Tag Archives: achondroplastic

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:

IMAG1995

IMAG1994

IMAG1993

IMAG1999

IMAG2001

IMAG2006

IMAG2005

IMAG2011

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!

17 Comments

Filed under Marvelous Monday

Does she have what it takes to be…

The next top model?

I think so.
It brought me to the research of if others thought so, too.

In August I posted on Carter’s wall on Facebook:

Dear Carter’s,
My name is Adelaide (A is for Adelaide). I am an achondroplastic dwarf. My mom has been struggling to find me clothes that fit and trying to sell the clothes that are too big for me so she can get me new Fall clothes. My dad works really hard, so mom spends sparingly, but says I can’t wear summer clothes in November!
This is my favorite outfit: from your store, INCLUDING my hair clip (except my shoes).
I am 4 1/2 months and I wear newborn clothes. I wasn’t diagnosed until I was 9 1/2 weeks and my mom and dad are average height adults, so my mom had taken all of the tags off my stuff and washed most of it: she never thought I would be a dwarf- but she and dad love me no matter what!
The employees (especially Deb) at your Cranston, RI store have been wonderful to me, and mom can’t wait to go back and buy me my Christmas dress! Thank you for offering newborn separates in the same styles that big kids can wear. I am growing smart and strong, but not so big, yet. It’s great that you have such awesome styles and great prices to help my mom outfit me (and save dad a few hours at the office).
Your biggest fan,
Adelaide (Chelley Martinka and David Martinka, too)

When it comes to being different, I know things aren’t easy, but I wanted to know if there was opportunity and I came across this wonderful article about people with Down Syndrome in the media. In it, Model Club Inc. is mentioned. I dug further into Model Club and came across an open call in our area. I brought Addie, explained that Addie is a little person, but no one cared. She’s really cute, said the woman checking us in.

And so, Addie is being represented. We have no jobs yet, but I know that Addie is beautiful, and I’m hoping that she can help promote awareness in the media about dwarfism. There are opportunities that have presented themselves to LPs in the past, and I hope that they do so for Addie, too (not just for her college fund); like this: Oz The Great and Powerful! In Trailer 2, we know Mikey… he is at 1:50, back left stack, in the middle in the blue vest!  Addie gives a special shout out to him (and his lovely girlfriend, Jess)!

Onto her career? Maybe… maybe this will just be some fun she and I have taking silly pictures. Either way, she’s my top model. Her first Baby Book Card:

3 Comments

Filed under Community

Achon Gerber Baby?

Adelaide is entered in the Gerber Generation Photo Search! She is adorable, and her little smile fills up my heart! I hope you feel the same way!

PLEASE CLICK TO VOTE FOR HER!!!!

First achondroplastic baby to be a Gerber baby?! I think YES!!!! Vote for Adelaide!!!!!!!!!!!

You and your friends can vote once a day every day from September 4th for Adelaide to win a $10,000 Gerber Life College Plan!

Thank you, in advance for your support!

3 Comments

Filed under Achondroplasia, Community, Milestones

A is for Adelaide, Achondroplasia and AVOCADO!

First food: Avocado… and it was yummy!

Dave and I decided, long before we knew boy or girl, that our baby would have avocado as their first food. As lovers of the fruit (yes, it’s a fruit), we were pretty excited for the opportunity to share it with our little one. I was concerned when we learned about Addie’s diagnosis, because, often, achondroplastic children learn to sit later, have larger adenoids, and have oral issues, etc. Addie, however, is doing great and we were given the green light at her 4 month appointment to start solids!

I wanted to make sure Addie had the best food. A family member passed along a jar of stage 2 food (due to expire in September) and a few “to-go” pouches of organic fruits, some stage 1 and 2. Knowing that I would not be using the stage 2 before it’s expiration, I ate it myself (mmmmm) and saved the jar for my first foray into making Addie’s food.

Hesitant to begin with anything but cereal, Dave and I decided to stick to our original plan and begin with avocado. As an “expert”, I went to Stop & Shop and searched through each green fruit until I found one that was almost ripe, but slightly soft. I let it sit in the windowsill for a day before opening it up. I started by cutting off the tips of either end, where it was nice and soft, and scooped out the contents with a spoon. I then added some of my milk and mashed. And mashed. And mashed. I then added more milk. And mashed. When it got to the consistency of slightly thickened breast milk, I capped the glass jar, formerly containing an organic banana mix, and put it in the refrigerator.

And then, Saturday morning came. As I placed Addie in her highchair, I was nervous. Allergies were a concern, more so, growing up. My newborn became a baby, my baby will grow until she doesn’t want to be my baby anymore and then what? I’ll tell you what: it all begins with avocado.

August 25, 2012. Addie enjoys avocado!  She is a champ with a spoon- knowing to open for it AND liking avocado! We tried it at her 11am feeding- giving her a few baby spoons full, then cleaning her up and offering her usual bottle of freshly pumped milk. She did beautifully:

Because Addie is only 4 months, we plan  on giving her one new food every week, instead of every few days. We are planning on squash, sweet potatoes and oatmeal cereal, as rice cereal is so binding and (only in my opinion, and I am not a doctor) has minimal nutritional value. I was originally so nervous to begin the solids because as a parent of a child with dwarfism, you only read about kids who can’t sit up, or swallow, or breathe properly, and not about the kids who don’t have a million surgeries. I feel like we are so very blessed to have Addie in our lives because she can and will teach us so much about ourselves, about life, about acceptance, about endurance and, because she loves avocado.

If you missed the love… I made a second video!

3 Comments

Filed under Food!, Milestones

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!

4 Comments

Filed under #educate, Achondroplasia

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!

1 Comment

Filed under #educate, Achondroplasia, Milestones