Tag Archives: healthy

Marvelous Monday

And just like that: Monday!

We had a whirlwind week (ummm… it seems like this is a real pattern here), and now that we’re finally home, in our little abode, it is all hitting me. My phone is buzzing and vibrating with photo tags, well wishes, comments, and a list- a list of gifts, cards, beautiful  messages lining cards all meant for Addie. In just 2 years my sweet angel has so many who love her, who celebrate her. For all the people who could be there and all those who wanted to be, I am thankful. How can one little girl have  such love surrounding her? As I type away, I am watching her sleep, and even with her eyes closed and her chest rising and falling, with her gentle snore… there is still the hint of her smile. Her happiness and her personality are always shining through- and this is why people are there. She’s a magnet to love. Our love. Your love. Thank you for celebrating our (almost) two year old with us!

#aisforadelaide #happybirthday #AddieisTwo

*  *  *

I forgot to update everyone on Addie’s growth (which we truly only chart from her specialists) in the last post about Delaware, so I wanted to share her stats here:
23 Months:
24.25 pounds
29 inches long
20.3 inch head circumference

As I plotted her newest numbers with the doctors on the most important CHART according to her doctors (weight for height), we came up with Addie being at -1 SD for her head, which really put to rest the concern for hydrocephalus because her head is slowing on its growth  pattern. For height, she’s at +1 SD, so she’s right above the mean, and for weight she’s right in the middle. When you see the numbers on a growth chart, her own growth chart, it’s pretty cool! Dwarfism is an umbrella diagnosis with many forms defining it, and I feel very fortunate to have so much research about Addie’s form to help guide us through her possible medical needs.

*  *  *

Lastly, some random to start your week off… Heather, a fellow blogger and advocate, contacted me regarding a cause close to her heart. As I read her story and web page, I felt the need to share the information with you. As a child, I remember my school spending a lot of money to renovate during Spring Break one year. When we came back, there was some discussion about asbestos and that’s what they were doing… as a kid, I had no idea what that meant, but loved that our tiny school had gone through a face lift. Reading Heather’s story brings me such peace- knowing that I was not exposed to something so terrible as so many are. Please read and share her story…

At age 36, I was diagnosed with mesothelioma just 3 ½ months after my first and only child, Lily, was born. I was given just 15 months to live unless I underwent a drastic surgery to remove my left lung. Miraculously, I beat the odds and I’m still here eight years later.

Asbestos is not banned in the US, yet it’s the only known cause of mesothelioma. I was exposed to asbestos through my fathers work jacket when I was just a little girl; my diagnosis came about 30 years later. Once diagnosed, most patients die within 2 years. I am one of few survivors who openly share their story and work to spread awareness regarding the dangers of asbestos.

In honor of Asbestos Awareness Week (April 1-7), I created a webpage dedicated to raising awareness. Although this week has passed, I would love to help educate and protect your readers from this preventable disease!

Here’s the link to my awareness page: mesothelioma.com/heather/awareness

#themoreyouknow

Have a beautiful week, Reader!

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Filed under Marvelous Monday

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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Filed under Achondroplasia

Family Dinner, It’s not just for movies

I love family dinner. Not just because it is my one meal a day that I’m not eating alone or conversing with someone who is more intelligent, but less wordy than myself (AKA Addie)- but because there are health benefits to sitting around the table together. Lots of them!

We began having family dinner when Addie was eating our food without hesitation. Splitting up our dinners seemed like a waste of time and she was often not hungry at 5, so now she eats with us at 7:30, then a quick bath and bedtime. It’s super simple, and we often get less than an hour at the table, but we learn about how the day went for everyone – we sit. We sit and eat. It’s a novel idea. And we turn off all electric devices and remove them from the room. There are no toys at the table, no cell phones or sounds- except some nights when we put a record on (yes, a record).

#aisforadelaide #familydinner #healthykids

I have loved this nightly routine since it started, but more than that, I love what it means to us and the downtime it gives each of us as a family and individuals- to decompress, to share and to let go of outside distractions. I fell more in love with the idea after reading an article about passing down family stories in Good Housekeeping, the December issue. It was amazing because it truly showed how valuable it is to know about today, yesterday and the dreams of tomorrow- they are what shape our future generations and show them what their family is made of. This theory doesn’t just apply to the traditional family, but to single parents, or those of loss.

In my family, the art of sharing stories is so important that I can tell you how my parents met (my Mom asked my Dad out- who was her temporary insurance agent) like it’s my own story. I can tell you where my parents graduated from high school (Abington and Livingston High) and college (Wheeling/BC and Northeastern). I can tell you where my parents worked as they moved throughout their careers. I can tell you where my grandparents grew up and all the funny stories from my grandmother reaching over a candle (and you can bet what happened- she was OK) to the time my brothers drove a trike down the stairs (that one is only funny in hindsight). I know my family has prevailed through loss of job, illness, death, and addiction. I know that my Mother is proud to have met her biological family and is so in love with her adoptive. I know that my Father had some family strife, but that’s what pushed him to keep us together to identify as Worths- strong and powerful. I know that we have been happy and successful and that we continue to carry on because we know that’s how it’s done. I know this from family dinners, holidays spent together, and nights where I asked please tell me a story over and over.

This is why we have family dinner (and why Dave and Addie have their own special time each morning to eat breakfast together- just the two of them).

At dinner, I tell Dave all about what we did, and then Addie chimes in with a come back work, Dada. And I see… that some days, no matter how much we do, she really misses having Daddy there. Or she will talk incessantly about a strawberry because we went to the store and I didn’t buy them for her, but she really wanted them. Dave will tell me about mundane things and then say, “Oh yeah, and [insert awesome news here],” as a total side note. I’ve learned that my values and what I hold important is not always the same as my husband and daughter- and that teaches me about them. While I get excited about some things that Dave cannot understand, he supports me. And me, him.

For many it is unrealistic to eat together every night, and as schedules get more packed, we will have the same issue- but I know that making time even once a week, still serves as beneficial to making us a more united front. To keeping us a healthy unit. To identifying us as the (Worth) Martinka clan. We learn how strong we are each night as we talk about the walls we faced and how we tore them down. We talk about things that need tackling and the goals we are setting for the next few months. We discuss how we will continue to grow and prosper and love and share and cherish each other and those we love.

And we do it all around the dinner table.

10 Health benefits to eating together:
1. Healthier foods- generally sitting down to eat means less “fast food”
2. Identity to your family
3. Healthier foods=healthier kids=more sleep=better grades… it’s a great cycle of good.
4. Eating at home means portion control and the ability to offer new foods to children- studies have shown children who eat family meals enjoy vegetables more than those that do not
5. Children who eat with and relate to their families are more likely to say no to drugs/alcohol due to parental fostering
6. Time to talk means time to connect!
7. Instills family routine and tradition (Sunday dinner… we go to my inlaws every Sunday to connect)
8. Children are less likely to have disordered eating when eating at home.
9. Families who eat at home save money. Period.
10. Families who eat together starting from children’s youth are likely to instill good eating habits and thus decrease the risk of weight/obesity issues in their kids.

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Filed under Parenting/Family/Lifestyle

Fall is a great time to get that Beachbody!

I have a friend I met online. She also has a child with dwarfism. We followed each others blogs, friended on Facebook and stalked on Instagram.

Coolest thing about all of these mediums? When Stephanie saw us rushing through DuPont in Delaware (where we both bring our kids to see Dr. Bober and MacKenzie), she popped her head up and exclaimed, “Chelley?! I didn’t know you guys would be here today!”

I was stunned… we were recognized… and by such a stunning woman. “I’m Stephanie.” *pause* “From Buttons & Bows.”

“OHHHHH!” I apologized for not recognizing her more easily and we both laughed about it. After I got home, we began to talk online more, and I watched her as she embarked upon a transformation of not just her diet, or even her family’s… but changing their lives with healthy choices, taking time to workout, and better educating herself about what she was fueling her and her loved ones with.

I asked her to share her story with me, and she did… so completely I wanted to share it with you! I hope you are as inspired by her, and encourage you to contact Stephanie at stephsmith7@live.com for more information about how you, too, can change your life!

Or find her here:
Beachbody ~ Instagram Twitter Facebook ~ Blog

Stephanie shares below:

How I got started:

I struggled to lose the 25 pounds I gained with my second pregnancy, even though I was eating pretty healthy (or so I thought) and exercising as much as a nursing mom with two children under 2 can manage while also running an in-home daycare. But the weight just wouldn’t budge.

IMG_5852A friend of mine introduced me to Shakeology, a nutrient dense meal replacement shake that had helped her lose around 20 pounds in 2-3 months. She had been obese most of her life and at one point weighed 300 pounds. She managed to get down to 200 pounds by herself but then plateaued. Every year she would yoyo between 180-200 pounds, even with going to the gym everyday… After she started drinking Shakeology and doing the Turbofire workout system, she has been able to maintain 150 pounds for the past year

I had seen how the products had worked for her so I decided to give them a shot and ordered Shakeology and a different workout program called Brazil Butt Lift. I had wanted to lose all the weight I had gained with my daughter by her 1st birthday and I only had about 3 months to do it. That was August of 2012.

I started drinking the shakes (which were surprisingly delicious!) and started doing my workout program. And I did really well for about a month. Then in September 2012, my life blew up. My husband took a promotion with his company, we put our house in our hometown on the market and moved 5 hours away to Iowa. My husband lived with his aunt and uncle near his job and our two kids and myself moved in with his parents an hour and a half away while we tried to sell our house. So essentially, I was now a single parent- and I give props to all the single parents out there because it was the hardest time of my life! A month after we moved, the kids and I had to move back to our old hometown so that I could take our son to weekly appointments at Shriners to have his feet re-casted. He was born with dwarfism and clubfeet, and his feet needed some extra work. This required my 2 year old to be in leg casts up to his hips and weekly appointments two hours away for a month. And then all of a sudden it was Christmas and my grandma was put in the hospital and diagnosed with cancer and passed away 3 weeks later. And then we had literally had 4 days to find a new place to live back in Illinois or we would lose our residency status, which meant our son would lose some of the Early Intervention services he is able to receive through the State of Illinois. Because of his special needs, he needed those services because they helped provide for things our health insurance did not and truthfully, that we couldn’t afford to pay for ourselves. Our lives were a big mess. We were traveling almost every weekend, eating a lot of fast food and processed food and had huge heaps of stress on us. September 2012-February 2013 are pretty much a blur. We made it through, only by the grace of God.

Why I am now a Beachbody Coach:
The only thing that was consistent for me during this time was that I kept drinking my Shakeology for breakfast. It was a quick, easy meal for me to down when I was trying to wrangle two children by myself most of the day. My other meals during the day were not the healthiest but I did well with portion control so at least I wasn’t stuffing myself with way too much food. I did however, eat a fair share of chocolate and pizza (my stress foods) during this time. By the time we moved into our new house at the beginning of February, I had managed to lose all but 10 lbs of the 25 lbs I had wanted to lose the previous summer. I was convinced that the nutrients in Shakeology had helped me to control my cravings and helped me lose the weight. My husband and I started doing Insanity together when we moved into our new house and started eating clean, and by April I had lost my last 10 pounds and was down to my pre-marriage weight. As for my husband, who had never drank Shakeology before then, he lost 30 pounds in those two months. We were hooked and convinced that the Beachbody plan was the real deal. I was ready to help others lose their burdens of weight and unhealthiness, so I became a coach!

2012-11-21 00.41.17

Why I want to help others:
When I was overweight, it affected every area of my life. I had no energy, had little self esteem, and felt very subconscious in my clothes or swimwear. I didn’t like the baby belly I had left over. I felt frumpy and much older than my 27 years. I was worn out all the time and truthfully, pretty grouchy too. And that’s no way to live your life daily. I wanted to be that fun young mom I had always envisioned myself to be – ready to tackle anything with her two little toddlers! Shakeology helped me get my energy back, helped to keep my moods more even, and helped me lose the weight that was bogging me down. I regained my self confidence, which was better than losing the weight!

I want to help others rid themselves of what is bogging them down, be it weight or financial stresses. I want to help teach others that you can eat clean and healthily while on a budget. I want them to know that you can teach your children good eating habits that will last them throughout their lives. Children with dwarfism also struggle with obesity, because their bodies have such a harder time moving than children of average height. I don’t want my son to have to battle obesity on top of his other physical limitations that he fights every single day to overcome. Ive learned a lot watching him. He fought to reach every single developmental milestone and in many ways, we as adults need to learn from that and learn to fight for what we want in our lives. He doesn’t let the “excuse” of having a special need stop him and we shouldn’t use the “excuses” of not having enough time, or money, or knowledge let us stop ourselves from being fit and healthy and happy.

2013-03-13 18.14.44

2013-03-13 18.09.15

 It’s now a year later from when I started and I am now over halfway through my third pregnancy. And I still weigh less than I did this time last year. So how did I do it/am still doing it? First, I drink my Shakeology every day. Second, I used top notch programs from Beachbody that are proven to get results. I used a combination of Brazil Butt Lift, Turbofire, and Insanity to get my body back. And now I am using a prenatal yoga program to stay in shape during my pregnancy. Most importantly, I eat clean and healthy. And I used my coach for support when I didn’t feel like I could do it. She was there to keep me accountable to my goals and to provide inspiration when I needed it. Now, I pay it forward and help coach others for free.

IMG_5486What an inspiration!!!! Beautiful, mama!! Happy Friday, all- I hope we all use this new day as a jumping off point to start a new life :)

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Filed under Community, In Other's Words, Parenting/Family/Lifestyle, Reviews

Love Thyself

As a friend of mine stared at my recent status updates, she emailed me: Bitch.

WHAT?! I replied.

You’re running again! You don’t need to.

…the conversation continued. Mostly about our bodies and how she “hates” her post-baby figure. I turned it, briefly, to running- I do need to. I don’t run for the awesome legs, sun-kissed nose or black toenails. I run because my sanity depends on it. To sum it up: I was a high-risk pregnancy- partially due to miscarriage and partially because of surgeries I’d had. This left me sidelined during 32 weeks of my pregnancy (I ran my last half marathon just a few weeks pregnant… that would explain the intense exhaustion I felt after). All during Addie’s gestation, I worked 60+ hours a week- sure we needed the money, but more-s0, I needed to take up my time. I often stayed late, finishing projects just to avoid seeing my Asics waiting for me at home. At 20 weeks I was rear-ended on my way to work, and that set my back into a spiral. Up until that point, I’d had NO pregnancy pain… from that point on it was pain all the time. I explained all this to my friend and more… I ended it by telling her to take a walk, by herself, with music that she likes, or in a new place. As she goes along, run for a minute, jog, walk- do it for 30 minutes. Tell me you don’t feel better. Running isn’t for everyone, but a family walk that incorporates a jog, a good walk/run routine, or just a brisk walk on your lunch break- if not for your thighs, for YOU- can make a world of difference in your attitude.

So, yes. I do need to run.

Besides that… when I look at my belly now (one year postpartum), I’m not overwhelmed with joy. I have never been a skinny girl. Thin, yes. But I was made to run up and down a field, wielding a stick of composite wood or alloy and leather strings. I was made to run through those skinny girls with my kilt flying high, showing off the spandex shorts beneath. My cleats sounding like a 100 horses, as I slam my feet into the ground. Sometimes I forget that.

Senior Year, lacrosse

Senior Year, lacrosse

Early on in my pregnancy, I went home for my sister’s baby shower. She weighed herself on the super-accurate scale my parents have. When the number popped up, I forgot about everything I just said above. I was so angry at myself for being so big. My sister, at 7 months pregnant weighed what I did before I got pregnant. We are the same height (give or take half an inch)… we are not the same build, and you guessed it: she’s the pretty one. She is blonde haired and blue eyed. She’s thin with lean muscle- not paltry. She’s strong with a long face and a big smile and beautiful skin. I am muscular, and when I’m not in shape, I look round, bulky, dimply. My calves are huge from a decade of dance and gymnastics. My shoulders are broad- good for being a hockey goalie. My face is round and my blue eyes shine from behind long lashes and a shock of dark hair. I have my Mom’s face and my Dad’s body… my sister is the opposite parental combination.

It was then, as she stepped off the scale, I began to take belly pictures.

Through the years I’ve had an obsession with my middle. My legs are always questionable. I wish they were leaner… even with all the abuse I put my knees through, they still carry me… but my belly has always been toned (not well defined, just flat)- until I had a baby.

My belly when we decided to conceive, age 27. Me at 21, after being tattooed and me at 25 on our honeymoon.

My belly when we decided to conceive, age 27. Me at 21, after being tattooed and me at 25 on our honeymoon… And a week post-Addie.

So, I write all that to share with you my mantra and what I try to remind myself of daily: “You are beautiful.”
[Now, you SAY IT: "I AM BEAUTIFUL"]
I remind myself… You gave birth to a beautiful baby girl a year ago… it’s not easy to take care of yourself with daily life, let alone when you have a baby. The house is always clean, the dog always walked and fed, the baby clean and smiling. The cabinets are organized and you’re up-to-date on your work. All appointments have been made and kept, the correct paperwork is filled out and sent. All phone calls are in and logged (fighting insurance companies is a full-time job). It goes on from there.
Give yourself a break and love it.

I’m a bit softer… but every extra pound, every little stretch mark… that’s Addie. Sure I’m down a few pounds from pre-baby… but it’s not the same. It being my body. My limbs feel heavier, my butt a little wider, my arms rub as I trudge up another hill in the park. What hasn’t changed is the rush, the surge, the high I get from logging miles. It’s not easy to get out there, but once you’re on the road- it’s hard to stop.

Let’s love our bodies, ladies everyone! Those 20 minutes you think are not going to make a difference, will make a heck of a difference compared to 0 minutes. Get out there and do it. Walk, jog, run, play catch, skip with your kids, play flag football with friends. Get active. Get healthy. And love yourself, love your mind, love your body.

I hope (when we’re ready) I carry just like I did with Addie- (all in the front):

Large photo: Exalt Photography Back and side pic: 37 weeks

Large photo: Exalt Photography, ~31 weeks
Side and back pictures: 37 weeks

For now, my middle is soft but my mind is strong. Run for sanity- reap the benefits of body:

Momma Belly

Momma Belly, May 2013

I hope you know how beautiful you are.

It is so hard to love yourself, especially when we have SO many pictures of our youth reminding us of the times when nothing jiggled! It’s a different love. I think of my pre-baby body as my first love, but as I evolved into wife and then motherhood, it’s a more mature love. A respect for what I’ve done in life and all I have yet to do.

Maybe someday I’ll love myself without trying, but until then… I repeat my mantra in anything but a full-length mirror!

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Delaware

And so… finally. How was Delaware?

It was amazing.
It began with me missing the exit, and ended with me in tears at Saladworks.
In the middle, I suppose, is what you want to read about.

We got up early on Thursday morning and prepared ourselves before dressing Addie in her finest romper (read: simple to get her in and out of). I must have been incredibly nervous, because I didn’t take one picture. Not a single one.

Once we were in my mom’s minivan, I set the GPS and headed to the closest Dunks. We loaded up on coffee and jumped on the PA Turnpike. My hands were sweaty, despite the chill in the air, and the drive went well. It turns out that Wilmington is only 70, or so, minutes from my parents’ house. Even missing an exit, we still got to the appointment early. We arrived and were directed to the clinic, where we were welcomed with smiles and open arms. But, enough of that- onto the meat:

We learned a lot of things in our 80+ minute meeting with Dr. Bober and his assistant, Angie Duker. These were the thoughts I’d had just the day after our trip about our experience so far:

We arrived at the train station just 15 minutes before we had to board. It was perfect timing. As we ran in through the thick drops of drizzle, Dave grabbed some milk for the coffee we had made, and we waited for the All Aboard to flip up on the Amtrak screen. We loaded ourselves onto the train; baby, suitcase, duffel bag, diaper bag, toy bag, lunch bag, milk cooler bag and car seat. Once settled in our seats, Addie took her bottle of milk. We pulled into Penn Station in New York a few hours later and I moved into a window seat. As we pulled out, Addie looked out the window, then back at me. Belly-to-belly, she plopped her head down on my chest and fell asleep for her nap. Right on time.

She awoke, her noggin popping up with a smile plastered across her face. Then a frown. Time to eat! Addie chowed down her milk and then happily cooed and spit for a while.

She was wonderful the whole ride; following her nap and eating schedules as usual- and making do with having to sleep wherever- including on my legs.

Then it was Thursday, October 11. The day began like the rest had in the previous week. I was up at 4:30am, unable to sleep through the night since receiving my copy of the sleep study. Mild disordered sleep.  What did that mean?

As Dr. Bober reviewed all the papers I had so carefully sorted (Medical Records, Birth Records, Early Intervention, Genetic Testing, Skeletal Survey and Results, Growth Charts), I was still nervous. Finally, he asked Dave and me what we knew about achondroplasia. I froze. What didn’t I know. I said a few things and he stopped me. We reviewed my biggest fears, from central sleep apnea to decompression surgery and hydrocephalus. We talked about milestones (I have some new charts… I will make a page for them!) and we discussed sleep. While Dr. Bober was not concerned, he did tell me to just keep an eye on Addie and if I notice any changes in her sleep to contact him. However, as of October 15th, when we went to the sleep specialist in Boston, we are scheduled for a second sleep study in March. The sleep specialist would like to see her central sleep apnea occurrences a little lower than they are. Who knew one person could need so many doctors, yet be deemed healthy?

Beyond that, we reviewed Addie’s soft spot and it’s measurements. We were told what to look out for and that a little bit of extra fluid is common, but nothing to worry about. We were told to feel her soft spot once a week. I check every night.

Dr. Bober also talked about spinal stenosis, and the difference between it being a feature of dwarfism and critical. I felt relieved to know that Addie doesn’t present with any signs of critical stenosis, but knowing that the first 24 months of life are where hydrocephalus, bowing and stenosis will most likely show up in childhood, I feel like I’m having a private countdown while I should be enjoying each day, I am bombarded with looking and checking and feeling and testing.

I know. I need to relax.

Then, we moved onto examining Addie: 23 3/4 inches, 14 pounds 2 1/2 ounces and a head circumference of 17.8 inches!
She can’t straighten her arms all the way, which is just another feature of dwarfism that many people have, and, after reading the doctor’s notes (sent to me in less than 3 weeks!), she shows some signs of bowing (bilateral genu recurvatum). Yes, I looked that up- as well as over 10 other “musculoskeletal” notes about appearance. We will be seeing Dr. MacKenzie in April, as well, and he will probably have more to say about that then.

There really wasn’t bad news, per se-,but there were some things to look out for and preventative measures that need to be taken. For instance, a common issue with achondroplasia is kyphosis. Addie presents with lower lumbar kyphosis (when you hold her, you can feel her spine stick out in her lower back):

The fear with this is that in the lumbar region of your spine, your bones sit parallel. If your spine curves the opposite way, the bones will grind into each other, causing the bones in the spine to break and look “bullet-shaped”, instead.

This is not Addie’s spinal x-ray, just an example.

When we hold Addie, we need to provide full back support. That includes when she is up against our chest, applying slight pressure to the base of her spine to help straighten it out, and when she is in our lap, letting her lean against us. Anything she sits in needs to be a hardback, allowing her to conform to what she sits in and not the other way around.

Pressure on the low back.
Leaning back to create spinal support.

Sadly, this limits our carrier time to never. I had always imagined myself a baby wearing mama, but having a healthy baby means more- and so, my arms are always full and so is my heart!

Addie’s first pic in the Bjorn… before we knew!

What IS good for her, however, is tummy time, as it brings her back into an arch… which is great! She is a happy camper on her belly, for the most part, and (as of October 27th) if she doesn’t want to be on her back, she rolls to her belly = A total baby-body workout!

Addie playing some music on her belly!

Some more interesting facts:

* Due to the shape of the ribcage, the liver is [usually] able to be felt. This is not true on an average height child, which is something to alert doctors of should they have a concern. Sometimes, it is falsely interpreted as a swelling.
* Addie’s arms do not fulling extend by about 20% at the elbow. This is totally normal, and should not inhibit her in any way. She does have lower muscle tone, primarily in her arms, but that is just another feature of dwarfism. As well, her limb disproportions were noted in her arms as rhizomelic, and her lower extremities are rhizomelic light. This refers to her arms as short (the long bones) and her legs as mildly (for a dwarf) short. She will, most likely, be around 4 feet tall.
* The diagnosis of achondroplasia could have been made with ONE x-ray of her pelvic bone! The blood test, however, confirms it.
* Dr. Bober feels Addie is doing great! (This is my favorite fact!)

And so, this is how Delaware went.

We met with a great family when our appointment was over, there were lots of smiles and handshakes and then we were leaving… and I was shaking. I was gripping Addie so close to me I could feel her little Buddha-belly flatten against me.

Dave and I decided that we had not eaten, and so we needed to get food in Delaware. (If you’ve ever seen me hungry, you know it’s a sight better left for horror films and psychiatry studies.) We made a left out of the hospital and came across a Saladworks- one of my favorite places to eat. We walked in and parked ourselves at a table after glancing at the menu. I knew what I wanted, and as I told Dave I looked over at Addie. Perfect. Small. Addie. And I grabbed Dave, locked myself in his grasp and cried into his shoulder. I cried for the relief that Addie is OK. I cried for the fact that she will have struggles. I cried because I have not slept through the night since she was born.

We learned a lot, and we will continue to learn. Thank you for taking this journey with me as a woman, as a mom, as a parent, as a friend.

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Is it the weekend, yet?

What a roller coaster week! If I never hear the word “no” again, it will be too soon.

I’ve spoken with numerous people, and by the blessings of the Universe, our case is in the Research Department of UnitedHealthcare. I’ve spent hours on the phone, mostly on hold… and when I’m not on hold, I’m spelling ” dysplasia” and “achondroplasia” and “Adelaide” for someone who doesn’t understand why she needs to see a specialist.  A woman actually scoffed at the idea that Addie needed to go “all the way to Delaware”. If that wasn’t insult enough, she asked me if I could get an appointment in Delaware, was I willing to travel. What kind of question is that? OF COURSE I’d be willing to travel- she’s my baby! I’d swim across the English Channel with her on my back, if need be.

So, this week was very frustrating, and I’ve wracked up minutes upon hours of cellphone use…

And I’ve made more connections and friendships  than we could ever hope for.

There has been a love and outpouring from a community, better known as the world, to help Dave and me with making sure that Addie can get the care she needs.  Word-of-mouth, Facebook, website shares and emails have helped us raise funding so that we can get Addie to NemoursAlfred I. duPont.  Knowing we will need to put down a deposit to even make an appointment and pay for a majority of the testing before we leave was making my stomach turn, but I took the advice of a few moms and posted a fundraising website.

And there was an outpouring.  Not just love from friends and family, but kindness from total strangers- people following Addie’s story and loving her without ever meeting her.

This beautiful baby cannot express her thanks, but we, the Martinka’s want you to know that we will forever remember everyone who helps us along the way.  We know that we will always need someone to talk to; ask questions or share a hug, but we are hoping to pay all the support we’ve gotten forward. We hope to make a difference for everyone out there who has no insurance, or insufficient insurance. We want people to be aware of dwarfism, and know that each of our children need to be cared for individually- and though they may need different care than other children, they have just as much right to it!

We will share the story of the first few months of her life with Addie over and over as she gets older. She will know the love that she has surrounding her- those who have never met her, those who have yet to and those who have kissed her little toes and smelled her sweet breath- thank you.

It’s a small blessing that the weekend means no one will answer the phones or give you an answer to any questions because the right person “isn’t in the office”, so here’s to the weekend. Here’s to community. Here’s to banding together for our beautiful Adelaide.

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I Knew Before You Told Me

From the moment she was born, I knew she was different. Adelaide Eileen was born at only 18 inches, with my button nose and crooked pinkies. What she was born without was what caught my eye.

27 years ago I came flying into this world with a shock of dark hair, flailing all 21 inches of my body in a fury weighing just shy of 5 1/2 pounds.  During the 3 hours I pushed with Addie, I remember seeing her dark hair, feeling her head and then seeing her little body.  She looked just like me, but, to be honest, squat. I held my little ball of baby, loving all over her and sharing with no one.

I wanted to ask the doctors a million questions- I was shocked the next day when her pediatrician measured her at 18 inches.
I knew before I asked.  I knew she was my genetic miracle. Our little package of jumbled up genes that was perfectly delivered to us.

A daughter holds her mother’s hand for a while and her heart forever.

I was so tired, but I couldn’t stop staring. She was the most beautiful human I’d ever seen.
Watching her grow, or not, led me to think something was up- but you only think to ask the doctors a question if you think there is something wrong. In my heart of hearts I knew there was nothing wrong, just different about my little Addie. Then I read all about it. Her head was big. I was so scared. Could she have hydrocephalus? I researched all I could. I took Addie to her 2 month appointment and mentioned it to the nurse doing her measurements. She inferred that it was something she was going to mention anyway, due to her head circumference growing, and my heart sank.  I wanted to hear “don’t worry about it.” But, as you know from my first post, we ended up leaving that appointment with a script for a ultrasound of her head and x-rays of her long bones.

I took her home, undressed her and examined every inch. I saw her inner thighs and how small her hands were. The non-existent bridge of her nose. The way her legs bowed out. I saw her face, with those shining, deep violet eyes staring up at me. And she’s perfect.

After her diagnosis, Dave and I told a few people. Looking for initial reactions- a way to gauge our responses to people and learn what kind of reactions we would be fielding. And, as if getting unexpected news wasn’t confusing enough, the other shoe dropped.
People said they were sorry. Dave and I found ourselves trying to stop people from saying the wrong thing. Did we tell the wrong close friends? Was it something we said?

Nothing is wrong with her. Why are you sorry? We’re not.
It’s not unfortunate. We’re beyond fortunate to have  be chosen by this baby girl.

I knew she was the most beautiful girl from the moment she was born. She is loved to the core- and being so small, that’s a lot of love per inch!

I knew before they told me. I knew she was going to be the best thing to ever happen to me. I knew it. And I love every little bit.

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Corporate America. There’s Hope.

I was disappointed.  Using a baby carrier was amazing to me. I was a baby wearing mama. Holding my little girl to me while I did everything from the dishes to walking the puppy, felt so pure and natural to me. I love the Bjorn which has more support, but the organic look and feel of the K’Tan was just what I wanted, and I was lucky enough to have a friend who purchased it for me!  I used it once, but Addie was so scrunched in it, I decided to wait to use it for a few weeks; then we learned she was an achon baby, and my little miracle could not use a carrier.

Scrunched Addie (see above)

No carrier.

I walked into the small local shop where I got the K’Tan. I explained that for medical reasons Addie would not be able to use it, and that it was clean, had all the pieces, it was in the box and had the instructions and warranty card.  The woman behind the desk glanced at me, her eyes darted to Addie, then to a piece of paper, where she was writing a note. “Your name and number. “ *** “I’ll ask the owner and call you later, but I already know the answer is ‘no’. We don’t take anything back that’s been out of the box.”  I was confused, as the carrier is clean, and there is one in the store, on display- out of the box, that they will sell. I assured the woman that I just wanted store credit, but she seemed to be distracted, so I wheeled the stroller in a k-turn motion and walked out.

I left the shop feeling dejected.  I would have loved to shop in this store again- support a local business. I was sure that the owner would call, or understand, but a message, “Hi Chelley, this is Xxxxx from Xxx XxXx, I spoke with the owner and we can’t take it back. Sorry. Bye.” Short, not sweet and not helpful. Instead of helping a local mom at an already difficult time, the almighty dollar takes the cake.  Instead of spending a few hundred there over the next few years, they made $74 on one sale. One time and one time only.  What a disappointment.  I would wanted a call from the owner (this truly is a small business)- to perhaps speak with her.  In a small state, like Rhode Island, all the business you can get includes everyone, right?

Please know that I am married to a small business owner. The business is my husband’s passion: music. Often times he has had to turn people away from full-fledged returns in favor of store credit, but he always takes the time to discuss issues with his customers- and speaks to them personally. To be told, “no”, was a lot to take, especially because the woman I had spoken to was so sharp with me and didn’t seem to hear what I was saying. I love the carrier, but medically I can’t use it. Isn’t the human condition a benefit here? The rules can be changed. Exceptions can be made. But, you have to listen.

And not I have to make the request that  no one give Addie gifts from small shops… clearly they cannot bend to be helpful to a new mom who is in apparent distress. As people serving people, looking up to see your customers, instead of down at your phone/keyboard/notepad, would go a long way. Sometimes you just want to know you were heard before a decision is passed down.

At the end of this debacle, I posted the carrier on line for a fraction of the price… and my big sister saved the day. A new mommy herself, she posted on Facebook and asked around, finding a buyer!

Sadly, however, this was just one of the few items that I was told “no” to on behalf of Addie.

Which brings me to Babies R’ Us in Warwick, RI.  I originally loved the idea of registering at only small shops, but knew we would need far reaching locations due to my family being all over the east coast (and some on the west, too!)- so BRU it was! I’ve been so happy with their assistance in returns and exchanges since the baby showers, and for this alone I was so grateful.

The Baby Einstein Bouncer was awesome! I remember seeing it and wanting it immediately; colors, lights, music and a ton of tactile activities. I was sure Addie would love it as much as I would.  Alas, this was not to be so.  Not a big deal to return, right? Wrong!!!

The box that the bouncer came in was cumbersome, so we took the inside boxes out of it and tossed the main packaging into recycling months ago; a small blessing that we never put it together. Driving to the store with Dave, he was convinced they would not take it back, while I was plotting my steps from pleading with the manager to writing corporate. We loaded our returns into a cart, including the pieces of the bouncer.

As we stood in line, I was already frustrated. Why do I have to explain things, why can’t “due to a medical condition” just be enough? I walked up to the counter with my cart full of stuff and explained, “I’d like to return some toys. I’m sorry I don’t have the main box for the bouncer, but it’s never been put together.” Michaela smiled at me and asked if we had been registered there. I felt the need to continue, “I really love the bouncer, but for medical reasons Addie can’t use it.” She glanced up from typing in my information and warmly smiled again. “No problem”, she said. While making small talk and commenting on how adorable Addie is and how she hopes she is OK, the sales associate scanned my registry info, found the bouncer, scanned the rest of my stuff, swiped a merchandise return card, handed it and the receipt to me and wished me a nice day.

I walked over to Dave, who was feeding Addie her favorite [and only food], Mommy Milk, and wanted to cry. I was so pent up, convinced that the world was against me. That, already, there were issues that would hinder Addie, but Babies R’ Us proved me wrong. A corporation caring about its customers, though I’m sure not always the case, has brought some light to the sadness I feel having to return toys that are not good for our beautiful little girl.

We got this beautiful elephant, a mirror, finger puppets, 2 books and an impression kit for Addie’s hands and feet with the credit. I think these will be great to help Addie’s development for touch and vision. I’m so excited to play with her new toys and help her develop at her own pace in a fun way!

Knowing that I shouldn’t give up on the world lending a hand is a good feeling- especially because this is just the beginning of a long road.

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Community

I belong to a New Mom’s Group with RI New Moms. All of our babies are in the 0-3 month range. All of our babies are learning to coo, watching their fists and balling them up into their mouths, tracking things with their eyes and growing up faster than we’d like. All of our babies are the same, yet different, and I’m so glad Addie’s different was so lovingly embraced.

I tried to tell everyone in the group about her hospital stay and how we learned of her diagnosis in an unorthodox way.  I wanted to make eye contact, but I couldn’t stop looking at her. I was preparing for people’s faces to drop, to see wide eyes, hear a gasp that inadvertently made its way past someone’s lips. But that never came. Smiles, head nods, and looks of compassion not pity, were all around me. Addie would be loved by these women, just as she was loved by myself.

Communities seems to be fleeting in some cases. Friends we make at one intersection of life sometimes fail to crossover as we grow, change and, ultimately become who we never thought we would be: our parents (HA!). But, I need people. I need a community of men, women and children who can tell me I’m doing the right thing for Addie.  You can never know exactly what your child is going through in life; kids get meaner by the year, after all. However, I will never be able to tell my sweet baby girl that I know how she feels because I’ve been there, too. I can taste the bitterness in my mouth, feeling like the angst-y adolescent I was over a decade ago. I want to tell those kids off and push them to the ground. I want to lose control. I want to make people who have yet to exist, hurt for reasons yet to manifest.

And so, I wait.

I watch her little chest rise and fall. I tear up every time she smiles in her sleep. I have done this since she was born. I’m boarder-line stalking my child.  I cannot help it.

I mentioned to Dave, multiple times, about how I am so shocked that she is here. One minute she was in me and I felt her move, and with each new happening (a flutter, a kick, hiccups), I felt like now this is real, but now she is here. She is lying next to me in her pink bassinet and she is real. She is real and really amazing. And she is mine. She is ours.

I suppose never having carried a life, Dave can’t totally understand my feelings, but he loves his “little bit” and I love my “bugga-boo”. We, collectively, have about 300 songs for her, stemming from the multitude of names she has, ranging from Addie-Boombaladdie to Battle-aide (when she’s battling sleep) and so many more.

When it all gets too much, and I need someone, I reach for my cell phone and email someone. Some I’ve just met in one of the many communities I’m coming to form as the cohesive guild I need for me, while some I’ve known for years and have stood the test of time.

The outreach has been unexpected. People who know people. Friends who have friends. Getting an email from someone who knows someone, or is someone who is a little person- reaching out to me, making themselves available and knowing that I just don’t know what to expect. I want to do what is best for Addie- always. I want her to have the experience she deserves in life and every opportunity afforded to her peers- whether they are large or small, short or tall. Just perusing Facebook pages and other blogs, I see happy families, college-bound students, sporting events, vacations, boyfriends, girlfriends, and happy hours.

And I am at ease.

There is a community who will help us raise Addie- it takes a village, after all. She will be loved by many, and feared by some.

But aren’t we all?

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