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!

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!!

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? :-)

Glimpses

...of the "old" Ellie!

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.

WE LOVE YOU GUYS!

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!