Sunday, January 31, 2010

This Is The Day That The Lord Has Made...

Wow, what a difference a day, a bowel movement and a good night's sleep can make! :-)

Ellie asked to play on the floor this morning, so we cautiously decided to let her.  Wow!  She sat up, started crawling around and was completely happy and pain free.  It truly feels like a miracle because just yesterday, she was nauseas, weak and very sore. 

We DEFINITELY noticed a difference in how she moved around.  She has never been able to crawl with one leg moving separately of the other (she "bunny hopped" with both legs moving at the same time), and now she did, without any effort!  While sitting, it's now easy for her to put her legs under her bum.  Before, her legs would be too tight to move them that way.  It's fun to see!  Of course, in some ways, her movement is more difficult now, because her legs are weaker and she's going to have to strengthen some of the muscles that have never been used before.  Her balance is unsteady, too, as she's learning how to coordinate her new body.  THAT is why we have all that intensive rehab ahead of us...

We have happy hearts!  Enjoy your Sundays, as we will ours.  Tomorrow, we go HOME!

Saturday, January 30, 2010

Bustin' Out

...of the hospital!

We have officially been discharged from the hospital and are hanging out at our hotel suite.  While it's very exciting, it's also a tad nerve-wracking because Ellie is still quite sore and immobile.  She did pretty good in the car, sitting in her car seat, so we're optimistic about the big flight home on Monday.

Ellie DID have a bit of a "moment" when we got back to the hotel suite.  I think she was under the impression that by going back to the "Vancouver House", her body would also return to the way it was before the surgery.  She wanted to sit up on the floor and play with her toys as she'd done before.  We let her lie down on the bed, but when she tried to sit up, she realized that not only did it hurt, she wasn't able to do it.  Bless her heart.  Her body is working so differently now, and I think she's sometimes overwhelmed and obviously frustrated.  Pray that she will continue to be a trooper and that Richard and I figure out creative ways to keep her happy while she's completely immobile.

Phase one of this journey, the surgery and hospital stay, is OVER.  Thank the Lord!!

Friday, January 29, 2010

Stand Up Tall

Sitting up straight in a low-back chair for the first time.  Ellie's balance and trunk control isn't what it used to be, so she was very unsure of herself at first.  But, she conquered through and as she got more distracted with her puzzle, was able to sit up better and better.

She stands!  The therapists made Ellie some leg braces that go from her feet all the way up to her thighs.  This gives her legs extra support, as they are very weak right now.  She did MUCH better than I thought she would at standing!  She was thrilled to look out the window (understandably, since we have a beeooteeful mountain view)!



She'll kill me for posting this picture when she's older, but it's a good view of her back and you can see some of the leg braces too.  She has two tiny incisions on her back, and they are healing really well.  Getting up to go to the bathroom is pretty difficult right now, so we decided to revert back to diapers for a bit...hopefully not for too long!

TGIF--The BC Children's Hospital Version

Night #3: Done.  Mostly successful!  Ellie was restless during the evening, but eventually fell asleep for a good 8 hours.  She had some pain and nausea issues first thing this morning, but they've been resolved with oral meds (and all the puke landed on Grandma, as a good-bye present, ha!).  Ellie is completely off IV meds and fluids now, which is a very good sign.

Richard and I spent the morning in the mountains, while Grandma stayed with Ellie at the hospital.  During that time, Ellie had another physical therapy session and she was able to sit up on a chair all by herself for a few minutes.  Also, she spent about 45 minutes upright in Grandma's lap, so that's a really great sign.  This afternoon, they will try standing.  Right now, I can't imagine how she would have the strength for that, but we'll see.

During Dr. Steinbok's morning check-in, he made mention of the possibility of being discharged TOMORROW.  The thought makes me excited and scared in the same breath!  It would obviously be so wonderful to be out of the hospital, but Ellie is still so weak and sore that it makes me nervous to think of transporting her, etc.  Hopefully she'll gain more strength in the next 24 hours and we'll be able to spend the night in the hotel suite, sans beeping machines, IV pumps and vital-sign checks!

My mom flies home tonight, so pray that Richard and I will be able to handle all the Ellie-care ourselves.  Yikes, it's like we're new parents again!  Maybe we need another baby shower? :-)


...of the "old" Ellie!

Thursday, January 28, 2010

Sitting Up: Take One

The therapist first started by stretching Ellie's legs.  Richard and I were astonished at how easily they moved!  Normally, we would have to pry her legs apart to separate them because her muscles were so tight.  Kinda cool to see!

We VERY GENTLY got Ellie onto Daddy's lap (we were all a little anxious about moving her, but we were able to get her there without *too* much pain).  She was quite happy to be on Daddy's lap (we're still not at the "smiling" stage yet...hopefully tomorrow).

The therapist tried to get Ellie to kick her legs up.  She was able to do it a little bit, but it definitely takes a lot of effort.  It's very obvious as to why we need so much rehab after this surgery...

After we were done with stretching, we took Ellie on her first stroll.  Getting her into the stroller was a bit tricky, but Richard was able to do it.  As you can tell from the picture, she was very exhausted by the time we got her into the stroller and was still groggy as we hadn't yet stopped the morphine.  She was not in the mood for smiling.

This picture definitely reflects her mood after being in her stroller for about 15 min.  She was DONE!  And TIRED!  Sweet thing.

Sweet Dreams

Night #2: Done.  With sleeping success!  Praise the Lord! 

Richard stayed the night with Ellie and he said that she slept straight from 6pm till 7am, only getting up for about an hour to watch some Sesame Street.  You have no idea how wonderful that is!  She needed to sleep so badly and the pain is completely under control (when asked if her back hurts, Ellie now responds with, "No, and quit asking all the time!"  Ha!).

Today the main mission is to wean her off the morphine.  She is still on a decent dose (along with a few other drugs that they're also going to try to wean).  As long as the pain doesn't return in the absence of morphine, it will be awesome to get her off that stuff.  She is still so groggy and I'm REALLY missing the chatty, happy Ellie.

The physical therapist will be by later this morning and she will probably try to sit Ellie up on the edge of the bed.  I am hoping and praying that this will be successful because Ellie is itchin' to sit up and doing so will be a great first step towards recovery (and discharge...can't wait for that!  This "hospital hotel" stuff is getting a bit old :-)).

We are optimistic.  It looks like the worst is over and we were all able to power through (though I may need some counseling after the night I spent with her yesterday....good thing it's provided free for me at work, tee hee!).  Pray for continued healing, that Ellie will be able to get off the morphine and other strong drugs, that she will tolerate sitting up and that Richard, my mom and I will have the wisdom to advocate and care for her as needed.


PS: Sorry for not posting pictures.  Ellie decided that her "toy of choice" yesterday would be Daddy's Camera.  So, the batteries are completely dead and I have to wait for them to charge!

Wednesday, January 27, 2010

11:00 AM Pacific Time

Just a quick update to Chrystie's last post, as she's (hopefully) sleeping now while the rest of us are at the hospital. Ellie is better now it seems, they've started changing over drugs to switch away from the one(s) that are likely to have been making her nauseous; so the hope is that the new meds both keep the pain under control and allow her to keep drinks/food down. She's been much better pain-wise this morning as well, there haven't been any crying spells, and she keeps wanting to 1) watch TV, 2) have a story read to her or 3) pretend to sleep (because that little girl loves to fight *actually* sleeping).

So thinks look to be definitely better than the last post, and one of us will keeps things updated as we go!


Poor Babe

I hesitate to post this because so many of you love Ellie and will find it difficult to read these words and be unable to help her in any way...except, of course, to pray.


There is, however, heartache for her pain levels.

Yesterday evening at around 9pm, Ellie started having back spasms. Those are painful in and of themselves, but imagine that your spine has just been cut open and you're having them. AWFUL.

This is not an uncommon side effect of the SDR surgery. The pain is usually managed through morphine and other narcotics. Medications that we now know wreck havoc on our little Ellie's tummy. They have tried a bunch of pain meds, but none seems to be working as well as I (or the doctors) would like. Ellie was pretty much up all night and the spasms were excruciating. It was, without hesitation, the most difficult night of my life, watching my sweet baby girl in constant pain.

They are still trying different drug options. The spasms seem to have weakened, but it's hard to tell. Ellie is still in a considerable amount of pain and it's so very hard to watch.

Since I have not slept since 5:30 yesterday morning, I am now at the hotel suite, ready to get some sleep. I just wanted to update you all and beseech you to continue with your prayers. Until Ellie's pain is managed, she won't be doing any sort of recovery today.

Tuesday, January 26, 2010

6:30pm (Pacific Time)

What would we do without the internet, eh?! It is awesome that we get to keep so many people informed, in one swoop of the keyboard! I just left the hospital. Richie is there with Ellie, and I am going to try to catch some zzz's before heading back for the night shift. Ellie STILL hasn't slept, which is frustrating for all of us. BUT, on the positive side, she is super-drugged up now and seems to be pretty much pain free. AND, she ate almost all of her supper! And, friends, we were able to move her legs around a bit and it was UNBELIEVABLE. They are loose and so easy to move!!!!!!

So, pray for SLEEP tonight, for all four of us out here in Vancouver. PRAISE THE LORD today is over and the surgery is done and it all went okay!

3:00 (Pacific Time)

Ellie is in her own room.  I wish I could finish that sentence by saying "resting comfortably", but we don't have that down yet.  She is quite drugged up, but fairly lucid.  She refuses to sleep and wants to sit up, which she can't.  She has to lie flat for at least 24 hours.  So, pray that sweet Ellie will succumb to her exhaustion and sleep.  Pray also that her pain will be fully managed (it's pretty good, but every time she moves, she gets quite upset, which is pretty hard on the mama-heart). 

12:45 Pacific Time

Managed to get internet, so quick update: Ellie's done with surgery, everything went fine, no complications. Now we're waiting for them to get her to the recovery room so one of us can see her, we'll keep updating when we can!


9:30am (Pacific Time)

Ellie is in surgery RIGHT NOW. 

I am just so overwhelmed by all the emails and messages that I just read.  This girl is COVERED with prayer and support and love.  It's simply amazing. 

Everything went smoothly this morning.  We made it to the hospital at 6:30, and Ellie didn't once ask to eat or drink, which made our jobs a lot easier.  She was quite nervous, especially when they made her wear the hospital gown, but she was easily pacified through books and picture-taking.  That little girl is such a trooper.

Thankfully, I was able to accompany Ellie into the OR.  There, the nurses put in her IV line, and my little fighter didn't cry once!  We were telling each other Sesame Street stories and she was actually laughing at my ugly yellow gown and funny mesh hat.  Then, they put the mask over her mouth and nose and she peacefully drifted to sleep.  She was never without a familiar face or loving arms the entire time.  My heart was warmed.

Now we wait.  Dr. Steinbok expects to be out of the OR around 1pm (Vancouver time).  He said that it might be longer, and not to worry.  I will try to update again once Ellie's in recovery. 

We are going to try to rest and calm our hearts as we leave our little girl in God's amazing hands. 

Keep praying!

Monday, January 25, 2010

Twas the Night Before...

Tomorrow is the big day.  I can't believe it.  I imagine that sleep will be hard to come by for many of us tonight.  I also know that there are many people, including myself, who wish they could switch places with Ellie tomorrow.  Pray for peace and strength.

We spent the entire day today at the hospital, at pre-admission clinics.  It was such a long day, but also really informative.  Ellie powered through (per usual) and did really well.  I was so thankful to have my mom there with me, to play with Ellie while I spoke with doctor after doctor after doctor.  She's also a retired ER nurse, so I relied on her medical expertise a time or two.  I am beyond blessed to call her Mom.

Ellie needs to be at the hospital at 6:30 tomorrow morning.  Her surgery is scheduled to begin at 7:45.  It should take 4-5 hours.  Hopefully we will be in an area with internet access so that Richard or I can keep all of our prayer warriors and supporters in the loop.

We expect that Ellie will be "out of it" for at least 24 hours after surgery, as they drug her up with pain meds.  Thankfully, we can be with her as soon as she wakes up from the surgery, all the way till the end of our hospital stay.  I'm selfishly hoping and praying for a private room!

Pray hard tomorrow.  I have full confidence in all our doctors, especially our neurosurgeon, but I am still pleading with God to fill that operating room with angels.  Who knows, maybe Ellie will see a few!  Wouldn't that be cool?!

We love you all and feel your support.  We can't thank you enough.

Till tomorrow, from the Hospital Hotel...

(PS: It was such a busy day that I completely forgot to take any pictures!  Sorry!)

(PPS: Richard's here!  Thank you, Dad, for braving the blizzard and getting him to the airport on time!)

Sunday, January 24, 2010

Sunday Night

We made it through the weekend!

Ellie, my mom and I had three days of "down time" and we used it to explore Vancouver and surrounding areas.  We toured lots of Olympic sights, drove up to the mountains, and did some shopping.  Of course, we were trying to distract ourselves from the REAL reason we're here.  I think we did a decent job!

Sweet Ellie has been in fabulous spirits, which is a definite answer to prayer.  We talk about going to the "hospital hotel" every once and a while, and as long as we reassure her that she won't be alone, she's okay with the idea. 

We'll spend most of our day at the hospital tomorrow, taking part in pre-admission clinics.  I'm anticipating that Ellie will have to be poked and prodded, so please pray that the veins in her little arms are easy to find.  The afternoon will be spent with the physical and occupational therapists.  They will conduct more tests on Ellie's legs, so that Dr. Steinbok knows which muscle's nerves to cut on her spinal cord.  (Yikes, just writing it makes me nervous!)

Richard is also scheduled to arrive tomorrow in the early evening.  Hopefully the nasty Manitoba weather won't delay his flight, because we're all ready for another set of physical and emotional hands to join us!

I'll leave you with a few pictures from the weekend.  I'll make sure to update tomorrow.  TWO DAYS!!

Friday, January 22, 2010

Let the Appointments Begin...

Oh, friends.  What a great day we had yesterday!  Your thoughts and prayers were with us as we spent the day visiting doctors and therapists at BC Children's Hospital.  It warms my heart, just thinking about it.

We started the day off with an appointment with the x-ray machine and orthopedic doctor.  After Ellie's hips "said cheese" to the x-ray camera, the doctor read the films and relayed his findings onto us.  He was impressed that Ellie's hips, although still unaligned, had not regressed in the past year.  He then went on to say that there was a possibility that with the rhizotomy (spine) surgery on Tuesday, Ellie's hips may return back to "normal" on their own, eliminating the need for further operations.  Oh, pray this will be so!  The thought of hip surgery in another couple of years is enough to make cry. 

Then, we went on to see the neurosurgeon, Dr. Steinbok.  He'll be performing Ellie's surgery on Tuesday.  Once again, he was just wonderful.  I have complete faith in his knowledge and hands.  He continues to believe that Ellie's life will be changed by this surgery and that she's a perfect candidate for the rhizotomy.  We asked a bunch of questions, of course, and he patiently answered every one of them.  I was encouraged by his prediction that Ellie would be at pre-surgery walking levels within 4-6 week post-op.  THEN, after that, the fun REALLY starts, as we see how much farther she'll go!

At the end of our appointment with Dr. Steinbok, he asked ELLIE if she had any questions for him.  She was shy and kept saying, "Um, Um, Um..."  But, with a little prompting, she ended up asking him, "Is it okay if you fix my legs?"  PRECIOUS GIRL. 

We will find out more about "surgery day" timetable on Monday, when we return to the hospital for more pre-op appointments. 

We then spent the afternoon at the Gait Lab.  This is where they test to see which muscles are being used when Ellie walks.  It wasn't as exciting as we thought it would be, as they said that Ellie's gait pattern is obvious from appearance, so they didn't have to do any "electrode testing".  So, they just did some measuring, stretching, and made a video of her walking across the room. 

After all of that, sweet Ellie was TIRED!  But, she was such a trooper.  Gotta love that girl.

So, now we sit here in balmy Vancouver, twiddling our thumbs for the next 3 days.  We don't have any appointments till Monday.  We're more than open to suggestions for stuff to do!  We can't take Ellie to smaller, indoor spaces, for fear of the germs, so we'll try to be outside a lot.  If I'm brave enough, maybe we'll venture out into the mountains.  This prairie-girl driver is a little nervous about that!

THANK YOU again for loving us so much.  We heard so many encouraging words during our appointments yesterday, that I've really become EXCITED for this surgery.  I truly believe it will be a life-changer for our baby. 

Snacking makes waiting for the doctor so much easier!

Stretching and measuring Ellie's legs.  And, no, she's not in just her underwear!  They asked us to bring her bathing suit bottoms for the appointment so they could see her legs better. 

Stretching Ellie's legs and measuring the angles.

The Gait Lab video taped Ellie walking across the room a few times.  They will analyze the footage and determine which muscles are being used when she walks.

Wednesday, January 20, 2010

We're Here!

We made it, we're in Vancouver!

God shined down and it was really amazing, as far as travel-days go.  Now, we're tired.  THANK YOU for your encouragement and love!  All the messages have warmed our hearts more than you will ever know.  Even though we don't know anyone in this big city, it feels like we're surrounded by loved ones because you have travelled here with us. 

You are loved!

(Some "fun in the Calgary airport on our layover" pics for your enjoyment....)

Tuesday, January 19, 2010

Leaving on a Jet Plane

Tomorrow's the big day...when we REALLY get these surgery wheels turnin'!  Ellie, my mom, and I leave for Vancouver at 1pm.  Wow!

Richard just finished giving me a "how to download pictures from the camera" lesson, so hopefully I will do this blog justice and post lots of updates and pictures for all of you Ellie fans! 

Speaking of pictures, here are a few from the past few days.  On Friday, we spent the afternoon at our local Children's Hospital, with our beloved physical therapist.  She performed the Gross Motor Function Measure test on Ellie.  It was a lengthy and tiresome test, but Ellie powered through.  Our therapist wanted to test Ellie BEFORE the surgery so that when she re-tests in July, we will be astonished with Ellie's improvement in all 86 of the tested areas!    The following are some pictures of Ellie doing her best to accomplish each test task:

Trying with all her might to maintain sitting position with her legs straight...she did it for the required 10 seconds, whoot!

Reaching for Abby Cadabby (if she only knew it was a therapy task, not just "playing around"!)

Sitting up from lying down on her back; something that's very difficult for her to do...what a trooper!

Taking a bit of a break before attempting the next task...

More sitting...

And now to standing!

Just for happy measure, I'll leave you with a picture of Ellie enjoying a bee-ooo-tee-ful Canadian winter day, out in the snow:

"See ya" from Vancouver!

Saturday, January 16, 2010

The Sunshine State

"Why are you going to Florida after Ellie's surgery?"

This is a question I've been asked several times, and I seldom feel as if I have the time to provide a decent answer.  So, here goes...

Ellie will be attending classes at the Conductive Education Center of Orlando, four hours at a time, five days per week.  She will also be seen by a private physical therapist and occupational therapist (starting at 3 times per week, but then decreasing to once per week as we ramp up the Conductive Education classes).

The obvious next question is, "What in the world is conductive education?"

In a nutshell, CE (Conductive Ed) is a life-changer.  Ellie started attending CE classes at The Movement Centre as soon as we moved back to Canada, when she wasn't yet 2 years old.  On Tuesday and Thursday mornings, Ellie gets to hang out with her boyfriends (she's the only girl in class!) and Conductors (the teacher/therapist), while she learns how to reach her very highest physical and cognitive potential.  Each child has a one-on-one assistant, helping them with the different tasks--stretching, rolling over, sitting up, manipulating objects (toys), dressing, eating, walking (with canes!), sitting, and a hundred other activities.  CE is different from traditional physical therapy because it focuses also on daily living tasks and education.  I'll steal the synopsis from the Orlando center's home page:

Conductive Education is an intensive, multi-disciplinary approach to education for children with motor disabilities; it combines educational lesson plans with physical activities. In our program, children with cerebral palsy repeat tasks and movements on a daily basis, allowing their brains to find alternative paths to create desired movements like sitting, standing, walking and self feeding.  Conductive Education is based on the theory that the central nervous system in children with motor disabilities has the capacity to form new neural connections, despite neurological damage. Conductive Education has the potential to help a child with motor disabilities achieve new movements and greater independence.

I can hardly speak of our local Conductor without tearing up and getting all mushy.  We love her and she has not only helped Ellie, but has been a rock for Richard and me.  She constantly reminds me that Ellie's potential is endless and gently encourages us to push Ellie to the next level.  She (and our "traditional" physical therapist--another person we adore) suggested we look into a CE program for Ellie's rehab.  The staff at The Movement Centre recommended Orlando, and, from there, everything seemed to fall into place perfectly.

While our local Conductor and physical therapist would love to be a part of Ellie's post-op rehab this winter and spring, they are unable to provide the frequency of appointments we need.  Because of staffing and funding limitations, we would only be able to attend sessions twice per week.  That's not enough.  It's the rehab that's going to maximize the benefits of Ellie's surgery, so we want her to get as much of it as possible.

So, off to Florida we go!  Richard already telecommutes, so he can work from anywhere.  Regardless of rehab location, I had to take a 6-month leave of absence from my job in order to care for and chauffeur Ellie.  So, it was the perfect opportunity to "go for it" and head down south for some major rehab.  Our local CE center offers "Summer Camp" (5 sessions per week, 4-5 hours per day) in July and August, so as soon as we get back home from Florida, we'll continue the rigorous schedule at home.  That should bring us to the 6-month post-op mark, when therapy frequency can decrease (just in time for Kindergarten, oh my!).

And, there you have it.  A "simple" long-winded, Chrystie-answer to your question!

(Here are a couple of pictures of Ellie at The Movement Centre.  I'd post more, but it's really difficult to find pictures of "just Ellie", as her CE is done in a group setting.  I don't want to overstep any privacy boundaries!)

Thursday, January 14, 2010

Ellie's on Facebook!

Many of you have tried to sway me into providing Ellie-updates via Facebook, so you will be happy to know that I've succumbed and set up a group for her.  I've made it open to everyone, so the more the merrier.  If you haven't received an invitation, you can search for the group entitled "Ellie's Cheerleaders!" 

The lengthy and pictoral updates will be made on this blog, though, so keep it here for all the nitty gritty details. 

Thanks again for all your lovin' and encouragement! 

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...