Wednesday, April 28, 2010

Avery's Pancake Breakfast!

Please come and join us for breakfast with Avery Akins. This breakfast is to raise money for her special needs trust which will help pay for the things that insurance won't. So come out and meet Avery and enjoy some pancakes!! Tickets are $7.00 and can be purchased at the door.

If you are unable to attend but would still like to make a donation, please send checks to:
Foley Lodge #766
404 N Cypress St.
Foley, AL 36535

make checks payable to Foley Lodge 766. Please make sure to put Avery's special needs trust on the check.


--Family 4 pass to the Gulf Coast Zoo X2
--Sailboat Day Trip for 10 on the Cyrus E. King $500

--Weekend Getaway in 6 bedroom house Gulf front
(NO Major Event Weekends) $600

--Kayak Rental for 2

--Waterville 4 pass $120

--Fun Night Bowling/Putt Putt

--Dolphin Dinner Cruise X2

--Hangout Beach Music Festival 2 Tickets $300

--2 Rounds of Golf @ The Wharf $200

--Bellengrath Gardens 4 Pass

--Dinner for 2 @ Original Oyster House

-- 6 hour fishing trip for 1 with Captain Ben Fairey $135

Thursday, April 22, 2010

Rett Syndrome sucks!

Avery has been so stable for so long that I started to allow myself to believe that regression was over. Well it wasn't. Her walking has gotten increasingly worse. She's stiff, rigid and unstable. I begged her neurologist to try medicine to see if it would help. No such luck, in fact it gave her horrible stomach pains. So back to square one.

At the moment, Avery is on 4 medicines daily. Some twice a day. On top of that she is underweight and with every centimeter taller is falling that much more off the growth curve. We have come to the point in this horrible Rett journey that a decision had to be made to give Avery every opportunity to be the best Avery she could be. So on June 16 she will be going into the hospital to have a feeding tube placed. They will also be doing a procedure that will help with reflux. The part that has me the most upset is that because we found out that her stomach empties very slowly she will need an additional part to her surgery. This additional step will require her to stay in the hospital 7 days (at the minimum) and only IV fluids and dextrose for 5 of the those days. I know that in the long run this is going to be an awesome thing for her but no mother ever wants to see her child suffer.

Sunday, April 4, 2010

Happy Easter!

Hope everyone had a great Easter!

Avery and Riley

This post is a bit late but better late than never! Riley Bleske and her family came to the beach for spring break so the girls got to see each other. It always amazes me just how much Avery and Riley look alike.