starting today....

Ok. I have to admit I am such a slacker! I can't believe it has been over 3 months since I posted last. So starting today Im going to start blogging again on a regular basis. I don't know why I stopped....it really is cathartic.

There is so much that has been going on where do I start! (sorry about the fuzzy pictures---off my phone!)

About a month ago Avery started OT and PT at our local hospital. Avery is working SO hard at therapy. We are seeing some new things that give me hope that Avery could regain some strength in her arms! This is her OT, Jessica. She. Is. Amazing! Not only does she know her stuff in therapy but she lives it every day. Her daughter has Cerebral Palsy. So blessed to have her walk into our lives!

One of the things that we are working on is weight bearing exercises for her arms. Well it must be working because this is how I found Aves asleep a few weeks ago. Sometime in August, Avery lost her ability to walk or stand without support. Its seemed like overnight her foot went from bad to REALLY bad. 2 weeks ago Avery got Botox in her calf to loosen the muscle so we could stretch her foot out through a process called serial casting. The theory is that over the next weeks to a month her calf and heel cord will be relaxed and stretched so she can get new orthotics. The ultimate goal is for Avery to get back one of the few things in life that she really enjoyed--walking. This picture was taken the day she got her cast on. It was the first time she has stood by herself in almost 6 weeks.We also had our Natural History study appointment with Dr. Percy. They are super excited about her weight gain and overall health.
And just a super sweet picture I snapped the other day of a VERY rare smile! I know Avery is a happy girl but boy are smiles hard to get!

Catch up time!

Here is a recap since my last post..... Avery had surgery June 16th. What was supposed to be an 8 day stay turned into a 12 day stay....between seizures and her tummy adjusting to tube feeds we were forced to stay longer. Seizures have continued to plague here since she got out of the hospital. She is now maxed out on 2 different medicines to control them. Hopefully this combination will do the trick! Now for some good news.... Avery has gained almost 3 pounds since surgery. Her little arms actually have some meat :) She is doing really well and seems to love the feeding tube. When she is hungry now she looks at her pump. Mommy is loving the fact that I can give all medicines through her tube! No more fighting :) We are winding down the summer. School starts back August 16th! I know Avery will be glad to go back and see her friends and teachers.She was SOOO happy to be getting out of the hospital!She sat still and let mommy braid her hair....she looks so grown up!
This was taken this past weekend. Her incision and button are doing great!

Birthday party

We had Avery's birthday party a little late this year---but better late than never! She loved all the Elmo stuff---and my smart little girl even tried to blow out her candle!

Happy 4th Birthday!

Avery is 4 years old today. Seems like just yesterday I heard her first cry! God could not have given me a sweeter more perfect daughter! Avery, thank you for bringing so much joy into my life. You really are an angel on earth!

Wednesday, May 31, 2006 * 6lbs 8oz 20 1/4 inAvery's 1st birthday---lovin' that cake!

Avery's second birthday. Rett Syndrome regression was just starting.

Avery's 3rd birthday

Rett Clinic

Today was Avery's 6 month check up with Dr. Percy. Everything is great. She has lost some weight and gotten taller since our last appointment so they are all very happy that we have opted for the feeding tube. On a bright note, her head is finally growing again! Almost 2 years with little to no growth and now she is finally growing some.

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.

HERE IS A LIST OF THE ITEMS TO BE AUCTIONED OFF: EST. VALUE:

--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

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.