If you are a loyal follower of Elle's blog, and by loyal I mean you start off that way, get hooked and wait for the next blog post...and wait..and wait..and wait ( insert yawn).... Yep...still waiting!! And then one day, you get a notification that the blog has a new entry, realize that I stink and have not updated it in almost 2 years, but you still get excited and read it anyway!!! Yep....that's loyalty!!
So, I have been thinking about the blog a lot lately and decided to log in, read a bit and write a new post. At first, I thought parts were missing! My worst fear is that something will happen to the blog before I print it. I really just need to print it. Anyway...what I realized was that part of it wasn't lost...I just had not written in sooooo long! It actually made me sad because there is so much that has happened and I wouldn't even know where to start.
I'll start today...Mother's Day, 2016.
In the past 2 years...we've moved, Elle has started attending a new, wonderful school with fantastic teachers and therapist that are so invested in her development and her happiness as a kid, I bought my dream SUV, I've been able to watch David continue to follow his dreams in aviation, Elle and our family has been blessed beyond words by her nanny who holds "boot camp" for pea so she can work on new skills!!!! I just can't beging to explain, in words, how it feels to have someone love your child as you do and to see them use every opportunity to enrich that childs life and in turn...it enriches yours too. I've met inspiring people and realized that some, no matter what, will always fail you. I've watched Elle grow...she won't stop!! I've asked her nicely on several occassions to stop getting so big but she's 8... She has a mind of her own. I've laughed...a lot and cried some too. I've watched cancer ravage a loved one and have had to say goodbye to my sweet, beautiful, graceful, loving, generous Aunt Phyllis. We've helped Elle get through a major spinal surgery 2 years ago and are gearing up for an even bigger hip surgery within the next month. That kid is resillient beyond belief. She is much stronger that I could ever be!
So...now that I just have to start here, today...because I have left no trail of the past 2 years, I will start with a quick recap of Elle's spinal surgery. Why go back? Well...if you remember the main reason Ikeep this blog is so that it is here to give a glimmer of hope to a parent of care giver of a child that has been diagnosed with any one of Elle's health challenges. If a parent searches for neuro-muscular scolliosis they will be able to read this an hopefully see that you can and will get through it and hopefully, their child will do as well as our sweet Elle has.
After being diagnosed with neuro muscular scolliosis 2 years ago, Elle under went a 6 hour surgery to have 2 growing rods placed along her spine. Elle had a 62° curvature to her spine that left uncorrected, would have continued along it's natural course. This would have folded Elle physically in half and would have started to crush her heart and lung. We were blessed to have Dr. Loveless perform her surgery and knew that she was in excellent hands. Elle was admitted the night before so have her IV lines set. She did so well with this and only cried a bit. Truth be known...I cried more. There is nothing worse than watching as nurses push needles into your childs arms and there is simply no way for you to explain to your child what is happening or why. This was the toughest part of the entire surgery. We knew we had to do this for Elle. There was no question but it was the fact that she wasn't going to understand what was happening. She wasn't going to understand when she woke up 23 hours after surgery in horrible pain. And she couldn't even tell us!
Elle came through surgery well and yes, she slept for 23 hours after. We just let her knowing that her little body needed it. When she woke, it didn't take her long to tell us she was in tebbible pain. As you know, ellle is non verbal but there was no mistaking the fearful look in her glassy eyes and the sound of the heartrate monitor as it jumped to 158!! Thankfully, the nurse was close by and came within seconds. I can remember David going to get her and me, just slumped over the hospital crib asking myself over and over "what did I let them do to you!". This was truly the worst moment. After almost 23 hours asleep, the physical therapists came in to get elle up. I hated the idea, but it had to be. They log rolled her onto her side and fully supported her in sitting at the edge of the bed. I almost didnt even recognize her. She was motionless, dazed and her eyes looked empty. This was from all of the narcotics she was on for pain. They did this with her every day a few times a day. Gradually, she was then placed in her chair to sit. First for 10 minutes, then for 20. We finally built up to an hour. By the end of the week, sweet Elle was smiling and lauging. She made her nurses cry the first time she laughed. They wer truly so happy to see her feeling better. Elle came home after a week in the hospital. With her she brought the hated brace! True to form, Elle learned how to unstrap her back brace and after 6 months....we kinda stopped wearing it. Of course we checked with Dr. Love
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