our trip to NJ in June, Ryan will meet up with his new physical therapist (PT) and his new occupational therapist (OT). Once we meet them, Ryan will be fitted with arm splints to help straighten his wrists.
Ryan is eating like a champ. Devin and Lily are enjoying the newest addition to the family and they both shower Ryan with lots of hugs and kisses, sometimes a little too enthusiastically! Derek and I are looking forward to spending time back east and introducing everyone to the little guy.

First Casting - 5/21/08

I see Derek has already slacked off on "keeping up with the blog"..... Last Wednesday (5/21), Aunt Jen, Ryan and I went to have the first casts put on Ryan's legs. After some pretty solid crying, Ryan ended up with some rather fashionable thigh-high fiberglass casts. Needless to say, Ryan slept all the way home from the doctor's office that day.

Before
After

Because nothing ever works right the first time...

Alrighty then, now when you post comments they will actually come to our email accounts. No more noticing several days later that someone had a question or left us some kind words. Of course, if you don't feel like making a comment that's public, you can still email Derek or Kiersten.

Intro to your new orthopedic surgeon

The short version...
If Ryan is going to learn to stand or walk, he is going to need something to stand on, so priority #1 is getting those feet and legs straightened out. Ryan starts the first casting on Wednesday and then continues to get a new cast every week for a while. From what I understand, yes, it's a regular little plaster cast just like when Mom and Dad were kids. (I think that it's just feet/ankles to start, so the casts will probably be to his knees -- Derek)

The long version...
Kiersten, Derek, Aunt Jen and Ryan met Dr. Lawrence Rinsky on Wednesday, May 14. He is the pediatric orthopedic surgeon who is in charge of straightening out most of Ryan's crooked parts. Stanford being a teaching hospital and all, a young doctor named Arthur Lee came in first and started with something like this:
--------
"...so Ryan has some stiffness in his joints....hmm....can you describe, what you mean by that...?"

(Aunt Jen -who is holding Ryan- turns him so that young Dr. Lee can
see his legs neatly folded together)

"Oh...Okay then."
--------

Dr. Rinsky came in shortly and told us that commonly in cases like Ryan's, not all of the nerve pathways develop, meaning that some of the muscles can't contract. Hence -- his arms are straight because his triceps, which work, pull them straight, but his biceps aren't doing their part to bend them. Dr. Rinsky also stretched and bended Ryan and was generally positive about the range of motion that Ryan did have in both his legs and his arms. Down the road, there may be tests and muscle biopsies to try to ascertain what we can hope to get out of those little arms, but we have not confirmed what the condition of those muscles or nerves are.
The above concepts apply to his legs too, but I don't know the names of all those muscles, and I'm sure you can all follow the concept without me having to look it up!

That's pretty much where things stand for now. Treatment starts right away, and there is not really any way to know exactly how much "normal" motion Ryan is going to have down the road. We'll just stay hopeful and continue to stretch him until he hates us or the physical therapist tells us to stop.

If anyone has more questions (I know -- how could you after such clear, concise, intelligent updates?), you can email them to Ryan's gmail.com account at ryanjmcauley and Derek will check it every so often. (We're avoiding typing the actual email address to avoid automated spammers, but it's ryanjmcauley and then @ and then gmail.com)