Tag Archives: achondroplastic

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

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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Walking San Diego #travel

#lpaS2014 was such a great and informative time… but it was also a time we took to do some sightseeing! We had a lot of fun walking around San Diego, but there were some real highlights! I would post another 3,000 word post… only that wouldn’t be very fun for anyone. So here are some of the must-sees… and a friendly reminder that not everything has to be planned! One of the great things about San Diego (and travel in general) is that you can just explore!

I made the specific request to go to The Greatest Generation walk. To get there, we took a beautiful jaunt from the hotel (with Miss A in the stroller), and enjoyed one of my favorite things in the world… HISTORY! We would have loved to board the USS Midway, but it made more sense for us to see it from afar and get more city walking in! The area is just beautiful!

#aisforadelaide #thegreatestgeneration San Diego #travel

#aisforadelaide #USSmidway #GreatestGeneration San Diego #travel

Ralph’s Market… Just wanted to throw this in here. This market is awesome- from offerings to prices! I seriously never would have guessed that it’s a chain! There is a place to eat outdoors, a vast beer and wine selection, and lots of organic finds. Seriously… I’ve never actually loved a grocery store, but we actually talked about how this would be our place to shop if we lived in San Diego!

#aisforadelaide #RalphsMarket #Kroger #travel San Diego

The Gaslamp Quarter, Seaport Village and just spending time walking along the water and enjoying the many city parks was amazing. San Diego is unique in its city planning, with everything from street lights to water conservation thought about and done in a beautiful way. There were lots of small pockets of grass or random climbing places for Addie to take a break and run in, and because the sidewalks are often way bigger and separated from the road by some sort of gardens, I always felt safe letting her play.

#aisforadelaide #MLK #MartinLutheKing San Diego #travel

#aisforadelaide #travel San Diego #walking #tourist

#aisforadelaide #dole #citylife San Diego #travel

And… just to geek out a bit: The Hall of Justice!

#aisforadelaide #travel Hall of Justice San Diego

Where are your favorite spots in San Diego?

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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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Hospital Bag for Mama and Baby-to-Be!

This is what I’m bringing in my hospital bag! I am excited to welcome Millie (yesterday I was 35 weeks!)… and I cannot believe how fast it’s going. I decided to pack a few weeks early so I would be ready to go! (Not seen, but packed: My Birth Preferences, BFing chart- which you can find in Friday’s post, as well as a list of numbers and names that are important- doula, OB, pediatrician, insurance company, newborn photographer, church, and, of course, Mom!)

Roll over each image to learn more:

 

 

 

I was not paid for this post… I just love these goodies! (I did receive a headband from Bzzyfingers… and I cannot wait to buy some more for my sweet girls to match!)

61 Comments

August 20, 2014 · 7:00 am

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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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