Tuesday, February 14, 2017

Growing a Girl Scout...Get Your Cookies Here!

Evie is officially a Daisy. We joined a local Girl Scout troop that her best friend is a member of and it has brought another layer of chaos to our schedule, but it has also brought her another social outlet with peers her age. At our last meeting the girls learned what makes Evie laugh (coughs and sneezes) and enjoyed making her giggle at their antics (it sounded like everyone had a cold). It's a good thing.



She is selling cookies, attending meetings, and this weekend she will be a part of her first Girl Scout activity, "Let's Grow" World Thinking Day. We will be exploring tables set up by other local troops and each one will feature a different country. Our troop will be sharing information about France and making crepes (I'm in charge of whipped cream).

Would it be easier to keep her home? Sure. But what fun is that. We are committed to helping her live a full life complete with enriching experiences and exciting adventures. I don't think I would have considered signing her up a year ago, but after one night with a troop and a little encouragement from a friend we jumped in. There are many obstacles to overcome for both of us (what's new) and we will troubleshoot them as they come. She can definitely go camping, but white water rafting is off the table (maybe a canoe...we'll see).

The Girl Scouts welcome ALL girls. That includes Evie and every little girl that is similar to her. It takes a little extra effort, but for us it is worth it. Now if only we can make sure she stays awake during the entire meeting.

If you'd like to help Evie reach her cookie sales goal please place your order on her site:




Her troop has voted to spend the night at the local zoo and learn about the animals there. Their second option will allow them to pet and feed dolphins. These are great experiences for young girls and thank you in advance for your support!

Tuesday, April 5, 2016

#BentNotBroken: Curvy No More

*Disclaimer: This is a longer post then I typically write. It contains a few images that some may find upsetting. I do not feel like I can adequately share this experience with you without sharing the images. I promise they are not overly graphic.

Evie is now two weeks post-op.

It feels like we just came home yesterday and at the same time it feels like it all happened months ago. Maybe sleep deprivation does that to a person. Makes them loose all sense of time.

I want to tell you that I've been an emotional wreak. That I have wept and wailed. That anger and fear consumed me leading up to and after the surgery. But I would be lying.

I felt at peace. Sure I worried a bit. Was this the right decision? Would she forgive us for the pain that was coming? Does she understand why this was the path we (her parents) chose for her? But those were just passing worries that fled back into the darkness that is fear whenever I remembered that I have no control. This wasn't no longer in my hands. That, in truth, it has never been in my hands.

When I acknowledged that I had absolutely no control in this situation, that is when peace started to take over. While binge watching Longmire (video clip) on Netflix a character put into words how I was feeling:
"Peace is not the absence of conflict. It is the acceptance of conflict." 

I accepted that we would end up at this crossroads many years ago. We hoped and prayed that it would be when she was older, but with each x-ray that hope dimmed a little more. So this was the path we chose to take and we have no regrets. The acceptance of this inevitability, the acknowledgement that it was not in my hands, the knowledge of whose hands it was in, and my mad research skills came together and peace blossomed from the inside out.

Now let me get down to the nitty-gritty stuff...

We checked into Wolfson's the night before her surgery. It looked like we were moving in and essentially we were since we were there for 8 days. The PICU team came in to get Evie's IV's placed (this took longer than anticipated) and they had to get at least two that night (a third would be placed the next morning). She smiled and giggled the entire time! When it comes to the traumatic stuff for kids they have people come in the room (if available) to help distract the child. It worked like a charm! *Tip: Try to make sure your child is well hydrated for easier IV placement.

The next morning we were off to pre-op to wait and for a minor buzz cut (sorta). I have a few things that I like to send with Evie when she goes into surgery (yes, we've done it often enough that we have surgical support items). Those items include: her quilt with pink and orange flowers our dear friend Leslie made for her, a crocheted lovie (they help keep her from mouthing her hands) from my mom, and her best friend Moe-Moe the monkey. I forgot to slide her superman leg warmers on before we left the room so they missed this trip (oops!). You'll see the haircut in a bit.

Bye sweetheart, we'll see you soon!


I was very fortunate to not be alone while waiting for the surgery to be completed. Of course her dad was there and so were my parents. I don't think there was anywhere else they would have been. Times of uncertainty brings our family, friends, and our Rett family together. Those we love and those that love Evie texted, called, and emailed us their encouraging words, prayers, and healing vibes (ya bunch of hippies! love ya!) My dear friend Hot Mess came to sit with us during the entire procedure! We all laughed and cracked jokes. It's how we deal with stressful events.

Dr. Eric Shirley was able to place the MAGEC growth rods in Evie's back. This is a great thing because it means lengthening procedures are controlled externally using a magnetic tool that will allow him to extend the rods as she grows (and trust me this girl grows!). The surgery went really well and we anticipated 5-6 hours, but she was done in about 4 and a half! The surgery was a success! We were able to see Evie shortly in her private PICU suite.

Ellipse Technologies: MAGEC Rod & Controller
Once she was settled and we spoke with her surgeon, we were able to see Evie. It wasn't the easiest moment. I couldn't pick her up and cradle her in my arms. I also knew that jostling her too much would hurt her. So we all settled for letting her squeeze our fingers and stroking her hair. She was still intubated when we saw her. They also brought in a portable x-ray machine to take an image of her spine. This gave us an internal visual of how drastic a change these growth rods made for our little girl. The external change was apparent immediately and we could barely believe our eyes. She was so straight and long! Heck, we were all so accustomed to seeing her curled over that seeing her straight felt like someone was playing a cruel trick on us.

Getting her x-ray done.


Before at 70 degrees
After with her spinal upgrade.

Now you may be asking yourself why Evie needed to have her hair shaved off on the sides (yes, both sides) for a back surgery. One word...Halo.

We call it the Dr. Shirley special.
I think he was inspired by Natalie Dormer from The Hunger Games.


Evie was placed in a halo for the surgery to secure her position and keep her body held as straight as possible. In order to achieve this they had to place her in traction (just for the procedure) and screws were used to hold the halo in place (four to be exact). This was not done before she left us (thank you Jesus) so I don't have a picture of what it looks like and the images I've found online aren't really right  (it wasn't gravity traction). As a result, she has two little boo-boo's on her forehead and one on each side of her head. We've made an appointment for Friday next week to have her hair style updated. Embrace the buzz cut!

The first night in PICU was filled with the beeps from various machines, nurses and assistants coming in to check vitals and administer medicine, and me never really getting comfortable. That's hospital life for ya! Our goal was to extubate Evie that evening. Well, that happened...and it wasn't pretty.

Extubation was successful and a bit painful for Evie.

Her little face was red and swollen, which I was prepared for before surgery. Hearing her soft whimper was like music to my ears. It was like hearing a newborn cry for the first time. A sense of relief flooded over me. Unfortunately, her breathing wasn't as strong as everyone would have liked and in order to maintain her oxygen levels she was placed on a bi-pap. Whee! This is obviously not what we would have wanted, but better this than intubation again. It was removed the next day for which we were all thankful and happy.

*Tip: Evie does not expel excess air the bi-pap pushes into her body. As a result, she developed excess air trapped in her intestinal tract which caused some distention of her stomach (she swelled up like a ripe watermelon). We know now she needs to be vented if she is ever on a bi-pap again, which can be done through her g-tube with her tube extension or a Farrell bag.

Once the bi-pap was off, her pain well managed, and she wasn't sleeping we managed to get a few smiles, a faint giggle from her, and a attempts at mouthing her lovie. All joyfully celebrated! These were good signs. She was also quite the social butterfly and everyday of our stay someone came to visit her (not just the nurses, therapist, and doctors). By day two the physical therapists came to get her sitting in her wheelchair. That was a three ring circus because of all the cords, tubes, and iv's stuck in her. Sheer will and determination on their part made it happen and of course I photographed it!

This is an important part of recovery.
One major benefit: It helps clear gunk from her lungs.
The last visitor during our stay in PICU was Miss. Jacksonville, Amanda Hatcher. We met her a few weekends prior to her surgery at the Tim Tebow Foundation Golf Classic at TPC Sawgrass (we had a blast!!!). Unfortunately, Evie was asleep and did not wake until a couple of hours later. She loved tugging on the balloon strings and making them bounce around. While at Wolfson's, Amanda went to visit other patients living the hospital life like us. Thank you Miss. Jacksonville!


Later that evening we were moved to our new suite. I wasted no time getting settled (we were going to be there awhile) and decorating her room for Easter. She was gifted a Easter baskets from some of the staff and one of our fellow Rett mom's that came to visit. It has taken some getting used to that the children's hospitals bring her goodies when we stay for any length of time.


We continued getting her in her wheelchair to sit up. Slowly introduced nutrition back into her system (a long grueling process). Watched a lot of Disney Jr. and discovered she really likes the movie Strange Magic (I was surprised).


More visitors came, with more goodies and lots of love for our girl. My Rett family was in full swing along with so many others. We are so thankful for their friendship, support, and visits. It really does help make the days at the hospital pass by a bit quicker.

Art with a Heart
They came and painted pictures for Evie.
She was enthralled with this particular volunteer.

Evie and her G-Boss on Easter.

Brad "BigPoppaChive" Zahn
ChiveON!

Evie and her BFF.
These two crack me up!

The wound care team came in to remove the wound vac and change her dressing. It was time for me to see her incision. Deep breath!

Not exactly what I expected, but WOW!
Now I was responsible for keeping it covered and clean.

These wonderful ladies did a great job removing the bandages.
They took their time and used this awesome spray to make it easier.
I watched this process very closely and assisted (just a bit) so I knew what I needed to do if/when I needed to change the dressing at home. Which of course I ended having to do a couple of times because of that darn liquid diet she was on. C'est la vie!

Before we knew it, we were all set to go home. The doctors signed off on our walking papers, we got our prescriptions filled from the hospital pharmacy. *Tip: Always get them filled before you leave the hospital. Just because they have the medication prescribed, doesn't mean an outside pharmacy will.

We were finally on our way home!!! A little nervous, but I was confident we'd be ok and we have been (a little sleep deprived, but its getting better every day).



Our last nurse for this stay at Wolfson's.
I promise she was in the van.

Goodbye Wolfson's Children's Hospital! Until we meet again (cause let's be honest...we'll be back). Your nurses, assistants, therapists, managers, and support staff rocked  (we really need to have a talk about your food service though...except the Jazzman CafĂ©...those ladies are AWESOME!).


Wednesday, March 2, 2016

Dangerous Curves Ahead

Before Evie turned one, I nearly drove myself insane because I believed she was developing a curve in her back. It was small. Tiny really. Nothing that someone who didn't regularly rub her back would even notice. But I did. I held her and rub her back every day. I just knew something wasn't right.

It was confirmed before her first birthday. She had an eight degree curve. Now I know that isn't severe and I didn't really flip out because from everything I read that was manageable. I knew progression of the curve was what we wanted to slow down. I asked about options and at eight degrees there really aren't many outside of therapy. We took a wait and see approach.

Fast forward through a few visits with her orthopedist and that tiny eight degrees did indeed progress (which I expected). Her scoliosis curve shifted from 8 (2011) to 18-20 (2012), then from 18-20 up to 40-45 (2013), and finally from 43 (2014) to 59 (2015). Now there is a margin of error to consider of 2-3 degrees up or down on that scale, but those numbers and her rather rapid progression meant that her scoliosis was not going to be manageable by bracing and therapy alone.


Life at 59 Degrees
November 2015

Every time she had a growth spurt so did her curve. Now we've gotten to the point that her hip is curling up and she can not correct herself at all. When she attempts to stand, without her brace, it doesn't take long before she is tipping to her left and falling (full disclosure: she can't stand independently at all).

In early 2015, I asked her orthopedist at what degree level do we start considering surgical intervention (TIP: never ask a question that you don't want to know the answer to) and in a very direct manner (which I appreciate) he stated fifty degrees. I breathed a slight sigh of relief because we were still sitting squarely at 43 degrees. We scheduled our next appointment for November and went home with our brace and some big things to consider (and research...my favorite thing).

November was a tough month for our family. On the day of Evie's orthopedic appointment, I ended up in the ER with three IV's stuck in my arms and nurses swarming over me. It was the first time I wasn't able to attend her appointment and I knew it was going to be the BIG one. The same gut feeling I had when she was about 9 months old was telling me that her scoliosis was worse. Surgery was going to be on the table. My baby would have one more, very long, scar to add to her growing collection (one muscle biopsy, two hip scars, and a g-tube).

The news came. I screamed (probably scared the ER personnel). The doctor tending me rushed to my side begging me to calm down (my emotions were affecting my blood pressure which was dangerously low). I pushed the phone away and refused to talk to my husband anymore (fyi: he had no idea how serious my situation was, my mom was waiting until after Evie's appointment to tell him EVERYTHING).

Surgery was officially on the table and, much to my surprise, my husband told her doctor to put her on the waitlist for a surgical date. I would have done the same. (TIP: Over the years I have learned it is better to get the appointment or be added to the waitlist and then think over all the options and necessity. You can always cancel the appointment or remove your name from the waitlist later. No harm. No foul.)

The short version of this story:


Evie is scheduled for spinal surgery at the end of March. She and I will be taking up residence at our local children's hospital the day prior to surgery and will be there for three-four nights. The procedure she will have is called MAGEC and they are growth rods (more about MAGEC coming soon).

This WAS NOT an easy decision. I spoke with many people whom I respect and researched scoliosis a second/third/fourth time (the information was still the same as it was in 2011). We know the risks. We trust our team.

I feel at peace with this decision. I have been preparing myself for this since the curve increase of 2013. I know this is out of my hands. I know who holds the future and we will persevere.

*I promise to keep the blog more current as we go through this process.