Friday, September 16, 2011

The Mayo Clinic

The Clinic was pretty beautiful.
Downtown Rochester. Literally this picture pretty much is downtown Rochester. It's kind of a weird little town, tiny except for like three blocks. (The Mayo building is right in the middle)
Delta lost Bob (our beloved stroller) they sent it to Denver then to Salt Lake before making it back to Rochester. In the meantime they found us a wheelchair shop in Rochester which had to tide us over till we got Bob back. It was the tiniest wheelchair I had ever seen. It was pretty uncomfy for her and it generated a lot of stares, actually it was kinda depressing seeing her in it. We were so happy to see Bob once they found him!
I adore blown glass! This is in the Mayo clinic's lobby.
lots and lots of cuddling!
First Airplane ride!
Now this is kinda a weird picture to add to our trip but Quinn was pretty excited about his Peanut Butter, Bacon Burger. Disgusting. He loved it.

We went to the Mayo Clinic in Rochester Minnesota this week. We were desperate for a second opinion. We saw the pediatric neurologist, the geneticist and a muscle specialist. We took blood, froze DNA, did an EMG and an EEG.
As always Lila was a little trooper. She took all the poking and prodding in stride. Even giving the doctors a few smiles, something she doesn't always do for strangers.
We were so sad we had to do an EMG. It's a muscle test where they stick tiny needles into the muscles then give them little shocks to see how the information is transferred between the nerves. Luckily she was sedated. When she was coming out of sedation her heart rate was really high. The nurse told me sometimes all they need is mommy and put Lila in my arms. Immediately her little heart rate started to slow and then stabilized. This just touched me so much because sometimes I wonder if Lila even knows who I am. It made me so happy to know she finds comfort in my presence.
I think that Rochester was really great, not that we learned a ton of new information (I'll explain later) , but that we know we have covered all our bases and that multiple specialists are in agreement as to what is going on with Lila. It was also nice for Quinn and I to have a few days away to process through this new Diagnosis and have long hard talks about what this means for us and for our future family.


Sandie-Matthew's Mom said...


Lila, you and Quinn have been in my thoughts often...with many prayers being said for your lovely Lila and for both of you.

Love & Prayers,

Kim and Ken Carlile said...

Hello. You don't know me, I am friends with your cousin, Lindsey Bullock. My 5 week old was just diagnosed with congenital cataracts, so Lindsey told me about your blog and I read some of what you wrote when your daughter went through them. I'd love to email you for some more information about your experience with the surgery and recovery if you are willing. My email address is:

Kelli said...

I love all of the pictures and LOVE the story about Lila's heart slowing down in your arms. It brought me to tears because it is wonderful that you finally had an experience with Lila's own physical manifestations, reaffirming something I have known all along!! :) --She KNOWS her mommy & daddy!!! No doubt about it! :)