Welcome to the cyber home of Callie Mae. We hope you will glimpse the joy she brings to our lives.
March 21, 2001 Megan and Callie

Callie's arrival in March of 2001 was a wonderful blessing. She came on the heels of a very productive year for her Mommie's family as cousin #4 in a 9-month stretch. This year, 2003, there will be 3 new cousins-twins, a boy and a girl, to Uncle Jay and a brother or sister for cousin Tara.

The nurse who sent her home from the hospital commented that Mommie would have her hands full with a newborn who was doing tummy crunches to get a better look at the world. Callie was an easygoing baby though, and pretty much drank in whatever was going on around her. Her brother Doug and sister Megan both adore her. Megan especially likes to help by bringing Callie to Mommie when they wake up each morning.

We were just waiting for the day when this calm little joy would become a curious creeper and get into everything. That just did not happen, so when she turned a year old we scheduled an appointment with a pediatric neurodevelopment specialist in Baltimore. After a couple of tries to get blood samples from the dear girl genetic testing turned up nothing obvious.
Callie's 1st Birthday

In June 2002 Callie started to get occupational and physical therapy through our local Infants and Toddlers Program to help improve her muscle tone. Her therapists have been wonderful encouragers throughout the diagnosis process. We will miss our PT, Ms. Susan, as she changes territory to one closer to her home; but look forward to getting to know our new PT, Ms. Vicki .

By September 2002 we were referred to Dr. Thomas Crawford, a pediatric neurologist at Johns Hopkins Hospital. After an extensive interview with us about family history and Callie's early development and such, Dr. Crawford examined Callie. He told us he was pretty certain that she had a genetic neuromuscular disease similar to Muscular Dystrophy called Spinal Muscular Atrophy type2. We sent a blood sample to a special lab to run the specific test for the SMN gene and the diagnosis was confirmed a week later.

Admittedly, this diagnosis was not easy to hear; but our family's growing faith has experienced another growth spurt. We embrace the knowledge that God has great plans for each of us and Callie is no exception. We have begun the adventure of keeping Callie as healthy as possible and finding ways to help her lead a joy-filled and productive life that will bring glory to God.

Our family, brothers and sisters in Christ and many friends old and new have been wonderful. Callie's grandma wrote a poem to help verbalize where we are coming from with the emotional side of this. Lots of folks are praying for Callie's healing and for wisdom in dealing with her health issues. The most important thing every one can do is to help Callie be a regular kid and catch her joy of life.

Callie is fast approaching her second birthday; and she sure acts like it. She pushes her plate onto the floor when she's finished eating, whines when she doesn't get just what she wants, sticks food items in her nose, and one of her favorite words is "NO". Her calm manner persists most of the time. Music really brings her out of her shell- she loves to bop to the beat and just got a tambourine that she likes to tap. Callie is learning to sing "Jesus Loves Me", but sometimes makes up her own little ditties. We don't really know the words since she still has a language of her own - but we are learning to recognize more of her words each day.Callie loves to play Barbies, puts her other babies "nite-nites" and gives them a taste from her bottle now and then. We are working on drinking from sippy cups and straws,though. She is starting to use the potty and sleeps on the bottom bunk of her and Megan's new bunk beds.

Her best Christmas present, besides Jesus, is her first manual "zippy" wheelchair. (Thanks to the MDA services coordinator, Katie, and the folks at Chesapeake Rehab who worked to get this worked out.) Since SMA is under the Muscular Dystrophy umbrella- one of Jerry Lewis' elves brought her a loaner chair on Christmas Eve. Callie seems to find it quite comfy and Mommie can't wait to take her out walking and loose a few pounds. Off we go.....
Merry Christmas Callie!!


Links


FSMA

MDA

Johns Hopkins Medicine

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