Tag Archives: different

Every Six Months…

We made it to Delaware… with minimal traffic- which always makes me happy! Being in the company of doctors who are so confident and can answer questions that I forgot I had, or that I never even thought of always calms my mind.

When we got into the room with Dr. Bober, we sat down and Addie started playing. We talked a lot about where she was developmentally, her walking, her sleep- the usual. We then talked about her ears- which are at the top of my worry list. With her tubes coming out and her infection, we came to the conclusion that she will, most likely, end of with another set. Also, interestingly enough, we discussed the idea that her adenoids could also come out. Our ENT, locally in Rhode Island, spoke about a 50% chance that if we remove the adenoids with another set of tubes that a recurrence of tubes would be unnecessary. Dr. Bober assured me that this number is not reflective of children with achondroplasia.

A new lesson in life.

So… we will check her ears in a few weeks, see if there is fluid in there, and then take it from there. Should fluid still be in there, we will check for swollen adenoids. Fluid, tubes. Fluid and swollen adenoids, tubes and adenoids. Plan of action- simple! Of course there are a million steps in between, but to have a start and an end point makes the middle ground a bit easier to navigate.

So we are moving out of the worry of hydrocephalus, as her soft spot is closed and she has no signs, as well as the concern for central apnea (which seemed to disappear after 6 months) and kyphosis because Miss A is up and walking… and her x-rays looked amazing! Hearing that her spine looks great is nothing short of wonderful news!

And what are we looking at now? The bowing in her legs, which is something Dr. Mackenzie really keeps an eye on. Obstructive apnea and being aware of the signs, such as snoring and bad sleep patterns. And we also have to be more conscious of ear infections, especially because Addie’s tubes fell out already… but we already talked about that! :)

Some interesting facts for expecting mamas:
We have a 2-3% chance of having another child with achondroplasia.
A Level 2 ultrasound after 30 weeks will give us answers if there are size concerns.
We could still have a child with dwarfism without knowing (just like with Addie!).
Bonus?
We aren’t concerned. Knowing what we know now, we are thrilled to be welcoming another baby into our family!

… and then Dr. Mackenzie. After we ended up doing acrobatic acts on the floor:

#aisforadelaide #babyyoga

#aisforadelaide #yoga #downwardfacingdog

Colleen and Mac came in to examine my sweet yoga girl. After a few looks at her, we took to the halls of DuPont for some walking action. Make that running! Knowing that she’s been falling sideways a lot, I was worried about her legs and knees… but thankfully her legs are just the way they are (for now). We are having x-rays done to make sure her legs are going in the right direction and, as usual, monitor if she has any pain or increased falling.  Addie does have the typical hyper-extension in her knees, but she also has hyper-mobility that causes her knees to arc sideways, which could be adding to her falls (but not bad per se).

As expected, we will be going back in 6 months (really 7) for her next set of appointments and are excited for what lies ahead. The best part of going to DuPont are the answers, the new knowledge and knowing that the next time we see these specialists we will have a whole new world opened to us. Given that we see the doctors every 6 months we are never given too much information that we worry for months to come, but we always leave with things to think about.

… we hope we can work with our insurance going forward and are looking to generate more information about United’s vendetta against major medical providers and bringing them back to Nemours! (Hello high hopes!)

Until then, We hope you had a wonderful Sibling Day… Addie loved giving her soon-to-be baby sibling a kiss while we were on a beautiful family walk:

#aisforadelaide #siblingday2014

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Adelaide has achondroplasia

Adelaide was born after a lengthy labor on April 17, 2012. She was perfect. Beaming up through eyes that spoke of wonder. We swaddled her and held on for hours. It felt like we could not sleep. She was too much to let go of- her small body (18″) was a ball of cuddles that we’d waited almost 39 weeks to hold.

As the weeks passed, I noticed she didn’t look like the other babies in my new moms group. She was… rounder. She was happy, and a great sleeper, but she wasn’t the same as the other babies and I couldn’t put my finger on it. Each morning as I dressed her, I saw that her clothes fit oddly, and her head struggled to fit in her onesies.

Her head is big, I remember saying to her pediatrician’s nurse as she took measurements at her two month appointment. Addie was 9 weeks… and the ball had suddenly been put in motion.

When the doctor came into the room to examine Addie, she took two looks at the measurements and whipped out her own tape measure. She looked Addie over, asked me some questions, and cooed at her tiny patient.

What was happening? I wasn’t sure. But my stomach was in my throat,

You’re right, she confirmed about Addie’s head. It was bigger, but she was also measuring a bit small. To be safe, the pediatrician ordered an ultrasound of her head and x-rays of Addie’s long bones (arms and legs) to make sure everything was working as they should be, to be performed the following Monday, but we didn’t make it that far. A few hot days later with a lethargic infant and incessant fever, Addie was admitted to our local children’s hospital. An emergency CT of her head was performed to make sure there was no abnormal fluid in her head- this called for multiple spinal taps to be attempted unsuccessfully (and without anesthesia of any kind) to check for meningitis. Due to her high level of dehydration, the tests were lacking enough fluid, and we were left to give her broad spectrum antibiotics.

Panicked, I called my mom (250 miles away) who hopped in her car and started the drive up.

Because the tests were already on the table, while admitted, Addie got her x-rays and ultrasound done. After hearing that her head and brain were fine and there were no signs of hydrocephalus, we were wheeled back to her room to wait. I tried to sleep, to read, to do something, but I was stuck in a whirlwind of what-ifs.

I’d read it all… so when a woman came in who introduced herself as a geneticist, I knew we were looking at something serious. I listened to her introduce herself and say that she just wanted to stop by and check in on us. She was asked to look at Addie’s x-rays… I stopped listening, but then  she stood up, shook our hands and left.

Photo: Dimery Photography

Photo: Dimery Photography

I tried to nurse Addie, who was still having trouble eating, so I resorted to the pump. As I stood at the hospital room sink, burning my hands in the water, I looked up in the mirror to see the geneticist walk back in. I stayed there, forgoing the pain of the water for a minute. The look on her face was a nervous smile, not that of a confident woman. I sat down. I was prepared… but numb. The woman in front of me talked about the x-rays, the best doctors in Rhode Island, thorough examination…

Adelaide has Achondroplasia.

My husband asked what that was, but before he could finish his questions, I blankly said dwarfism.

I cried. A lot. I didn’t know enough about what was happening. Was this why she was sick? Would she be ok?

As it turned out, her dehydration was unrelated. She wasn’t great at latching, the summer was hot, and she had spiked a fever. That was why she was sick. Dwarfism was not an issue here.

In fact, here we are 2 years later, and dwarfism isn’t an issue anywhere. Some things are different- that’s for sure. Addie is a pro at staying still for x-rays, falling asleep with things attached to her head and body (sleep study), she can travel hundreds of miles by car without much issue to get to and from her geneticist in Delaware, and she’s encouraged to climb objects to get what she needs (where as other kids are told not to!).

When I think back to those days in the hospital, the fear and the unknowns, they scare me- how could I know so little about my own child? But they also serve as a reminder that what is different is not bad- difference is something to be celebrated and advocated. Our lives are different from most, of course… but it’s an amazing life. And that’s what means the most.

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Because Normal isn’t What You Think…

My life is different from your life. It’s got nothing to do with you, your child or your relationship status. Actually, it does. That’s it exactly.

We are different.

Do you need me to prove it? I went to private school. My pinkies are curved. I only have one living parent. I love my step-father. I have 4 siblings. I am a dog person. I prefer reading a book to reading on an e-reader. I have blue eyes. I grew up in suburban Philadelphia. I haven’t gotten a haircut in over a year and a half. Ice hockey is a way of life. I enjoy running. I own a life insurance policy. I think water is delicious. I never want to own another car besides a Subaru.

Did  you get all that?

We’re not the same.

But that’s ok.

Somewhere along the lines, someone thought that someone like me could be considered normal. Here’s a few things that you may not know.

I have flat feet. I’m above  average height for a female at 5’8′. My father died while myself, my mother and sister were holding him. I’ve suffered from depression. I  don’t love where I live. I have a child with special needs. I’m addicted to social media (but I won’t be detoxing). I have over 30 tattoos and a permanent piercing. I’ve totaled more cars than most people own in a lifetime. I’ve miscarried. I have anger outbursts that I’ve worked almost 30 years to control and still struggle with.

But, someone thinks I’m normal.

I know this because I’ve been asked how someone normal has a special baby. Well, here’s how it goes. Two normals get together- you know, in the between the sheets, don’t tell mom kind-of-way. A baby grows. It’s an amazing baby. The parents, those normals I told you about, have dreams and hopes for this baby. Then the baby is born, and it’s so much different than the normals expected. It’s not better, or worse. It’s different. This child is, GASP, normal too. Sure he or she is different, but all humans differ. If you believe that there are two people alike, you’re only fooling yourself. All children are special. They are all unique- even those really strange ones like my brothers who are identical twins. Somehow those kids, 21 years later, are night and day… both amazing, handsome, special kids headed in two different directions.

So what’s normal? How the hell do I know?

I’m a tall woman, with crooked fingers and flat feet. I’ve encountered death and loss the likes I don’t wish on my enemies (do I have those?). I’m married, but is that even a cool thing to be anymore? I live with  OCD issues paired with insomnia (no, I don’t consider any part of my life to be suffering from…).  My normal husband? He’s a 37 year old who made a career change at 35. He went from a single guy-musician-business owner, to husband-solely-supporting a family of 3 (soon to be 4!) in under 5 years. He’s not very tall, or dark, but he’s really handsome. His nose is big and his heart  is huge. His normal-self didn’t own a car for 6 years. In fact, he’s so normal that he chose me to marry (as described, I’m as normal as they come, no?).

Normal? It’s not what you think.

What are you? What am I? What is Dave? And Addie?
Well… we’re all human. Let’s act accordingly.

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Marvelous Monday

What a wonderful weekend- jammed packed with all I am thankful for and all things dwarfism! I have mentioned LPA about a million times, and all the support they offer to the LP community, but there is so much more than that.

There are lifelong memories made by friends who see each other a few times a year. Parents who lament all the silly things that we get that no one else truly does. Not life-altering stuff, but finding shoes that fit, are cool and also comfy. Why moving a faucet can make life easier for your child. How to hem jeans. It’s the same old parenting things we all think about, but rarely do we encounter so many seemingly minuscule things over and over and over.

The best part? When Addie gets into a large group of kids, there are no worries because this community is watching over her- everyone.

This mama may be suffering from serious pregnancy hormones, but when Jackie and Avery (two fabulous young ladies) took Addie’s hands and walked her to their dance circle complete with other girls, and encouraged her to dance, laughed with her and never let her out of their sight, I walked away, took my seat, gripped a cup of ice water and swallowed my tears. My face was hot. My body felt cold.

#aisforadelaide #firstdance #lparegional #2014

My daughter already has an amazing life.

I watched what her Spring and Fall would bring each year, as our District regionals pass by. I saw middle school dances and girlie laughter about things that us parents would just never understand. As I sipped my water, surrounded by women I’ve grown to love in our brief, but powerful 21 months as LPA members, we laughed at my verge of crying.

#aisforadelaide #ladiesnight #LPAspringregional2014

I have an amazing life.

These moments are not forever. We have our struggles. We have some of the happiest moments of our lives without the LPA, or anything related to dwarfism. Being little, or big, or average does not define us. Having such fabulous friends, regardless of distance, giving my child the opportunity to live her life and being guided by those around me. That defines me. There is nothing like knowing that your life changes shape when you let go of the reigns and just live.

With $100 in our pocket and a cooler full of fruit, bread, peanut butter and tuna, we went to Cape Cod. It was our first regional with our LPA district. We got to ask questions. We got to answer a few. I shared a conversation with men and women. Some were my height, some were not. But the conversations were the same. Our kids were being crazy, they all needed to sleep, we all enjoyed the sunset at the banquet, our clothes seemed to be getting tighter as the New England winter ceases to end. I joked with my ladies about this and that. We all ragged on each other, shared hugs, high-fived the  kids.

Being members of the LPA has allowed us to NOT define our family by dwarfism, but to learn in a safe, well educated environment for ourselves, our daughter (and future baby!) and those who will learn from us. To balance our lives between doctors and normalcy, because at the end of each day, I am doing the same as any parent… reading 102 books before bed, watching my child guzzle more water than they consumed the entire day and praying they don’t spring a leak in the night, kissing her cheeks and watching the monitor (sure, I’m also listening for snores and leg movements, but that’s neither here nor there). Addie? She’s just like your child. And me? I’m just like you. Tired, stressed and loving every minute of this crazy, fast-paced thing they call Parenting.

#aisforadelaide #swimming #capecop #seacresthotel #lpaspringregional2014

And my random  of the week? If you missed it before, don’t forget to check out this awesome video below <3 <3 <3 (Yes… I’m a bit excited to share after holding it in for 13 weeks!!!!!)

Happy Monday, Reader!!!

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Filled with Thanks

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Filed under Community, Educate/Adovocate/Make Change

New Moms Connection

I remember telling Kristen… she’s got a big head. I laughed nervously. Kristen told me all babies are different. She assured me nothing was wrong. She was right. Nothing is wrong, but I was right, too. Something is different.

Addie and I  headed to the doctor. We left in tears. Addie in pain from her shots and me with my heart breaking. An ultrasound and a skeletal survey were in the works. We never made it.

I remember emailing Kristen. Dwarfism. I don’t know what it means. How do I tell people. I want to tell the group. Will you sit with me. Will I be OK?

I was.
She was there.
The whole time.

The accident where I got rear ended at 20 weeks.
The feeling that I couldn’t leave Addie with anyone, but I couldn’t leave the dishes, either.
The time Dave left on business and Addie ended up at the doctor’s office 6 times.
The beach where I would have surely burned myself and my baby to ashes.
The days, weeks and months that I needed people to hear ME and not the internet version of myself.

Kristen was there.

Rhode Island New Moms Connection means more than just time out of the house, a place to bring the baby, or  where I met my best friend. It is what helped me retain sanity. It was my sounding board. It was there that I met Sarah, and was introduced to an amazing group of bloggers.

I cannot thank Kristen enough for all that she’s given me. Not just a place to share with other women, but friendships for a lifetime- the people that were there with me during my first steps of motherhood, diagnosis and that have shared all of my heartache and all of the amazing firsts with me as if they were their own.

Thank you, Rhode Island New Moms Connection.

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How do you measure a year?

How do you measure a year?

I certainly cannot put a measurement on my love, and I’ve lost count of the times I’ve cried, but I know I am happier than I’ve ever been. I’m more complete than I ever thought I would be. I am Mom.
Mom to Addie.
Mom to a beautiful baby girl.
Mom to an amazing human, who can (and does) do anything she puts her mind to.
I am Mom to an achondroplastic dwarf.

Her name is Adelaide Eileen. One year ago, my husband and I sat terrified in Hasbro Children’s Hospital wondering why Addie was unable to break a fever, wake up or take fluids. In response to unrelated testing, we were told: “Your daughter’s x-rays are consistent with the diagnosis of Achondroplasia.”

I wrote about it HERE, in the first blog post.

Thursday, June 21, 2012, Addie and I spent the day at a local pool with a friend. I was hoping the slight fever from her shots would dissipate as she napped in the shade, and was sure to keep nursing her. But the fever would not relent- it just continued to rise. Her naps become constant sleep and I could not get her to latch. As Dave headed home from work, I packed Addie into the car with extra milk, my breast pump and some clothes for us. I knew Dave wanted to go to an opening for a friend’s new business. He never got a chance to let loose, so I didn’t call him. I made the trek with tears in my eyes, 3 miles to the hospital. Sitting in the ER and being rushed into admission, I called Dave and calmly asked him to come. Shocked, he left the event, pressed his foot to the floor and raced into the building in less time than it should have taken him.

It’s been a year since we went from this:

Addie at Pool

to this:

Addie in Hospital

In the 12 months since, we have laughed, cried, hugged, bumped heads, enjoyed milestones, regained hearing, made changes, more changes, and built a community that we could not live without. A community we are celebrating nationally next week and locally TODAY at the Southwicks Zoo! We are surrounded by love.

I don’t believe I had a baby I wasn’t expecting. Addie is happy, silly, brilliant, with a sly sense of humor and a mega-watt smile. She’s not like every other baby. She won’t be like every other adult. But she is mine. She is ours. And she was meant to be.

A year ago, our suspicion that something was different was confirmed.

Adelaide has dwarfism. Her type is the most common form, called Achondroplasia. There are about 30,000 people with dwarfism living in the United States. I have said it a million times, but I don’t always believe it… Addie is like every other child, just shorter. In truth, her limbs are not the same. Her torso is [almost] the same. Her head is larger. Her facial features flatter. Her spine is not the same- not in the least. Her feet seem like they aren’t growing. Her hands are small. Like really small. She is different. Sometimes I think the sooner I admit that publicly, the sooner it won’t be true. I can go on saying that she is like everyone else but small, but she isn’t. That’s OK. It’s just a fact.

She is different.

There I said it.

A year ago, I found out that she was very different.

A year ago I found out, but I knew before they told me. I KNEW.

I have the most beautiful baby girl- I never expected to be blessed in the way we have been. Of course there are struggles (almost everyday). There are alarms on machines, therapies that seem to never end, appointments that need to fit between other appointments that fit between other appointments. Paperwork that piles up and permissions (with matching filing charges) that are almost insurmountable. There are letters that inform us of denial. They go in this way time and time again:

Denial Process

We pay, we write letters, we make phone calls, we argue the point. But the good always outweighs the bad. The smiles, the laughter, the giggles and shrieks, the tears that only cease after a hug, the long nights with all of us (puppy and kitty, too) in the bed. Those are what I will remember about our first year of diagnosis, learning and advocating.

I will remember falling asleep with her on Christmas Eve, during her first celebration:

Sleeping

I will remember this face welcoming me each morning, with sweet milky breath, and a hint of berry as she shouts her first greeting into my sleepy eyes: “HI!”

That Smile

I will treasure each family moment we get and love my husband and father of this sweet girl, and future babies.

My Sweet Family

Lastly, I will remember all of the CPL drama.  I will continue to educate regarding dwarfism and work to end the use of the m-word as common vernacular in our society. I know change is hard, but telling me “no” will be prove to be more difficult. I promise.

It’s been a year. And what a year, indeed!

I’ve been able to measure the cups of coffee, the amount of sunshine or rain, the money spent and the time wasted. It’s the moments of pure joy that I cannot measure. There is no form of assessment that can quantify how incredible a year is for us. Adelaide Eileen, you amaze us, little one. Recently my friend Leslie wrote THIS post. It’s a letter I’d wish I’d been given for the statement of: hard doesn’t always mean bad.

I learned this lesson at a young age. Sometimes “hard” did mean bad, and other times it just meant a challenge. Something I was given by Him, or Her, or Who (Whom?) to remind me of my strength and courage. Not many people can relate to my life story. Not many would want to. But the reminder that sweet Adelaide chose us (she swam the fastest, after all), is proof enough that what is hard in life does not always have to be bad. It can just be different. And different can be pretty darn amazing.

Thank you for choosing us, Addie. We choose you back, everyday.

 

How do you measure a year?

 

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

Marvelous Monday!

So, Monday… you’re back. Thankfully, my Friday this past week was pretty awesome as I spent it with my bestie and her baby girl, and NOT getting rear ended on 95 (BONUS!). I hope everyone had a beautiful weekend, car accident free, as well!

This week I am thankful for finishing. I guess this really means I’m thankful for trying, but really… getting to the end was triumphant! Last week, I ran a 5k the day after we were in an accident. It was a bad choice. I cried. My ankle hurt and I had a headache that didn’t go away until Wednesday of this week. But I did it. It was a terrible time (nettime of 34:12) on a course I’d trained for weeks… my hopes of a sub-28 minute 5k were dashed with one “just for a second” glance away from the road.

But, I finished. And I am thankful for that. I am thankful I have “it” in me to keep going.

Cox5k

As someone recently pointed out to me after commenting on Addie being small, well she doesn’t look that different. Maybe they made a mistake. I’m not quite sure who they are, but the blood work from Johns Hopkins was conclusive- Addie has Achondroplasia. This week, my dwarfism fact is that Addie isn’t that different! It seems like I preach weekly about my baby girl being able to do anything she wants and that she is just like everyone else… and finally someone agrees- no matter how inappropriate they make their agreement sound. There are people with forms of dwarfism that just make them short, yet proportionate. Others, like Achondroplasia are disproportionate with short limbs and a larger head, others have short torsos and average limbs, some are still being discovered!

When Addie is next to her peers, sitting on the floor, they are almost the same height. Addie’s torso is [almost] average to her age- she wears a 6 month top. However, when she stands next to most kids in the 11-14 month rage, she is a few inches shorter. There are other differences people have noticed- and seem totally unabashed about telling me about: her neck is short, she has lots of rolls in her skin, her sunglasses don’t stay on (the bridge of her nose is flat), she’s still crawling like that (yep!), she looks like Buddha, her head is huge (so is your mouth!)… it goes on, but please know, these are just features of the type of dwarfism that Addie has.

Truthfully, she might never grow out of some of these things, and others she may. The best part of the whole parenting game? Growing and learning [with your child] everyday! Most things people say, they mean with the same innocuous connotation as “the sky is blue”, so I try to just laugh it off. Most of the time, it’s not worth explaining more to people who misspeak. Addie is beautiful, smart, funny hysterical, loving and, like her mama, flirtatious. Sure, some things are different about her… then again, some things are different about all of us. Thank you to the people who look past everything else, into those blue eyes and see what we, as her parents see: Adelaide.

AddiePlaying

And my random of the week… sometimes you just have to let go! A friend of mine came up from DC- which she does so rarely- and I was all too excited to meet her out for lunch. Dave, thankfully, was able to come, too. We never get out and I was super happy he came!

We were seated outside at Harbourside Lobstermania, and enjoyed the afternoon on the water. The service was great, the weather was perfect and the food was pretty reasonable- although I totally should have gotten some seafood and not the South Western Salad (it was good… but I totally drooled over Dave’s fish & chips!). We didn’t sit and talk about the piled up paper in envelopes (they go by the name Billzzzz), or the unrelenting issues in Rhode Island… we talked about Dave’s upcoming business trip to Taiwan (WHAT?!?!), the LPA conference in DC where we will go out to eat at a college friend’s new place (Beuchert’s Saloon), and love, babies, vacations.

For one afternoon… we just let it all go. And man, did we need to!

Sure, Dave came home and worked all night in the basement to make up for the fact that we went out, but he was happy to. He was happy to treat his ladies to a nice afternoon and to hang out and enjoy a beer. Thank you to Alex for her awesome photo skills:

HarboursideLob

Happy Monday to you, Reader!!!

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Marvelous Monday!

Good morning everyone! I write to you from my office at 6am. I usually don’t write this early, but my husband is finally home from his business trip and that means the dog and cat are going berserk! So, I’m awake, and he is asleep with Addie in bed. Must be nice.

Anyhow, let’s begin our Monday!

I read this piece  on Katie Couric’s website regarding the book Far From the Tree: Parenting a Child That is Different Than You (I can’t wait to read the book), and watched the video of the mother whose daughter is an LP. It was nice to see another parent’s view on their different family, and watching forced me to reflect on a few things I had not thought about.

Kiki has a different type of dwarfism than Addie. She will, most likely, always need a chair to go long distances and she has different medical needs and issues than Addie. If I have not mentioned this before: dwarfism is not dwarfism is not dwarfism. By that I mean in the same way your broken bone is not my broken bone, my parenting skills are not your parenting skills, my Ford is not your Range Rover. There are over 200+ types of diagnosed types of dwarfism and countless others that are still baffling doctors around the world. Undiagnosed forms, children with little to no symptoms and others who are symptomatic without knowing why. I tell you this because my concerns differ from any other parent, as expected, but also from this Kiki’s mother, in particular, because our children do not have the same diagnosed condition.

That being said, I think this video is wonderful and truly made me think. The three things that stick in my mind are:

1. Kiki’s house is not adapted for her at all. This is something I want to do for Addie for the exact reason Kiki’s mother doesn’t. I want Addie to have one space in this world for her. Nothing in the outside world will be built to suit her height. She will reach, climb and ask for many things throughout her life, and I would like to offer her the opportunity to have one comfortable place, where she won’t need to do anything to reach what she wants. Where she can stand on her own two feet. Where it is safe.

I have thought about this since June 22, 2012, when she was diagnosed. I remember one of my first thoughts: the rise on our stairs is too high. I know you’re thinking she can use railings, she can do it. Many LP adults and children live in homes with stairs… but you’ve never seen ours. My husband, standing at 5’9, falls up them all the time. We have owned this house for almost 5 years and he still doesn’t have the ability to walk up the stairs. My mother, who ran a half marathon with me a few years back, gets winded and feels like she’s gone through a workout every time she visits. And my best friend is actually afraid to carry her baby down the stairs when she’s over- she grips the railing like there’s fire down below.

8 1/4″ from the top of one stair to the top of the next. Average rise is 6-7″. Do we replace the staircase in our 1928 home? Nope. We plan on selling if the market ever allows us. I would never feel comfortable leaving Addie at home (in her teens) in a home that simply isn’t safe. I haven’t left her with anyone, in part, because I’m afraid someone will fall down the stairs with her. I love my home… my husband and I rebuilt much of the inside, but Addie’s safety (and some more room for whenever baby #2 comes along) are priority.

Keeping to this theme, I’d rather have a bathroom just for Addie (with a tub she doesn’t have to climb to get into), as well as a counter in the kitchen with her own sink and some space for cutting. I want her to know how to use the kitchen and enjoy our love for cooking in a safe manner. When she is an adult, she can choose to have a stool or a custom home, and she will always need a one to reach the stove and oven, but wouldn’t it be nice to have a space of her own? Our kitchen is not big enough to offer us the renovation option. Another reason, our beautiful little home will not serve us forever.

2. Kiki’s mother wonders what will happen to her daughter when she is gone. She worries about how she will get around, if she will be ok and who will take care of her. Quite simply, I didn’t have to think about this. Not only does Addie have a wonderful support system in family and friends, she has a wonderful extended family in the LPA. She will always have someone to lean on. Besides… when I’m gone, she will keep rockin’. Just like she does  now!

3. Parenting crisis. Kiki’s parents (from what I gathered) are not together anymore. There was much stress on their relationship, I’m assuming, from what was briefly touched upon at the end of the video. I have thought long and hard about this, and though it’s not easy, I am very blessed to have such a hard working hubby. He understands that her appointments don’t allow me to work full-time, especially with him having a 1+ hour commute everyday. In an emergency, Dave could not leave work to get to Addie, or pick her up from places before 8pm during the week, and he works weekends, too (7 days a week… I miss him all the time). Without full-time, it isn’t financially worth it to work. We did a breakdown, and because Dave can never help with general appointments, sleep studies, surgeries, follow-up appointments, or sick days, I would need 30 days a year (give or take). It took 2 weeks and 13 phone calls to get the audiology department to send information to the ENT. It took 4 phone calls to get the referral for Addie’s sleep study to the right office. It took 45 minutes just to be seen by the ENT, 70 minutes to be taken into the sleep study evaluation and we always wait at least 20 minutes at the audiology office. Addie’s surgery includes going to the hospital to speak with the anesthesiology department about Addie’s needs and supplying information to them ahead of time so they can schedule the proper person to put her under, the actual surgery and a follow up. Let it be said. I am stressed. I smile. I love all over my beautiful baby. But, it takes a lot of work to get a geneticist (and his PA), orthopedist, ophthalmologist, pediatric otolaryngologist, audiologist, Early Intervention nurse, speech therapist, pediatric sleep specialist (neurology), and, of course, pediatrician on the same page.

Sometimes my marriage is stressed because of money. Sometimes because I work a lot during the day, but I never get out. And sometimes, because I want someone to rub my back, darn it! But I know that I would rather do this crazy thing called life with Dave, than ever attempt it without.

That being said (and A LOT was said), let me tell you what I’m thankful for this week:

DAVE BEING HOME!

Or… at least being back on US soil. That is (dot. period. end) what I am thankful for. Hands down!
Dave left Wednesday for London on business. Let me tell you about my week:

Wednesday I was up at 3am with Dave. I couldn’t fall asleep again after he left, so I stayed up. Later that day Addie had two appointments. We went to the ophthalmologist where they checked to make sure her vision was OK and was not in any way affected by any extra fluid in the head. Dr. Donahue is so NICE and was great with Addie. In the waiting room, she talked to an old man (she yelled at him) and amused countless people with her pterodactyl impressions and smiles:

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Telling the old man what was up! (Hair clip by Sweet ‘lil You) (Bib by Type A Style)

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This is Adelaide. She is part pterodactyl.

They also dilated her pupils. This was 10:30am. Yikes. She looked a bit scary, but still beautiful!
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Who else falls asleep when their pupils are dilated?

Who else falls asleep when their pupils are dilated? This doctor was clearly boring!

Then we went to the ENT (Dr. G is amazing, and there will be a longer post about this)… time to schedule surgery for my baby girl. It was a sad time for me and with the 45 minute wait to be seen with dilated pupils under florescent light… Addie was a peach (note: sarcasm). So, three more appointments we scheduled for various ear-related things, and we were back in the car and headed home. Addie seemed upset, but she took a short nap while I wrote and recomposed and then she was her jovial self again. I still had not slept, and seeing as 5pm was coming quick, I decided I would just pass out after Addie went to bed.

She didn’t look happy, and so it was.

Doesn't feel so good.

Doesn’t feel so good.

Wednesday night Addie was awake every two hours. This had never happened. Ever. Even when she came home from the hospital, she slept 3-4 hours at a time during the night. What was happening?! Thursday at 6am I took her PJ’s off to find her body hot and diaper dry. 101°. Doctor. Ear infection. Unreal. Day spent in bed trying to break the fever, administer the pink stuff (Amoxicillin), hydrate her with as much milk as she wanted and snuggling the heck out of her pain. She slept, I kept watch. Plans to get out and see a friend were cancelled and staying home alone with Addie was in store. We did play, however. What better way to use our medicine dispenser than as a toy?

Thursday night was better, but she didn’t sleep as soundly as usual, so I stayed up watching the monitor, jumping up to console her when she got too stuffy. She wakes with a few screams during the night as it is (apnea), but usually falls right back to sleep. This discomfort was different. This broke my heart. No suctioning, medicine, milk, humidifier or steam was helping.

I brought her into bed with me where she “tree-frogged” all night, but was much happier. We sent this video to Daddy:

Friday morning, still sleepless, Addie was in better spirits. We played and had a great time. She was feeling better, and I was hoping the reign of being cooped up in the house could end. And it did. While playing, Morgan (the cat) snuck through the toys. Carter (the dog) gave chase. Practically running his 70 pound body through her, he lifted Addie up and over, into the wall. Carter immediately felt bad, but Addie, I’m sure felt worse. And me? I was in tears. I gave her some milk to calm down, and called the doctor to tell them we were on our way.

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I tried to email Dave to get him to call (the WiFi in London is terrible), but still, he could not get through. All I could do was send him this picture. He was horrified.

The doctor laughed when he saw us again (second day in a row), but cringed when he saw Addie’s head. He felt the bump and skull, checking for bulging fontanelle and a fracture, but she was smiling up at him, happy as could be. By the time we got home, the head was already looking better (and her hat helped hide her trauma). By the next morning, just a bruise and small cut.

HeadbumpSaturday was amazing. We didn’t go to the doctor once. I caught up on some sleep and snuggles, and got all of the laundry done, the house cleaned top to bottom, the trash taken out, the dog got a bath, the litter box got changed, everything was put away in its place. All that was missing was Dave.

So of course, on Sunday, Dave’s original flight was cancelled and replaced by another. Eight. Hours. Later. We spent the afternoon with cousins to take our minds off the delay of Dave’s arrival, and that gave Addie some much needed rest:
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Finally, it was almost time! Addie was excited to see him, all she could say was “da,da,da,da,da” every time I told her “dada’s coming home!
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As I watch them curled up, still writing over an hour later, I am filled with peace and serenity once again.

My whole world

My whole world

And, to be brief… my one random of the week.
I found out what I’m made of this week. I beg all you ladies out there who are at the end of their rope to climb one rung higher than they thought they could. Take one more step. Do it because I know you can. Thankfully, it was just a run-around week. Addie is OK. While Dave was away, there was terrible WiFi connection and so we spoke for less than 10 minutes total (in 5 days).

When we got Addie to bed, Dave showed me the video he tried to send me a bunch of times, but the file was too big for London’s bad connection and all I got were a handful of blank emails. This sums up my man. I love him and his quasi-romantic, goofy, nerd-boy self.

Thank you for joining me on another Marvelous Monday journey!

P.S. Happy 28th birthday to my Prom Date, Dean!

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MM!

It’s another Marvelous Monday! Happy MLK Day. There are so many lessons I could touch upon on this important day, but what I hope to convey in every post in some way is equality. So, it’s Monday; let’s jump right in, shall we?!

What’s up with dwarfism this week in the Martinka house? Let me tell you! After family swim at the YMCA this week, a woman kept telling me how sweet Addie was and how small and tiny she is. She was a sweet, older woman, by no means old, but in her late 60′s. When she asked what size clothes Addie was wearing, I was so confused and sort-of annoyed I spouted, “Newborn pants, and 3 month onesies. She has achondroplasia, so she’ll always be small.” The woman looked confused. “Dwarfism,” I said. The woman smiled and grabbed Addie’s little fingers in her own. “With the right shots, she’ll be normal, right?” She asked.

For some reason, I remember learning about the pituitary gland in science class, and that height issues relating to it can be treated with growth hormone injections. “No,” I said calmly, “dwarfism cannot be treated, you’re thinking of injections for the pituitary glad. Addie will just be little.” Again, the woman smiled, seemingly surprised at my knowledge, continued talking about herself and how she doesn’t understand why her daughter-in-law expects her to care for her grandson… “Why did they have a child they had no daycare for?” she laughed. We briefly discussed how Story Time at the Warwick library is always too packed and I told her about the one on Fridays in Providence.

I put on my backpack (Dave makes me use the backpack to even the weight on my shoulders… it’s hideous) and picked Addie up in my arms. The woman, a solid 4 inches shorter than myself, patted my shoulder and said, “she is beautiful.” And that was it.

So this week I learned that when you explain things to some people, they don’t care. And that’s a good thing! This woman learned something new because deep inside the inner-workings of my brain, I’d remembered something I’d learned long ago. I wasn’t particularly pleased with the word normal, but to someone who doesn’t have a family member with dwarfism, that’s just what it is. People who are tall are normal, and people who are small are different. I am learning that people don’t think Addie is abnormal; there isn’t always a black to the white. Sometimes, words are just words and they’re not meant to hurt or offend. Just as the opposite of “love” is not “hate”, but “apathy”, the opposite of “normal” is not necessarily “abnormal”. Plus, Addie is normal… except she’s not. She sleeps through the night at 9 months old (the transition to her crib happened seamlessly), loves all food, hardly cries and she’s a little person. She’s not abnormal, just different. Heck… so am I!

9 months old!

9 months old!

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This week I am thankful for Netflix. I know it sounds strange… who is actually going to say they’re thankful for that? ME!

I watch one episode of some health-conscious show, like Workout, or a documentary like America the Beautiful, and I’m on the floor doing pushups. I don’t need motivation to workout, but when I turn Netflix on, I get sucked in and veg out, except when I watch something like these shows, then I get moving! Since beginning to watch more shows like this (10 days), I’ve worked out 4 times a week, and gone from 147 to 144.5 pounds. I’m really proud of myself… and I love Netflix for the inspiration to watch and move at the same time! Next time you’re in a slump… turn on a show about people who let themselves go, and it will get you up off your rear-end, too!

Finally… my random things of the week:

One… if you didn’t know, it’s National Hugging Day, so get on it…

Also, my hubby is leaving for London on business Wednesday-Sunday. I am super nervous about it… but I plan on being productive. My list of things to do after Addie goes to bed at 9pm include:
Blogging!!!
Giving myself a pedicure
Putting on a face mask
READING
Taking at least one long, hot bath
Running on the treadmill
and… blogging!

I am so excited to have what little “free time” I do have all to myself. I love my hubs, but we don’t see each other enough to take time apart. In truth, an extra hour in the day would mean time for me and time together, but alas, this business trip will serve as enough time apart for a lifetime! I’m so proud of him for creating this opportunity for himself- a business trip to London with the bosses… WHAT?! And I [already] can’t wait for him to get home!

I hope you’re all having a fabulous Monday!!!

Addie 9 months

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