Yesterday Evelyn attended several pre-op appointments.  Before we left our hotel she was not happy.  She kept saying she didn’t want to go or meet Dr. Park.  It was hard to hear her say these things as tears welled up in her eyes.  We promised her there were no needles and it was more of a meet and greet type day and a chance to show some new people all the great things she can do.  There was also a promise of movie theatre popcorn (we have a theatre in our hotel) after our appointments.

Our first stop was Day Surgery where we met with a very nice nurse.  She asked some questions about allergies and how she has reacted in the past to anesthesia.  We found out she is the only one having SDR on Wednesday and her surgery will begin at 8:30am and will go till around noon.  They will give her something to calm her nerves and likely help her forget any scary parts.  They didn’t have anything for parent nerves (yes, I asked).  There will also be no needles while she is awake which was good to hear as she is quite scared of them since having Botox.  The nurse also told us when we have to be at the hospital and when to stop food and liquids.  After, we headed to the next appointment at Neurology.

First, Evelyn got weighed and had her height checked.  She has definitely grown!  After, she played in the waiting room until we were lead to a different room to watch a video on SDR which you can watch here if interested.

Next we headed to a second room where we waited a few minutes (enough time to throw on Evie’s Warrior shirt and take a few pictures) and then met with Deanna.  She is the Coordinator at the Center for Cerebral Palsy Spasticity (SDR clinic) and is so nice!  We chatted about the trip to Australia and New Zealand their team just came back from.  They met with over 70 SDR families.  We asked a few questions and then were taken to Dr. Park’s office.

It was surreal being in Dr. Park’s office.  His walls are covered in pictures of smiling patients from around the world.  We saw many of our warrior friends on the wall too.  Evelyn was excited to look at the faces she knew.  I think it made her feel more comfortable.  Dr. Park soon came into the room with his assistant and shook our hands.  After some introductions he asked Evelyn to show him how she walks.  He also asked her to walk on high knees, run, wiggle her feet/toes and side sit/long sit.  Evelyn did everything without a complaint.

Dr. Park said she has a mild level of spasticity overall but evident in both sides based on her reflex response (he could see the overactive response).  He also showed us a new way to stretch her ankle than what we have been doing which she will tolerate more (basically pulsing her foot up and down instead of a long stretch).  At this time he doesn’t feel she needs heel cord lengthening, but maybe in the future.  She will be getting serial casting done after surgery to give her a long stretch for both ankles/heel cords though.  These are typically worn for about a week.

Dr. Park said this is the best thing we could do for her.  He agreed with everything he originally predicted including that her balance, gait and endurance will improve.  He feels she will basically be a “regular” kid in the near future in terms of her motor development which was amazing to hear!  Dr. Park made us feel very comfortable and we didn’t feel rushed at all when talking to him.  Evelyn was pretty relaxed with him which made me feel better too.  She even told him we forgot the book about him and he said next time to bring it and he will sign it.

After answering some more questions it was time for Evie’s picture with Dr. Park!  It was a pretty awesome moment seeing our warrior sitting with the man we have been learning about and seeing pictures of for so long.  Knowing he will be getting rid of her spasticity in a few short hours is pretty mind blowing! Even while writing this, it still doesn’t seem real!

After saying “See you Wednesday” to Dr. Park, we headed to another room down the hall for a physiotherapy assessment.  We met Jackie, one of the ten SDR specific therapists (they have a huge PT department) who was also very nice and excellent with Evelyn (who by now was running on fumes).  They videotaped the session and had Evelyn do various tasks in order to classify her according to the Gross Motor Function Classification System . Some of the things Evie had to do included walking, high knee walking, crawling, stairs, side sitting, jumping and kicking a ball. Then Jackie checked her range and agreed serial casting would be good for both legs.  She also said Ev would likely not need a new pair of AFOs (her super shoes) and that she would just be ordering her SMOs (shorter than her super shoes) and shoe inserts.  After her assessment she got her very own SDR shirt and a new Froggy friend.

When we got back to the hotel she got her popcorn and she told her grandparents she wasn’t scared at all today! So proud of my girl!

Tomorrow is the BIG day!  Brian and I will be going to the hospital for 7:00am with Evelyn.  As tonight progresses I am sure our nerves will start to emerge.  Everything has been so positive but of course, this isn’t a small procedure and recovery will be hard, especially on our little miss.   Evie is a strong girl, physically and emotionally and I know she will rock this new journey of hers!  She may not understand all of this now, but hopefully she will one day and tell us she is happy she had SDR.

We will send updates as we can.  Thank you for all the prayers, positive vibes and messages!! We so appreciate it!

#SDRChangesLives