Saturday, May 31, 2008

Happy 2nd Birthday, Avery!

My sweet baby girl, where has the time gone? Sometimes I cant remember life without you and others it seems like just yesterday I held your tiny body for the first time. You have brought so much love and pure joy to my life. I cherish everything about you. You are the thing in my life that keeps me sane. I hope the next year will be filled with happiness and continuous improvement and learning! I love you so much!

Monday, May 26, 2008

GNO! (girls night out!)

Saturday night, Avery and I went to Rachael's house. Madison tries to get Avery to do everything she does. Madison is going to be Avery's protector and best buddy! I think even Caroline loves her friend Avery.

Swimming Fun!

Today we went to Mama G's for some summer fun! It was cloudy but we had a great time anyway. This was our first pool adventure this summer. Cole is becoming quite a fish!

Saturday, May 24, 2008

"just because" pictures.

Which one is the REAL Groucho Marx???

Cole got groucho marx glasses from Mama G. He calls them grandpa glasses....looks like pappy!
The whole family had to take turns putting them on.

Wednesday, May 21, 2008

new pics!

Cant think of anything to blog about so I'll just post new pics of

Thursday, May 15, 2008

Regression ending???

So we think that Aves might be on her way to the plateau stage! She seems to be alot more animated and aware lately. She is also being more vocal. She seems to be yelling at us. She has life in her eyes that hasn't been there in a long time. Please say a prayer for us!

Tuesday, May 13, 2008

way to go, Avery!

Avery put on a half a pound since our visit to see Dr. Percy! I guess Cracker Barrel mac-N-cheese and buttered biscuits twice in a week help. We all decided she needs Paula Deen as her personal chef!

Sunday, May 11, 2008

Cole's party

We celebrated Cole's birthday yesterday. Thad's brother got Cole a drum set! It was a huge hit and he put on a concert for us! He also got an official Jeff Wiggle shirt!

We went out to dinner and then came back to our house for cake and presents. He wanted a guitar cake so Gigi and I spent Friday evening making him a cake. I am very impressed with the final outcome. He had a great time.

Thursday, May 8, 2008

UAB Rett Clinic

Today was the big visit. We got to the hospital and made the long trek to the clinic. (with a stop at the food court for Starbucks!). We got signed in and went to the waiting room. Avery was transfixed on Elmo.

Dr. Percy and Jane were late(but only by a few minutes)! We went in the exam room and got settled in for a pile of paperwork. Lots of questions with the occasional pause to play with Avery. Dr. Percy took her and sat her on his lap and loved on her. She gave him her customary "raspberry" which we refer to as her "happy noise". She started to get sleepy so we put her into the stroller and within minutes she was out. Jane measured her feet and hands and she was none the wiser. Jane and Dr. Percy were great and funny, kind of like a comedy routine. They were picking on each other and arguing the way I assume people who have worked with each other for 15 years would.

The nutritionist came in and talked about the importance of high calorie meals. The weighed her, measured her height and took 16 measurements on several spots on her body. They were testing her BMI. As of now her BMI is 15.1%. We did find out that she has fallen off every growth curve but none as pronounced as her head circumference. She went from the 50th percentile and 18 months to the 2nd percentile at 23 months.

I am feeling very mixed emotions about the visit. I guess deep down I hoped they would tell me the impossible, that Avery didn't have Retts. The visit overall wasn't what I thought it would be like, not in a bad way, just different. I didn't learn anything at the appointment that I didn't already know but, it was nice to be in a room of people who had Avery's best interest at heart.

Wednesday, May 7, 2008

Tomorrow's the BIG day!

We are headed out the door to go to Birmingham to see Dr. Percy! Our appointment is tomorrow at 10 a.m. I can't wait to hear what they have to say. It will be so nice to be educated rather than being the one doing the educating! I will post an update with pictures as soon as I can!

Tuesday, May 6, 2008

Therapy pics!

Avery's DT (developmental therapist), Jessica came today. We worked on getting Avery to use her non-dominant hand. She did great. We isolated her good hand and made her use the spoon. She was doing it with very little help from us. She has a very weak grip in her right hand so she need some assistance it getting her hand to her mouth without dropping the spoon but did it several times! Way to go, Avery!

A Common Bond

I saw this on another blog...We are bonded together no matter what the special needs are our child may have.

To You, My Sisters (and Brothers!)by Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.We have our own personal copies of Emily Peri Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Thanks, Rebecca!

Sunday, May 4, 2008

Cole turns 5!

Happy 5th Birthday, Cole!

Gosh, it seems like just yesterday you made your scary and fast entrance into our lives! You were so tiny and sweet! You have come such a long way. I am so proud of you!
Happy birthday, buddy! Love-Mom

May 4, 2003 (7 lbs 0 oz 20 1/4 in)
May 4, 2004 (1st Birthday)

May 4, 2005 (2nd Birthday)

May 4, 2006 (3rd Birthday)

May 4, 2007 (4th Birthday)
May 4, 2008