Tuesday, June 1, 2010

Anticipation for CA Road trip, New Moves and Lots of Running - Living with Spinal Muscular Atrophy


Our road trip is planned . ( The song coming to mind "On the Road Again.") We are leaving earlier than expected because Paul is not going with us so its Christen, Lizzy Rachael and I . Taking each day at a time. Lizzy has an appt at Stanford on Tuesday June 22 so we have to be in Palo Alto on that Monday Night. The anticipation has Lizzy just talking non stop!!  She wants to see Molly , Andy, Hayden, Veronica, the ladies at the motel we stay at in Palo Alto, DR. Wang and all the kids and the conference. She is just thrilled to be doing this again.She has been asking SO MANY questions!!

I have an awesome update on Lizzy:  Today, Christen got her some Biscuits and Gravy from the local Micky Ds. We get her something every time we get something. Well,  today Caitlyn was here and I was giving Lizzy a " taste". Lizzy said " No No I want to do  it MYSELF!" I said "Okay" She picked up the plastic and stuck it right in some gravy and got her own taste!!!! Oh my gosh I was stunned..... Christen was standing there and I said "Look at Lizzy!!"She stopped and starred in amazement as speechless as I was. Lizzy was laying on her side and doing this. Lizzy did this until she was done. I swear this is true!!  Oh my. Elizabeth never stops shocking me. Is this not awesome?? I believe its the Organic India Turmeric I am using in her diet that has helped her this time. She has had this supplement in her diet for a few months now.  She has not done much range this in a long time. She plays her nintendo ds but she has not done this a a long while. Her knees have not been tight in a long time.

Elizabeth had her MFR therapy this afternoon and Linda worked on her mouth. She was actually opening her mouth wider after!!! This is so great. She also had skinny arms forever well today I was looking at her and put a tank top on her and her arms are filled out for the first time since she was a baby. I thank God every night for her strength and for keeping her doing well.  I am so proud of her. 

The last few weeks have been so busy and I suffered  with a few migraines to add to the busy time. We had two Graduations, two appts, a recital and a family get together at my Dad's. This week we have 3 appts and two parties to go to. Then.we leave soon. I do not like all this running but its things we have to do. 

Many prayers for Nick Lockwood he is in the hospital sick, Emma Lockwood is having tummy trouble,  MJ she is in the hospital  very sick, Sophia Gaynor( teething like crazy), Stella and for us for our upcoming trip.

" We believe in miracles because we live with one" 
www.our-sma-angels.com/elizabeth 

PLEASE VOTE IN JUNE!!!  WE NEED YOUR VOTE!!!! 





1 comment:

Jaime said...

Awesome update! I love reading about all of the wonderful things Lizzy is doing! These kids are so amazing. Elizabeth gives me so much hope for Nora. Safe travels to CA. TJ will be heading to the conference alone, I hope he gets a chance to meet you.
Hugs,
Jaime Gooden

www.goodentree.com