Wednesday, January 13, 2010

Ellie's Story

It was raining the day Ellie was born. Warm rain. The kind of rain that makes you want to stick your tongue out and catch a drop of heavenly goodness.

The overcast skies spilled over into my hospital room at Las Colinas Medical Center in Irving, Texas. While I was so relieved to know that my pregnancy would soon be over, and the nausea, swelling, and discomfort would come to an end, I was scared. I knew that Ellie was coming early. Too early. 33 weeks was not enough time in the oven. Yet, we knew that March 15, 2005 would be her birthday because my waters had broken and I had to deliver within 24 hours.

At 6:15pm, Ellie was born. The room was quiet. Eerily quiet. I had spent the last half-hour hollering with each push, and then, within a second, there was silence. My focus shifted entirely to the grey, limp baby at the other end of the room. I could hardly see her, because the bassinette was surrounded by doctors and nurses, working furiously in the silence. They wheeled her out. I thought she had died.

A while later, the neonatologist came into the room...with good news. Ellie was alive! I remember his words, describing her as "very sick", but she was ALIVE. She wasn't breathing on her own so they had to intubate her. However, the prognosis was good. The doctor said her chances at a full and happy life were very high.

Ellie spent 28 days in the NICU (Neonatal Intensive Care Unit). When we brought her home on that glorious day, we waved goodbye to the hospital for what we thought was the last time.

Looking back, I now realize there were many early signs that Ellie had sustained a brain injury during her first few days of life. She was terribly colicky, and for much longer than "the books" described (we didn't sleep for 6 months). She was relatively happy in her Jolly Jumper and Exersaucer, but she never put weight on her legs while in them. Her eyes were crossed from the time we brought her home from the hospital. Ellie didn't roll over until she was 7 months old.

I expressed my concern to our pediatrician and he dismissed her delays as being "preemie issues". He was convinced that she would catch up. At 9 months old, Ellie had surgery on her eyes for strabismus (crossing). The ophthalmologist asked if she had cerebral palsy. I retorted with, "Of course not!"  And then I slapped him.  (Just kidding.)

It got me thinking. Ellie was 10 months old and was still unable to sit up without support. We were receiving at-home physical therapy (for those "preemie issues") and our therapist suggested we see a neurologist. When Ellie was 11 months old, they put her under for an MRI.

On March 14, 2006, the day before Ellie turned one, we received the MRI results from the neurologist. Ellie was diagnosed with Periventricular Leukomalacia (PVL), a brain injury most often associated with premature birth. It's an injury that affects the white matter in her brain. The white matter sends messages from the brain to the muscles. The messages that Ellie's brain sends to her legs (and, to a lesser degree, her arms and hands), are jumbled up. This manifests itself as constantly tight muscles (spasticity). As a result of the PVL, the neurologist diagnosed Ellie with cerebral palsy.

Of course, our lives changed that day. Our dreams were instantly revised. Our love for sweet Ellie only intensified. And God held our hands throughout.

Ellie is a miracle...not only because she lives, but because she conquers EVERY DAY. She has worked a hundred times harder than a typical child to hit these milestones, but she's done it!

Sat up without support: 12 months
Pulled to a stand: 16 months
Took a step with a walker: 26 months
Went from lying down to sitting up, without any help: 21 months
Speaks in sentences: 30 months
Walked in walker down the block, by herself: 38 months
Walked with 2 canes (with some help): 4 years, 2 months

We have spent many, many hours in therapy. Ellie receives physical therapy, occupational therapy and speech therapy. She is usually in some sort of therapy session 3-4 times per week. That is her normal.

When Ellie was 3 years old, some of her doctors and therapists started mentioning and suggesting that we research her candidacy for Selective Dorsal Rhizotomy, a type of spine surgery. It took a year for us to obtain all the information and opinions from 3 different neurosurgeons.  We decided that this would be a great option for our little girl. We opted to have the surgery done by Dr. Paul Steinbok, at BC Children's Hospital in Vancouver. Dr. Steinbok has performed hundreds of these surgeries and the results have been spectacular. He has also practiced with the leading SDR surgeon, Dr. Park (St. Louis Children's Hospital), and performs the same, less-invasive type of surgery. While we would have loved to have seen Dr. Park, the best in the world, we have been so impressed by Dr. Steinbok, and having the surgery done in Canada will save us nearly $50,000.

Ellie's SDR is scheduled for January 26, 2010. Gulp. We will fly to Vancouver on January 20th, in order to attend pre-op appointments. If all goes according to plan, Ellie will be discharged on January 31st, and we will fly home on February 1st.

One of the most difficult aspects of the SDR surgery is the post-op rehab required. Ellie will have to undergo intensive physical therapy for 2 years after the operation. For six months after surgery, she will be required to attend physical therapy sessions 5 days per week. The intensity drops from there. While this is a huge undertaking, it's the physical therapy that will generate the results we so desire for our precious little Jelly B'Ellie. We plan on spending February-June in Orlando, Florida, so that Ellie can attend intensive therapy classes (5 days per week for 4 hours each session).

God continues to calm our fears and hug our souls as we embark on the next step (literally!) of this journey. Thank you all for loving us, for praying for us, and for showering goodness onto Ellie. We are so blessed.

The journey's just begun...


  1. She is so precious. She is going to run like the wind before you know it!

  2. Great first post on a wonderfully purty blog! Richard did a fantabulous job. I look forward to reading all the updates. Hugs!

  3. I'm a puddle of snot and tears. Reading her story brings back so many memories and so many of our phone calls. I am so honored to call you friend...that I get to walk this journey out with you you. I look forward to seeing Ellie WALK into the true destiny that God has for her. It's going to be AMAZING. Such a miracle! I love you guys!!

  4. I've been following Ellie's progress for the last 6 months or so, praying for you guys as you start this new phase of your journey. Good luck!

  5. "Our dreams were instantly revised!" Perfectly said. I am so proud of all of you. Praying and cheering you all on! I <3 you!

  6. Oh how I love you all! Praying for you extra hard these days!

  7. Love Ellie's new blog! I will be checking it faithfully and praying for you every step of the way.

  8. I am wishing you all the luck in the world!!

  9. We, at The Movement Centre, are all cheering for all of you. As a parent of a preemie, I know your challenges. I pray that everything goes well for Ellie, and I look forward to seeing her back at The Movement Centre with her other "pals" in the conductive education class. All the best to you. -Margy Nelson

  10. I don't think I ever knew ellie had PVL . Audrianna also has PVL and Like ellie she was diagnosed with CP right around the time she turned one We found out in April of 2006.

  11. Hi Ellie and family! I'm so glad I found your blog. My son (AKA The Monkey) is five years old and also has CP in the form of left - sided hemi. He walks without support, but isn't very graceful and struggles with spasticity (particularly during growth spurts). We're in the process of having him evaluated for SDR with Dr. Park as well - we just finished the video and are waiting for Monkey Boy's PT to finish her paperwork. I'm so looking forward to following Ellie's journey and seeing her progress. Take care!