Tag Archives: achondroplasia

Listen to Me: Marvelous Monday

I’ve grown up, bought a house, married, gotten a puppy, had a baby, cooked a few thousand meals, given up part of my identity to be known as Mom or, more accurately, Addie’s Mom, I decided to stay home (at least for now), and I have a handful of friends I could not get through life without… then I met my fellow Rhody Bloggers and that changed. I met people that I didn’t want to live without. Women with stories that made me cry til I was dry, laugh til I was crying, buy products I never knew existed and teach me how to be a better Mom, wife, friend and human. This week, and every week going forth, I will be thankful that I was able to be a part of Listen to Your Mother. I didn’t make the show (you can read about that HERE), but I got to see it, live the moments each woman bravely shared- whether it’s a life lesson about grocery shopping with kids, how we struggle to overcome our insecurities, having emotions we wish we could control, about our mothers shaping us just by believing in what we could do- I lived it. I sat between two new friends of mine, as we each shed tears, shared laughs and then drinks after the show- it was an experience I will treasure always. Thank you to Carla and Laura for producing the best first LTYM: Providence!

Me, cast member Jackie Hennessy of Venting Sessions, Carina and Tera of Girl Gone Healthy

Me, cast member Jackie Hennessy of Venting Sessions, Carina and Tera of Girl Gone Healthy

We are doing very important work with our pens... like math.

We are doing very important work with our pens… like math.

New friends and snuggle buddies <3

New friends and snuggle buddies <3

 

My random of the week is… GET IT DONE NO MATTER WHERE YOU ARE! If you’re not following me anywhere but here, maybe you haven’t been as inundated as you should be with my Girl Gone Healthy posts. Well, that sucks for you! Tera is an inspiration as a woman, wife and mother- not to mention a warrior. This lady gets it done, no matter what. I’ll keep it brief, but the next time you say you can’t get your workout in because you have to get the food shopping done, you darn well better park FAR away from the front door. This is Tera this weekend, in heels, walking the 4 flights of stairs (she did it 3 times) to get a little workout in. And stairs? They’re no joke.

In heels, 4 flights, 3 times. Get it done.

In heels, 4 flights, 3 times. Get it done.

Lastly… dwarfism! Lots of people have pointed out Addie’s belly, so much so, that I began to get concerned. As I have done many times before, I turned to my POLP (parents of little people) friends and asked: is that normal? I kind of loathe the word, but truthfully… we all have our own normals in life. But I digress… here is some information about why there is a belly on the little beauty (besides the fact that she eats very healthfully… and completely). Children with achondroplasia often have lordosis, or sway back. This makes the belly look like it’s sticking out more. A smaller chest also gives the appearance of a large tummy. Other factors: smaller space leaves the belly the place where many achondroplastic children show weight and it’s super common that after eating the belly is visibly more full!

As I wiped my forehead of worry-lines, I looked over at my sweet girl. That belly so many like to point out: it’s beautiful. It’s ticklish, it holds many kisses, it flattens out against my body as we snuggle in the morning, it rounds to my hand when I carry her facing out, and fits right underneath my chest when I carry her to me. I love that belly.

Belly I Love

**AND WE HAD A FIRST THIS WEEK… JUST WANTED TO SHARE: Addie climbed up a step!!!!

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LTYM

So… as I’m sure many gathered, I was not chosen to be a presenter at Providence’s inaugural Listen to Your Mother show. Instead, I am still choosing to participate. I will be going to support some of my favorite friends and bloggers as they share their stories and undoubtedly make me laugh, cry and reflect on life as a woman, a mom and a wife. HERE is the announcement post!

Because I wasn’t selected to read, I will share my piece here with you now. It may seem familiar, as it is a brief edited and slightly different version of my first post.

I’m not sure where to begin. I could go back to camping.  That amazing 2-days my husband, Dave, and I spent in Maine, creating our beautiful daughter.  It wasn’t really romantic, but it got our minds off of the previous 6-week troublesome time, which began with an early pregnancy miscarriage- often referred to as a chemical pregnancy.  In the weeks following, when the cramping eased, and the doctor reminded me that we could try again right away, we knew we needed a weekend away.  With our handsome puppy at doggie daycare, we took off to Wells, Maine.

It was a beautiful weekend.  And we made Addie.

A few weeks after we got back, I got a faint line and after watching the timer flash for 3 minutes “PREGNANT” popped up on the digital screen.  Excited, but scared to repeat the past, I tried to hide my findings from my husband; but, a few hours after he went to work, I texted a picture of the test to him.

***

Hearing her heartbeat was the most beautiful music ever created.  Rapid and deep, hearing her life beginning in me was one of the best days of my life, and over the following months, I took the tests, ate well, gaining only 26 pounds, and was then blessed with a beautiful, but long, delivery at 38 weeks, 5 days.

A clear-lunged Adelaide Eileen came into the world April 17, 2012 at 10:32am at 7 pounds, 7 ounces and 18 inches long.

18 inches is in the 5th percentile for height in a newborn.

At Addie’s one month check up, her head was in the 75th percentile, weight 10-25th percentile and height still in the 5th.

At two months, her head was in the 90th percentile, weight 25th percentile, and her height had dropped below 5th.

I cried.

We left the doctors’ office with an appointment for a fontanelle ultrasound to check for Hydrocephalus and another for x-rays of her long bones.  At 5’7 and my husband standing 5’9, I was unsure how we had such a short baby, but her head was our main concern.  Along with the appointment at the radiologist’s office, Addie left the office with thighs sore with vaccine shots.  Later that night, June 19, 2012,  a fever of 101.5 struck, and was just the beginning.

***

At 7pm, June 21st, we arrived at Hasbro Children’s Hospital in Providence, RI. Addie presented with a mild-grade fever, lethargy and a lack of appetite. She endured hours of IVs, needle pricks, blood draws, a CT scan and four, yes four, unsuccessful attempts at a lumbar puncture.  Without the spinal cord fluid needed to run a meningitis test, Addie was started on broad spectrum antibiotics for the night.

A tentatively negative read was done of her CT, for everything, including Hydrocephalus- a concern due to the rapid growth of her head. Although this brought relief, there was another test we knew needed to be done for her general heath (an x-ray of her long bones), and there was the issue of what was making her ill at the present moment.

***

A call from our pediatrician to the attending physician in the hospital prompted the bones of her body to be x-rayed, specifically the long bones in her arms (upper) and legs (thigh), pelvis, spine and skull, which took all of 10 minutes and we were wheeled back to our room.

A geneticist came to do some measurements. I felt hot and sick. There were tears forming, but, as a mother, I had known Addie was too short for her age. We discussed nothing specific, only mentioning that there could be a genetic anomaly, and that’s why she was called in to look at the x-rays. As the doctor left the room to read the x-rays herself, I held my knees to my chest and practiced breathing.

When she returned, I was cleaning out my breast pump pieces in scalding water. She pulled a chair up to talk. I stayed at the sink, burning my hands in the water. When she didn’t continue her diatribe, I knew the x-rays had shown something. I finished washing the bottles and made small talk. If I never heard what she had to say then she had never said anything. Right?

“After reviewing the x-rays with the best radiologist in Rhode Island, we have both confirmed the diagnosis of Achondroplasia,” Doctor.
“What’s that mean?” Dave.
“Dwarfism,” I said. Blankly staring at something that wasn’t there.

Nurses were sent in to do a blood draw on my 9 ½ week old baby. It took 7 attempts and two days to complete. The conclusive results came back in a few weeks…

The most common skeletal dysplasia is achondroplasia, a short-limb dysplasia that occurs in about 1 of every 15,000 to 40,000 babies born of all races and ethnicities. It can be caused by a spontaneous mutation in a gene called FGFR3, or a child can inherit a change in this gene from a parent who also has achondroplasia. The average adult height for someone with achondroplasia is a little over 4 feet.

The information runs far and is quite plentiful.  In the United States, approximately 10,000 individuals are estimated to have achondroplasia. It affects about 1 in every 40,000 children. However, this number varies, depending on the source. Eighty percent of all little people have achondroplasia. Approximately 150,000 persons have achondroplasia worldwide. The worldwide population of little people is approximately 190,000.

People don’t know what to say- I’ve already encountered that. But if I may be so bold as to make a suggestion, if you don’t know what to say, say nothing.

I can’t say that I’m not scared, or angry, or confused, or hurt. I can say I’m so happy, blessed and in love. Little people live normal life expectancies and can do anything they want.  It’s not a disease. She does not need to be cured.

She cannot ever do gymnastics.  If I said this didn’t hurt me, I would be a liar.  I was a gymnast, and some of my fondest memories are swinging my long and lean body around the bars, sleep over camp and long drives to state meets. She cannot participate in other little girls’ gymnastics parties. But, she can swim- and I look forward to every mommy & me swim lessons like it’s Christmas day!

And here I am. I’m angry.  I’m really angry. I’m so ashamed of myself for, potentially, making life harder for her.  I am, in my mind, at fault. I want to help her be the strong girl I know she is, but how can I do that when I’m falling apart on the inside? I’m angry this will impact her. I’m angry other children won’t get it. I’m angry that people in her family, at least not everyone, will understand and respect and be “ok” with her stature. I’m angry people may point, laugh, call her names, misunderstand her, and hurt her. I’m angry, damn it. I really am.  Perhaps some of my fears are masked by this anger, which I’ve always been so quick to feel, but for now I’ll call it a pure emotion and hope it unfolds well.

As I watched her sleep in her hospital bed, I saw she’s the most beautiful girl I’ve ever seen. She has my little nose and crooked pinkies, and Dave’s ears and lips.  She is an angel. She’s a perfect combination of the man I will love forever and myself. Maybe she’s not your ideal baby- but she’s certainly my ideal: happy, healthy, with dimples, bright blue eyes, 10 fingers and toes, sweet baby coos, and a sigh that ends with her collapsing on my chest.

In truth, as I wrote this, she was getting better from whatever brought us to Hasbro in the first place; No fever, less lethargic and eating much better. But she was still there. I battled with her being sick and getting a lifelong diagnosis that I’m not sure the right way to process.  I reveled in the good news of no hydrocephalus and the shock of knowing my daughter will be physically different from other children.

I am scared of my reaction to other parents, when they tell me of milestones their children are crossing, as Addie’s motor skills will be slightly delayed. I am wondering what life will bring to her and how I can make sure she has the best one possible- as any parent does for their child.

Over the past few months I have tried to take all the information thrown our way in stride, and remember that some questions will remain unanswered until she reaches a certain age and the universe reveals its mysterious ways.  I’ve contemplated if I had known she would be a little person before she was born, would I feel differently… no.  I wish I had had the time before she was born to process, as it is hard to shed tears when I’m looking at her beautiful face; but I will let my emotions take their course, rely on the love Dave and I share and the information at hand to be the best parents we can be.

And so, I conclude.

‘A’ is for Adelaide and Achondroplasia.

I want to say that my writing is too specific, but I think it has to do with my presentation skills (or lack there of), as well as the fact that the women I know who were selected are A.MAZ.ING. Not just you’re such a good writer, I could never write like that. More like I should never write again because I am a disgrace! I say this in jest. So many of us are not only wonderful writers (and readers), but we are fantastic daughters, mothers, wives, parents, siblings and aunts. We are free spirits, organized and brilliant with all we do (and sometimes, not- but don’t tell).

I will tell my story for a long time… forever, in fact. I will share about my fears and insecurities, because it’s OK to feel that way and I hope all parents know that when they receive any unexpected diagnosis.

I hope to see all the seats filled at the show this year. Buy your tickets HERE and come sit by me… I’ll have tissues with me. And in case you’re wondering… I’ll be back to read another piece next year! I think I can… I think I can… I can!

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Marvelous Monday!

So, It’s been QUITE the weekend. I think I am stressed for the next two weeks before they even happen. Don’t you hate when you do that to yourself?! I am combining MM with Mom Before Mom because… well, sometimes life just all comes together in sweet harmony. Read on!

This week I am thankful for my beautiful girl and her power of healing. We had a wonderful visit with the ENT two weeks ago to check on her tubes and they’re doing great! She seems like she is hearing SO much better, but I will have more conclusive, scientific results after our audiology appointment in May. Until then, we are back in the water and loving out new ear plugs- they’re even fun to try and eat!

Ear Plugs

Which brings me to the Mom Before Mom prompt from All of me Now this week: What was the first piece of music you couldn’t stop listening to? What was the first piece of music you bought?

I am so glad that Addie can hear! I can say that I remember driving my sister crazy when I was about 15, listening to Dave Matthew’s Band over and over- more specifically, Every dog has it’s day every day has it’s way of being forgotten- “Mom it’s my birthday.” What would you say?, and then restarting the song. Ah, the joys of newly made compact discs.

But my first favorite memories of music are the nights after Flyers’ games, when I was half asleep in the back of the car and my Dad put on Oldies 98fm Philadelphia for Doo Wop Sundays. As I drifted off to sleep, knowing that I would wake up in the morning safe in my bed, I listed to some amazing songs like Earth Angel, In the Still of the Night, Sixteen Candles, I Only Have Eyes for You, Why do Fools Fall in Love, A Teenager in Love, Pretty Little Angel Eyes, Life is But a Dream, Blue Moon, Tears on my Pillow, Sunday Kind of Love, Since I Don’t Have You, and my all-time favorite Unchained Melody. These songs all bring me back to a time where I knew (almost) nothing bad in this world existed. Where all evils could be cured by a hug from my Dad.

I want this for Addie. I am thankful that Dave and I can give her the gift of music, and that Dr. G was able to give her (back) the miracle that is hearing. Dave is a very talented musician and he needs to share that with her. I want to give my little angel all the happy memories and related history that comes along with different musical eras. To cherish memories that were both mine as a child, and my Dad’s (him being young in the 50′s and growing up with this music), gives me the “old soul” I’m said to possess. Passing on my love of music is something I am proud to give to Addie and cannot wait to share with her more and more as she grows into her likes and dislikes… or maybe I can wait- if it means NOT having to listen to the same Sesame Street song over and over and over!

* * *

This week, in light of Easter, I’d love to focus my information about dwarfism to weight. Addie had a beautiful Easter shoot last weekend, as a model for one of my wonderful friends, Lynette, owner of Exalt Photography.
Exalt PhotographyYesterday was Easter and we had a beautiful time as a family! We went to Home Depot, snuggled in, boiled eggs we never dyed, and had a wonderful dinner at my bestie’s house… we also had an Easter basket!

Easter Basket

… with no candy or food of any kind involved. Someone made a point of emailing me to tell me that I shouldn’t feel superior just because I don’t give Addie sweets or candy because she’s young and I will someday. My response, quite simply, is OK. I don’t feel superior to anyone for any reason. The feeling that you need to email me to tell me that giving Addie candy and sweets is in some way inevitable is a given, makes me wonder why you are so passionate about this issue. She will have these things, but they do not have to come from our home. In no way does that ever need to happen. Will it? Sure. But I have made a parenting decision- equally with Dave- that sweets and treats will not be a part of our holidays. Instead, we choose books. Addie has gotten a special book for each holiday thus far. Perhaps she will get a special DVD one year, or a specific outfit. But, there are so many opportunities for junk outside the home, there is no need for me to spend my money supplying such things. It is not a judgement on what others do… it is just our prerogative.

With that being said: lots of other children do not have the automatic predisposition to obesity. Not being overweight. Obesity. I am a healhty person by nature. I like salad, I enjoy running and I come from a family of athletic people. While Addie is partly my genetic make-up, she is also Dave’s, who comes from a less athletic family. And she’s also something completely different from us. She is her! Children with achondroplasia have a high-risk for weight issues. I’ve been on a few sites in the last 10 months that have parents asking for dietary tips for their achondroplastic children… their 4 to 7 year olds, who are being placed on dietary restrictions because of their weight. That is terrifying to me. In a world where primary concerns are looks and weight, especially for girls, I am concerned for Addie. I want to give her the right foods now to avoid the issue of childhood dieting (which can have terrible emotional consequences, and often times don’t last) later. If Addie doesn’t have fast food (which Dave and I do not ever eat. Ever.), juices (they’re all sugar) or cake and candy, I won’t be setting her up for failure. Just a bite here and there at home, as regulated as they are, do not account for what she will encounter outside the home. Just a few extra pounds on her will effect her hips (she has dysplasia), knees and ankles, not to mention her spine- in-which she has some minor issues now.

It may seem like we are “hippy-dippy” (as I was recently called and chuckled about) because we have no TV, we don’t ever go through a drive-thru and I refuse to give Addie junk food (she snacks on peas- and rarely her auntie gives her puffed cereal), but I’m truthfully just trying to give her the best start to life as I can. How many play dates will be spent playing a video game or watching a movie (she still has never watched a movie)? How many parents will grab chicken fingers from BK for dinner when Addie gets a ride home? How many birthday parties will have pizza, cake and ice cream? A lot. I want Addie to learn about wonderful raw foods, foods cooked with love and care- prepared with whole ingredients that she can identify and learn to use in her own ways. I want Addie to learn how to play outside in the hot Summer sun, the warm Spring air, the brisk chill and leaves of Fall, and the snowy days in a New England Winter. I want her to like to dance in the rain, the way I do. There wasn’t a reason to be inside (except for lightening and thunder) as a child, and for that reason I am an active, healthy adult.

I guess as crazy as I seem, I am not trying to restrict her from ever having certain foods or watching TV, but I make the conscious decision to not have them in my home (for my sake as much as her’s), and to not spend my money on them. What other people do and all the elements of the world… they’re not something I can control. Addie will make decisions for herself as she gets older, and I will make those decisions for her now, as other parents do for their children. Sometimes Addie will be in the crosshairs of our family values and others. That’s OK! That’s growing up and becoming your own person- acceptance, respect and, at minimum, tolerance of other values are wonderful life lessons. I never ate Big Macs and therefore I never want one. I don’t battle with weight or weight-related illness. It’s just that simple. Many things in Addie’s life are bound to be struggles. With a healthy lifestyle, weight doesn’t have to be one of them.

* * *

My random of the week (of which there are two) is a BIG Happy Birthday to my amazing hubby Dave and his business partners Domenick and Jamez. Their business BSharp has been open for TEN YEARS!!!!! It may not be what keeps us afloat anymore, but it is an accomplishment to keep a business alive for 10 years, especially in this economy, especially in Rhode Island. Just ask Curtis Montague Schilling, also known as Curt, who couldn’t make a business work with 75 million dollars. I digress. Happy birthday, BSharp! I love you, Dave. I am so proud to be the wife of such an amazing, dedicated man. Working two jobs to keep your ladies together means more to both of us than we could ever tell you <3

Bsharp

Second… IF YOU HAVE DRESSES YOU WANT TO RID YOURSELF OF AND ARE IN THE AREA…
Dresses

It’s back – Say Yes to the Prom Dress! The Pawtucket Community Partnership Team Against Violence are looking for donations of gently used prom dresses! Make arrangements to drop off your clean and generous donations to make a teen’s DREAM COME TRUE by calling us at (401) 723-3057 by April 12th.

Addie and I dropped off 15 dresses last week

Addie and I dropped off 15 dresses last week

Dresses 15

We will pick dresses up from you and make the delivery! It’s so easy to help!

Have a fantastic week, Reader!!!

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Listen to me roar!

This past weekend I was blessed to be a part of, hands down, the most empowering experience of my adult life. Listen to Your Mother auditions were this weekend… I don’t know that I nailed it, or even did well at all, but I do know that it meant more to me to just get up there and read my story in front of two of the most amazing womenbloggermoms I’ve ever had the good fortune to meet.

If you know me from college, you may remember the time freshman year I was speaking in my Honors English class. For some inane reason, I thought it was a good idea to pick my favorite poem that made me think of my Dad. I was reading Don’t Grieve For Me Now as my choice- My other favorite is Wasteland, but it’s SO long, I knew I would lose the class after line 3… I began speaking from the page in front of me, looked up, smiled, held up my index finger to signal them to wait, walked away from the podium to the glass door, picking up the wastebasket on my way out. I closed the door behind me and proceeded to vomit into the small plastic bin (thank God for trashcan liners). I pulled the bag shut, tying a knot, walked back into my classroom (where everyone looked like they had just witnessed a war), and finished reading. Complete with tears.

Suffice it to say: I am not so great at public speaking. With all the CPL (if you know what that stands for, you’ve been reading for a while) stuff going around, and news cameras and writing more frequently, I’ve become more comfortable in social situations where I don’t know many people, or anyone at all. I think my newer confidence may also have something to do with becoming a mother. It just makes one less inhibited and more able to speak up! In my 38 weeks of pregnancy and 36+ hours of labor, I had more people check out my body than one weekend in Virginia Beach in my late teens… and I looked GOOD then! Once you’ve shown it all, birthed life from your loins and actually want to do it again, I guess something inside mama says what’s next? and you better have something to offer that inner voice, before it gets too quiet. So, I let my voice rise and shouted from the roof of my mind! I wanted to share my story about learning of Addie’s dwarfism. I wanted to show people the softer side of me- the darkest moments of becoming a new mother, when your baby is in a hospital bed and there is nothing you can do… as well as the brightest moments, when your infant somehow offers you more comfort than you to her. And so, I shared an edited version of the first post on this blog called A is For Adelaide and Achondroplasia. Here is a little bit about the audition:

As I laid Addie down for her nap just moments before I had to leave for the Providence Library, I felt my stomach turn. No time to puke… I ran out the door and into the first car in the driveway- Dave’s Forrester. I pulled out into the road and was on my way. Holy crap, was all I could think.

I parked the car close to the library and put just 2 quarters in- a decision I regret- and walked into the grand building (where just weeks before I witnessed my friend, Tim, propose to his fiancée on just that corner where they shared their first kiss!!! SO ROMANTIC. And I digress). As I took the elevator to the third floor, I was repeating the mantra breathe to myself. I took the clipboard, as was noted on the sign outside the audition room, and filled out the requested information. After wringing my piece in my hands, Carla and Laura come out to get me.

I had no idea what to expect, I’d just recently learned about LTYM, and was excited that I was even chosen to read my submitted post from this blog. But their welcoming demeanor, and the fact that there was candy in the room, made it a much lighter experience. Earlier in the day I had gone on my first Team in Training run, and so I was able to resist temptation, but something about candy on the table (Angry Birds gummies?!) makes everything less formal.

I began to read. Somehow, I could not pry my eyes off the page. I was filled with self-doubt and mortified that I was telling these women, verbally confirming what I had written, that I had been scared of Addie’s diagnosis and that I was angry at myself. Then, a surge of pride ran through me- I was telling my story- a story felt by thousands who were afraid of the same things I was, and also too ashamed to share their stories. You might think that children choose their parents, as I do, but that doesn’t make the decision seamless. There are obstacles and hurdles one must maneuver and jump in order to cultivate relationships. These do not end after a certain stage in development, this is life. This is the work it takes to make a marriage flourish and parenthood so rewarding. Things don’t happen to those who do not make them happen for themselves! There is no shame in admitting that sometimes it’s hard to do it all. We ask for help, we shed a tear, we learn to love- everyday.

I tried to pull my eyes up to my audience of two, praying that they would enjoy my piece, choose me to share with my community and to not cry. My eye contact was terrible and the knock on the door threw me for a loop, but I did my best, and I cannot ask myself for more. I did not throw up, quiver, cry or make excuses of why I could not go. I think I did great! I am not a public speaker- yet- but I am just 28… I have at least 100 more years of good living in me.

I regret the 2 quarters because I could not pry myself away from Carla and Laura, and we ended up talking long enough for me to get a $25 ticket! Oops!  When I got home, Dave just smiled about it- it’s my first ticket since we bought the house (we used to get them randomly when we lived in the city)- he was so proud of me for completing my goal. When Dave hugged me, I knew I had already been chosen. Whether I read or not in the show, I’d been chosen by this man to be his wife, to mother his child(ren) and to have him stand by my side.

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Marvelous Monday!

Hello, Reader! I hope you had a wonderful weekend, and did not imbibe too much! If so: Advil + Tylenol and have a pint of slightly salty water and lots of plain water… at least that’s what my college taught me ;) I spent my Sunday celebrating my little beauty’s 11 month birthday… where does the time go?!

Addie11Months

This week I am thankful for wine stoppers! You know when you open a bottle, and you know you won’t finish it (at least you hope you won’t), but you tore the cork to an unrecognizable heap of flakes-that-once-were? That is where stoppers come in handy. I got a nifty owl-topped stopper as a gift (post-baby gifts are pretty amazing) and I am SO glad. It’s cute in the kitchen and makes me feel a bit fancy. For those times when you’re trying to open the bottle of wine with one hand, while you stir dinner, soothe the baby, finish the dishes and feed the dog with the other- my wine stopper has saved me! I no longer have to look to where the cork went to, pry it off the corkscrew, or figure out how to slam it back in there after I let it breathe and pour myself a glass… thanks to this awesome invention. Cheers to you Monday warriors- may your evening [glass] be filled once tonight, and the remainder saved, nice and fresh for tomorrow!

I am excited about this week, because I have some information about dwarfism that is both interesting to learn about, and crucial to new POLP (parents of little people). This weekend, new parents asked me about getting an MRI for their child who is not suffering from pain or sleepless nights. This child is just a few weeks old and also has achondroplasia. Addie just had a sleep study, and I think that’s what prompted this email to me.

Background information: Spinal cord compression is very common in people with dwarfism. Compression is the narrowing of the foramen magnum (at the base of the skull) causing the spine to become pinched. In many cases this narrowing causes pinching on the nerves and can cause pain, as well as central sleep apnea, which is when the brain tells the body to stop breathing. Without the presence of pain, it is hard to diagnose compression without an MRI or a sleep study. Due to the American Pediatric Guidelines on what tests should be performed for a child with achondroplasia, many doctors automatically prescribe an MRI. Because you have to be perfectly still for an MRI, many children are put to sleep for the process. Anytime someone is put under, there is a risk. For very young children, there is a higher risk. For someone with different spinal complications than an average height patient, there are more concerns and risks. With that, people with dwarfism often go through many x-rays in their lives, and the more you are radiated, the more you become susceptible to diseases that stem from radiation. With that being said: specialists in the genetic study of skeletal dysplasias suggest a sleep study (or multiple sleep studies) to rule out compression long before they suggest an MRI. Again, this is without the presence of pain. If there is pain involved, there are other factors that will be discussed in terms of necessary imaging and testing.

So… I wanted to share some of my responses with you. I think it is both educating and enlightening. While there are so many questions as to what is right or wrong for your child, I find myself, with other parents, wrestling with some heavy decisions about excess imaging (Addie is x-rayed every 6 months for the first 6 years of her life as a standard procedure with her geneticist), surgeries, testing and the big decision Dave and I made to spend time and money driving Addie to Delaware twice a year (305 miles each way) to meet with the top geneticist and leading orthopedic doctor specializing in skeletal dysplasia. We seek information about who is the best neurologist, ENT, pediatric dentist who has seen dwarfism, EI specialists who understand the physical limitations of younger children with achondroplasia… the list goes on. But, here, I’d like to focus on the idea of the MRI. I feel it is not necessary without presentation of pain AND/OR a negative sleep study showing an excess of central sleep apnea occurrences, with or without a severe loss in oxygen efficiency in sleep.

I am not a doctor. What I say below are my opinions as a mother. The stated opinions below should not be taken as medical fact or used as your final decision without consulting a medical professional. Here is our back and forth. I edited some information so that this family would not be recognized.

Our child is currently only 6 weeks old and the doctor wants to schedule an MRI, in which he will have to be sedated. It just scares me to have someone so little sedated, especially with all of the complications associated with sedation

Why an MRI? Is he feeling pain, in your mind? Addie has sleep studies instead of MRIs because I won’t put her under for imaging.
Is it a geneticist or pedi? Do they have experience with achons?

Currently it is the Pediatrician. He is not feeling any pain, as far as I’m concerned. She says that she is following the American Pediatric guidelines associated with Achondroplasia. She wants to consult with his geneticist first and then we are to go on from there. I don’t think she may have much experience with Achons but I am told that is the case with many. I’ve had many moms on POLP tell me that their children underwent MRI’s in infancy because it’s standard and they encourage it. I’m very much against it.

YES- she is right. The American Pedi guidelines suggest it, but that is for doctors who have patients with dwarfism, but who are not familiar with the condition, as they need guidelines.
Find a geneticist who works with LP and go from there. Dr. Bober in Delaware (we drive 300+ miles twice a year) was so glad we didn’t get an MRI. It’s ridiculous to image any child unnecessarily. They’re looking for compression in the foramen magnum, which will appear as pain and/or central sleep apnea. Apnea can also be caused by obstructions like the tonsils or adenoids. This is obstructive sleep apnea. A sleep study is the best place to start, especially if you’re not noticing pain cues. A sleep study will give results about if apnea is occurring and what kinds are, if at all. With this information you can see a neurologist, for central/foramen concerns, or an ENT for obstructive concerns.
If pain were an issue, I would go for the MRI, but with all the imaging our babies need to get in life, I, personally, want to limit unnecessary exposure.

Sleep studies aren’t “fun”, but they aren’t dangerous- putting a baby under always has risks.
Lots of kids still get them, but it’s not something that the leading specialists in skeletal dysplasia find necessary unless they see issues elsewhere first.

And so… there is a bit of what happens in our lives. It’s not tragic, but it’s a lot to think about just a few weeks after your baby is born, especially when it’s not something (like vaccines or schooling) that most parents think about long before their child arrives. Thank you for being more aware with me!

Lastly, my random of the week is a review! I was not paid, so don’t worry about advertising here!

As many of you know, Dave and I don’t go out. Not like “oh we never go out, but we get take out”… we don’t go out, we don’t get food out, we don’t grab a quick bite places, or the like. We simply do not have the funds for that… so, when we decide to have an afternoon date, we hope it’s out of this world. Let’s just say the Kitchen Bar in Providence was not that.

I chose to stop here because there is a restaurant with the same name in Willow Grove, PA and I love it- they are in no way connected, but I figured we’d give it a whirl. As we entered with Addie (and her booster seat cover), we were greeted by a customer with Alzheimer’s who shook Dave’s hand and told us how beautiful Addie was. I already liked this place from the name, and this older gentleman really brought a softness to me. Now… where was someone to seat us in the small, nearly empty place? Ahh… there she is. She’s the one who seemingly doesn’t have a smile and the reached past Dave without so much as a grunt to grab some menus and ask us if we needed a highchair. It was a rough start, but we figured: no big deal.

SittingatKitchenBar

Our waitress (also the hostess) came to take our order: Dave the poached pear and sweet potato salad to which he added grilled chicken and the Reuben for myself. She walked away before I could ask for a cider. Dave caught her attention on the way back from another table and ordered one for me. She asked if I wanted a glass, to which I replied “No”. She walked over, pouring the cider into a glass. Hmmmm…

As I sipped my cider, Dave took Addie to the men’s room to change Addie. There were no changing tables/stations in either bathroom, but they were really clean (bonus). Dave changed Addie in his lap- he’s such a resourceful Daddy!

When our food came, Dave was so glad he had added chicken, as there was barely any sweet potato (small bits) and just a few thin slices of pear. He made a note that when you have small bits in salads, a vinaigrette tends to lose those pieces, but a creamy dressing picks them up. This salad just wasn’t exciting, the elements were lost and without the chicken (which was delicious and Addie ate half of), he would have been left a hungry man. Then there was my sandwich. I LOVE Reubens (call it my Jewish heritage), so I should have read better. There was no Russian dressing… but there was SO much salt, I’m not sure that dressing would have saved it for me. Thankfully, the fries were amazing. Crispy, not salty or greasy- just delightful… and plentiful! I think there were enough fries for an army!

FoodKitchenBar

As we cleared our plates (except for the fries and the bread of 1/2 of my sandwich), we waited; Addie slowly growing impatient. Dave and I downed our water, and waited. Our waitress bussed and reset a table, refilled a customer’s beer at the bar and checked on another table all while we both attempted eye contact. From the moment she’d set our plates down, she had not returned to check on us once. With Addie in her coat and finally showing that she was done and ready to nap, Dave got up and went to the opening of the kitchen (it’s an open kitchen and he just popped his head in and said “if we could have the check, that would be great!”- in the sweet way only Dave’s patience allowed. She plopped it down gently next to him a minute later, took his debit card and returned the black folder to Dave to sign. She quickly returned for it less than 30 seconds later. I have to admit, I was miffed. Not once during our meal did you check on us, but you came back for your signed receipt faster than a speeding bullet? I’m confused by the service, or lack-there-of and the food was less than wow-ing. Personally, I would not come back here unless it was to watch a game on one of their smaller TVs on a day when there were few people there again. The bar was well stocked, and people friendly enough, but when you spend money eating out less than 6 times a year (this includes take-out, dates and sandwich stops), knowing that you’ll have good food and a good experience means a lot. You want to spend those few precious moments that someone else is waiting on you in a comfortable and welcoming environment. For us, that was not the Kitchen Bar.

The aesthetic design of the pub-style restaurant was beautiful- simple and clean, and the location on Hope Street keeps you right in the hustle and bustle of the famous East Side. Stop in for a drink and some fries… but leave the kids and true appetite at home.

My favorites <3

My favorites <3

Have a marvelous week!!!

14 Comments

Filed under Marvelous Monday, Reviews

Sleep, my angel

Well that six months went by fast! All of a sudden we were back at Boston Children’s Hospital and getting our second sleep study done… where did the time go? We were supposed to be in on Friday night and out Saturday morning, but there were 6 phone calls and multiple times and dates that moved us to Saturday at 7:30pm to Sunday at 6:30am.

IMAG2483

I was a bit more prepared for what would happen than I was last time. Read THIS if you’re wondering how it went the first time around! Well, more prepared for Addie and less so for me. I had not had dinner when we pulled out of the driveway, and I could already tell I wouldn’t last the night without food. When we got to our room at the hospital (after a seamless drive to Boston: weekend sleep study perk!), our AMAZING nurse, Kate, asked us what she could get for us. As I waved my hand and said, “Oh nothing,” she continued, “I can make you some soup if you didn’t eat yet…” My eyes lit up. She made me soup! And English muffins with butter and jam. And ginger ale.

After I gorged myself on low sodium (NOT recommended) soup and bread, it was onto wrapping up my little girl into a hooked-up mummy. The nurse we had was wonderful and told me I could hold Addie and feed her while she was getting hooked up to the sensors. If you’ve never had a sleep study before, the head is measured numerous times and marked with red. Then sensors are placed on those spots with a type of glue. Then the head is wrapped so the sensors stay in place and all the wires stemming from them are plugged into one machine that reads them all night. Then, there is a mic “glued” onto the chest, right under the chin (to record snores) and tapped there for security. There are sensors placed on the legs, ribs, chest and toe- and all the leads are pulled though the top and plugged into the same sensor box as the head leads. Over-top the pajamas goes two belts that also get plugged in and up to the box. There is a nasal cannula put in place, as well. We were SUPER lucky that our nurse was so awesome- she waited until Addie was asleep and she had gotten good information before placing it in. Addie barely woke while she did, and easily fell back to sleep without comforting. Previously, two nurses got Addie into all this gear and she was hysterical. This time around it was much more laid back and pleasant.

ADDIESleepStudy

Barely any tears! Just an ounce of complaint, and she was fine!

After she was in her gear, we did our usual routine then off to sleep! We began with tooth brushing (she doesn’t spit yet) and then we read our usual night night book. We said our prayers and curled up with snuggle puppy. It took a bit of loving and about two minutes of cuddles and she was off to sleep. She woke up a few times during the night, but she didn’t need much help to get back to sleep- just a back pat or hand to hold or replacement of a lost bink. She was able to sleep on her belly for a while (which is how she prefers to be), and then the nurse gently rolled her to her back, where she stayed until the next morning!

Sleeping baby <3

Sleeping baby <3 Snuggle Puppy

I was SO happy that I had my tablet with me- I was able to link up to the WiFi and watch (really bad) movies on Netflix. With my headphones on, I snuggled into a really restless sleep. I know I will never get any sleep myself during a study, but it’s always hard to actually go through- constant door openings, trying to not wake the baby while getting ready for bed, having to pee and not wanting to flush because of the noise, that midnight snack you can’t have because you didn’t bring, pumping without showing anything just in case you’re too close to the camera or someone comes in… it’s a hard night for the parent, too!

In truth, the sleep study is hard enough, but add to the mess the hair the next day, and you’ve got a real mess on your hands. My tips HERE are from last study, but this time, our nurse (AWESOME NURSE!) took her time and helped me wash Addie’s hair until it was almost perfectly clean- at least all the glue and red pen were out!

Before... After

Before… After

As a bonus, the nurse gave us some goodies to go home with… including a spray that would help take the residual stickiness out, wipes for the tape and glue left on Addie’s skin, and 2 packets of Aveeno Oatmeal Bath to soothe after the wipes. I could not have asked for a better experience than this one if you have to have a sleep study done.

Our take-home care package!

Our take-home care package!

Because Addie’s hair was wet and the hat she came to the hospital wearing was a hand-knit owl, our (once again AMAZING) nurse gave us a really cute princess one- and it was big enough to fit Addie’s head :)

Princess hat

We were finally ready to go, and Addie decided we needed a pic of just us ladies <3 She's such a ham at 7am waiting for the elevator!

We were finally ready to go, and Addie decided we needed a pic of just us ladies

Silly, but true, dirty hair is ALWAYS easier to put up than clean hair- this is true even for babies. After she got home, we took a nap and got into clean clothes- then it was time to experiment! Because her hair had been washed so much, I figured I would wait a day to try and clean it again and made Addie’s first pigtails instead!

Addie's Piggies

If I could give you ONE piece of information and that’s all you take away from this: bring as much of your routine with you as possible. Addie was uncomfortable and annoyed, but with everything as similar to at home as possible, she acclimated very well to what had to be different due to our circumstances. For us that meant mamas milk, tooth brushing, reading Goodnight Moon, saying our prayers and getting Snuggle Puppy.

Our usual suspects

Our usual suspects

Ready for breakfast when we got home from Boston!

Ready for breakfast when we got home from Boston!

And that’s how you do a sleep study!

We are hoping for less sleep apnea occurrences, both central and obstructive, but when she had her tubes put in (ears), she showed signs when she was under. Not a good sign. While apnea is common among children and adults with achondroplasia, I am hoping that she will grow out of it before it gets worse. We head out to Waltham to see the doc in a few weeks for the results. I’ll keep you posted! Thanks for taking this journey with us!

11 Comments

Filed under Achondroplasia, Family Life, Parenting

Perhaps no one is wrong to be right

When a new mother holds her child for the first time, it is a beautiful thing. It is also scary. Those dark eyes, just seeing light for the first time don’t immediately recognize the woman that tenderly carried them for 40 weeks. Small hands grasp for the air during involuntary swings of muscle twitches after all those weeks curled up. This new life is being held by a woman who will do her best to raise this child with poise, grace and dignity. To be honorable, strong, yet kind and gentle. Being a new mother is nothing shy of a miracle.

When I first began this blog, it was a few weeks after I had the above experience. After over 35 hours of labor, most of which was unmedicated, the doctor told me to push my first child into the world. I saw her dark hair and I was a renewed woman. I found strength inside me I knew nothing of before, and I, though a labor of love, delivered my first child. Before anyone could catch her, I reached down and pulled her to my chest where she let out hardy screams and cries. After Dave began to speak to her and we were wrapped up skin-to-skin, she settled into me.

Weeks later, sitting in Hasbro Children’s Hospital, after 2 days had already passed during an unrelated-to-dwarfism admittance, we learned that Addie had Achondroplasia. A skeletal survey had shown positive, but the geneticist drew blood to be sent to Johns Hopkins to be sure. As I sat in disbelief, I wondered if I was the right mom for this child. I had never been more than a few feet away from her in the 9 ½ weeks she had been in this world, and she was inside me for 38 weeks and 4 days prior to that. But, this baby seemed new to me. This baby could not be in a carrier, those really deep breaths that sometimes scared me were a sign of apnea- common to achon children, and all those milestone charts I’d printed out meant close to nothing.

I was scared.

The first time I picked her up out of her hospital bed, I looked into her eyes. She wasn’t dehydrated anymore- she was nursing better and sleeping more soundly, and her irises were becoming more and more blue and bright as the hours passed. She gave me a sideways grin- all drool-y and gummy. I put my forehead against her’s and cried. I sobbed. She let me. We connected those first hours after diagnoses, not with me comforting her, but she comforting me. When my eyes could cry no more, I began to research. The information I came across, though some scary, was not at all negative- sleep issues, hips/knees/ankles, spinal concerns, kyphosis, lordosis, flat feet, fluid in the ears/hearing loss, larger head- awareness of hydrocephalus. The list went on, but it was nothing that I could not handle. I began to research doctors, as well as personal blogs for more answers. I came across two famous LP actors, Peter Dinklage and Danny Woodburn- successful men (Peter is in one of our favorite series- Game of Thrones- and Danny is from Philly- so of course, he’s awesome). I learned about TV shows focusing on LP. As we do not have television, I often miss these things. And then I came across Rosie [O'Donnell] and Chelsea [Handler] talking about LP. I won’t say much about it, Google it if you want, except that while having a fear of the unknown is perfectly OK (it’s what makes us human), dehumanizing someone by speaking about them as though they are a deviant, both sexually and in society is a sad, sad thing. There were many comments made, and discussion about giving LP jobs out of sheer pity- but I had to stop watching the YouTube video that was tearing down a community that my daughter was now a part of.

I sat down in my chair-converted bed in Addie’s private hospital room and I started my first blog post. It was June 23, 2012. I called the few people I didn’t want to learn about Addie’s diagnosis online, and then, on June 25th I posted it at 11:59pm. A is For Adelaide and Achondroplasia.

The response to my first post was overwhelming. As we came home from the hospital and I researched LPA, I saw that we, too, were a part of the community. People were emailing me, messaging me and commenting on the blog. There was support, more support and questions answered. Information about doctors, car seats, adaptive items for the home, new charts and parental tips came flooding into my life. I was relieved that I was welcome into such an amazing group of parents, friends, family of LP, as well as a group in which medical specialists actively participate. Addie’s geneticist, in fact, is on the medical advising board for LPA.

I wasn’t scared anymore. I was, indeed, the mom for Addie.

Above is my long-winded explanation of how we got here. The story about how I came across the pickle jars in December of 2012 is infamous… at least in New England and Minnesota. Again, just Google it. I’m the “crazy pickle lady”. While I don’t object to the moniker, I like to think of myself as “the woman whose initial step into making a change was blown out of proportion by naysayers who are not affected by her cause at all.” But I guess that’s too long.

There was an abundance of negative comments on each article posted online, and a few people responded to them in kindness. There was not one article, in fact, with more positive to the negatives- from what I was told. I stopped reading them after 2 minutes and never went back. The radio shows I went on, both in the US and Canada had DJs that seemed to listen, and then mock me as soon as I was off air- as did their callers. NPR, I was told, did not do this- Addie was in surgery during the piece and I missed it. Sadly the segment didn’t make the website, so I cannot hear it now. Callers into the shows were negative and mean- attacking and insulting me personally, where as I never made an assault against anyone. There were emails sent to me through the blog about the “lawsuit” and “court system”. About my “tirade” and “company bashing”. I answer each with dignity and pride. You are more than welcome to read some of them. I will post them below.

There were also comments shared with me by teenagers who found me via Facebook and blog. They thanked me, admitting to reading the story with tears in their eyes. Children moving into a adulthood who have gotten “gag gifts” of these pickles and other items with the word. People who thought they were being funny, but were, in truth, mocking- looking to injure the psyche of someone with a genetic difference. Let me tell you, Reader: It worked. Over 25 high school-ers, and parents of a few middle school children emailed me. Some wished they had done something the first time their child was hurt. I choose to celebrate their paving the road for me. These parents and I have discussed how they were coming from a place of hurt and anger and were more likely to be reactive and not educate, but vengeful. The pickles don’t hurt our children- the people who misuse the word do. Because of this fact, I asked for a change. The word has been so misused, it’s now more commonly used as a slur rather than an adjective meaning “small”. These same parents have asked when they can shake my hand and thank me. I tell them: their words are thanks enough, and I hope to meet this summer. I am no leader, I am but a lone mom walking the same path thousands of other parents have walked before, looking to make what difference I can in an (obviously) unchanging, due to hate and fear, world.

I will tell you dear readers, I did this out of love for my child. I have always been more of an outspoken person. I was meant to be Addie’s mom so I could advocate for her, and teach her to do so for herself. There was never and will never be a lawsuit regarding pickles. While this change may “cost the company thousands”, so does the sensitivity training, paid for each year, that many choose to provide to their employees. I don’t have a lawyer, nor as a SAHM do I have the means to provide one. There was never a tirade or bashing- I did not call for a boycott, in fact, as someone mentioned in a comment, there is a picture in which you could see I had more than one jar of Cains’ Pickles. Yes, I do. I support them as a company- NOT because they are making a change, but because they opened their minds and hearts for a 3 minute video and educated themselves. I do not ask anyone to agree with me or think I am “right”. Having an open mind and being educated do not indicate that you are going to do what someone suggests, it simply means being open to new ideas. While I believe the m-word to be akin to other words that our society has deemed hateful and slanderous, I respect that others do not. While I respect your right to the opinion that the m-word is not derogatory, I do not necessarily respect you for having it. I made a video encouraging change and offering my support in the process. This company responded positively, and I am currently pursuing other companies and mediums that use the m-word. Please be aware that the FCC has been notified, as of 2009, that the m-word is considered derogatory and slanderous to the LP community.

As many have pointed out, this first step was to educate a condiment company. Though a waste of time to many, it is important to me as it affects my daughter and, thus, myself. Some have told me that they were injured in war and they choose to call themselves “cripple” to “own it” and not let the stares get them down. While that is all good and well, my daughter was not made different after she went to war as an adult. She does not yet have the coping skills these people have, nor will she make it through childhood or adulthood as an average person. She is, and always will be, different. Trust me, she owns it. She, however, is not required to “own” a word that is a slur. I do not expect many people to “get it”- I myself would not have understood just one year ago. I, however, would like to think I would not have made a personal attack on another person simply because I didn’t understand something. Or attack anyone, period. What posses a person to feel such hate? Whether I would have expressed  my support, I cannot say, but I certainly would not have offered up such comments like this one posted on the YouTube video I made for Cains:

ReverentEternal

Did that make you cringe? Yeah. Me too. But, as an attack on me, I didn’t stop comments. I got an email that said:

Mike LitorisWhile I was shocked and saddened, this person was still attacking just me. And then, the last straw. I got an email alerting me to another comment. The reason I stopped comments on that video:

3asi1y

This was day 1. The same day that what was meant to be a feel-good article, was taken to a level I could not have imagined. What goes through the mind of a parent when they see this? I cannot tell you. My mind was blank. I got hot and cold at the same time. I wanted to make the world a better place and people were wishing harm on Addie. I disabled the comments and I stopped looking at my phone.

When the vibrating wouldn’t stop, I picked it up again. TheXtremeWRATH: “MIDGET PICKLES” and 3asi1y: “your kid looks like a midget” on different videos on YouTube came up as notices in my email. I disabled all comments on videos with Addie.

I read my girl her bedtime stories and we said our prayers. I put her down in her crib and she fell asleep. At 2:30am I was still awake- my heart was racing. I was scared that someone was going to break into my home and harm my child. People were making such vitriolic comments about a 10month old. I truly feared for her life. I crept into her room, lifted her from her crib and brought her in with us. I fell into a pattern of wakeful sleep for 3 hours that night.

Finally, the next morning, emails came flooding in from supporters. Emails and blog comments from strangers who have NO connection to dwarfism, and so many more from people who do have a connection- whether it is a family member, friend or themselves. These people chose to not fight “trolls” on Facebook or another website, but to contact me personally and thank me, support me, or to tell me that while they do not feel the same way- they encourage me to do what I think is right an ignore what they see as personal attacks. Parents, friends, strangers who are inspired to make a difference for what they believe in- things that have nothing to do with dwarfism, and everything to do with being proactive. People have cited this story in conferences and meetings, not to hurt, but to encourage others to seek change. One person can make a difference.

Then there were the few who found me off of these article pages- where on most, I’ve never read one comment- and into my email account. Thankfully, I have a junk email address that I can respond from and so I did. I want you, Reader, to know that I stand by my motto. To not be reactive, but proactive and educate. I will not let someone hurl insults at my daughter. Adult bullying is sad enough, when someone wishes to bully or harm an infant, that’s a whole other psychological issue I am not qualified to respond to. All the people who have commented about my husband, please save it- you’re only embarrassing yourself.  We have been married since 2009. If you’ve ever met Dave, he is a quiet, reserved man who loves his family. He works 7 days a week and provides all the love and support we could ask for.

I have been told I am what is wrong with this country and to focus on important things, like the economy. Dave, a small business owner, now spends his weekdays in a position over 50 miles from home, and his weekends at his shop. Does he want to work 7 days a week? No. But, he has a wonderful job that he got as the economy was crashing down around us, and his business was no longer enough to support a wife and child. I focus on the economy so much, that I am often stressed and lose sleep about how we will have enough retirement, can we sell the house, how much college will be, will we be able to have another baby, or what adaptive items Addie will need that we might not be able to afford, like an adjustable chair that seems like a wonderful piece of furniture for her… at $400 a pop. While there are other items we can get instead, you understand my point. I worry. I do not think the naysayers to my actions are what’s wrong with this country, I do not think I am either… but between some civil comments and some not, I think this will give you a better view- a more personal insight- as to what change I meant to bring, and what was perceived. There were many comments on the blog, specifically on the About page, as well as under multiple posts, including Let’s Change the Worldand The Dust Will Not Settle- you’re welcome to read them and my replies. I am including only the least offensive private messages, as I just bombarded you with the evils of YouTube vernacular. In light of this, actor Danny Woodburn made the remark:

Understanding the origins of words and how they have been used to dehumanize often escapes those that use the word for what they think are other reasons, other identifiers. Acknowledging under represented minorities has historically been a hard won change. I commend her for doing this through open communication and commend Gedney for their understanding. Anyone who can’t see or refuses to see what this means comes from too casual an understanding of this kind of societal indifference.

What scares me are the adults who post and think that I should be “ridiculed and more”. Or the people who think I compared Addie to pickles. What were they reading? There are people who think that the m-word on a jar doesn’t hurt anyone, but from the people who are hurt, I hear different. Just as many people were not hurt by a certain candy name in the 50′s and 60′s, other people were. Finally, please know that the people who want to “sue me” for using the song on the Cains’ YouTube video… I created the video using Animoto’s library, which gives me the rights. Please Remain Calm and Stop Being So Legal-Jargon Driven. I did not “take on” any company. I’m not sure why the attacks, but please read ahead. I thank you, once again, for all of your support (not necessarily agreement).

Lastly, I ask… just because I do not agree with you, does that make you wrong? Didn’t think so…

Thank you for reading.

SeanR1SeanR2

While Sean got a "win", his poor grammar and lack of respect for others opinions, are what led me to end the conversation- not his actual disagreement with me.
Sean’s lack of respect for my right to an opinion, are what led me to end the conversation- not his actual disagreement with me. Abusing the conversation by repeating “midget” and the past will, oddly, not change my mind. Asking an 11 year old to prove your point? You lost me.

Coversation ChrisJ

There are so many to choose from, but two these seemed to be the most gentle. Thank you for sticking with me through this. I will be running a series about other changes and bullying in the next few months. Together, we can make a difference for all children.

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Filed under #educate

It’s a Marvelous Monday!

I might be the only one, but I love Mondays. It’s the beginning to my week, and what a week it will be- Addie has her ear tube surgery this week and I am nervous for it, but excited for her hearing to be better. Happy 10 months to my baby girl! May her procedure be quick and successful!

Addie 10 months

02.17.2013

Onto MM!

Thankfully, this weekend didn’t present Nemo II. Though there was enough snow to cause some delays in my hubby’s work, we kept our power (and thus) our heat!  So… I guess that’s my thankful for the week! We’re beginning a bit out of order, but I guess that’s OK!

My random is, most definitely, to take this week and slow down. My husband got this lesson this weekend when, after being stuck inside due to the cold and snow, Addie and I decided to take a trip to Target. Dave told me he didn’t have time to come with us- even after I told him it would be less than an hour because Addie had to come home to nap. Nope. No luck convincing him. Dave needed to finish working on an amp (he was working from home due to PVD’s parking ban) and test it before 6pm- he didn’t want to bother the neighbors. OK. He came outside to move his car.  * * * We came back home, and as I was backing into the driveway, noticed Dave’s taillights come on to back in, too. “Did you just get home?” I asked him as he strolled up to my car. I looked down and saw, peeking from beneath the hemline of his jeans, slippers.

“You locked yourself out, didn’t you?!” What I meant to say was, “Karma, jerk.”

He was cold because he didn’t want to waste a lot of gas keeping the car running, but with no jacket in 20° weather, he was worn down. He came inside, carrying the bags, as I laughed at him. I put Addie down for a nap, and he helped me put the new baby-proofing foam on the coffee table in the living room. His eyes looked up at me, though his chin was still down. He said, “I think this was the Universe’s way of telling me I should have just gone with you.” “Yup. You wasted family time trapped in your car. Nice work.”

We don’t spend enough time together. Dave works 7 days a week, barely taking the time needed to trim his beard or brush his teeth, and never complains about it. He leaves before 7am everyday and is never home before 7pm. He drives over 500 miles a week. He sees his baby for less than 10 hours a week. His baby that will become a teenager before he knows it, and no longer smile at him just for being Daddy. The “we” that doesn’t spend enough time together is the Martinka Family. I am hoping that things begin to come together. That his work will finally offer insurance, and we will have way less of an oil bill after the winter. That maybe I’ll sell a few more bibs, or be noticed for my writing and I can contribute a bit. Whatever it is that gives us a break- that’s what I hope for. Money may not make people happy, but it can alleviate the stress that having none creates. Until then, however, I just need him to slow down- and I need to take a breather, too. I’m sure you know the feeling- it’s 8pm and the kids are going to bed and you spent all day with them, but you have no idea what you did.

All of a sudden, I ask Addie where her head is, and she reaches up and pats her beautiful head of hair. Then she smiles at me and claps her hands to celebrate. These days won’t last.

My request to you this week, my random tidbit is, to slow down and revel in those moments- because, as I am learning, they are so very fleeting.

Lastly, which is usually first, some information about dwarfism! I generally focus on achondroplasia, because that is the most common form of dwarfism- also the type Addie has, but this week I want to tell you about SED. Spondyloepiphyseal dysplasia (read: spondylo: spine, epiphyseal: growing ends of bones, dysplasia: abnormal growth) is the term used for a group of disorders with primary involvement of the vertebrae and epiphyseal centers resulting in a short-trunk disproportionate dwarfism. This type of dwarfism affects 1 in 95,000 babies (acondroplasia is 1 in 20-45,000). As I’ve mentioned before, all dwarfism is not the same. Not even close. With SED, features are very different and commonly include club feet, cleft palate, severe osteoarthritis in the hips, weak hands and feet, and a barrel-chested appearance.

Addie’s friend, Sara, has this type of dwarfism. She is 9, and size is not the only thing that makes her different from other children her age. It’s not just the 30+ surgeries, months spent in NICU, being born less than 5 pounds, the trach, or any other medical differences. Sara holds conversation with adults as though they are peers. She listens intently and asks appropriate questions. When she is excited about a new topic, she talks about it- a lot. In fact, if there is ever a moment of silence, count on Sara to fill it. It’s very impressive, especially because Sara had a trach for much of her young life. Watching her play at the YMCA, Sara builds tall forts, runs around with kids her age and shoots baskets like she’s in the WNBA! When she needs to sit, she simply does… but she doesn’t complain. She asks why and almost makes a that’s not fair statement referring to the bounce house, but I see her brain catch her, her eyes move to a cardboard brick that could be used in the castle wall, and she’s off to get it. Sara is not shy, she does not hide behind her [amazing and dedicated] mom. She’s far more independent than most kids her age, and has two amazing older brothers to watch out for her when her curiosity gets the best of her. From behind her wire-frame glasses, Sara’s brown eyes light up when she sees Addie and she pulls her in close to her body:

Addie and Sara

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When Addie and I first met Sara, we were new to the community. We were unsure and on new ground. It was at a meet-up for our district in Mystic, CT that we found local friends to help us navigate and we are so thankful for them. In truth, Addie and Sara are as different from each other as an AH child and LP. Their dysplasias are not the same and do not effect their bodies in the same way. Expanding our knowledge about dwarfism is a learning experience for all of us, and we are enjoying meeting such wonderful friends as we do! Best of luck to Sara as she embarks on her journey to DuPont for a sleep study, pulmonology appointment, and a knee surgery!

Thank you for learning with me this week. Please ask any questions via the “Contact” tab!

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Filed under #educate, Marvelous Monday

And so it goes…

As many already read, we went to the ENT a few weeks ago. Dr. Jan C. Groblewski was amazing. As I walked into the office of University Otolaryngology, Addie was already antsy from her long day being at the ophthalmologist earlier that same morning. After a 45 minute wait to get into the appointment we were 7 minutes early for, we were brought back to a small room. I was tired, hungry and ready for the day to be over! As Dr. G came into the room, I was shocked by his young face. I shook his out stretched hand, and we were off.

Dr. G looked at all of my information (I have a color-coded folder for each of Addie’s doctors), slowly scanning each page I offered up, making notes in his chart and asking some follow-up questions. We discussed her sleep study results, and her upcoming one, her infant hearing test and how she failed day one, but passed day two. Addie smiled, then winced, as he peered into her ears- the next day she ended up with an ear infection. As he leaned in to check her throat and feel her neck, I noticed his socks. Striped. Awesome. As a pediatric ENT, you can’t come to work in a clown suit, but you can wear silly striped socks- it actually brings some ease to the parents dealing with serious issues- like hearing loss in their infants. It was a small reprieve to the day’s outcome.

As Dave was away in London, I was lonely and had no one else to bounce each concern off of, so Dr. G listened to each thing that ran through my mind and helped me weigh my options for care. He gave me his suggestion and before trying to convince me, asked me what I thought about it. Tubes. I know they’re so common, but I wanted so badly for him to tell me that her hearing was suddenly great. No parent wants to see their baby put under, even if it’s for just a short while.

The second I was done talking, Dr. G looked at me and asked me if I had any other questions… of course I did. So he sat and listened again. Offering his medical and parental advice. We continued our discussion, speaking about the very small percentage of issues that arise with permanent eardrum perforation. I looked at him and said please don’t explain anymore to me. There is a 1 in 45,000 chance of a child being born with dwarfismDr. G smiled and said he had to tell me about risks, but not to focus on that. We also talked about tubes not giving us the results we want, and that if they don’t, we will fit her for hearing aides and we will monitor from there. After I had exhausted all of my questions and brain power, Dr. G told me that he is always more booked at the hospital, but because  of Addie’s achondroplasia, he would prefer to not have her surgery at the surgical center, and at Hasbro instead. He insisted I tell Dawn, the scheduling guru, that he had said to get me in ASAP. He handed me some papers, told me he would take good care of Addie and we were doing the best thing for her.

As I walked down the hall, missing Dawn on my right, I met up with a nurse who redirected me to her desk. I sat down with Addie, disheveled, hungry and nervous. “March…” My mind went blank. I can’t wait that long. Timidly, and so unlike me, I said, “The doctor said maybe we could get in before then…” I trailed off, hoping she wouldn’t think I was rude. Dawn smiled at me, picked up the receiver and spoke quickly to the scheduler at Hasbro. “Great. Thank you.” And she hung up. “February 21st,” she said to me, “How does that sound, Mom?” She explained the pre-op tour I could go on to talk to an anesthesiologist and learn about where we would be on the day-of. Dawn was reassuring and sincere. A wonderful experience, if you had to have one at a bad time, is how I would describe the ENT visit.

My mantra as we left: Mommy is here and will keep you safe. Just two tubes, and you will hear. I repeated this over and over as we drove home. I could not get a hold of Dave, and I was stressed. But, deep in me, I felt, and still feel, joy. I cannot wait until my baby girl can hear my voice better. Until she hears the music her daddy plays and the silly growls her puppy makes. I am excited for the outcome of the surgery… but I  wish there was another way. Because there isn’t, I know how blessed I am that my mother will be coming up to spend a few days with us to help me out on the day- she’s been through this with both of my brothers. Thanks, Mom!

* * *

And so, I went to our pre-op tour on Tuesday (to celebrate Dave’s birthday?) and took a tour of the waiting room, meeting room, recovery room and met with an anesthesiologist. Immediately, the doctor told me that he and his team were very familiar with working with children with dwarfism. I was miffed that I printed out information and he told me it was an article from decades ago. All I could think was no s*it, I can read the date, too, but I smiled and let him know achondroplastics haven’t changed their body-type and these issues are still a concern. I think he realized he’d poked the bear and at least looked in the direction I was pointing on the paper. After he asked for a family history of issues with anesthesia, he then laughed that he had to ask those questions because reactions are often a product of the individual and not passed down. I smiled, feeling more at ease.

As we shook hands, and the doctor left, I looked around… the room wasn’t very comforting, but Addie was intrigued:

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There was no one to meet us and walk us out, so I took us on a brief tour of Hasbro (AKA got lost). The last time we were here, I came in though the ER and didn’t leave the room for 4 days. It’s a nice hospital, even if you can’t find your way out. We headed home from our trip… complete with paperwork to bring with  us the day-of and bellies rumbling with hunger. After a late lunch, I snuggled my baby girl to me and whispered in her ear. Things she probably didn’t hear, but that she will soon. I love you, my sweet baby girl. And I always will.

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Filed under Achondroplasia, Parenting

A is For Adelaide. Book One.

I am so excited to read this to Addie every night, and I want to share it with you. It’s no great classic, but it’s all my love for Addie rolled into this book… and I hope it’s just the beginning. No, it’s not copyrighted or published anywhere, yet… please share this post, but please respect the thoughts, ideas, words and photos are mine. Thank you for your support in my endeavor to write this book.

P.S. I’m really terrible on camera!

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Filed under #educate, Community