Wednesday, July 5, 2017

When You're a Special Needs Mom Who Had Special Needs

I am exhausted.

I say this throughout the day because there is no other way to explain how I feel and even that doesn't do it any justice. Most will think that my exhaustion is related to my busy schedule and physical demands placed on me by Evie. Yes, that is part of it, but there is so much more going on. My body has been attacking me since the birth of my daughter (2010). When I need it the most, it is in a state of rebellion and each battle destroys a little bit more of my defenses.

First, it was my thyroid. No matter what test was administered it always showed that it was functioning perfectly. But it was also growing. A lot. Like two and a half times normal size for a total weight of 75 grams when they removed it. I almost lost my voice. It has taken years for my vocal chords to recover and even now they are not at full strength. That is what hurt the most. My ability to sing songs to my daughter ceased to be because it hurt. So I hummed. Not the same though.

Losing my thyroid required that I start a daily regimen of synthetic thyroid hormone pills. Great! I'll die if I don't have them. Awesome! Who doesn't love being bound to medication for the rest of your life. But I take them. Then the exhaustion set in. Falling asleep at a stop light is not my idea of optimal balance.  It took over a year of constantly saying I still didn't feel right and was too tired before anyone actually listened. My first doctor suggested my extreme fatigue was due to our special needs life. Um...No. That is not an acceptable answer. I found a new doctor. A change in medication (from synthetic to a natural desiccated thyroid) and I started to feel better for a quite awhile. And then I didn't. (seriously, it all becomes a blur)

The fatigue returned. My body just felt weak and tired all the time. I started feeling heart flutters/palpitations. My limbs felt heavy after 20 minutes of exercise. Just everyday simple tasks would leave me out of breath. I thought my thyroid medication was not longer working. I repeatedly mentioned it to my doctor and nothing changed. No additional tests were ordered. I carried on.

The fatigue really started being a problem again after I underwent emergency surgery in 2015. Afterwards, a post op infection basically placed me on bed rest for 4-6 week which was interesting to manage and could not have been done without help from my family and Evie's teachers.

Many parents will tell you that they will lose track of their own health needs because they are overwhelmed by the needs of their child(ren). I was no different. I'm so over going to doctors with Evie that I just don't have the energy to do for myself. I also know that when I go they will want to do something (tests) or send me somewhere else (specialist or therapy) and I seriously don't have time for all that. So, this mystery condition just went unchecked despite my bi-annual appointments with my endocrinologist.

I finally decided I needed to find out what was wrong. I thought I was going to have a freaking heart attack or something. I made an appointment for a physical with my primary care. I gave my blood. They ran their tests. Then I was told I am anemic (iron deficiency anemia). Not just a little. A lot. I have to take iron pills every day and more blood work is in my near future. Lots and lots of blood work.

But I wasn't going to cave into this new condition. I told my doctor I am training for a half marathon and would I be able to run. She said it would be best if I didn't until we determined what was causing my anemia and my levels were back up. Naturally, I ignored her. I am SUPERWOMAN! A little low iron (14...should be about 40 at its lowest) and low red blood count (8.1...should be between 12-15) wasn't going to stop me. Did I mention I'm stubborn and hardheaded?

I completed a 5k while pushing 80+ pounds (Evie and a jogging stroller). The course included a bridge and a 5 or 6 story spiral ramp. (I don't run the entire course. I do intervals of walk/run.) I couldn't breath after I crossed the finish line. I was gasping for air like a fish out of water. I am NOT superwoman. I am a special needs mom who now has special needs of her own. I don't know what this may mean for us in the long run. My body's betrayal has wounded me. When I need my body the most and my life demands more from it than ever before, it has decided to fail me. Repeatedly.

Admitting that I can no longer keep up the pace I have been forcing myself to live is difficult. I may have to drop out of my half marathon. I may have to start taking naps more frequently. I may have to get transfusions. It is not just as simple as eating more spinach and popping an iron pill. If only (sigh). What I do know is I may not be superwoman, but I am going to continue living like I am and not let these physical setbacks stop me from being the best I am able to be. Right after I take a quick nap.

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

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!).