Tag Archives: achon

Dwarfism Awareness Month

As some may know, October is Dwarfism Awareness Month.

Last year I wrote a proclamation and expected (as only one can expect in Rhode Island) to have to jump through hoops… BUT, lo and behold, I got an email response that October would be declared! It was super late in September, so I was both shocked and SO excited! This year, I got a head start and asked for the renewal of the proclamation in late Spring. And… it arrived just a few months ago!

I ask you to please make October Dwarfism Awareness Month in your state, too! HERE is the perfect wording!

Dwarfism Awareness Month #aisforadelaide

Thank you for helping our community gain some footing- more people knowing, expressing and seeing that people with dwarfism are people. Please consider, even in the medical community, a picture of someone with dwarfism starts out with “This dwarf…”- no other disabilities say this. Most read as: “This PERSON with…”

Let’s make a change.

Let’s spread awareness.

Let’s do this. Together.

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Filed under Achondroplasia, Community, Educate/Adovocate/Make Change

Marvelous Monday

Dave does so much for us, and watching him grow into his comfort zone as Dad has proven to be one of the most amazing things I’ve ever experienced in my life- it’s like he was meant to have kids… who would have thought? With that, when I heard him say, “Hold on, I’ll tie it,” and then a lot of bustling in another part of the house, I was curious, but I figured Dave was on a mission. With a simple recipe and some instruction, he has started Addie on her way to learning many life lessons that are best done in the kitchen.#aisforadelaide #recipe Cream Cheese Brownies

Walking into our little cooking-zone, I caught Addie and Daddy standing at the counter, mixing away- Addie’s new favorite thing to make in her own kitchen is brownies- no matter what else she makes me with me in the real kitchen, making brownies with Daddy has stuck with her. It was a fabulous weekend, and while I love spending time with my sweet lady, it’s nice to reap the benefits of Daddy-time.

Mmmmmm… brownies!

 

Marble Cream Cheese Brownies
Serves 32
Delicious moist brownies that are as good to eat as they are to look at!
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Prep Time
20 min
Cook Time
40 min
Total Time
1 hr
Prep Time
20 min
Cook Time
40 min
Total Time
1 hr
Ingredients
  1. 1 pkg brownie mix (family size)
  2. 8 oz cream cheese, softened
  3. 1 egg
  4. 1/3 c sugar
  5. 1/2 t. vanilla
Instructions
  1. Heat your oven to 350ºF.
  2. Grease a 13x9 inch pan and set aside.
  3. Prepare your brownie mix as directed on the package (we used pre-packaged for a lesson in READING and FOLLOWING DIRECTIONS).
  4. In mixer, beat cream cheese until it's creamy, then add sugar, egg and vanilla. Mix for about 60 seconds on medium (until well blended).
  5. Drop tablespoons of mixture over brownie batter and use a knife to create swirl patterns.
  6. Bake 40 minutes (or as directed by your package), making sure the middle is full cooked- until the cream cheese portion is lightly browned.
  7. Let cool, and serve! Refrigerate leftovers!
Notes
  1. Substitute for cream cheese: Neufchatel Cheese.
  2. Avoid using brownie mixes with syrup pouches- for an extra chocolate boost, add 1/2 cup semi-sweet chocolate chips over batter before baking.
Adapted from Kraft
Adapted from Kraft
A is for Adelaide and... http://aisforadelaide.com/

 

#aisforadelaide Brownies #recipe #MarvelousMonday

With one simple recipe you can teach so much! Addie learned a lot about following both what was written and what Dave was telling her. Do you use your kitchen for life lessons?

 

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Filed under Make it, Marvelous Monday

Flying Around #travel

We loved going to San Diego, and thankfully, had not just a wonderful time there, but a great time getting there and back! Flying the friendly skies truly was a great experience for us!

When we arrived at Logan Airport in Boston, we got unloaded and went in. Without much of an issue, we went through security and wound up at this awesome play space for kids!

#aisforadelaide #lpaSD2014 #loganairport #travel #SanDiego #flying

It was a little disappointing because some friends were over the height limit and suggested activity level for the space, but as a whole, it was a great space! Dave and Addie ran around a lot and got her energy out, which was perfect for the upcoming flight! We headed across the walk and into the family room where Addie got into her PJs and posed in front of the mirror for a bit.

#aisforadelaide #flying #boston #airport #travel #SanDiego

Then we got on the plane! We took Alaska Airlines to San Diego and it was a fabulous experience! We were able to board before everyone else so we could get Addie’s seat settled, and they had some awesome headrests that you could curve to adjust for the sides of your head. These were awesome because then I didn’t have to worry about my head falling down when I slept and hurting my neck!

#aisforadelaide #flying #alaskaairlines #boston #travel #SanDiego

Alaska Airlines also has outlets for each seat, which makes charging devices easy! …and included a decent amount of space for our limbs and bags!

#aisforadelaide #flying #alaskaairlines #travel #funnyfaces

When we landed, it was LATE for us (about 3am), and about midnight on the West Coast. Thankfully, we’d all gotten a bit of a nap on the plane AND I’d booked Super Shuttle weeks before. While we only had a short wait for the shuttle, it was overbooked, meaning there was a person without a seatbelt, and our driver was… exuberant. Being that it was midnight on July 4th there was a lot of traffic- but our driver was keen to stay out of it… which meant weaving, speeding up and braking fast and lots of cutting through neighborhoods. In the end… we got to our hotel in one piece, and the price for the ride was unbeatable. I have no doubt that we were safe… just wish it hadn’t been such an exciting ride!

We’d taken the train up to Anaheim, so we flew out of Los Angles International Airport! As expected, the lines at LAX were a bit longer to get through to security. Thankfully we had preferred passes, and were able to head over to a shorter line. Of course, with a car seat and carry-on luggage and the like, we needed some extra moments to get shoes on and off and laptops out, but there was no rushing us and a lot of assistance from the staff. I was glad that no one was upset with us!

#aisforadelaide #americanairlines #flying #travel #LAX

While we flew Alaska there, on the way back, we flew American Airlines. Their flight was super booked, so they asked anyone who could to check their carry-on. I was nervous, but offered up Addie’s bag and our rolling bag as well. They tagged our items and thanked us for helping, as well as helping us onto the plane early so we could get Addie settled in and what we had left with us stowed away.

#aisforadelaide #flying #Samsung #americanairlines #travel

After boarding, Addie fell asleep followed by myself, but when I woke up, about a catnap later, I was starving! Ooops. We’d had a mishap with some trail mix and all I really wanted was the salad I’d seen on the in-flight menu. Wanting me to be happy, Dave popped up and walked to the back of the plane. After he’d asked for the salad, he went to pull out his wallet, but the attendant held up his hand, “your wife is the woman who is pregnant and was sleeping?” “Yes,” he replied. The salad was all mine, and thanks to the wonderful customer service, it was also $10 saved (much needed!).

#aisforadelaide #flying #salad #americanairlines #travel

All-in-all, I loved both airlines and was really pleased with the ease of travel though Boston’s Logan, San Diego’s International (and their amazing outside bridge), as well as LAX airports!

#aisforadelaide #travel #view #landscape #flying #americanairlines

What are your best memories about airports? Any nightmares?

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Filed under Travel

Survival of the Fittest

#aisforadelaide Survival of the Fittest #dwarfism #achondroplasia

Photo by Lisa Gendron, Agroterra Photography

There are some things that just boil the blood. For the most part, while I don’t agree with “teaching thick skin” to my kids, I do force myself to toughen up. But… there’s always a but.

If anyone who reads this blog thinks that Survival of the Fittest is something that doesn’t apply to my child, that her medical treatment isn’t something that should be covered, I have a few concerns about your fitness level. I question your ability to survive. I wonder, if the application of survival of the fittest should apply, why are you not dead?

From behind the “safety” of your IP address (guess what, that’s NOT hiding your identity), you’ve sent emails about how my insurance should continue to fight me because if my child was not different (I will never repeat your words), she wouldn’t be a financial burden to the insurance system. How I put her through life. A barrage of your friends agree with you- that’s why you feel you can write to me in such a manner. So I ask you a few questions.

How many people from behind their LCD screens, reading these very words just took a medication? Something as innocent as Tylenol or ED meds (which can be a sign of needing to see a cardiologist). Maybe something serious like blood thinners or insulin? Have you needed a blood transfusion? Ever had pneumonia? Have you broken a bone? Did you know you could die from an infection if a broken bone is left untreated? Now, how many of you also have children that are not fit enough to survive?

Survival of the fittest is not about surviving because you’re the fittest, it’s surviving all of the things that come your way. They are what make you “fit”. Fit to survive.

The 7,000+ members of the LPA who strive for awareness. Those people who have gone through and the parents who continue to push through surgeries, while groups band together for support and love- an outpouring of strangers who become family. I don’t think my daughter is amazing because she has a form of dwarfism. I think she is amazing because she’s taught me more about humility and humanity. And humanity is kindness. And those who are kind, survive.

Kindness is to love, but not blindly. To lead, but know how to follow. To not fear the unknown, but those who do not seek to know. The strong, but not the tyrannical.

Survival of the fittest… those who surround themselves with who and what they need. Who will support them and who they support in return (support does not mean agree with). Who adapt society to them, adapt themselves when they can’t, and create change to improve the world. Yes. The world. Those who survive, are the kind.

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Filed under Achondroplasia, Community, Educate/Adovocate/Make Change

5 Things I Want to Clear Up About (my) Pregnancy…

Pregnancy is hard on the body- even the “easy” pregnancies have their days, but it seems like so many things in life, when a woman is pregnant people want to ask questions. Lots of questions… and some of them are rather presumptuous. While I laugh at some inquires, cringe at the few unwanted belly touches, and bite my tongue at the unasked for advice, I figured there were a few things I could just clarify for everyone!

#aisforadelaide #pregnancy #5thingsyoushouldknow

1. No, I’m not done.
Pregnancy is hard, and at some point many women feel that they are done. I get that. When the third trimester strikes, it’s tiring. But not tiring like the first… I don’t want to sleep. I want to do, only I’m bigger (and chasing a toddler) and it’s harder to do… anything. But, I am not done. I love being pregnant. I love knowing that I am protecting that life with all of mine. I love knowing that with each day we are together my babe is getting stronger, healthier, and more prepared for the world!

2. Aren’t you scared for two kids/labor?!
…I’m apprehensive. Having two is certainly not going to be like one, but it was a decision to get pregnant (just as Addie was planned, Millie is too!), and I think with our motto of #MartinkaStrong, we will be just fine! As for labor… I want to bring Camille into the world without medication, the same way I tried with Addie (read her BIRTH STORY). Pregnancy is beautiful, birth is what you make it. I truly believe that. When a nurse overwhelms me, I will stop listening. I will turn my attention to my doulas, inward to my body, to my loving husband and my mother. If a doctor wants to check me and I am sure there is no reason, I’ll ask for time. I have been to this rodeo before. I am ready to make choices, even if they are not the ones I want. I am ready to advocate for the care and birth I want. I am also ready to surrender. To my body. To the moment. To whatever comes in the next few weeks. I do not fear birth.

3. Yep, I can still do that.
Whatever that is, if I am doing it, it means I can. No, I shouldn’t be carrying in a huge box of groceries from BJ’s Wholesale… but I can mow a lawn, I can chase a toddler, I can walk a mile to and from the grocery store. I can, and I will, practice yoga during nap time. I can eat whatever is in my hand and I can drink whatever is in my glass. I can. I really, really can!

4. Are you going to induce?
I don’t know why so many people ask this, or if they know much about the birth process, but no. I will not induce. In my (NOT a doctor NOT a nurse) opinion, medically necessary induction is rare. Age, size of mother or child, or reaching your due date are not medical reasons to induce. Women have been getting pregnant and birthing for a long time. The medical community has learned a lot… the United States, however, does not (NOPE!) have the best mortality rate for mothers. I hope that birth moves more towards being totally patient centered and giving the care to the mother, as well as more choice, but for myself and my research, I choose to let my baby come when she will.

5. Did you want [another] girl? (Followed by: “What does your husband think?”)
Oh my. This one is serious business to me. I always, always smirk. Did we want another girl? No. We wanted another child. Just any child. I don’t even say “healthy” anymore because people consider Addie unhealthy (which isn’t true) and really, a sick child would fit in just fine here, too. We were simply hoping to make another baby (and have some fun doing so). I truly wondered if Dave wanted a boy because I grew up with hearing that- knowing I was, in others’ words, lucky my Dad finally got his boys… I thought maybe we were not quite complete without my brothers, not because of them, but because of gender. Happily, this is not true. Dave heard girl from the tech and I thought he’d left the building for Cloud 9. As he looked at the screen and back down at Addie, I saw him say “Camille.” I myself could barely think. Poor Dave. I thought. And yet here he was, already talking about his girls, and protecting all of his Martinka women.

So… there are some answers! I won’t touch on the inappropriate questions, or the people who want to know more about my pregnancy than my doctor does, but I will tell you there are no current signs of achondroplasia (this does not rule it out). We did deny additional testing beyond a level 2 ultrasound because Millie is doing great in there, and achondroplasia alone is not a reason for a c-section. We will know way more… after she’s born!

What are some questions you wish people would just stop asking during your pregnancy? What’s a question you have about pregnancy? Or my pregnancy? …I promise I won’t bite (and maybe I’ll answer!).

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Filed under Pregnancy/Birth

Marvelous Monday

Dear Summer,

You’ve been a bit of a cruel one. Two MRIs. Two surgeries. Countless days spent with fevers, in pain, tears streaming down her face. My sweet baby’s face. Watching my firstborn in pain I know I’ll never know. Pain I couldn’t heal.

But, here’s the deal, Summer. I won’t let you win. I choose to remember the best days this summer… I choose to remember Summer 2014 like this.

#Aisforadelaide #Summer 2014 She is Fierce

Have a beautiful Monday, Reader.

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Listen to Your Mother… that’s me!

I am still full of awe and honor to have been a part of the 2014 Providence Cast of Listen to Your Mother….

Listen to Your Mother Providence Cast 2014 #aisforadelaide

(My intro written by the talented Carla Molina at All of Me Now):
Chelley Martinka is a Philly native with a little thing for Game of Thrones. A closet drummer, she’s a mom to one awesome kid living with dwarfism and is expecting her second daughter this fall. Chelley is up next with “Do It Ugly.”

Do it Ugly

Everyday, when I look at my planner, I see this quote, Dream so big you’ll look like an idiot if God doesn’t step in!

It’s a reminder to do it ugly. To get in in past my ankles, waist deep. To get dirty, cut- go full throttle.

Growing up, I was loud. I would sneak out. I smoked cigarettes and overly enjoyed cheap beer. I played a lot of sports and I was rough when I did it. I got injured. I suffered from depression. I liked a good party. I liked to study so much I graduated college with a 3.5 in 3 years with almost no friends. I got tattooed. And then got some more. I got dermal anchors before they were a trend. I dated. I over committed to people that needed “saving” and after they were saved, I moved on. I broke hearts. I uprooted myself a lot, took on a lot of jobs, was reckless with my emotions and other people’s hearts.

Doing it ugly was more about how low I could go. How many problems I could fix of someone else’s while ignoring my own needs- uselessly helping others chase their desires. I knew I’d never stick around long enough to see the ending. Like the friend who needed money for car payments… a loan I would never see the repayment of- I worked weeks of overtime. I’m not quite sure why, except it seemed like the right thing to do. I was a wild one with a sucker-streak- looking to take care of all the people surrounding me, and sleeping as little as possible while doing so.

But then it happened. I was approached by a lion tamer with the patience of a kindergarten teacher and heart of a saint. Some have come to call him Dave. So here I was married. A wife. Together we ripped apart the money pit and created a home. We both worked long ours and enjoyed uneventful hikes with our dog and nights by the firepit with friends.

Gone was the Chelley of the past, replaced with this woman who quit smoking, ran half marathons, was letting someone else take care of her once in a while, learned to enjoy wine over whiskey and, for whom staying up late lost its once alluring appeal. Who the hell was I, now?

Not looking for redefinition, she came- The reason I had to get all riled up again. My reason for getting my hands dirty- I was ready for parenting. Here I was, rolling up my sleeves and spending late hours burning the midnight oil- literally- we have oil heat. But I was more than prepared, I’d been practicing to parent this special lady since my days as a rebellious teen.

I knew everything I did from the moment I heard her cry would be things she would be proud of. My perseverance would be her life lesson. I would work hard, and when she was diagnosed with a high-functioning disability, I knew I would dig harder than I’d ever imagined. With letters, videos and a blog, I would educate about our life as a family. I’d take attacks and hard words and fight to change the stigma. I’d create a team consisting of specialists in Massachusetts, Delaware and Rhode Island. I don’t know the answer to that, would be an answer I’d never settle with.

I would allow no one thing would define my sweet girl, a lesson I’d learned from my own mother. Dwarfism, gender, religion or a favorite band would simply be aspects.

I would raise her to be generous, dignified and tough. A woman who could do whatever she pleased, in jeans or a skirt, at a bar watching the game or in the courtroom arguing her case. With my biggest dream being a world that truly sees no difference between my Adelaide and any other human. Recognizing her disability as something about her, not something that defines her.

I spent two days bringing her into the world… and I will give my life to give her dreams so big that she never knows what the ground looks like with her eyes closed.

And while most of my days are beautiful- I work hard to make sure they are. Everything in life that feels like it’s too much is all the more reason to get in there. To do it ugly. Everyday isn’t a fight, but when it is, I make sure it’s worth it, to go hard.

This life is my one shot to make it what I want and give that power to my future warrior woman- and no one will lessen my gusto or dampen my dreams- not even God, herself.

Listen to the cast:

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LPA Fashion Show #lpaSD2014

While we enjoyed all the workshops that the LPA National Conference had for us, we also loved participating in other events- like the Fashion Show! Check out Addie in her first appearance in the LPA Fashion show at #lpaSD2014!

LPA Fashion Show #lpaSD2014 #aisforadelaide

#aisforadelaide LPA Fashion Show #lpaSD2014 #rehearsal

#aisforadelaide #lpaSD2014 #firsttime LPA Fashion Show

#aisforadelaide #lpaSD2014 LPA Fashion Show #cuteasabutton

#aisforadelaide LPA Fashion Show #runway First try!

#aisforadelaide #lpaSD2014 #finalrunwaywalk LPA Fashion Show

#aisforadelaide #addiandjack ##lpaSD2014 LPA Fashion Show

#aisforadelaide LPA Fashion Show #addieANDPayton #lpaSD2014

#aisforadelaide #LPASD2014 #life LPA Fashion Show


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Filed under Community, Travel

Marvelous Monday

It’s ok that the day itself may not be marvelous, because the life that follows will be.

And that’s the damn truth.

I’ve struggled with what is OK to share, and what isn’t, and while Addie is at such a young age, I think it’s helpful for parents to know about what may happen with their small children, especially their children with dwarfism going through scarier surgeries, like decompression. For us, we may have a special case (Addie doesn’t seem to bounce back from anesthesia very well), but here’s the story.

Many parents have recalled surgeries from years past and reminded me that our kids bounce back. I totally agree that they do- Addie is such  a fighter, sometimes I think she must not be mine. But just because she fights doesn’t mean that sometimes her body doesn’t betray her, or that the bounce that some people recall as “a few days” really was closer to a few weeks… but who can remember years ago in such detail?

So… while it is fresh in my memory, while I’m living it, let me tell you what last week brought us, and why not being 100% doesn’t make this a bad week.

(Disclosure: Addie has decompression of the foramen magnum and a C1 laminectomy. There is a photo at the very end of the post you can enlarge to see the incision.)

Tuesday, August 12, 2014

When we got to the hospital, she was asking for banana. Thrilled that Daddy was going on an adventure during the week, I could tell she knew where we were when we left the car with Hasbro’s valet. We walked in the door, I led the way to the admission room- this isn’t my first time at the rodeo. After check-in, we went up to the 2nd floor to meet with our team, do vitals, review health records… the usual. When I saw Dr. Deer, I was thrilled. I’d requested him to lead the anesthesia team and I could feel myself breathe a sigh of relief when I saw his face. “I knew the name looked familiar…” he smiled… as he’d just put Addie under for her MRI in June. Thankfully, the second I asked, Addie’s neurosurgeon put in my request. Things were starting off well.

After the big stuff was done, we went on to the way cool things, like a syringe of Versed (aka Midazolam, used before surgery or medical tests to make you feel sleepy and relaxed – This medicine is a benzodiazepine) and the playroom. As she played, I reminded Dave to pick her up after a bit because she would get loopy. He grinned and scooped her up. She looked up at him and explained in a slow voice with a beaming smile, something about Sesame Street and Cookie Monster then laughed. He looked at me… “told ya,” I laughed. He was wearing the OR gear that was reserved for me… only I am pregnant and can’t go back to the OR with the gas. I gave her kisses and more kisses and a hug that I could feel was being taken away from me. “OK, Mom. We’re ready. Dad, follow me.”

#aisforadelaide #spinaldecompression surgery #incision pre-op

And they were off. I stood there, motionless, for what seemed like 10 minutes. Then I started to pace. I stood in the doorway when he finally came back towards me- making a right to strip off the gown, hairnet and mask, and then a left to come back to the waiting room. We gathered our bags and headed to the surgical waiting room. The patient progress monitor (sort of like a departures/arrivals screen at an airport, but with patient number and status) was not updating from the day before, and I was apprehensive the whole time because it was never fixed… but with Dave sitting near the phone, I was sure we would know something soon.

And then 3 hours passed into 4. It rang… “You’re speaking with him,” Dave spoke into the receiver. I popped up from the couch where I’d been in a sleepy stupor, started grabbing my things around me and my bag. “Ok, thank you,” and he hung up. “She’s done? Can I see her? What did they say?” In his usual calm demeanor, he told me, “about another hour.” I started the timer. An hour left.

I played with my ribbons relentlessly. Orange and purple she’d said. “Should mommy wear them in a bow?” I asked. “Yes, ok,” she replied. And those were what I was holding on to.

aisforadelaide recovery surgery colors #prayforaddie #incision

At about 7 after 1 (5 hours and 7 minutes after I’d seen her), Dr. Klinge walked in. I looked at her with this anticipation and excitement that felt like it was jumping off me. As she sat down, we talked about Addie’s compression and how it looked once she got in there. She showed ultrasounds that she took of the spinal cord, the flow, and discussed how there was some scarring around her dura (the outermost of the three layers of the meninges that surround the brain and spinal cord) and pinching. I heard nothing except, “no permanent damage. We took care of it all…” as she talked on. I was handed a bag of Addie’s baby curls with her name on them, and  “Do you have any questions?” she asked.

“When can I see her?”

She smiled at me and we talked a bit more… and then she left. Addie would be going to her PICU room before we could see her (skipping the general recovery area), and after what seemed like an eternity, I saw him. Dr. Deer walked toward me and I stood so fast my chair fell over (to be fair, the HUGE bag of Addie’s medical history was on the back). I scrambled to grab everything as he told us she did great and we could come back to see her. As he scanned his badge to PICU, my heart was slamming. “She’s asking for something… a bunk…” the nurse trailed off. “Binky bunky!” I grabbed her pacifier, lifted her mask and placed it in her mouth. Immediately she calmed… but once she saw Dave, she begged to have him. He sat down and held onto her with all his might as she settled.

#aisforadelaide #spinaldecompression #surgery incision #recovery

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The first night was rough, but we made it through. As the nurse told me what her lines were for I cringed. Fluids, morphine, Valium. I felt like I was in a panic and was pretty stressed out. Dave got us dinner and even in her stupor, Addie was thrilled that my dinner included guacamole. After we got  her settled, Dave went home for the night. Around 3am I woke up and paged our nurse. The pain in my right side was excruciating, my belly was tight… a contraction that wouldn’t let go. “Do you want a wheelchair?” Julie, our nurse, asked. She was so nice… looking at me with encouraging eyes- I think she wanted to wheel me to Women & Infants. “I just need to drink some water,” I assured her. For about 20 minutes I stretched, drank water and walked around. Finally, I was able to lay back down. Scared I was going to bring labor on, I did my best to sleep, but around 4am, Addie woke up. She was puffy and itchy and wanted to be held… so I did what any 34-week pregnant mom would do. I adjusted myself as best  I could and held her to my chest. She immediately went back to sleep and I cried into her shoulder.

#aisforadelaide #recovery #dayone #incision Spinal Decompression Surgery

Wednesday, August 13, 2014

Her first PT and OT session went well, although she was shaking due to lack of food and a high dose of meds, but… I got my first smile! And that made my heart soar.

#aisforadelaide #firstsmile #recovery #surgery #postop #incision

We left PICU around 1pm Wednesday, and Addie had some visitors, which made her quite sleepy!

#aisforadelaide #recovery #day2 #sleepingtoddler #incision

She wept a lot throughout the day, and stayed on her morphine and fluids, barely eating anything. Dave came as soon as he got out of work, which was just what she needed. Addie had woken up in a stupor around 6:15pm and screamed for him for a better part of an hour as multiple people tried to console her, including her Auntie Ashley. But then Daddy was there… and all was well in the world, again. Daddy makes everything better, with our one mishap coming when the line in her foot loosened as it was being taken out and blood went everywhere. Thankfully, it was one of those “looks worse than it is” things (and no, I won’t show you the picture).

#aisforadelaide #addieanddaddy #recovery #spinaldecompression #surgery #incision

We snuggled in for the night, and Dave tucked us both in with her gently whimpering for him. The wrap around her head was bothering her, but I was glad it was there. I wasn’t ready to see the full incision, which was only half visible from underneath a piece of gauze. When Addie rolled over a while later, screaming in pain, I buzzed the nurse, who came in and put another dose of morphine on for her. She looked at me through drowsy eyes and asked for “mama’s pillow”… the pregnancy pillow I’d brought for myself now neatly nestled her small body in it’s curve, leaving me with the hospital pillows to ease my aching body. Her body was wrapped up in barely anything, but she was running warm and we monitored her fever, which stayed low, throughout the night.

#aisforadelaide #addieanddaddy #incision #spinaldecompression Conversation with Dave

Thursday, August 14, 2014

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Thursday went well, with a PT trip to the activity room, a visit from Grandpa and Poppy (Dave’s dad and grandfather), and time spent with Namah (Dave’s mom). When the bandage was removed, she put her head in my hands to scratch- I went to town, gently rubbing her forehead and behind her ears. I could feel her body relaxing. When I first saw the incision I was taken aback. It was beautiful- her warrior badge shown upon her little head with such gusto and force. It almost took my breath away. From where I was sitting, it looked like 6 inches. There was something so unobtrusive about it… it was there, but her hair would cover much of it, and the stitches, being dissolvable, were not dark or menacing.

#aisforadelaide #day3 #recovery #spinaldecompression #surgery incision

She did great all day… most of the day, but after nap time, she was irritable and upset. She’d slept through her medication time, and because we were trying to go all by-mouth, she was unhooked from the IV. My mistake for thinking her being asleep was substitute- when she woke up she was grabbing her neck and screaming through tears. I buzzed the nurse who rushed meds in for her. As I calmed her and gave her lunch, she felt warm. We continued to monitor her fever, which stayed low into the night.

Addie had taken all of her medication by mouth the whole day, and thus we were almost a shoe-in to go home the next day! As I settled her into bed and laid down next to her, we both drifted to sleep. I felt Dave kiss us both and whisper I love you before leaving. I wanted to cry when he left… even though I was mostly asleep, I missed him at night. About 2 hours later Addie woke up screaming. We got her some more meds and she looked at me with these big pained eyes. I felt awful. Her fever was almost gone and she just wanted to go home. “You want to get out of here?” I whispered. She grabbed my face and smiled before we both tried to go back to sleep.

#aisforadelaide #recovery #PT #incision

Friday, August 15, 2014

After not sleeping much (she somehow takes over all beds), I hopped up and was dressed and ready for discharge before Dave even got to the hospital for his morning visit.

#aisforadelaide #pregnancy #34weeks #baby2 #camillethea #recovery #spinaldecompression #surgery

The pediatrician came in (I love that our pedi checks in with the hospitalized patients every day) and looked in Addie’s ears. With a diagnosis of no ear infection, we knew that muscle spasms were responsible for some of the waking and night screams. I agreed to leave the hospital with a script for a muscle relaxant… For my two year old. This idea went against every fiber of my being, but her being in pain wasn’t something I could handle. We were almost packed and ready to go when we got word that neuro was backed-up and wouldn’t be up to check Addie out for a while. With a sad goodbye, Dave made his way into work. As he left, I checked her head. She’s warm. “100.9°, mom. We’ll keep an eye on it.”

For hours, no one came. I tried to get fluids and food into her, we met with PT and played, and she rested. Slowly, with some meds, the fever lessened- and being under 101.5º, the neurologist agreed we could be discharged. If you know anything about the discharge process, it’s not quick. Paperwork to leave, scripts, instructions and signatures all need to happen before we get the approval, but when Dave came back at 6pm, we were ready. With bags, balloons and flowers in the wagon and Addie chomping at the bit to “please, I go outside now,” we made our way to the revolving door of Hasbro Children’s Hospital.

#aisforadelaide #spinaldecompression #incision #balloons #getwell

As she brushed her teeth for bed, I ran downstairs and grabbed my measuring tape. “I need to know,” I said to Dave. He knew what I meant. “Exactly 3 inches,” he said. And that was that. Our first night was OK, with bags of liquids, diazepam in pill form (yes, a pill…) and some sorbet for good measure, I left CVS. Addie took her meds with some disdain and headed to bed, waking only once and settling with a second dose of medication and some snuggles, until 7:30!

Saturday, August 16, 2014

With a morning reminiscent of most other mornings at home, Addie wanted to do something… so we headed out to the Hope Street Farmer’s Market in Providence (RI). She did great, and though I was upset about one person who sidestepped me and got in close to Dave’s shoulder checking out the back of Addie’s head, our mid-afternoon adventure was great- running into friends and enjoying some fresh air!

Addie came home and took a great nap, again waking in pain. Managing sleep times and pain management is a challenge I don’t think I will ever truly conquer. For the rest of the day she was OK, coming out of her grogginess and enjoying a trip to the grocery store for some dinner staples. But then sleep came in clips. After settling in, she woke up screaming and grabbing her head. I could see she was trying to get out of bed- not a good thing for a toddler on muscle relaxants, so Dave ran in while I went downstairs to get her meds. She settled in with him, but just an hour later was up and screaming again- at her door! I picked her up and brought her into bed, where she continued to scream through the night… unable to tell us what was wrong, Dave and I could do nothing but hold her and try to get her in a comfortable position.

Sometimes I feel helpless as a parent… this was one of those nights I felt like a total failure. Her cry left me in pain, and my inability to fix it left me in shame.

Sunday, August 17, 2014

I first saw her Sunday morning when Dave carried her into the bedroom with my coffee. My eyes half opened, I heard her squeak, “Good morning, Mommy!” My heart felt lighter… she was doing OK. Dave looked a little rough, but I knew he would be fine. Our day, as all the others since the surgery, was up and down. There was some crying and pain, but there were also moments of love and snuggles. Her love of being outside and exploring, hand holding and snuggles made their way into each corner of our day, and we’re on the mend. We’re getting there.

#aisforadelaide #addieanddaddy #spinaldecompressionsurgery #recovery #theresnoplacelikehome #snuggles #incision

With just 5 weeks to go to 40 weeks, Dave and I are laughing at the lack of sleep… Hardcore prepping for baby two, people have jested. Loving our girls and giving them all of us, is more like it. Martinkadelux- always a team.

Here’s to a beautiful week, Reader. Mondays where we choose to see the marvelous, create it for ourselves and spread it to others.

love,

WARNING:

BELOW IS A PICTURE OF HER INCISION BY THE DAY:

#Aisforadelaide #decompressionsurgery #incision

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Filed under Achondroplasia, Marvelous Monday, Parenting/Family/Lifestyle

Marvelous Monday

“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 #aisforadelaide

I’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,

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Filed under Achondroplasia, Community, Educate/Adovocate/Make Change, Parenting/Family/Lifestyle