Tag Archives: AH

February 18, 2013 · 7:39 am

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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January 14, 2013 · 10:00 am

Marvelous Monday

For the first official Marvelous Monday post, let’s jump right in!

Educate

First up: sitting up!
If you had asked me last week if Addie could hold herself up, the answer would have been NO! But now:

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IMAG2012That’s a whole ‘lotta sitting! Her back is super straight, and I love giving her the opportunity to see the world from another vantage point. She does not pull herself into the position, so we don’t practice this too often.

Placing a child with dwarfism (specifically one with spinal issues like kyphosis) into the seated position often leads to “tripod sitting”. While this position is fine for most children, it is not for an achondroplastic because their vertebrae crunch in on themselves on the inner part of the spine. This leads to chipping away the bone, and can case severe back issues. Addie tries so hard to not fall forward, that she often falls out backwards (hence the pillow behind her).

Children with dwarfism can expect to sit up, on their own between the ages of 11 to 14 months. While Addie is only 8 1/2 months, she is not doing this on her own! We do not use seats (Bumbo, Mamas&Papas) that assist with propping because they allow for lower spine curvature, however, on Friday (1/11/13), I went to place Addie on her back, and she would not un-fold herself. I was bending over to put her down and I let her go to readjust my positioning, and she sat. Just like that. She wasn’t leaning on the sides, or against a toy. She was just sitting there! When she does fall back, she cannot hold her head up from falling like I’ve seen lots of other children do, so I do not leave her like this, but it’s been wonderful to see her sitting up for 30 seconds (or more!) at a time and laughing and smiling the whole time. Knowing that she is doing something new is not just exciting for us as parents, but for Addie, too!

While Addie’s milestones may be well behind those of average height (AH) children, her mental and emotional skills are not delayed. She mimics us and says funny things like “dada”, when she sees a man with a beard, she loves to brush her teeth, and when the music shuts off on her Baby Einstein player, she knows to slam her hand into it until it starts again (yes, she does this in the middle of the night when she wakes up). I have a baby who puts herself back to sleep with music. I feel like I might be WINNING… sorry Charlie.

Many times people have wondered when their child will sit, and being that Addie is my first, the wait is so hard. Watching other children sit up, crawl and walk, while my beautiful girl tries to squirm on her tummy or rolls into a toy isn’t always easy, but when she curls up into me, soft and warm, I know that when she is sitting up, walking and running, I will wish for these fleeting moments and never get them back.

I send you all my love POLP. It’s never easy to be a parent. Our babies are different. We don’t want to point it out, and as they mature they will do anything any other child does, but this early in the game, it can be daunting to watch other children do what our baby cannot. I still feel those things, knowing that Addie is “behind” her peers. As first time parents, all the things we prepared for are different. If you’ve already had a baby who is AH you’re starting all over again; learning new ways to parent and raising a child completely different from your others. And to all my friends out there who have no idea about dwarfism… be patient with me. I will move on and Addie will, too, but some days I just feel very alone. Thanks for sticking by me.

Thankful For

While I’m cooking dinner, a task we begin at 6:15 every evening after Addie eats, I put the babe in her exersaucer. Previously, she stayed in her highchair and demanded puffs. Shrieks and shrill cries told me none of my offerings of mixing bowls, wooden spoons or spinning toys would appease her desires. She wanted puffs.  While I don’t think any baby needs a diet, I don’t think my baby needs to eat puffs because she is bored. And so, most nights, dinner would be started, but not completed by the time Dave got home. There was simply no way to make food and stop the tears at the same time.

Addie wakes up from her 4:30-6pm nap, eats and then wants to play. She gets some puffs so I can begin dinner, plays with spoons and makes herself into a little drummer (just like mommy) and then, at the time when my hands are covered in raw chicken or beef, she lets out the first cry. I usually get the food prepped and my hands clean before WWIII starts, at which time I pick her up and put her in her new exersaucer.

Addie Playing

And so… what am I thankful for this week? Not the exersaucer, but for the best friend who knew what I needed before I did… even if that need is an exersaucer. I am thankful for my best friend. Sometimes you meet your soul mate on the playground of kindergarten. She’s the little girl who is similar to you, with the opposite hair color, but the same shoes. Or maybe she is in your dance class, or you swim together at the Y.

Me? I met mine at a new mom’s group. I won’t get too involved, but when I heard she was a transplant (from the south, HA!), her husband works too much, she had encountered similar loss in life, and had a high-risk pregnancy, it was like we were meant to be. We are not the same person on the outside. She is blond to my brunette. I have blue eyes to her brown. My muscular, though under-toned, body is covered in tattoos and a few piercings where hers is beautiful and lean with some freckles on her otherwise bare skin (when I was little I used my mom’s eyebrow pencil to give myself freckles- I love them!). I wear flats, she wears heels… and then we’re the same height. But, what we are the same in is our adoration of our baby girls (Addie and Hadley, known as Adley or Hadelaide), born just 4 days apart. Where I thought I wanted Addie to be born on April 21st to help heal the wounds of losing my father, I am glad she was born on the 17th (my lucky number). Hadley’s birthday gives me something to celebrate, but not a party to plan, which is something I don’t think I could handle. We are the same because we don’t fit in, but we do. We love red wine and champagne with cheese and guacamole. We love our SUVs and the men who provide for us, even if we never see them. We’ve known each other for about 8 months. Almost since the girls were born. There are no pictures of us in middle school laughing on the field hockey bus, but she didn’t play field hockey and I was never a cheerleader. High school dances? Nope, we didn’t know each other. College parties… I prefer those pictures never be released, anyway. But there are memories being made now. The loneliness of my pre-mom friends being too busy to ask me if I want to come out after the baby is asleep… it doesn’t hurt anymore. I have met someone who fills all the gaps and spaces. I love all of my friends, including (of course!) my Nick, who is my rock in Philadelphia. There are lots of ladies who fill my heart with love, and a few special men who have always protected me like a sister and fought with me like brothers. I am a blessed woman to have all of the love and support a person needs. Not from numbers, but from strength in the few I’ve let in, and who locked the door behind them.

I am thankful for all of my friends, but today I am specifically thankful for my best friend because she somehow always knows what I need. Yes, even if that need is an exersaucer so I can make some darn dinner!

Random?

Dinner is never random here. We eat around 7:30 8:00 9:15. Let it be known, we eat every night. I always have dinner ready… well, since 2013 began, and I wanted to share 3 super easy dinners you can get done in less than 15 minutes… as long as your children are amused. Can’t get them to calm down? Ask your friend for an exersaucer!
Quotes like: I can’t eat this fast enough and This has been an amazing month for dinners and Are you trying to out-do your dinner from last night are what keep me going. I wanted to have dinner ready when Dave got home as a personal resolution. No more asking him to come in the door and let me drop everything for him to take care of Addie and finish dinner while I come up to the office and Facebook. And so, I’ve rearranged my schedule to ensure we are home by 4pm everyday. Addie takes her nap 4:30-6 and then we head down to the kitchen to eat (her last meal of solids for the day) and make dinner. I make sure that I am prepared for what we need ahead of time, placing all the dry, canned and jarred goods out on the counter and putting all the refrigerated goods together on the bottom shelf in the fridge- ready for grabbing. I make sure that any recipe is loaded into my phone and the oven is pre-heating while Addie eats. And so, I’ve had dinner ready every night- including wine poured!

A few faves, each serves 2-3 adults… or 2 adults, 2 kids. Dave and I eat dinner and he takes leftovers for work!

Chicken Cesar Salad
I was never a fan of prepackaged salad kits, until they were on sale and I decided to get a few.

Cesar Salad Kit
Amazing.
Add sliced black olives, 3 minutes.
Grill chicken on the Foreman, 6 minutes.
Slice chicken, throw onto salad kit in bowl.
Call yourself a chef.
Pour wine and pat yourself on the back.

Garlic Kale with Sausage and Mushrooms
Take the casing off three sweet Italian sausages, cut into 1/2 inch pieces, throw into pan with oil until brown. No casing is crucial… I think it tastes SO much better.
Meanwhile, wash and dry one bunch of kale. Cut leaves off stem. Put into wok with 1T olive oil.  Add 8oz. sliced mushrooms. Cook on medium heat.
Dice fresh garlic… as much or as little as you want. I LOVE garlic. And toss with kale after 5 minutes.
Add salt to taste. Cook until leaves are tender but still crisp and bright green, lower heat and add sausage. Mix. Let sit for 1-2 minutes.
EAT!
You can use whatever meat you want… but YUM!!!!

Lastly… I got some pork tenderloin, already seasoned.
Follow the instructions on the package, but plan on about 40 minutes of bake time (I LOVE long cook times… set and forget… without having to unload the crockpot).
Make some couscous, which is super fast and simple, and season with S&P, paprika and turmeric for some smoky flavor and color.
Steam up veggies (I used broccoli) and dinner!
Pork is super easy because you let it rest for 5-10 minutes, then slice the whole tenderloin and divide it for dinner and lunch the next day. Couscous and steaming veggies are super fast, and great sides.

Happy eating… and HAPPY MONDAY… to all!

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December 12, 2012 · 9:21 am

The Top 5

There are many discussions about mommy wars and who is the better parent (what is better anyway?). Who is right and who is wrong, and a whole bunch of opinions being tossed out by people who are not the parent of whatever child they have an issue with at the moment. People, remember to stop and smell the tulips sometimes. Life doesn’t have to be just one way. Oh, it’s roses, you say? We don’t all smell the same flowers:
Addie and a tullip

Sadly, this is nothing new. When I was engaged, my husband got an anonymous letter in the mail (typed) about not marrying someone for the wrong reasons. Yep. This happened. It was sent to his shop, from a zip code on the West End of Providence. It could have been anyone, but I have my own personal list. I remember someone making a comment about robbing the cradle and then winked at me. *ahem* I was 24 when I got married, I just looked like a baby.

Allebach Photography

Allebach Photography

So why did I think when I had a baby opinions, odd questions and random “winks” of knowledge would end? Because I’m hopeful, I suppose. I feel like having a child who is but 1 out of 45,000 makes her so special that people feel they can ask anything and it’s appropriate because it’s different, but rest assured, some questions are not meant to be asked. Google it next time, perhaps? BUT, more than a few people have asked me the following questions, so here are your answers.^

1. Will Addie grow normally and then stop at a certain age?
Addie will not grow as an average height child would. She will grow slower and possibly reach a height between 3 1/2 to 4 feet. Like any other person, she will be finished growing in her late teens. She may experience growing pains like anyone else, and she has growth spurts as any other infant does. At almost 8 months, Addie is about 24 inches. An average height child would be about 27 inches at 8 months.

2. If Addie’s head is bigger, does that mean she has a bigger brain? Does that make her smarter or dumber? (*One person actually asked if she would be more smarter or more stupider)
Addie’s head is bigger than an average height child’s head. In some cases with an AH child, this could mean a number of brain or skull abnormalities, including hydrocephalus. We were blessed in that Addie’s head size is just a physical tribute to achondroplasia, and does not have anything to do with a medical issue. Because her skull is larger, her brain is, in fact, larger. This has no bearing on her intelligence, either way. Children with achondroplasia are not more likely to have down syndrome, be autistic, have ADD or ADHD or have any certain allergies. Quite simply, their heads are just a bit bigger than average.
*This was from someone at a store who had commented on Addie’s head size and the conversation took off from there.

3. Will her body be even?
I wasn’t exactly sure what this question meant until it was re-worded as: will her body match. The question is still strange, but I understood it better. The answer is: no. Her body will not match or be even. With achondroplasia, the torso is closer to average size, while her arms and legs are shorter. Addie will also have small hands and feet, and as stated, her head will be a bit larger. A common, though not necessary, feature is a little bit of a belly and rolls. Though it’s cute now, this is not something that Addie will necessarily grow out of, thus nicknames such as Michelin Baby or Buddha are truly not things we want her to be called. She is beautiful, but her body will be different. I celebrate her different! The way she needs to have her jeans cuffed already and it looks super cute on her. The way 3/4-length shirts fit her arms perfectly. The way she wears super-cool toddler hats that are too big for most babies. The way I have more baby skin to kiss and more belly to tickle. A full head of hair to brush and small hands to hold on to. Her body is beautiful.

4. Can she have babies?
This question has been asked over a dozen times. The answer is, medically, yes. Addie can have a child. If her partner is another person with achondroplasia, there is a 25% chance of her baby being average height, 50% of the baby being a dwarf and a 25% chance of the child being born with 2 copies of the gene, which is fatal and known as homozygous Achondroplasia. There are a few different types of dwarfism combinations here. Not all numbers are the same depending on your source- science… so un-exact sometimes.
Addie will, if she decides to have children, need to have a cesarean section- but, she should, with a healthy lifestyle, carry a pregnancy just fine.
As her parent, she has to be allowed out of the house first, so NO, she cannot have a baby!

5. Is there a cure?
And finally, no. There is no cure. Dwarfism is not a disease. Addie’s achondroplasia was caused by a spontaneous mutation in a gene called FGFR3. There is nothing wrong with her. She laughs when I dance, she babbles about her “dadadadadada” and she rolls all over the place to get what she wants. She can stand when leaning against her crib railing, and she puts herself to sleep at night. She loves carrots and turkey, and she thinks throwing things on the floor is hysterical. She eats puffs and her toes. She loves to swim and pull my glasses off my face. She is your average baby… just a bit shorter. But, if you didn’t know this already: the best things in life come in small packages.

I am aware that there are some awkward double standards out there, my least favorite being if you look up what a child with dwarfism looks like on Google images, there are multiple pictures of naked children with dwarfism. If those children were of average stature, that would be child pornography. I do not think it is human to want to examine a anyone in this manner. I know when people first see Addie sometimes I see their eyes scan her whole body, looking for something to be different. Searching her limbs for their incongruity with her torso, or staring just a bit too long at her head or belly. I’ve seen the look in the eyes when they’re caught. The shame that floods someone when they’ve examined a child the way a scientist looks over a subject. Someone whispered an apology to me.  The size of cars, football teams and pickles are described using a derogatory term that offends thousands of people, yet the media still uses it widespread. Imagine another derogatory term used so casually? I’m sure the ACLU would be up in arms.

That being addressed, please ask questions about dwarfism. Remember the way things are worded and what your words insinuate can hurt and offend. If you wouldn’t want someone to ask you questions in such a manner, perhaps an internet search may be a better way to find your answer. I am all ears and eager to learn the things that I don’t yet know and educate others on the things I do, but when things get personal- please remember- this is, and always will be, my baby.

Addie

^ Not every question on this list was inappropriate, but sometimes the way the question was posed was what got to me. Again, please be a wordsmith when asking tough questions.

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September 18, 2012 · 10:00 am

You Educated Yourself AND Won $25!

Thank you so much to Lynn- our winner- for educating herself and others about dwarfism! Lynn is mom to a LP, too!

This cute face wants to thank everyone who joined in the effort to educate people about dwarfism, and will continue to do so!

You Liked AisForAdelaide and Understanding Dwarfism, and that won you $25! (I’m sure you already knew this, as I emailed you, but I figured I would share it with the world!) I am quite excited for all the LIKEs we received, and I hope that everyone continues down this path of education! Becoming aware is the first step to understanding more about LP.

October is Dwarfism Awareness Month and I am hoping that Lynn, and you, my lovely readers keep spreading the knowledge!

A few things to remember:

* There are over 200 types of dwarfism. Achondroplasia (what Addie has) is the most common.
* Over 80% of people with dwarfism have average height (AH) parents and siblings.
* It is very rare to have any type of mental impairment with dwarfism- I made this bold because many people have come up to me and shared their apologies and compared her to being autistic. When I say many, I mean more than 10. While I do understand people are trying to learn, please know that dwarfism is not related to autism.
* Preferred terminology: “little person” “short stature” “dwarf” “having dwarfism”. The word “midget” is slang, antiquated and will not be tolerated by myself, my husband, my family or anyone we know.
* People with dwarfism are able to do the same things as average height people, perhaps with some adjustments- but just as capable.

Please know that we are not looking for a cure. There is nothing wrong with Addie, or any other child or adult with dwarfism. She is beautiful, happy and perfect. Simply, like other little people, she is just small. She may need surgery in the future, but many people get surgery. A lot of people ask me if there is a cure, there isn’t. How can you cure her from nothing?

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September 17, 2012 · 11:00 am

Excitement Never Ends

Everyday I learn something new… and so does Addie. Today she is 5 months young, and showing me new things everyday.

Happy birthday, beautiful.

Looking back to before she was born, I want her to know how excited we were to be having a baby- HER! … Here I am at 35 weeks.

Parenthood is scary, but knowing that I have such an amazing daughter, makes each day beautiful!

There is a poem I’d  like to share, called Going to Holland. It was shared with me to “make me feel better”. I know it makes people feel better, and I understand what it is trying to convey, but it is not how I feel. I’ve never been sad that Addie has achondroplasia. I am scared sometimes- I don’t know what the future holds- but I am not sad, I am not disappointed, I do not feel shafted. Having an LP child, I know some times a parent’s reaction can be anger, and that is OK for them. I just don’t have anger at her. I feel angry at God or a higher power when I watch her cry and can’t hold her and make it better. When she is getting poked and prodded, wrapped up, imaged, scanned and more. I do not consider Addie disabled, and I will not treat like she is.

Going to Holland
(Emily Perl Kingsley)

I am often asked to describe the experience of raising a child with a disability –
To try and help people who have not shared that unique experience to understand it,
to imagine how it would feel.  It is like this…

 When you’re going to have a baby, it’s like planning a fabulous trip – to Italy.
You buy a bunch of guidebooks and make your wonderful plans.
The Coliseum, The Michelangelo David.  The gondolas in Venice.
You may learn some handy phrases in Italian.  It’s all very exciting.

 After months of eager anticipation, the day finally arrives.
You pack your bags, and off you go.  Several hours later, the plane lands.
The stewardess comes in and says, “Welcome to Holland!”

 “Holland ?!? ” you say.  “What do you mean Holland ?? I signed up for Italy!
I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan.
They’ve landed in Holland and there you must stay.

 The important thing is that they haven’t sent you to a horrible, disgusting, filthy place,
full of pestilence, famine and disease.  It’s just a different place.
So you must go out and buy new guide books.  And you must learn a whole new language.
And you will meet a whole new group of people you would never have met.

 It’s just a different place.  It’s slower paced than Italy, less flashy, than Italy.
But after you’ve been there awhile you catch your breath, you look around…
and you begin to notice that Holland has windmills…and Holland has tulips.

Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…
and they’re all bragging about what a wonderful time they had there.
And for the rest of your life, you will say,
“Yes, that’s where I was supposed to go.  That’s what I had planned.”

 And the pain of that will never, ever, ever, ever, go away…
because the loss of that dream is a very Significant loss.

 But if you spend the rest of your life mourning the fact that you didn’t get to Italy,
you may never be free to enjoy the very special, the very lovely things…about Holland.

…but I am in Italy. Well, no. I’m in Rhode  Island, which is not where I want to be, Italy isn’t either, but if we’re on the topic, here goes: Parenthood is Italy, as this author describes. Or, in my case, Holland. I’ve been there, and I loved it! I have never been to Italy, and while I do hope to go someday, I will always have a place in my heart for the trip I took with USA Field Hockey to Holland. I know plenty of parents with children who have no diagnosis and they are not having a good time.

It may get hard for parents of LP, but it’s damn hard to be a parent in general. Sure, my opinion my change, but being blessed that Addie chose us will never be Holland (although I’ve been and I loved it), she is Italy (where perhaps someday we will all travel to together). My dream was not to have an AH or LP child, my dream was to be with the man of my dreams and have beautiful children. Here she is, as Adelaide Eileen. There is no significant loss, there is no pain. There is beauty, little giggles, big coos, snuggles and kisses. Sometimes there are tears, but would the smiles be as big without them?

Happy 5 months April 17th babies!

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August 28, 2012 · 4:31 pm

Sleep Study. Take I.

First, HAPPY 19 WEEKS MISS ADELAIDE!!!!
a picture from our sleep study intake visit:

5am in August always feels like summer camp to me. It’s humid and sticky, but the air is cold on my skin. Something in the wind smells like a vague cleaning product. My stomach growls with hunger, but I’m too tired to get food. Getting up irrationally early during the summer seems to defeat the purpose of summer break; however, I’m 27, not 17. My summer break days are over.

Dave and I set out clothes out the night before. We crept out of the bedroom at 4am, like high school kids trying to not wake our parents. Only we are the parents, trying to not wake the baby! We delicately danced around the house, Dave making coffee, and me sitting in the dining room to pump. We bumped into each other in the most ungracious ways while navigating the bathroom without contacts. We gathered up every toy Addie likes, a change of clothes, and some milk for our sleeping girl and loaded everything into the car. Then I gently lifted Addie from the Rock n’ Play, next to our bed, and carried her to my Escape. What a non-fitting name.

Addie’s sleep study intake appointment was an hour and a half drive, each way. We had to take 2 cars so Dave could go right to work after the appointment, in the complete opposite direction from home. Tucking Addie into her seat with Snugglepuppy, I climbed into my car to follow Dave, gently reminding him that we are not driving on a racetrack.

Enjoying the silence of the morning, I rolled into the closest gas station (newly converted from a BP to a Getty), and handed over the last of my life savings into my tank. We then began our journey to Waltham.

I looked at her in my rear view mirror as we neared the hospital. With a half hour drive still ahead, I realized she was awake, and looking around- not unhappy, just checking everything out! I remembered childhood memories of waking up in the car, early in the morning and late at night, coming from and going on vacations. Such beautiful memories of pretending to be asleep as my Dad carried me into a strange house that smelled of clean sheets and the ocean- so excited to wake up to the beach and boardwalk of Ocean City, New Jersey. As I stared into my mirror, I wished this was a memory for Addie. I want her to wake up in her pajamas on the way to the beach, not to an early appointment, but I realize, she may just have to have memories of both.

Oddly, Hasboro Children’s Hospital does not do sleep studies for children under the age of one, so we were heading to the Waltham branch of Boston’s Children’s Hospital. I was nervous to be traveling so far with her, to an unknown doctor, but when we arrived, I was at ease. The directions were great, and the signage was perfect! As we entered the Neurology Department, Dave sat down to give Addie her breakfast (mmmm, milk!) and I headed to the desk to fill out all the paper work. We were promptly called into the exam room and asked a lot of questions. Addie was stripped down to her diaper and the doctor did the usual poke, prod, listen, squeeze, stretch, measure, check with a light and recheck with a light and a stick, squeeze again, roll over, get in the face, play with a light, listen again routine.

“She looks great!” the doctor declared. He stepped out to wait for Dr. Kothare to come into the room. Addie waited patiently with Daddy!

We learned that there are three things that will be checked during Addie’s sleep study, which are more common in children with achondroplasia, and I must admit, sometimes not knowing is much more comforting than knowing.  First, the doctors will check for sleep apnea, where she stops breathing for 10-20 seconds at a time from the weight of her head and other differences in organ sizes (et cetera) from AH children. Second, the doctors will be looking for central sleep apnea, where your brain actually sends the message to your body to stop breathing. Third, tests will be done to determine if Addie is getting good air. This means that the levels of carbon dioxide will be measured to make sure she is holding enough to sustain her.

I did not know the body would ever tell itself to stop breathing. There have been a few nights since our intake appointment that I have picked her up out of her bassinet and held her to me, skin-to-skin, like the first days after she came home. I’ve asked her to promise me to wake up. I’ve shed tears that I couldn’t have stopped for all the money in the world and stars in the sky.

Her actual sleep study is September 3, in downtown Boston, and because they’re only done during the week, I will be there with her alone. It is a lot for a parent who is not doing it alone, to be left alone to do most of the parenting and I am so thankful that Dave was with me when we got her examined… However, I am terrified to go to Boston alone, sleep alone, and watch Addie get hooked up alone. I lean on my husband for support that I don’t even know he gives until he can’t be there. I can’t imagine being a single parent for so many reasons; someone to dry my tears is one of them.

On days where Addie gets shots, when the insurance company calls to deny me again, when I can’t find my keys or forget the safe place I put something but now can’t find- that’s when I miss Dave the most. I know that someday he won’t have to work so much, and he won’t have the two hour commute everyday, but I wish that day was now.

I’m hoping for good results, so I can rest easy (literally)… at least until her next sleep study in a year!

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August 11, 2012 · 10:00 am

Pardon my French but: &odd%$n you, Teen Mom 2

When a headline begins with Teen Mom Leah gets more bad news about baby Ali, I feared the worst. Let’s be honest, it’s trash TV, but I cannot help my freakish addiction to these sad teenagers who can’t seem to get their stuff together. I am no Mother Theresa, but seriously ladies, what the heck is going on in your heads? And why, Netflix, did you decide to have this in your instant queue option?!

Watching episode after episode of Leah wondering why Ali is not keeping up with her sister breaks my heart. Her emotions seem tangible and I can taste her tears as my own. But reading these words below, makes me feel sad. Sad for me. I knew Addie had rapid head growth- I feared hydrocephalus. At one point, at Hasboro, I said to my husband: “It doesn’t matter what the doctors say, I’ve already diagnosed her as a hydrocephalic dwarf. So I’m  prepared.” And I was. I embraced the news that she is not hydrocephalic like a champ, and I will forever be attempting to navigate life for her as an achondroplastic. I love my baby girl, and I will never let her suffer.
From the internet:

Enough with the mixed messages! First we have Corey contrasting a camouflage cap with a neon T-shirt, then Leah’s geneticist is trying to scare all our happy away. Just last week we were celebrating baby Ali’s “normal” test results and first time standing; tonight Leah was told her young daughter might actually suffer from skeletal dysplasia — or dwarfism. Whatever her condition turns out to be (and recent pictures show a very stark contrast between Ali and her twin sister’s development), we know their coal-mining fairy tale does not come true.

Can we start with the word suffer? Addie won’t ever dunk a basketball in the WNBA, but I hardly think that she’s going to, or is, suffering from achondroplasia. It’s a diagnosis. An explanation as to why she is so “wee”, but she is amazing. She is beautiful. She is Adelaide Eileen. My child is a dwarf, but she does not suffer. In fact, she thrives- AND, she lives to tell George all about it!

There are a ton of issues with the multiple brief accounts of “Leah and Ali”, but my main “beef” lies with the suffering, sadness, fear, and delayed commentary. Addie is not suffering, and neither are Dave nor myself. We have no sadness, and no fear. We are aware of some of the challenges she may face, but we do not fear them. And as far as delays go, Addie is on track with the AH (average height) children, so we have no worries there. But, should she fall behind, there is a chart specifically for HER!

This is my PSA: being a dwarf does not mean you suffer. There can be many scary situations ahead for Addie, but there are an infinite number of possibilities for all of the amazing experiences that lay ahead for her, too! Good luck to baby Ali- may you be little or may you be big, you don’t have to suffer for anything.

EDUCATE YOURSELVES!

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August 8, 2012 · 10:20 am

Early Intervention

Addie went to Early Intervention for her physical interview.  She automatically qualifies for the program based on her diagnosis, but they like to get together to check where her skills are.

She’s 3 months… what skills?

I began the interview by handing the therapists toys that she likes, as she was completely disinterested in the ones that they wanted her to track and follow.  The red and yellow rubber “toys” she presented to her looked more medical than playful; I was glad that I brought along a few of her favorites. Once she proved her skills there, we moved onto a few other things, then questions about her eating.  These confused me, as they were asking about how she takes pureed foods. I’m sorry… what? She’s 3 months- update your questions to coincide with what the AMA guidelines are for feeding.

After more noise making and eye tracking, a little bit of reaching, and a whole lot of “prayer hands” (where she holds her hands in a prayer-like fashion), the therapists asked if I could pull her up by her arms to bring her into a seated position, which helps check her abdominal strength. Um, nope. Have you people seen her head size, which we discussed at length, and how I can’t let it snap back? She holds her arms and legs up in the air, she’s working her abs, let’s leave it at that.

So, we moved on. Sort of. One of the last questions included me holding her, facing me, in a slightly seated position cradled in my arms. From this point, I would drop her back, “just a bit”, to see if she startles.

You want me to drop her to see if she still has the startle reflex, which I said she did? Trust me. She does. And I’m not about to risk her head flapping back to prove it.

In the end, it was a fine visit and I agreed to worth with a therapist to come up with a care plan, but for now, that just consists of monitoring her motor skills.

I provided the therapists with a copy of the most up-top-date chart of where her motor skills should fall as an achondroplastic, and let them know I expect her scores from now on to be biased toward these age-appropriate, according to experts in dwarfism, milestones.

As it is, Addie scored at 3 to 4 months for each group, except social and verbal skills, where she is at a 4 month and 5 month mark, respectively. This was no surprise to Mima (my mom) or Daddy, as they both know how much I love face-to-face communication, always making eye contact with people I am in conversation with, as well as the fact that I love to talk. And I do so a lot!

It’s nice to see that being sure to speak with Addie everyday, encourage her to engage us in conversation and always make eye contact with her, whether she is playing with a new toy, getting dressed and counting her snaps, or in between the lines in a story- we are enhancing her communication skills.  I hope that she can keep up with her motor skills, but even if she ends up a big behind from AH kids, I know that she will reach her goals!

I do hope to add a few things to her goals, like looking at her toys more, but she just loves the social interaction she gets from the people around her, often losing focus on the object at hand and choosing to look at the people near her… unless there’s a ceiling fan.

A BIG congratulations to our tiny little girl for making her milestones thus far, and being the little chatterbox that mommy is, too!

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