Off to St Louis...

No surgery---for now.

I contacted two of the top clubfoot drs by e mail, sent them notes, copies of x-rays and pictures of Alex's feet. Neither of them felt the surgery recommended was necessary.  One of them said that a tenotomy should suffice and the other said that he really couldn't make a good judgment on what the best treatment would be without examining Alex. 

So after lots of phone calls to our insurance company (Dr Dobbs is in network. Whoot,Whoot!) and different drs for referrals and notes, we're heading to St Louis in a few weeks for a second opinion.  

By we, I mean myself and Alex.  Syd has a Rubik's Cube competition a couple of days after Alex's appointment and she's made a commitment to her team to be there.  And since she can actually solve the thing, she can't wait to do the competition.  Besides, if we all went, we'd spend waaay to much money doing fun things in 

St Louis :-)

Gotta say, the thought of being in the car for 13 hours with a 2 year old makes me cringe!  I've never driven that far by myself before so I'm a bit nervous.  But I'll make it work, stock up on lots of snacks, music, crayons, Little Einsteins movies and coffee for me.  Maybe I'll try some of those 5 hour energy drinks I've seen commercials for :-)

Anything for these little feet.

More surgery?

We saw Alex's dr yesterday for a check up on his feet.  

After he fell off of the x-ray table, banged up his head and back and got a new stuffed animal he named Bug Bug, the dr told us that Alex has developed rocker bottom feet.  What that means is when he walks, instead of walking heel to toe like a "normal" foot would, he is walking with all the pressure on the arch of his foot.  His x-rays show that his left heel has still not dropped where it needs to be and this is what is causing all of the pressure to be on the arch.  This eventually will lead to a lot of foot pain for him which is something we do not want to happen-obviously.

So the dr is recommending a surgery called Strayer/Valpius Lengthening which I have found is only used for treatment of flat feet and rocker bottom feet, not club foot.  The dr would cut into the small muscle behind his 2 larger calf muscles and cut a chevron type pattern in the fascia (sheath around that muscle).  The 2 larger muscles and smaller muscle are what forms the achilles tendon so by getting that smaller muscle to stretch out, the heel bone should drop to the proper position leading to walking heel to toe again.

Ok.  In theory it sounds great and besides him having to be in casts for 6 weeks after the surgery (they would at least be short walking casts this time) I cannot find anywhere that this is a treatment for club foot.  So is fixing this problem going to ultimately fix his club foot?  I don't know.  So I have e mails in to the top 2 club foot drs in the country to get their opinion on this procedure.  It's not that I don't trust our dr, I do.  But this is my kids feet here and I want every bit of information and a second and third opinion before putting him through more pain and immobility and physical therapy. 

So if any of you club foot families out there follow our story and have any knowledge at all about this surgery, please drop me a comment.  I need all the information I can get :-)

Alex and MaaMaa.

The Toddlers Creed

by Dr. Burton L. White

If I want it,
IT'S MINE!

If I give it to you and change my mind later,
IT'S MINE!

If I can take it away from you,
IT'S MINE!

If it's mine it will never belong to anybody else,
No matter what.
If we are building something together,
All the pieces are mine!

If it looks just like mine,
IT'S MINE!

If it breaks or needs putting away,
IT'S YOURS!

(Sent to me by a dear friend who's been there, done that :-)

Heritage Camp

Over Labor Day weekend we went up in the mountains to a Heritage Camp for families with Chinese kids.  It was the first year we've been and we had a pretty good time.  There were 216 families there!  It was pretty awesome for Syd to see soooo many families just like ours.

So what did we do?  There were workshops for the adults, James learned to play Mah Jong and I got a ton of info on planning a heritage tour to visit China and the kids birth towns and orphanages.  There were panels of adult adoptees, a tea ceremony, a Chinese food cooking class, a Chinese medicine class and more that I can't think of.

The parents also had to volunteer for a job for one session to help out with the huge amount of people there.  The jobs ranged from helping with the kids (age 2 up to high school seniors) to clean up to set up and tear down for parties and shows.  Our parent job was to watch Alex in the afternoon since he was the youngest camper, it worked out because we could take him to the room for a nap.

Syd was busy, busy, busy!!  She had workshops on calligraphy, lots of crafts, learning about how to do a tea ceremony, Chinese dance and one workshop talking about adoption (that was sooo boring,mom!)  She didn't make any new friends but she was pretty much attached to her friends Rachel and Emma.  I think if her buddies weren't there, she might have been more stressed and overwhelmed.  She LOVED her counselors, who I think a good chunk of them are adoptees who have been through one heritage camp or another.  (There are 11 different adoption camps for families with kids from different countries!)

Syd and Alan

Rachel, Thao and Syd

Alan, Rachel, Thao and Syd

Ken and Syd

Alan signing Syd's camp shirt

And here's Alex with his counselors.  I didn't get their names because he wasn't with them for long :-(

The opening ceremony was lots of fun!  The lion dance, part of the fantastic dance group Kaba Modern, Chinese dancing.  The lady who did the ribbon dance went to this camp every year since she was a child, just beautiful.

Emma and Syd just got a BIG kiss from the lion!

 Sunday night was celebrate China night and it was amazing!  All the age groups participated in the show, and Alex was the star of preschool!

(The video is not working so I'll try to get it reloaded when it decides to cooperate!)

If you listen about 2 minutes in, you can hear the crowd "ooooing" because Alex was getting awfully close to the edge of the stage.  At one point, you can see James getting ready to leap over everyone to catch him!

And here's Syd giggling uncontrollably during the 3rd grade part of the show!

The amazing Jason Yang preformed!  Take some time to check out his music, he is phenomenal!

Syd, Emma, Rachel and Nicholas also got a pic with Kaba Modern.

Overall, we had a great time.  Every minute was packed so there was hardly any down time, we weren't really expecting that.  We're all tired and 3 of us caught a cold, but it was great to meet new families and learn new things.  Syd had a great time and wants to go back next year, Alex just ran, ran, ran for 3 days straight so of course he had a great time too :-)  

Carol and Barb modeling t-shirts we had to wear all weekend!