Monday, August 30, 2010


Our little Madeline Kate got her first taste of standing last week. After many tears while being pulled in and out of the stander, and many adjustments by the orthotist, we finally swung Madeline into an upright position. The tears fled away and a brilliant smile instantly covered her face.

Repeat when I brought her home and she showed Daddy and sisters her new trick! They were all squealing with delight, which made Madeline clap hysterically and pump her fists in the air, all while beaming radiantly (Is that redundant?)

Right now she is tolerating 20 to 30 minutes in her stander, made especially for her by Abe at Advanced OrthoPro, INC in Indianapolis. The back is molded to the exact shape of her very curved little back to prevent any undue pressure. While in her stander, she plays at the couch, the piano bench, or the (too-HUGE) doll house (which someone gave us for free, and which Kirsten is going to remodel!). She also enjoys standing in front of the door.

To answer some quick medical questions: I've been asked several times what the point of this stander is. First, Madeline cannot weight-bear even slightly. Because of this she has no regular joint or bone compression from her hips on down. Bone compression is crucial for growth. This stander gives her added doses of compression, all while she's having fun being up on a normal 2-year-old level, which, of course, is the second reason to use a stander.

We also visited Madeline's orthopedic surgeon, Dr. William Didelot. The great news is that Maddy's bones are FINALLY getting big enough for surgery to correct the severe kyphosis in her lower thoracic spine. (You can see a little bit of how bad her curve is here. Picture a golf ball or a little bigger coming off the back of her back. It's hard to really tell how bad it is without seeing her in an upright position. The x-rays are bizarre.)

So she's being scheduled for surgery in March, when Dr. Didelot will remove a couple vertebrae and put rods in her back, hopefully ones that will grow with her to reduce the amount of surgeries required. He can't get her on the schedule before November and he doesn't do this type of surgery during the holidays or cold/flu season because of the high risk of infection. Any infection around the rods would most likely require removal of all hardware and another surgery to redo later on.
The hope is that a straight back will free Madeline's lungs up to breathe better and possibly get her off her oxygen. We have seven months to pray that miracle in, okay? :)
Thank you to all of you who prayerfully follow Madeline's journey. I cannot begin to tell you how blessed we feel that she is in our home, brightening our days with her constant kiss-blowing, smiles, and shear determination. Knowing that we have such wonderful family, church family, and friends who continue to rejoice with us and pray for us is buoying.


Kirsten said...

Hurrah for Miss Maddy! ;)

Shore Girl said...

I'm so excited for little Maddie! She looks positively radiant in that first picture --- I can almost hear her clapping! Imagining the sunshine she brings to your home -- she's amazed me more than once with her sunny personality and her "never complaining spirit" (even though she was so sick when she was here last!) Hooray for Maddie!!!

Shaun said...

The progress that Maddie has made is amazing!! She is absolutely adorable!!

Lori said...

She looks great in that stander. She gets to view the world in a whole new way when she is upright!