Seattle

We spent the day yesterday at Seattle Children's Hospital.  From 9:00 until 5:00, with a lunch midday, we spent time with various doctors and specialists.  With back-to-back appointments throughout the day, Olivia did really well.  She had her moments, of course, and Brian took the brunt of the pinching and head-butting, but all in all, she handled it well.  Jacob was a tropper, spending most of the day in the waiting area, playing his game on the computer. 

Our first appointment was with Dr. Judith Hall, a geneticist who is an expert in Arthrogryposis.  Like, she wrote the book.  No kidding.  I told Brian I wanted to ask for her autograph.  Actually, I said it to her, too.  In jest.  Sorta. 

She is actually retired, but is thankfully still involved with the clinic.  Dr. Hall started by asking a ton of questions about our family history, my pregnancy, and Olivia's birth.  She examined Olivia, and shared her insights with us.  She made it very clear that Olivia's AMC is not my fault. (She saw the momma guilt in my eyes, I think.)  We talked some about Olivia's autism, and Dr. Hall said she has seen some other children with AMC and low-functioning autism.  I wanted to ask her if she happened to have their names, addresses, and phone numbers handy.  Because, you know, those are our peeps!

Dr. Hall said that Olivia is definitely "special."  She said that she presents characteristics of CP and AMC, but not either by classic definition.  Adding in low-functioning autism and a ton of "normal" test results, and she is indeed a mystery.  She wants to be sure that the geneticists have tested for Rett's Syndrome, as she felt that Olivia had a lot of characteristics that match that disorder.  We told her that we were fairly certain that genetics had tested for that already, and she said she would contact them to be sure.

I asked Dr. Hall if Olivia had amyoplasia.  She said, "Abosultely not."  She described amyoplasia, and then said that she developed the term herself, so she can say without a doubt that Olivia does not have amyoplasia type AMC. Yep.  Wrote the book.

Then, she said the words I wanted to hear from the mouth of an AMC expert.  She said, "I absolutely think she will be able to walk."

I made her say it again.  ...will be able to walk...  I swear there were angels dancing around us in that moment.  The relief and joy overwhelmed me.

She said that Olivia is taking in so much more than we know, and that she is curious and motivated and wants to be up and walking.  We just need to get those legs straightened.  She told us that she was not an orthopedic surgeon, but that she has seen tons of children with AMC and that it seemed extremely likely that Olivia could have surgery to get her legs straight and enable her to walk. 

I asked her if we missed the window of opportunity, given the fact that she is almost seven years old.  She said absolutely not and that the window wouldn't close until she's around 12, and even then, the difficulty would simply be because of teenage-related obstacles plus her autism.

Dr. Hall agreed that Olivia had some indicators of cerebral palsy in addition to arthrogryposis.  She said some AMC children do respond to botox, but that, added with her clonus and cognitive disabilities, meant she did fit the description of CP in some ways.  She reminded us that CP and AMC are both descrptions, and minus those with amyoplasia, there are many, many causes of AMC.

I hugged her before she left.  And I couldn't wait for us to talk with the orthopedic surgeon.

But, there were many appointments before we would meet with that doctor.  After Dr. Hall, we saw the dietician, who assured us that Olivia's food choices are pretty healthy and varied.  She gave us some tips and ideas, and we were off to the OT.

The OT was very pleased with how Olivia has adapted to her hand limitations.  She had us try a strap that can hold a untensil or pencil/crayon, and even though I would have sworn to you that Olivia would have pulled it right off, she actually used it to eat a container of yogurt.  She immediately realized its functionality. It was perfect for her!  Why have we never tried that before?? 

We headed to lunch with the other AMC families who were at the clinic.  There were probably ten families total, and by the time everyone introduced themselves (everyone else was from Washington), and the staff shared some more info about their services, there wasn't too much time to eat and socialize.  However, we did get to talk with one sweet family and meet their baby girl.  (Hi, Lunde family!)

After lunch, we met with one of the nurses for a few minutes, who just made sure we were getting everything we needed and checked to see if we had any questions.  The rehab doctor came in next.  She wasn't scheduled until the end of the day, but the ortho surgeon was running late, so she talked to us for a few minutes while we waited.

Then, ortho arrived.

We started off by telling her about Dr. Hall's comments, and then told the story about our visit with our ortho surgeon back home. (At our last visit, he had told us that Olivia's inability to walk was not a "leg thing," but instead a "brain thing."  He said that if she wanted to walk, she would walk.  He said he believed she would be wheelchair bound her entire life.  He was cold, talking as if he were speaking to another surgeon instead of a family.  At one point, he did say "I know what you're going through."  Oh, I made it clear to him that he had no idea what we were going through.  Agghh!  Regardless of whether or not he was right, his lack of bedside manner left me in tears and very angry.)

We told her that story and how we had traveled to Seattle to see the "experts," to discuss whether or not there are cases similar to hers, and to talk about the possibility of her walking.  She was kind and started talking with us as she examined Olivia.  As we discussed our mystery girl, she stated that she was noticing the same signs of CP, like others have.  The spasticity, the clonus, increased tone, the reaction to botox, the obvious brain differences apparent with Olivia's autism.  Then she explained how surgery for patients who have spasticity may not make a lasting difference because of the high risk that the muscles and tendons will contract again.  She said that if the nerve bundle is also contracted, they would not be able to lengthen that, so any lengthening of the tendons would be a moot point. 

She said that the contractures in her hips, knees, and ankles would require a surgery that addressed all three issues at the same time, and the risks included infection and the possibility of losing her ability to use her feet and/or part of her legs.  She said that even if the legs are straight, the brain must be able to send the signals to the legs to move the muscles in the right way in order to make them walk.  Olivia's disabilities can certainly be described with arthrogryposis, but as that is JUST a description, it doesn't imply that the same surgeries that may work on an AMC child with amyoplasia (for example) would work on our girl.  She is a unique case, with her cognitive disabilities and her CP characteristics.

In other words, she was saying what we've been told before.  It's not just a leg thing.  It's a brain thing...

The doctor told us that there is no way to know exactly what surgery could/would be able to do for Olivia's functionality.  She said that the best indicator of success would be to get her legs as straight as possible through botox injections, then get her up and walking to see what she could do.  Because surgery would, simply put, be done to "get her legs straight," we could mimic that through botox.  Of course, we've tried botox before and have seen her up and walking with her walker after a couple of weeks of intense stretching, and she's been able to take some steps.  But as she gets older and heavier, she's moving slower and seems less interested...

That brings us to the other piece of the puzzle... her level of motivation.  Olivia has to have the desire to walk.  And we don't know if she wants to.  I told the doctors that I sometimes think that Olivia doesn't see a need to walk since she is able to get around in her wheelchair and by crawling.  Walking is almost impossible with her legs bent, and the work it takes to step in knee immobilizers and AFOs just isn't worth the trouble in her mind.  Of course I have no way of knowing if that is what's she thinking...  Maybe it's just a momma's wishful thinking that her girl desperately wants to walk...

We left that appointment with the plan to try botox again, get her up and walking, and revisit the idea of surgery then. 

The next appointment was with the PT, who was obviously very knowledgable.  She examined Olivia and noticed that she didn't have high tone, but that she is extremely tight in her hamstrings.  She said that her right leg is shorter than her left (when did that happen?!) and she pointed out on the last x-ray image that her right hip bone structure is straighter than it should be.  (Um...never noticed that before.)

She said Olivia needs to be in the stander every day and to not wear her AFOs when she is crawling around.  (Her school PT has said the same thing.)  She said Olivia needs a hard back to replace the soft one on her wheelchair so we can limit the curving of her back while she sits in it.  We tried to get Olivia to pull to standing and to take a couple of steps while we held her, neither of which she would do.  (Stink pot.)

She reiterated a lot of what we had heard from ortho, including the many uncertainties that come with our complex girl...

The last appointment of the day was with the rehab specialist.  She was very nice and the conversation we had was a good debriefing of the day.  She said that even though she isn't a parent to a special needs child, she has gleaned from many interactions with parents that they want their children to be as independent as possible.  She reminded us that Olivia is very independent in her mobility, through crawling and being able to drive her wheelchair.  She said that as a doctor, she only recommends surgery if there is a high likelihood of providing better/more functionality for the patient.  Risk analysis...  And the tough part is that, with our mystery girl, there is just no way of knowing what the best option is.  Then she said, "It's a leap of faith."

Oh, my.  How true that is...

Besides some tears in the morning when Dr. Hall said my child would walk, I had kept it together all day.  But, I did break down a little when I was talking to the rehab specialist.  I admitted that I want my child to walk, even though that may not be what Olivia wants (or even needs) herself.  I said that I was so overjoyed when we had talked to Dr. Hall, but that the rest of day had been tough as we heard that it wasn't as simple as it may seem.

She was very compassionate, and told us that we were doing a great job advocating for our daughter.  She said to not stop looking, to not stop asking questions and searching for answers.  And to take breaks now and then to just enjoy life as a family. 

By the time we got back to the hotel, we were exhausted.  Physically and emotionally. But, very thankful that we made the trip. 

Sometimes, I just want the answers. I want a clear, definite path of what we should do for our daughter. I don't want to agonize over what to do or wonder what the consequences will be for every decision we make.  I just want to know that we're doing what's right for our sweet baby girl.

Yesterday morning, on our way out the door to head to the hospital, Brian and I read from our Jesus Calling daily devotional.  The first line read, You are on the right path.

Listen more to Me, and less to your doubts. I am leading you along the way I designed just for you. ... I go before you as well as beside you, so you are never alone.

We may not fly home tomorrow with any more answers, but it has been an amazing and worthy journey.  From the outpouring of love and support during the fundraisers and the opportunity to meet with AMC experts, to the chance to spend this time together as a family, we see that it has been a journey designed just for us.