Tag Archives: Thankful

Marvelous Monday

You may have noticed an earlier publication today HERE!

It’s a sponsored post by Hallmark and helped our family in multiple ways: one, to celebrate our marriage and two, as a sponsored post, I was paid (or will be with in 30 days unless 30 days falls on a weekend or holiday in which case I’ll be paid the next business day). But that is why I am thankful. I am blessed to have the ability to work from home.

#bethankful #aisforadelaide

As I work each day, hours in the morning, as I can throughout the afternoon, and again until about 1am- I know that the peanuts that some weeks come easier than others, are worth all the linking, liking, posting, research, photos, editing, daily chore threads, shares and other work that I put in 7 days a week to have the option to be home with Addie. I am thankful for the husband that gives me the years it takes to cultivate a blog, and the hours of time at night he spends helping me with last edits, saving every ticket, pamphlet and menu we have, offering back rubs when the clock ticks well past 2am and I have just 5 more minutes of work.

I am thankful that each week, Reader, you come back to the blog and check out what’s happening in the Martinka world.

Here’s to another Marvelous Monday and all the days that follow- may we do what we love each day, even if we don’t love it every day.

xo

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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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Surgery Day!

So here we are again… Hasbro Children’s Hospital! Addie is headed in for her second set of tubes and an adenoidectomy.  I talked to 4 different doctors yesterday, and though I am pretty much not answering my phone if I see 401-444-#### (which indicates someone from Lifespan Hospital Network calling me), I am thankful that we have such an amazing team, willing to do all the research possible to keep Addie safe and healthy.

As many have read, we’re going through a lot of diagnosing and problem-solving for Addie’s blackout episodes, which included an MRI. Sadly, we did not have full follow through of the order, and Addie will need to undergo another round of imaging so we can get a better idea of what might be happening. For this, we will head up to Boston (in a few weeks)…. for today, we just want to get through the ENT battle.

#aisforadelaide #warriorgirl #HasbroChildrensHospital

After I wrote about needing sedation (Addie is intubated as her airways are constricted), and how incredibly apprehensive that makes me (pregnancy hormones don’t help), many people chimed in. I wish that I could say their words helped, but sometimes they hurt or scared me more. When I lost my father 16 years ago I remember a lot of other people missing “the mark” of things to say- there are a thousand articles about what to say to someone who is grieving, but what about parents and caretakers who are scared? I know that nothing said truly makes anyone feel better, but there are things that have made me feel a bit worse about what’s going on and I wanted to share them with you because many parents have told me they too feel the same way–>

1. Don’t worry.
See, the thing is… I’m WAY past that.
2. It’s not a big surgery.
If my child is in surgery, it’s a big surgery to me. It’s a part of me I’ve entrusted to the Earth in a situation I cannot even try to control.
3. Been there. Done that.
While I am aware we are not reinventing the wheel here, routine surgery for one is not for another. Please, try to not one-up others.
4. I had that, and I was OK. (Or my child did)
I know lots of people with  lots of stories. I know kids that do GREAT under anesthesia. I know kids that have gone into comas from it, too. I know that when Addie wakes up she is a mess, her throat hurts, she’s raspy, she needs to be held and fights needed oxygen. I know that she gets ill, but refuses to drink or eat to help it. I know that she will be OK because we have a handpicked team, but brushing off a parent’s fear doesn’t make them feel better… or at least doesn’t work for me.
5. I know someone who died from that.
No joke. Someone told me they knew someone who had a child who died during a routine surgery- then they IM’d me their prayers. Ummmmmmm… I know things can happen, please don’t share those personal stories with me as I’m scheduling a routine surgery.
6. Try having (insert different procedure here).
This one really gets me. For some society has created a need for constant comparisons. Pissing contests. Who has it harder. I’ll tell you what, I know what hardship is. Maybe it is experience (I am still just a mom to one, and if you think back to those days, you too will remember your feelings were different then than they are now), maybe it’s age, or financial status, or location… or maybe, just maybe, it is how I feel as an individual. And it  is OK for me to feel the way I do. Maybe, someday, I will experience a similar hardship to you- but if you’re that person who feels like your life is harder, it just won’t matter… I’ll never be justified. This is, if you truly think of it, tragic for you.

And now that that’s off the table… I appreciate your kind words, your loving emails, texts, phone calls. So many are pulling for Addie to feel 100%, and for that I could not be more thankful. For those who go through major experimental surgeries, I pray for you everyday and I am thankful for the love and support offered to those families. When any family is going through unusual circumstances, the support system that surrounds them gives them the most strength. Thank you, Reader, for your strength.

lots of love,

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Filed under Achondroplasia, Community, Parenting/Family/Lifestyle

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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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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Marvelous Monday

Good morning, Reader! I hope you had a beautiful weekend!

This week I am incredibly thankful for my ever-supportive family! I “raced” a 5k on Sunday, which meant Saturday packet pick up, specific dinner wants (as if I don’t already have those… #pregnancy), and an early morning rush to the races. All of my requests were met with a smiling baby and hubby who wanted nothing more than to help. Making sure I’d eaten, was hydrated and had taken care of me (was my hair up, sunscreen on, did I get to pee…). Being the spouse of a runner isn’t easy- you’re in for an early weekend, freezing and sweltering mornings that can leave you pelted with hail or burned to the bone, you are bombarded with texts about where your loved one is (although because you don’t know the area, you don’t know what that really means unless you’ve studied the map already), you’re responsible for being home for the kids so your partner can train, meal prep (don’t get me started)… and when that runner is pregnant and not allowed to train- you’re the motivation that keeps their spirits high and tells that that walking 3.1 miles is 3.1 more miles than most people are moving that day. (And after the race? He was dragged from store to store looking for a product I could not find AND then he helped me tear down the infestation of weeds that had taken  over our yard. He’s kind of amazing… and our little partner in crime is a trooper, too.)

#aisforadelaide #gotrri #gotrri5k #martinkadelux #fitmom #fitfortwo

Without Dave’s encouragement, I’d be in quite the funk. I love being pregnant- except for the “no running” part. I want to keep my baby safe and inside, so I listen… but, like the child that lives inside us all, I want to pout about it. I lace up, pin my bib to my shirt and keep my head  up. I may not sub-30 (hell, will I even sub-40?!), but I’m out there. Us mamas gotta keep moving!

#aisforadelaide #fort #healthykids

*  *  *

I LOVE my community… have I mentioned that before? Having a child with dwarfism has brought me friendships and enlightenment I know I otherwise would not have had the opportunity to experience. So… what do I have to offer to one of the most comprehensive sites out there? It’s what I want you to know:

From the Understanding Dwarfism website

From the Understanding Dwarfism website

Please check out the refaced Understanding Dwarfism website… and for a limited time- your donation of $20 or more gets you a t-shirt (while supplies last)!

*  *  *

And here we are… I found THIS article a while ago. And I love it. I’m not a self-proclaimed feminist… but I’m a woman. And I will always believe that my genitalia does not define me, nor does my weight define me, nor does my religion, skin color, choice to have children, education define me. I’m hard to define, and I will never let one thing do so- but if you want, call me a writer, dreamer, lover. And if you ever want to tear me down for something like my clothes and ignore all of my talents, that’s your own issue with insecurity. Don’t try it. We ladies are not out there for open season. Appreciate our talents if you must, but judge us not superficially. In fact, judge no one. How about that?

Happy week, Reader!

lots of love,

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Marvelous Monday

Wow… was this weekend gorgeous, or what!? I hope everyone was able to enjoy the beautiful weather up here in RI… and that it was just as beautiful in your neck of the woods (my fondest quote from the weather man when I was a kid!). Due to the magnificent weather, my spirits were incredibly high this weekend- regardless of the fact that Dave was away two weeks ago and then didn’t come home before 7:30 at all last week. So how do I celebrate this Monday? I spread my thankfulness for all the friends I have and all of their diversity. In the past I’ve been saddened by the fact that I don’t have a close group of girlfriends. A weekend away with 5 friends, a night out dancing, a family vacation with a big group. Never. Gonna. Happen. But what I do have is my own diverse group- a family that I’ve carefully let into my life- who bring me more joy than I knew could exist between friends.

Some of my friends have shared wine bottles, some baby bottles and pumping horrors, late nights on the phone and even a night jumping on trampolines. Some friends always answer back and some take weeks to respond to an email, but always know the right thing to say. Some friends I rarely see, but I know how close we hold each other in our hearts. And… when I totally lack confidence in myself or a friend is having one of those days, as friends, we all rally.

This weekend, a few such friends truly reminded me that though there is no group, no gaggle I wish I still belonged to, there are individuals who prove they’re stronger than a group. As a simple request for a plumbing tool turned into two moms waving- both with a knowing look. Our babes are sleeping. Pregnancy prevents me from moving in this heat. Thank you. And with a few exchanged texts, I could tell another friend just needed some time alone with her family. And another? We shared some of the most bellyfull laughs about intimate life that ordinarily would make one cringe… or cry. There was no gossip, or drama, or hurt in my weekend. The women I’ve found surrounding me are strong, warrior women with little to say in the way of negative- even when their own worlds are crashing down. With smiles that literally make my heart soar, fresh perspectives I choose to learn from, and the willingness to do for others because they can. How amazing is that? For those women. For all of my friends. I am incredibly thankful.

And speaking of friends… thank you to Lisa, owner and operator or Agroterra Photography & Birth for taking some lovely belly pics of me and Miss Camille this weekend!

#aisforadelaide #belly #pregnancy #halfwaythere #21weeks

*  *  *

SO… I am very excited to announce that Understanding Dwarfism has released their new website! I am excited because there is a ton of new information from the whole community. It’s kind of amazing. I hope you check it out and take the time to share and educate more about dwarfism. Thank you for taking the time to learn more!

*  *  *

And just some random for  your week… DON’T forget to pack your sunscreen! It is getting warmer (which means more skin) and the sun is shining through those clouds. Get yourself a good SPF (we love Block Island Organics) and reapply throughout the day!

Have a wonderful week!!

xo

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Marvelous Monday

My eyes are darn near glued shut after such a crazy weekend, but it was amazing! So what am I thankful for this week? (Also ties in with dwarfism.) The word from the neurologist in Boston: NO sleep studies in the foreseeable future!

And then the whole Martinka family let out a collective sigh.

Many children (most) with achondroplasia have at least one sleep study in their life to monitor sleep apnea, or assess the risk of its development. For Addie, her first study showed both central and obstructive apneas. This meant that her brain was not operating properly while she slept- basically forgetting to kick back in and take a breath (although her oxygen saturation was still acceptable), and she also had some issues with adenoids and tonsils while she slept, blocking her breathing. I was nervous, but we went back 6 months later and ended up with a completely different story: fewer occurrences. Her doctor believed her system was maturing and she was growing into some of her features, so the decision to take tonsils and adenoids was delayed until we had one more study.

This past sleep study showed a near-normal level of sleep disruptions, except for instances of gasping. Thankfully, we will just keep an eye on the situation and report any serious differences. This is wonderful news to us, as it means no more sleep studies on the schedule, but it also means we have an answer as to why she wakes up in the middle of the night and cries and perhaps we can find ways to help her soothe back to sleep (but we really love having her come to bed… shame on us!). As I’ve stated before: knowledge is power. As a parent this is so true. The more we know about our children, the better we can diffuse a situation like disturbed sleep.

So, this last sleep study threw me for a loop. The drive was uneventful as usual, with our arrival time coinciding with Addie’s usual dinner time. So we ate, sitting in a chair together. It was a fine dinner… but Addie was suspicious the whole time. When a tech walked into the room, I lit up! The same angel who made our last sleep study a dream was standing before me. But what was she saying? …that she was working the NICU that night. Blessed babies down there, for sure. The tech we had was fine, but not wonderful, and really needed to give Addie a bit more bedside manner while attaching the leads- she was freaked out- to say the least!

*TIP* I dressed and took out my contacts before Addie was hooked up so that I could have all the light and make all the noise I needed to. I plugged in my charger, made sure my water was in a reachable place and put my snack out (but hidden from Addie) so that everything I needed was out of a zipped bag.

#aisforadelaide #stagesofasleepstudy

Once my little mama was all linked up, she cried and gagged so hard I thought she would vomit, and she begged to be snuggled. I cradled her in my arms with her chest heaving against my own and her tears soaking my shoulder. When the tech suggested placing the cannula in her nose while she was awake, I literally scoffed. There was just no way in hell those two sensors were getting near her face. As I gently laid her down, the tech said he would be back soon to try and hook it up.

Every half hour from 11pm to 3am someone came into the room… even our favorite tech came up from NICU to try and attach the cannula that seemed to be eluding everyone else. Finally, it was in- and the sensor below was there, too! My sweet lady went on dreaming for a couple more hours before someone came in (a different tech) to rouse her and let us go. When the tech came in, I hopped up and got dressed myself- the lights were up super bright without warning, so I wanted to be ready for Addie to get up, too. *TIP* I had worn the same shirt to bed and just threw on my jeans, a cardigan, slip on shoes and glasses. I brushed my teeth and tightened my ponytail and was ready for the day… or the drive home to shower. This 3 minute routine made me available to Addie immediately- throwing everything in my bag and ready to be there for whatever my girl needed.

I was, to be honest, disappointed in Boston Children’s this visit- and I filled out my review as such. The tech who came to unhook Addie told me they had no hats (which is not true, we have always been given a hat) and literally woke her by rolling her over, not-so-gently, which terrified her. I picked up my screaming toddler and again, wrapped her up in my arms and let her cry. She was so startled she was near shaking. I asked if we would sponge her off, and the tech said no, just a bath when you get home. I wanted to cry, myself. I quickly dressed Addie in the comfy clothes I’d brought for her and huddled her close.

As we left, me smiling through gritted teeth, Addie kissed my nose and plopped her head down on my shoulder. We took a selfie I would like to title Getting the Heck Out!

#aisforadelaide #sleepstudy #selfie

 

*TIP* Get your parking validated the night before your stay! We were leaving before the front desk was fully staffed, and had to go back to the Emergency Room entrance for parking validation- I wish the woman who checked us in had reminded me the night before, but it was what it was. We headed home where our requested breakfast of “brefast bamitos” (breakfast burritos) were being prepared by Dave.

So… without a sponge bath and hair all a mess, how did we move on? Here’s how to get your day back:
1. Take off the stickies with rubbing alcohol on a cotton pad. Remember the leads on the legs, neck, face, belly and ribs all leave residue.
2. Run a warm bath with Aveeno Soothing Oatmeal bath… it’s perfect to rehydrate the skin and relax after the night.
3. Soak the scalp with MediTech No-Rinse Shampoo & Body Cleanser With Aloe Vera Gel. I was given a bottle from my favorite tech after the last sleep study we had. It’s usually used on bedridden patients- so most hospitals will have something similar. Working it in, the hair will soften and the glue will loosen.
4. In the bath rinse hair, then shampoo (massage hair a bit longer than usual) and condition (we used Ology, which I swear by!).

After your bath, take a nap, enjoy some snuggles and when you wake up- the memory of leads and hospital stays will be long gone!

An LP child certainly has an interesting life with so much being the same and some not so much, as other children. It takes a strong child and parent team to get through those studies, but even the bad ones don’t have to stay that way. Advocating for what your child needs (to nurse, to be held, to not have a cannula while awake, etc.) can make it a better experience… that, and a nice warm bath afterwards!

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And finally my random tidbit… I am still on some kind of high from this weekend’s Listen to Your Mother in Providence. I never imagined an experience like this, a sisterhood forged so quickly and with such a bonding power, as I experienced. There is so much I want to say, but no way to calm my thoughts and get it all out yet. I just wanted to thank everyone who was able to come and all the well wishes! I think it was a fabulous cast- and am so proud to have been a part of it! What a whirlwind Mother’s Day… hope your’s was a blast!

#aisforadelaide #listentoyourmother #2014cast #sisterhood

Have a wonderful week, Reader!!!

XO

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Filed under Achondroplasia, Parenting/Family/Lifestyle