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Achondroplasia

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Marvelous Monday

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“How many times has this happened?” She asked me to repeat the number.

“Six. But only 4 times this year.” It was May. I knew our batting average was not good on this one.

“I’m going to refer you to a neurologist just to get her take. Other than that, she’s perfect- don’t you worry.

Marvelous Monday Decompression Surgery #aisforadelaideI’d heard that before. When Addie was a newborn, I was told not to worry. A lot of kids have big heads, but they just wanted to be sure. I’d pushed to know more and at 9 1/2 weeks she was diagnosed with achondroplasia. And here we were. I’d pushed it. I’d asked if these blackouts were normal. She’d hit her head. No breathing, loss of color, completely limp, eyes rolling. 10 seconds with a lifeless body that would spring back the with force of the Devil inside, screaming. Followed by a headache, but other than that, back to herself. Six. Times.

“So she hits her head, cries, then stops and passes out? Sounds like she’s holding her breath.”

“No,” I responded. “She hits her head and nothing. I pick her up, trying to stop her fall from the beginning and nothing. She is lifeless. Then she comes to. She doesn’t cry first. She’s not holding her breath.”

“I see.” I see, too. Her hands furiously typing into the tiny laptops that the hospital just implemented in their paperless plan. She’s slamming at the keys, catching each word.

“Does she  ever get headaches?”

“Yes, but they’re weather related, my husband and I get them too. She has them a few times a month.”

“So you all get headaches at the same time?”

I paused. I felt hot and upset. “No, we don’t.” I’m wracking my brain. Dave and I get them on the same mornings, but not always Addie. Some days she just rolls around holding her head, and some nights she’s done this. “But it’s not all the time,” I’m sputtering. I want to take it back. How did I miss this?

We talked for a while longer. We did a neuro workup… a few times. Then, “I’d like to order an MRI to check it all out if that’s OK with you, mom.”

I left with papers and numbers and numbness. From the first hours I spent reading about achondroplasia, I feared decompression surgery. The recovery, pain, spinal cord, scarring. Everything about decompression scared me.

The MRI was done, and that was that. I was sure she was fine. My achon baby who walked at 16 months, spoke in full sentences, showed no significant apnea after age 1… she didn’t have classic signs of compression in her spine. She was fine.

She was fine.

I got a call the very next day from a doctor. The neurologist didn’t like the MRI, the neurosurgeon didn’t like the MRI. The story, the images. They were not great news. “Give her office a call. They will get you an appointment soon.” The appointment they  gave me was nearly immediate.

We discussed surgery, but nothing was in stone. I wasn’t convinced. I wanted more opinions and I would get them in San Diego from our specialists- but after the images and story, the answer was still clear as mud. Sure she falls a lot- all kids do. The blackouts may not be from compression. Her images are not indicative of surgery. Our doctors could go 50/50 on the surgery. I felt lost, but with an order for more images. They would tell us something. They must.

So last Wednesday we headed to Boston. Hungry and hot, Addie was ready for whatever was in store so long as she got to eat at some point. By 3pm they finally took her back- she was so loopy from the meds that she could hardly whimper when I handed her to the anesthesiologist, but I was still torn apart. We met back up in recovery, where Addie was still asleep. There was a laundry list of medications, and my usual lion woke up rather calm (read: drugged) from the anesthesia with her usual intubation-throat, looking for snuggles. At last, we were in the car and headed home.

By midnight we were mostly asleep, but not ready for the next day.

We walked into the APC building at Rhode Island Hospital- full of angst and armed with her MRI from the day before. We talked again. I mentioned her falls seemed to be from slow feet. Her waking in the night. Her headaches that still happen, but not often. We talked about how she hangs her hands funny sometimes, but she seems strong. There haven’t been any blackouts since April- she hasn’t gone backwards since then. Then there was a neuro workup.

At first, I thought it was my mind playing tricks, but as the specialist hit her heel, I saw her foot jerk. The fluid motion I was looking for, the common reaction of a reflex was replaced with this ugly movement. Taking her foot in her hands, she pressed up, let go and checked with the hammer again. “Clonus.” I said. She looked at me with sad eyes, knowing eyes. She recognized defeat in my voice. I had nothing left to fight about. Clonus is a sign of neurological hindrance (a continuous rhythmic reflex tremor initiated by the spinal cord below an area of spinal cord injury, set in motion by reflex testing). Catching it and treating the compression would be key in keeping Addie healthy. She could eventually stop walking and suffer from severe spinal damage without it. Decompression was the way to go. I had my answer.

All I could think was fucking clonus.

The neurosurgeon came in. More people checked. Sure enough. What wasn’t there just a few weeks ago was emerging. You can’t make this stuff up. I was near speechless.

I’d wanted an answer. I said I did, at least. I wanted a yes or no, and I was looking for reasons. There it was. Coming in little jerky, hesitant motions. I signed the paperwork for her surgery (which is happening tomorrow) and we headed to the lab.

“Her veins roll away,” I said. “They look closer to the surface than they are. Seriously- they will try to escape. They’re hard to get on her.”

“We do this a lot,” she said back with a polite smile. No one likes to be told how to do their job, but to be fair, I warned her and I know my child.

They pulled the needle out 3 times, and moved it around in her small arm a dozen times. “I got it,” a phlebotomist beamed. The second one who’d tried. I was annoyed, I was crying. I’d told Addie that this day wouldn’t hurt. We were just going to talk to the doctor. But here she was screaming from her back, “No mama. I want uppahs. Please pick me uppahs. You said. You said. It hurts.” I tried to take it on, “I’m so sorry, bug. I’m so sorry I lied.”

“YOU LIED.” She screamed. It came in a spit. A slap in my face. She was covered in snot, and red-faced. The fear spilling from the corners of her eyes. I started to heave into her neck. She suddenly stopped crying and began to stroke my face. “Don’t be sad, mama. It’s ok. You ok, mama.” I stopped my tears. This was her moment. She began to whimper again into my chest. They taped the gauze on and she practically leapt into my arms.

We got home and she fell right to sleep. She napped. I made lunch and I started some laundry. I called Dave to tell him everything and I answered all of his questions. I joked on the phone with my mom about attempting to get a urine sample from a 2 year old. I sat down to work. And then it hit me. I started to panic. I lost my breath. The scar. It would be on her neck forever. I didn’t want her to have that scar.

It’s not the aesthetic I worry about. It’s her sweet neck. Where I nuzzle. Where I pull her hair up and the most graceful neck appears, balancing her head gently upon her shoulders. Long and lean. Untouched. Beautiful. There will be a scar in that place, to constantly remind me: I couldn’t fix this. I’m her mother, and I could do nothing but hand her over to a team of specialists.

As I came out of my panic, I decided I needed to put time aside. This week, as much as I want to write because I love to write, I will not. Of course I have work to do, but who I am means more. And who I am is a mother, a wife. I need to support my family this week and appreciate all of your love and concern as we regroup and work through this. As Addie goes through decompression surgery, we too must decompress.

Spinal Decompression HOlding Hands #aisforadelaide

I’ve spent weeks in denial- maybe months. I ignored a lot of things, never mentioning them except to friends because it was just Addie being Addie. Headaches I kept calling seasonal. Falling that looks like she was dizzy. Holding her hands in a funny way some times- almost floppy. Blacking out entirely when she hits the back of her head. Holding her neck. Screaming at night (which is pretty new). Gasping for air in the night, but not related to apnea (still sort of a mystery and hoping surgery helps). And now, clonus. I’ve denied it all too long, and I could not be more thankful to the multiple doctors who pried and asked more questions, forcing these things out of me. Showing me that decompression, though scary, is truly the direction we’ve been headed. Her strength, both physical and mental is sure to be tested, but our girl will be strong. My warrior.

Addie will be at Hasbro Children’s Hospital from Tuesday to possibly Friday (hoping for discharge before the weekend and maybe earlier), and I will be by her side the whole time. Her recovery means more to us than anything now, and while I can’t wait to be back (I love to write and share!), I have to take this time for family.

Have a beautiful week, reader. Talk soon,

Filed Under: Advocate, Community, Dwarfism, Family + Parenting Tagged With: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

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Comments

  1. Chelley, Addie, and Dave,

    I just want you to know we are praying for you. I am sure you are beyond yourselves at this time. God is gracious and good.

    Reply

  5. You got this. Although it is the scariest thing you have had to face, the thing you have been dreading, you got this. Remember that Addie most likely will not remember the surgery, and the only memory will be the scar. If nothing else, that is a reminder of how much her mom pushes for her daughter. Your little lion will roar louder than ever when it is all over. We will be thinking of you this week!

    Reply

  8. You all are in my thoughts and prayers. You made me cry reading your post on the blog. My heart goes out and you will be heavy on my heart and mind tomorrow!! <3

    Reply

  12. I know what it’s like to have your hysterical toddler being poked over and over AGAIN, where they weren’t able to get a vein and then they wanted to try the other arm. I had to actually tell them, “NO” and that I would go somewhere else. A great lab for children (and adults! : )) is a Kent lab on 390 Toll Gate Road, in Warwick. They are phenomenal, I wouldn’t go anywhere else (it’s a hidden gem)! Best of luck with Addie’s surgery this week and take care of yourself.

    Reply

    • The veins are visible, they just roll… I wish they’d taken my warning to heart instead of being so sure of themselves 🙁 Thankfully, they got it, but goodness gracious… she’s a baby! Let’s pretend a mom knows a thing or two about their kid. Right?!
      martinkadelux recently posted…LPA Fashion Show #lpaSD2014My Profile

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  13. Oh Chelley. I’ve been following along for a while and your posts always have that naked, pure honesty that touches my heart. My eyes are filled with tears because I feel like I know you and little Addie now. I’ll be thinking of you all week, my thoughts and prayers will be overflowing. Stay strong mama.
    Tammi @ My Organized Chaos recently posted…The New OPI Nordic CollectionMy Profile

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  21. God bless little Addie! Please take you time with your child, and be there for her. We will be here for you! My daughter was born with a large head and had fluid in her brain. Her head is still large, but so far she is developing fairly normal. She had some heart defects and was born a preemie. Hasbro takes good care of their tiny patients.
    Amy Desrosierss recently posted…Enjoy a Freckled Lemonade on National Lemonade Day, August 20th & Support a Cause!My Profile

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  22. I am always so moved by your posts. I truly believe that we are given what we can endure on this planet as we learn our life lessons. You seem to be one of those people who is just extra strong. As always, you, your husband, and your wonderful, beautiful daughter are in my thoughts. Hang in there Chelley.
    Jennifer recently posted…Easy Meal Options for SeniorsMy Profile

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  24. Awe… poor thing… i will keep y’all in my thoughts and prayers and hope things go smoothly! I hope you take time to take care of yourself through this all and we are here anytime you need us

    Reply

  25. I will be sending pryers your way- it’s great that you can be tough for her and battle through the doctors and tests so she can get the best treatment for her!

    Reply

  46. I couldn’t even imagine what you’re going through. I hope everything goes well and she recovers quickly. Keeping you and your family in my thoughts and prayers.

    Reply

  49. Dear Addie and Family,
    You will be in your Mom’s arms a short time and she will protect you with her love. Wake up better and get back to helping Mommy & Daddy enjoy their lovely child. I will wait to hear that you are feeling like yourself again. God Bless you all.

    Reply

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