CVS is...

CVS is EXHAUSTING:

I am a tired mommy. This has happened in the past, I think I've blogged about it in the past, the times when I just want to yell "ENOUGH" and feel what normal feels like again. But for as much as I want that, I know Ellie wants it even more.

Since her stay in the hospital, Ellie's body has NOT gotten back on track. She has headaches every other day, stomachaches and more pain than ever before. The pain is sad, but it is easier on her than the vomiting. She talks about her symptoms and her feelings regarding CVS more than ever before and one of the things she has told me lately is that she would take the sharp pains over the vomiting any day. I get that.

CVS is COMPLICATED:

Last Monday night I was heading out the door to a much anticipated meeting (a good one that I was excited to go to) and Ellie started complaining of stomach pain. Sigh. My 13-year-old cousin was coming to babysit and while I didn't want to leave my cousin with a puking child, I also really needed to be at this meeting. Both of them survived the night but I decided it was time for a clean out. Ellie had only had one bowel movement in about 11 or 12 days. Think about that for a second. It blows my mind. But, it's just another way we know that things are not ok in her little body. Ellie has struggled with chronic constipation since she was a toddler. It is also a really common ailment for CVS kids. I think Dr. Li said something like 40% of kids with CVS also have irritable bowel syndrome. So, it's just another part of her "stuff."

So last Tuesday was clean-out day. Ellie calls it doing a "flush." Staying home meant missing St. Patrick's Day at school, being bored at home, and pooping your guts out all day long. Considering all of that she was a pretty good sport. I'm so tired of having to make her do things that aren't fun and aren't fair. So, first thing in the morning we went to Starbuck's in our pajamas (and Walgreens) to be silly. Then we did pedicures and watched a movie together... then the pain started.

CVS is FRUSTRATING:

CVS affects the whole family. We spent at least 4 hours of that day in the bathroom. Ellie sitting on the porcelain throne and me holding the puke bucket next to her. Poor Eleanor was white as a ghost, sweating like she was in labor and begging me to please let her cousin-bff come over after school even if she threw up. Colin was bored as well and laying outside the bathroom door waiting for his turn to have my attention, "Please Mommy, will you please play a game with me now?!" I was home the whole day and nothing got done--no cleaning or cooking or folding. AND, I was exhausted come bedtime. Frustrating.

CVS is so SAD:

After a long day full of pain and pooping, Ellie was asleep for maybe 30 minutes at bedtime before she woke up crying.

"Ellie? What's wrong?" ... "My tummy hurts. I hate this!" (Geez, I'm tearing up just writing this). So in went the constipating zofran, then 20 minutes later good enough to get up to go to the bathroom (again) and there we sat.

CVS is BONDING:

Ellie and I are tighter than imaginable. Brian wants to help, and sometimes he has to help so that I don't lose my mind, but when she is sick or in pain all she wants is me. For the hour plus that we were in the bathroom that night Ellie talked to me about all sorts of things. We even laughed--"Hey Mom, have you ever tried having a staring contest with a Beenie-Boo? It's so hard!"  She tells me her secrets, tells me about friendships at school and talks about what she wants to do when she is all grown-up. Recently, and this is new, she also talks about her symptoms--what it feels like, what she dreads, and inevitably we talk about how I promise to always be there if she has an episode. This is a hard promise knowing that at some point the particulars of life will get in the way of me being able to be with her for an episode. But for now I think her 8-year-old self needs the confidence and comfort knowing she will not be alone in her pain.

CVS= The PAIN is REAL

This was a post from a mom who has CVS (and now her child has CVS) from a parent group that I'm a part of on Facebook:

Just want to say.....to love on those kiddos who have abdominal migraines. I am experiencing my first since being a child and it is excruciating....worse than labor. Nauseating deep back and stomach pains and cramps that travel nerves all the way to neck and back of shoulders. Always believe the pain....it is bringing back memories as a child for me. It is real!

We are now at 5 weeks of major discomfort, on and off nausea, headaches and stomach pain (some vomiting, some diarrhea and lots of constipation). 5 Weeks. CVS is relentless. The doctor increased her main medicine a good amount a few nights ago. It takes about a week for the medicine to build up in her system and we are still waiting, holding on to hope. This morning I sent her to school and just as she was about to walk out the door she asked for one of her zofran. Heartache. 

She is so tough. So much stronger than me. She is resilient and happy and always wondering "what's next?" in life, despite bouts of pain and nausea. On days like today, I'm strong because she is so strong. On days when she is angry and sad and hurting, I dig deeper. But right now we are both tired, and praying this new dosage works for her. 

(and the nurse just called... and here I go to pick her up from school.)#cvssucks