"Los Tulipanes"

"Los Tulipanes"
48 X 48, oil on panel

Friday, July 27, 2012

An Update on Lucy, Sotos Syndrome Diagnosis


It was a year ago that Lucy was first seen by a geneticists.  She had been hospitalized at Primary Children's and we begin working with an incredible team of doctors who have trained us and loved us.  We have learned so much.  Lucy has been amazing through it all and so have her big sisters.  I know many prayers have been offered in our behalf, I am so grateful for the love and support we have received, your prayers have sustained us.


Her  geneticists was very diligent, exploring so many different ideas, then this spring, he was moved into a different area in his department, and Lucy was assigned a new geneticists.  Lucy had started to make some great progress, she passed her swallow study, she started to get more mobile... so I wondered if we even needed to go meet the new geneticists.  We did go, and the minute our new doctor saw Lucy, he said she reminded him of another baby he knew 11 years ago, and he thought she had Sotos Syndrome.  The test results came back a couple of weeks ago confirming what he had suspected.  So many things make sense, I understand better so many of the struggles that Lucy has been working on.  It feels like we have met so many of the doctors and therapists right at the right times we needed to.


The timing of the testing sent us into a whirlwind adventure.  Each year the Sotos Syndrome Support Association has a conference, this year's happened to be in Vancouver Canada.  With the encouragement of our doctors Lucy and I got our passports and headed to Canada to attend.   We were able to meet with Dr Shaefer, the leading authority on Sotos Syndrome in the US (who Lucy has wrapped around her little finger, by the way). We were also able to meet with about 50 other families from around the world who have a child with Sotos Syndrome.  It was very informative.   I fell in love with the other children, and they fell in love with Lucy.  The look of Sotos is so strong and common between these children, that they felt like they were seeing themselves as a baby when they saw Lucy.  One darling girl would always come and smile at Lucy and say, "That's me when I was a baby!"   The other parents would caress my sweet baby and see their own baby in her.  We are part of a family with great support.  I am so grateful we got to go.

I am so grateful I get to be Lucy's mom.  She is a blessing and a miracle.  I am excited for what lies ahead and grateful for all we have been through.  I would do anything for this little girl.


It looks like I have another little artist.

6 comments:

the Aymster said...

So glad you have some answers finally. She is such a cutie!

Laura said...

That's so wonderful she finally got a proper diagnosis! I'm glad you could attend the conference and meet people going through the same thing. I hope you're all doing well.

Brittany Garey said...

I love your pictures! I'm glad the conference went well.

Kristi Booker said...

It was great to meet you in the airport! How's her g-tube site doing? You are in our prayers.

Kristi

Sarah said...

Thank you!! Kristi, she ended up with an infection :( But she has great doctors and it is all healed up now :)

Mrs. Olsen said...

Wow! I had no idea there was a diagnosis with your little one. She is a blessed little girl to have such a great family.

Blessings on your "Soto Journey". You're attitude is truly divine. Good luck with your fundraiser...not anywhere close to us or we would enjoy a night out at the pizza place.

Adios!