Avery Grace

Avery Grace

Saturday, September 20, 2008

She Knows Me.

"Avery. Where is your mamma?" "Avery, can you point to your mommy?" "Avery?" "Avery?" Doctor turns to me... "Is she usually this non-responsive?"
"Yes. Especially with new people," I explain. But she knows me.
This child, this baby of mine who is almost 2 and a half, who I nursed for 15 months, who I held and loved with all of my heart and soul from day one, who I shared laughter and peek-a-boo, and silly moments... she knows me. In a room FULL of women, she will smile and approach only me. She will climb in my lap and snuggle. She knows me. As far as we have lost her in this awful disorder... she still knows me.

After our almost unbearable evaluation on Wednesday, Thursday we had our 6 month follow up visit with the developmental pediatrician. No more doubts in her mind this time. Full blown Autism. Little to no progress in 6 months. Wants us to take her in to the geneticist for further testing to see if she has Rett Syndrome. Never did I imagine I would pray that this is "just Autism." But, she knows me.

Friday I was late driving Avery to therapy. I got a speeding ticket and totally lost it. Where is the good luck. So much for my charmed life. Thank god she still knows me.

But things could be worse. They could always be worse. And she knows me.

So today I am a mamma on a mission. I am determined to be the medical advocate for my sweet child that we have yet to discover. No one seems to know anything about Mastocytosis here in Texas. The doctor in Boston who found the link between Masto and Autism has been in touch with us and we are going to participate in his research. But I want more. I have been researching myself and have found that there are some trial studies that suggest that systemic mastocytosis might be helped with a stem cell transplant. Since this is the ROOT of all of Avery's problems... this is the avenue by which I am going to focus my attention. We saved Kaylee's cord blood for a reason... now maybe I can actually use it to help Avery. If I have to send a letter to every stem cell transplant doctor in this state and beyond I am GOING to figure this out for her. She was with us before, and she STILL knows me. She is not gone yet. I am going to hold on to her as tight as I can, and use all the power within me to pull her back.


Mommy of Tyler and Chase said...

I know quite a few stem cell transplanters! Call me..Colin

Carrie and Avery said...

hey, I stumbled across your blog. I am the mom of 2 kids, Cole, 5, who has high functioning autism and Avery, 2, who has rett syndrome. I can totally relate to the feeling of "I hope it is only Autism" as I have said those EXACT words.

Good luck with everything. Your Avery is a cutie! :)

Girl Power 2 Cure said...

You have an incredible spirit! Hold on tight and keep fighting. Your daughter is lucky to have you for a mom!

From Ingrid - mom to Sarah, age 7, with Rett Syndrome. If you ever need to connect with the Rett Syndrome community (although I hope not!), please check out www.girlpower2cure.org.