Evelyn has hit the one month post-op milestone!  Since being back home we have been reflecting on the last month and everything that has happened.  When you are “in it” you sometimes don’t realize everything going on around you so thought I would look back and summarize this chapter of Evelyn’s Life Changing Journey!

Highlights

• Evelyn having life changing surgery!  This has to be the biggest highlight because this procedure left her spasticity free (bye, bye spasticity).  Her future mobility without SDR was likely going to be limited and her pain increased.  She will always have cerebral palsy but her future mobility and quality of life is now going to sooooo much better!
• Meeting Dr. Park!  We saw this amazing man four times during our time in St. Louis.  Each time he was always very nice and there was a sense of comfort when with him.  We knew Evelyn would be in great hands and that we were doing the right thing.
• The nursing and hospital staff was amazing!  We were constantly being asked if we needed anything, they didn’t seem to mind all the times we asked for them to check something or turn off an alarm and they were all so nice!! We felt Evelyn was in the BEST care during her stay.  Also, the food was good!
• Evelyn’s first physiotherapy session out of her hospital room.  We were so proud of her for doing as much as she did that session, only three days post-op.  Children are so resilient!
• Watching Evelyn take independent steps not even a week after SDR.  It was amazing to see her do this.
• Seeing how easy certain activities and movements are for her now like riding a bike (still has to work on coordination) and how flexible she is.  Also seeing her on the scooter was awesome!
• Obtaining another opinion from Dr. Tychsen regarding her eyes and eyesight was good.  We now know next steps.
• Though the serial casting was important to gain range (and cheers to not needing muscle lengthening at this point!), they weren’t the easiest things to work with but Evelyn handled getting them on very well and we all enjoyed decorating them!
• Seeing Wesley grow and develop.  All the extra one on one time he had with his grandparents helped develop his vocabulary.  He also started to jump on his own and loved racing to the window to look for cars and trucks.
• A BIG hightlight was all the love and support we received from afar on a regular basis!  Friends and family checking in to see how we were all doing.  The amazing comments on Facebook and Instagram.  The words of encouragement from the CP parents I messaged often.  Evelyn’s Encouragement Bin was also amazing to have (more on that soon).  We really felt the love and it really helped us get through it all!   Thank you!!

Every journey has ups and downs, here are a few downs:

Not So Good Stuff

• The muscle spasms.  These were mostly under control after the first episode.  I can still hear her screams in my head from when they happened the first time.  It lasted about 15 minutes and it was probably the worst thing we went through the whole time we were in St. Louis.  No one wants to see their baby in so much pain.
• Having to put in a new IV line.  Evelyn did amazing all things considered but hard for us to go through as she is pretty traumatized when it comes to needles ( from her Botox injections over the years but no more Botox. Yay!).  Any time she sees a needle, she freaks (understandably).
• Bacon flavoured pop.  You probably didn’t expect to see this on here.   We saw bacon flavoured pop at a store and being big bacon fans we thought “We NEED to try this!”  It was awful!! Brian said it was the grossest food item he has ever tasted BY FAR (makes me wonder what other gross stuff he has eaten).  Think burnt plastic.  Yuck!
• Our original entertainment for our fundraising dance notified us that they had to cancel our first week in St. Louis.  Luckily, with some help from Brian’s Dad, we found a replacement and we can’t wait to dance the night away in support of SDR families in May (Save the Date- May 12)!
• We did NOT visit the Magic House.  We heard so many good things about this place but we never made it there.  They had a measles scare during the week we wanted to go (sans casts).  We will check it out if/when we are in St. Louis again.  It looks awesome!

Brian and I also spent some time discussing the immediate changes we have noticed with Evelyn since having SDR.  This list is always growing but this is what we came up with so far:

Post- Op Observations

• She grew!  Evelyn seems so much taller and her posture has improved.  We needed to get new pants.
• She is much more flexible.  She can bend her legs and stretch them out more than before.  She can sit cross legged easier and squat lower (when holding onto something).
• Her ankle movements have increased.  We are still waiting to see Lefty’s toes dance but she is able to flex her feet much easier and with a bigger range.  She started doing this the same day she had SDR!
• Her hair seems a lot longer.  Probably not SDR related but still a recent observation nonetheless.
• Without getting into too many details, her bowel movements have changed.  The time of day varies more and it is much easier for her to go.  Less straining/constipation!
• She can stand still…BIG DEAL!  Before it was very difficult for her to stand still without moving her weight back and forth to try and keep her balance.  Now Evelyn will just be standing there (with and without braces).  Amazing!
• When she walks her heels are down more so than not.  Evelyn still has bad habits we will need to work on but her gait pattern has already improved!  Can’t wait to see how she does in a few months.

Like any good summary of events, time for some numbers:

Stats

• Drove over 2500 km round trip to St. Louis, Missouri
• Spent 34 nights away from home (2 traveling to and from, 32 nights in the hotel)
• 4 hours spent at the Ronald MacDonald House during Evelyn’s SDR surgery/recovery period
• Evelyn spent 5 nights in the hospital and had 2 different roommates
• Evelyn had 19 physiotherapy sessions  (4 in-patient, 15 out-patient)
• Met up with 2 Canadian families who were coming and going on either end of our trip (so nice to have seen them!)
• We had 4 grandparents come down and helps us for 2 weeks a piece (THANK YOU!)
• There were 3 Jessica’s we met and worked with at therapy and 1 Rebecca and 1 Jackie
• 4 new pieces of equipment Evelyn was given (SMOs, night splints, knee immobilizers, shoe inserts)
• Evelyn wore 2 casts (1 on each leg ) for 6 days
• Celebrated 2 holidays – St. Patrick’s Day and Easter
• We had 4 sunny days in St. Louis the whole 32 days we were there
• Evelyn had 3 balloons sent to her in the hospital to cheer her up
• 3 is the number of stuffed animals we arrived in St. Louis with, pretty sure we left with 8
• We received 4 different packages at the hotel from family, friends and co-workers (so nice!)
• 16 days is how long Evelyn went without a bath.  She did get her hair washed at “Daddy’s Day Spa in the Sink”
• Visited the Science Centre 5 times and saw 2 IMAX movies and 1 planetarium show (it is free but the membership is worth it)
• Checked out the St. Louis Zoo 2 times and the Children’s Museum 1 time (that was enough for Brian)
• 630 feet is the height of the St. Louis Arch which Brian and I went up
• We watched 4 grown up movies over the month (I, Tonya, Red Sparrow, Bushwick and Love, Simon) and the same 3 kids movies A LOT!
• Too many dance parties to count!

In Summary

So a lot happened in March 2018 for our family and this is just the stuff I could think of at this moment!  A lot happened and the funny thing is, who knows how much Evelyn will even remember.  I plan on making her a book of some sort about this all one day.  As she gets older we will tell her about this surgery and why we did it and about the amazing support we have received.  She will learn about this journey and she will still be on it!

Our St. Louis chapter has ended, but the next one has begun.  Tomorrow kicks off Evelyn’s first full week of rehab.  It is going to be a long chapter full of hard work, lots of appointments, tears/screams, amazing therapists, gains (hopefully few set backs but they are expected), lots of driving, developing new skills, being tired and it will all be WORTH IT!  We know there will be tough days but we also know our Evie is one strong girl with a warrior spirit!  She is going to rock it!