Tag Archives: Marvelous Monday

Marvelous Monday

This week is post-op follow up! I am excited for a marvelous Monday… and Tuesday (where we will be back in dance) and Wednesday (where we’ll be back in Rock-a-Baby), and Thursday (which is our appointment) and Friday (when we’ll get a chance to sit and relax and go to a big family event!). It’s been a roller coaster of a summer and now that we’re on the mend, I wanted to celebrate a little bit! We’re so thankful to have some celebration, after all!

#aisforadelaide Marvelous Monday #farmersmarket #weekend #endofsummer

BIG strides happened last week! and I wanted to recap it all as we embark upon another week, sure to show more improvement!
ONE: Addie was off ALL pain medications starting mid-week, and aside from some of the expected soreness and some itchiness, she is doing great!
TWO: We also got pushed out of speech therapy! Addie has been in it because of her ear tubes (we only had sessions once every 6-8 weeks), and we finally had our follow up to tube surgery with our therapist and she and I both agreed that we were done. Addie has wonderful speech, is using inclusive words (“Come with me, mommy. Daddy you come, too.”), is understanding the difference between different but similar emotions, and all-around just doesn’t need speech anymore. We discussed how when Addie’s tubes fall out she may have periods where she will stop doing things (she stopped singing when her ears filled with fluid these past few months), but that it will come back and the sooner we take care of it, the better.
THREE: We also talked about how we would transition her out of Early Intervention. A LOT to think about, but it gave us a great end to the last week- and a wonderful start to our marvelous Monday!!!

I am excited that we’ve come such a long way from where we were 2 weeks ago… and that we were able to enjoy our weekend together- with matching nails, almost finishing Millie’s room, sibling class and going to the farmers market. It was a full weekend, but certainly a wonderful way to start the close out of our summer.

#aisforadelaide #jamberry #julep #nailart Marvelous Monday

Addie went to her sibling class on Saturday, and while it was more for fun, I loved watching her carry around a giant, heavy baby doll, learn to change a diaper and read a book with Dave about becoming a big sister (one she’d read before from the library!). It was a lot of fun.

#aisforadelaide Marvelous Monday #siblingclass

With Addie enjoying a gumbo full of okra on Saturday night, we’re onto cooking leeks and purple potatoes this week… we will surely miss the market when it closes, but will take every advantage of trying all the local fresh fruits and veggies until then!

#aisforadelaide #famersmarket Marvelous Monday #veggies

With an amazing week ahead of us, we’re wishing you a Marvelous Monday and week, Reader!

lots of love,

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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

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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Marvelous Monday

It was Hell. The week (plus) of recovery that was supposed to be “a few days”.

I wish that was an exaggeration, but as far as common procedures go, tubes and adenoids tops the list. For Addie, there was the consideration of her spinal compression, so we stayed one night for observation where she turned up roses. The kid was a peach.

Then Wednesday struck.

Let’s start with admission…

She was great! We played and I wore a hairnet over my hat and looked really cool. (I was annoyed by one of the nurses who kept reading her name as “Adeline”- not a great way to instill confidence in a parent- but other than that it was OK.

#aisforadelaide #smilethoughyourheartisbreaking #hospital #surgery

I wrote about the surgery before… it was fine. A-OK. And then we made it to recovery… where she was upset and groggy and didn’t really want to come out of it until we’d been wheeled to her room for our stay.

This made for a late night-  so it was nice that Dave came to the hospital and stayed with us until after midnight when she finally nodded off. We’d all eaten some Boston Market (my pregnancy fave!) and watched some movies and I was feeling relieved that, besides some pain, Addie seemed to be bouncing back quickly!

#aisforadelaide #recovery #surgery #hasbro

The next morning was still uneventful as a few of our doctors were at the hospital that morning- the pediatrician, neurosurgeon and ENT- we got a few visitors and I grabbed myself a coffee from the cart before being handed discharge papers, a bottle of ear drops and heading towards the elevators. Good-bye 5th floor!

#aisforadelaide #readytogohome #recovery #adenoidectomy

Addie still seemed great, if a bit groggy, but I expected nothing less, so we headed home. After her bath she asked to sleep, so I tucked her in bed next to me and while I worked on the laptop, she napped. It was a loud nap- her snoring was rattling my brain and she cried in her slumber. When she woke up I offered her something to eat to no avail and gave her some Motrin, as per doctor’s orders. The night got progressively lethargic as she didn’t eat much dinner and was fussy to sleep.

It was well after midnight and I’d just finished working for the night when I saw her pop up on the monitor. She shot straight up and started to cry. Something is wrong, I felt it in my bones. I ran in, Dave and I practically knocking each other over to get to her and as he shut off her air conditioning, I brought her into our room. I could feel her warmth, and as I made a request for the thermometer I felt the hot, wet slip down my back. Sweet potatoes. The ones I’d made for dinner. They’d reappeared for us onto the bed, so I stripped us both and went to wash up while Dave helped and switched the bedding.

I called the emergency line for the ENT. The doctor told me to keep her hydrated and medicated to keep the fever down and call in the morning. The fever didn’t break for days. Food was nothing Addie desired- not even popsicles or pudding. I could see her ribs. And she cried through every night, even with the ibuprofen and acetaminophen regimen we had. I felt lost. When she finally was feeling better enough to get out of bed, I saw that her head was tilted slightly forward and she wouldn’t move it up. We went for a trip out of the house- the first in days- and she’d found a way to maneuver herself so that her head wouldn’t move. While I was impressed with her resourcefulness, I was scared, too. Why was her fever still there, and the crying in her sleep and now she wouldn’t move her head…?

We went to the pediatrician. We called the ENT. We conferred with the end result exactly as I’d thought: Addie was having an extremely rare, albeit not unknown reaction to adenoid removal.

#aisforadelaide #adenoiectomy #rarereaction #surgery #recovery

But now we are here. With the help of serious antibiotics, a lot of time in bed, and fluids, and after 11 days, Addie was on the mend and closer to being herself! I am thankful for recovery… and life lessons. Many times I thought I knew what an outcome would be, and many times I’ve been wrong. In this case, I knew that Addie would be OK, I just expected it quicker. She’s my warrior and I realize that the time it took for her to heal is that what makes her so- it’s the fact that she did it with such  courage. While I felt a breaking inside, she never did. Every time I asked her if she was OK, she would take my face between her hands and kiss me. She never answered. I don’t think she wanted to tell me, “no,” no matter how bad it hurt.

How could I not be thankful for this blessing… A child who looks out for her mother.

As we embark on this week with an MRI and the final decision as to whether Addie will have spinal decompression surgery, I open my mind to being stronger and more supportive of whatever is thrown at me- because this isn’t about me, this is about Addie and she deserves that much in a mom.

#aisforadelaide #perfection #recovery #surgery #adenoids

Your love and prayers are, as always, appreciated.
Have a beautiful week, Reader.

love,

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

Marvelous Monday

So much to say about what’s been going on, but I keep reflecting on our wonderful experience in California.

If you followed my social media pages, you may have noticed #lpaSD2014 making it’s way around with pictures, quotes, and events… all leading to the LPA National Conference in San Diego. It was amazing.

It is also something that we could not have participated in without the help and support of our parents and my aunt and uncle. Both my parents and Dave’s helped us get there (via flyer miles, rewards, food, and accommodations). I am also extremely grateful for my dearest, who works his tail off at work and then each weekend doing repairs to save up for the cost of eating away from home (yes, a BLT in San Diego is $10!). But it is more than the money. It’s the understanding. My mother-in-law was initially going to come with us (she will be attending workshops with us in Boston in 2017!), but decided that it was just too much for her… however, she still supported us going, which means the world to our family. San Diego is an awesome vacation spot, but the conference, the LPA organization and the knowledge and friendships we gain each year are invaluable to us.

#Aisforadelaide #lpaSD2014 #family #friends #dwarfism

Addie was blessed this year with a gift from a family who lost their child to a rare(r) form of dwarfism with a Lifetime Membership to Little People of America, and we could not be more thankful. Knowing  that Addie will always have access to the best advocacy, community and medical advice, even after Dave and I are not here to guide her, eases my heart. There are so many lesser known facets to the LPA organization that I hope she explores- including scholarships and a deep-rooted community- that having this membership offers her access to all this and so much more- forever! #aisforadelaide #lpaSD2014 #LPANationalConference #SanDiego

With that, the opportunity to go to as many regional (local) and national events as we can gives us all opportunity to learn, play, educate and be educated. Last year, I was a part of a panel that focused on social media and how we present ourselves as a community, and this year I spoke about why I keep pushing (advocating) for more education and awareness. Dave got to learn about different home adaptations and how he can make our house more comfortable for Addie without making it difficult for us. Even the grandparents got to go to some workshops and learn a bit more about what it’s like to grow up as someone with dwarfism, the things they can help Addie with, and just take part in the community.

#aisforadelaide #lpaSD2014 #expo #travel #sandiego

All-in-all… this was an amazing experience. Made that much better by our trip a few hours north to see my Aunt Donna and Uncle Ted. While I am forever grateful to the LPA and being able to experience national events, being able to see my Uncle Ted meant more to me than I can express. My Mom did not find her brother until she was in her 20′s. Adopted at birth, she was able to reconnect years later with a lot of research… and I am so glad she did. My Uncle is amazing- traveling to see us a lot in my youth- and coming to stay with us for much longer than he anticipated, when my Dad passed. We often joke in my family that I was a wild child, but that didn’t really happen until my Dad died. My Uncle saw firsthand how out of control I became and how quickly I down-spiraled. But still, he stayed. Day after day he supported my Mom and did everything he could to help with the daily running of the house, and the big things that my Dad had been too sick to do in his last months of life. Going out to see him, hug him, talk to him and see the spark in his eye was more than I could ask for.

#aisforadelaide #lpasd2014 #family #vacation #travel

He’s sick. I hate that. I hate seeing a man who has rocked the world, serving our country, playing a major role in aerospace development, advancing the programs that offer guide and service dogs to those who need, and most of all being an amazing family man- he’s diminishing in body… but never spirit. I was afraid he would be fragile and was instead surprised to see him, stout as ever, never batting an eye when he needed oxygen or apologizing for needing a break. Quite simply, as Ted has always been, he just is. Maybe that’s where I get my no apologies life-view from… I am who I am, be damned if it upsets you or makes you uncomfortable. And my Aunt Donna, his rock, she’s kind of amazing, too. Her love, support and drive are inspiring. A teacher for years, she set Addie up with all the fun stuff while accepting oxygen deliveries, getting towels for Addie and I to swim, her beaming smile never fading.

#aisforadelaide #family #LPAsd2014 #sandiego #losangeles #travel

There are some days that are really hard. For everyone. I have a family who has taught me, and continues to do so, that there are way more rainbows than rain if we look for them. I am thankful that we got to Cali this summer… for the sun, sand, friendships, education, family.

Have you done a big summer vacation this year? What was your favorite part?

Happy Marvelous Monday, Reader! I hope you have a beautiful week!

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Filed under Community, Marvelous Monday, Travel

Marvelous Monday

And so… we are back. Many times I spent my Marvelous Mondays writing about what I am thankful for as friends or my surroundings, but today, I want to be thankful for opportunity. We don’t go on date nights, or celebrate with fancy dinners or outings, most of the time the idea of vacation seems intimidating and daunting for the sheer cost factor, but we are never short on opportunity.

Much thanks to our parents, who help us do the big things in life. We’d love to cruise the Bahamas, take a trip to Disney, see the Eiffel Tower… but more than that, we want to learn and support this amazing community around us- the reason I even began this blog… we want to be active members of the LPA as fully as we can be!

Last week, we took full advantage of our membership and joined hundreds of others in San Diego.

#aisforadelaide #marvelousmonday #lpaSD2014

I spent hours in workshops, gatherings, meetings and group events… to learn, to think, to take notes, to listen, to share, to dream, to wonder, to play! Addie participated in her first fashion show! I met SO many wonderful people I’d only ever spoken to online. Dave got to SIT DOWN! I spoke… in front of way more of a crowd than I was expecting, and though it was not recorded (to my knowledge), I will share the piece with you soon. We made friends family.

So, what is there to not be thankful for in life? I’m not thankful that Addie will have to undergo another MRI for more imaging. I’m not thankful that we still don’t know why she’s blacking out. I’m not thankful that there are so many questions and so few answers… in general. But who is counting? What this means is that there is more to see, more to know and more to learn. Advocating for our community, for our family and for Addie herself is never done. So let’s start this week in thanks… and get ready to work hard once again!

Happy Marvelous Monday, Reader!

love,

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Marvelous Monday

Last Monday was not my ideal day, but I woke up- and that, in and of itself, made it marvelous.

After we got news that Addie’s MRI wasn’t crystal clear, my heart sank, heavy in my chest. Friends reached out- sending love, prayers and hugs. I am still feeling those- thankful that so many who love our sweet lady and are standing behind her, no matter what the outcome. And then, there was an article.

My best friend was in a fit of worry. I could tell, as she’d called me about 4 times and sent some texts- everything from asking if I was OK to pictures and memes trying to get my mind off the news. And then she sent me an article, THIS article and I read it through tears of knowing, because all those late nights and stressful times that have come, I’ve never felt a moment of anything but thanks. This line resonated with me, heaving a sigh through my body as though I was reading something written about me from a total stranger: “You will never regret the sacrifices you make for them now.”

I know it is hard, this thing we refer to as parenting, but more than that? It’s rewarding. I’ve partied… a lot. I’ve celebrated, had girls’ night, gone on dates. And now, my nights are home. My friendships often get nourished through Skype chats and play dates of chasing babies. Some friends have come and some have gone.

But I have the love of my life and the sweet baby (almost babies!) we’ve made… and I have this.

Bath Time

A small body laid curled over my leg.

Yotion, she asked. The L adorably replaced.

How could I resist her plea?

I started with her neck.
Parting her hair to the side- her golden curls still wet from the water, leaving marks on my shorts.

I moved down her back, as she swirled her body around.
Her belly rubbing my skin below, her feet meeting below the bowing of her legs.

She was round where God intended.
Her perfect limbs curled in just that way.
With small fingers tucked neatly under her chin.

I massaged her soft skin,
between each roll and over every muscle.
Watching her eyelids grow heavy as she drifted to sleep.
Repeating the same songs my own mother sang to me as a child.

These are the moments in between all the other moments that I remember best.
Long summer days filled with gardens and sprinklers.
Bug catchers and pinwheels.
Laughter that the neighbors stop to enjoy.
A bath that leaves a ring of dirt- the telltale sign of a good day-
and the minutes that follow.

Just me and her.
Lying together under the fan.
A mother and child.

Love redefined in memories that are mine to remember.

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Marvelous Monday

Ahhh… Monday. I’ve actually been dreading this Monday, afraid of it- if you will.

Today Addie heads to Hasbro Children’s Hospital for her MRI.

A lot of readers have asked me why I do not write about dwarfism more, and the simple answer is: because that is not all there is in our lives. Neither Adelaide, nor the Martinka family are defined by the attributes of achondroplasia, and as such, I refuse to let my writing (and my mind) be consumed by the diagnosis. On the plus side, there is a lot of information here- as well as in the blog roll- which I encourage readers to check out! All charts are updated and a great accompaniment to your regular pediatrician’s repertoire of monitoring your child, and there are different categories for other information, including one specifically about achondroplasia. If you’re looking for something specific, try the search box!

But, I find myself here. Wanting to embrace the week, but fearing its start. Addie is due for an MRI at 1pm. This means the usual things for children of such an age getting an MRI- no food for 6 hours, sedation… oh yeah. Sedation. Due to the complications involved with achondroplasia, namely the compression that is apparent in all patients (the severity is what differs), Addie has a special team and guidelines to her being under. I am thankful that we have such an awesome team behind us, but I am always fearing the unknown- especially when her previous experience with anesthesia was not good. CONSIDERATIONS FOR ANESTHESIA DOCUMENT.

As I’ve mentioned before, I want to share information on this blog, but I do not want to delve into all of Adelaide’s medical history. It’s entirety to share is her choice… but I do want to educate. So, I will share what’s been happening these past few months.

Addie has fallen a total of 6 times, and been unable to catch herself. Each time she has fallen (backwards), she’s landed squarely on the back of her head… after which her eyes roll, she goes limp and doesn’t breathe for a time of 5 to 10 seconds. After these episodes, she’s bounced back pretty well that day, with no walking or pupillary issues. But… she’s blacking out. Cold. Six times. This has more than a few of her doctors worried, and before she goes under for another set of tubes and adenoid removal, we need to confirm there isn’t a deeper issue.

Thus, an MRI.

This Monday, I ask for your good thoughts, prayers, and virtual hugs… because while I know Addie is strong enough to handle anything, I’m not sure I am.

To all the mamas and papas before me who have battled more than I could imagine, you give me strength. Thank you for your love and support- through the major, the minor, and everything in between.

flourish

But… you didn’t think I would leave you there, did you?! It’s Monday! Marvelous Monday! There is too much to celebrate in life, and this week I am more than thankful for the love and support I have, but also the opportunities. My hubby is amazing, and his hard work has afforded me the opportunity to grow as a writer and mother… and athlete. I was recently accepted into the Fit For Two Ambassadors program- which I practically begged for (really), and just in time for their awesome Instagram campaign- beginning today!

For Two Fitness is a favorite of mine for so many reasons, including the company’s commitment to moms. Whether you’re a runner, cyclist, yogi, dancer, lifter, casual gym visitor, total gym rat… or just get into the groove when you can, the products offered will give you confidence and comfort in all of your workouts. The tops are made to move with you and your babe and the bottoms to cover everything, but give you movement… both pre and post baby. I love that the company is family-owned and operated- and think all new mamas deserve the love they have for their customers. So… what was all that about a giveaway?

From today until Friday, when you post the image below on Instagram with the hashtag #fortwofitnessgift and mention @fortwofitness you’re entered to be the one lucky Instagrammer who will win a $100 gift card to For Two Fitness – the very best in maternity activewear! Bonus points if you share what your For Two fave product is… mine? Training for Two racerback tank… a must for ALL activities! Check out my IG profile @martinkadeluxe and capture the image there, too!

Don’t forget to enter yourself in this awesome contest- there are products for mamas-to-be and new mamas- and even a few pieces for in between moments! Good luck, Reader!

I hope you have a beautiful week… starting with this Marvelous Monday we have all been blessed to have!

xo

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Filed under Achondroplasia, Fitness, Marvelous Monday

Marvelous Monday

Another Monday! A fresh week ahead… and a little reflection behind.

A friend of mine recently posted a bit about herself using the alphabet as her guide. Sometimes there are silly things that we forget about ourselves. Serious parts of us that we bury deep inside. How do we, as the career-defined society of bloggers, achieve our over-sharing? By doing just that!

So… here’s a bit about me that you may not know. Please- write your own and share more about you, too!

Chelley’s Alphabet Soup:

A. Age: 29
B. Band of choice: Pearl Jam
C. Cheese: Goat
D. Dogs: A Catahoula who is also part human and part lab, named Carter. He is the first child Dave and I “had” together, and he’s taught us a lot about love. Carter is also the one grandkid my father-in-law might let move in.
E. Exercise: Running, yoga, toddler chasing.
F. Fear: That I’ll never publish a book. A real paperback book.
G. Greatest achievement: Overcoming my fear of “no” and finally just saying “yes!”
H. Height: 5’8″
I. Ingredient I live for: Garlic… turmeric… truffle oil… meat. Mmmmm. I miss being in the kitchen more often.
J. Job title: Executive director of the house, project coordinator for a toddler, baby baker, blogger, editor, cook, flirt, photography assistant, volunteer.
K. Kids: The  dog, the toddler, and the bun. Each step feels like my plate is full… so I get a bigger plate and create a better dish of goodies. All the personalities, activity and chaos amazes me. I cannot wait for baby 2 to add to the fun!
L. Love: Oh my… do I love love. In a past life I spent my youth gallivanting through Italy with different older men and my old age in the French countryside courting men far too young for me… all while enjoying fine wines. For now, one of my favorite things is the view of my sweet hubby when he walks away- I’ve known him for 12 years and he just gets better with age… like a fine wine.
M. Mother’s name: Susan… her middle name is Eileen, which is why it is Addie’s too!
N. Nicknames: Did you know my nickname is Chelley?
O. One…: I used to think was the loneliest number. Now it’s cool when that’s the only number of people in the bathroom at a time!
P. Poem: I recently shocked myself by writing something that wasn’t depressing and that I actually love to read and reread.

#aisforadelaide #memories


Q. Quote from a movie: I think I’d miss you even if we never met – “The Wedding Date”. True story. I love that line.
R. Running dream: Complete a full marathon. After every half I’ve done (three so far), I swear I will register for a full and I never do. I will. I must.
S. Siblings: We are Worth Strong. If you know us, you know what that means.
T:  Tattoos: I have a few, and I will have some more!
U. Underdog moment: I am the underdog in life. Sounds depressing, but it’s really just the position I’m sure I put myself in (daughter of a psychologist gives herself an analysis during A-B-C Blog Post 101). I think that we all have our moments, and just making it to 11pm with a smile is pretty damn big!
V. Vegetable: If it is a veggie, I will eat it… and I will try to convince you of all the ways that you can prepare it so that you will like it, too.
W. What makes you run late: Being related to my mother and marrying my husband are scientific reasons why I will be late to everything including my own funeral.
X. (e)X-files: I’ve had some good ones and some bad ones, but they all taught me valuable lessons (and yes, I said all of them).
Y. Yummy food that you make: My apple crisp will win you over.
Z. Zoo animal: I’m intrigued by zebras…

Your turn!

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Marvelous Monday

It’s been over a year with the thankful dwarfism random format… and after tonight, I think to myself life is too damn marvelous to share it. So every Monday will be just about how marvelous this crazy thing is blessed to us for whatever length of time we get… Life. However that comes out- Life is too awesome to have constrictions on how we celebrate each marvelous week!

Memories

We drove all day.
This family of mine.
We crossed borders, walked parking lots, filled tanks and bellies and hearts with memories.

We succumbed to the life we’ve grown to love as we stepped inside our house.
Our home.
We stripped down to the skin we only bare to each other.
Sandals strewn across the hall floor,
clothes in a sweaty pile waiting to be washed.

The youngest naked with hand-sewn flowers covering her head…
Her small body- perfection in each movement.
Each curve and roll.

His muscular legs carrying his tired body,
remarkably chiseled from beneath his boxer briefs.
A reminder of his youth-
His bike.
Before us.

My belly,
full of movement one can feel and now see.
A reminder  of youth soon to be born.
What will be.
What is us.

We climbed into the small bed as I recited a book from my own childhood.
Her body arched back as only a toddler would find comfortable.
Her small arms wrapped around my neck,
her chest pushed into my face.
The salt and heat from her skin startle me.
The smell of dirt and sweat is somehow sweet against my nose.

I feel her grip loosen as she falls asleep.

 

We traveled many miles.
We filled tanks and bellies and hearts with memories.

Memories.

June Fete 2014 #AISFORADELAIDE #motherslove

Have a beautiful week, Reader.

 

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