Tag Archives: LPA

Marvelous Monday

I seriously cannot believe it’s Monday. I feel like we didn’t get a weekend- it was so jam-packed! …and while I am certainly stressed out and frazzled from the festivities, it’s the best feeling in the world.

I usually have a format… thankful dwarfism random that I follow, but this week, I have two thankful-s and no random. I know. I live on the wild side- even breaking my own rules!

SO this week, I am thankful for all the medical wonders we have at hand. While it is not my story, I will say that my newest nephew, Beckett James, has arrived. As I would expect any child of my bestie would be, he has a bit of a flare for the dramatic and didn’t make his entry into this world easy. But he is here. My beautiful (by everything but blood) sister is not only doing well, but looking like a super model, and they are heading home today. I spent much of my weekend running between birthday celebrations and the hospital, and I feel so tired but so energized at the same time. That feeling of holding new life. The one-on-one time of a new baby, in the quiet of the night (sure, I stayed a bit beyond visiting hours), talking to my friend. About our parents, about the future, about our families, and plans and and and. It was like a sleep over, with cooing and sweet baby breath. I took photos as my nephew took his first bath, and we laughed at re-learning to change a diaper (we both have girls for our first babes). This experience made me wish I lived closer to my big sister in Florida, wishing I could have been by her side, and also brought about such a deep love for this woman who mustered all of her love and strength to bring sweet Beckett into the world. I’m so excited for the next chapter!

And what else could I be thankful  for this week, if not the amazing women who rallied behind me almost 2 years ago through Rhode Island New Moms Connection? These women have given me so much love and support, and having them surround us to celebrate Addie’s second birthday (a little early) meant so much to us. We played, ate delicious pizza and mini cupcakes, and then played a bit more… and I watched as each child made connections to the others- all of whom they have known for their entire lives. Many of the kids ran up to other parents, giving hugs and kisses, because we all know each other. We all have a bond with each other- those first few weeks of motherhood that we spent together sitting on a floor with our new babies, trying to make sense of what we were doing right, and what we needed to change. Having those same women beside me… that’s what keeps me going. But there’s more. There are the moms I know from other personal experiences… like a friendship kindled over a wedding gown, flourishing through a love of hockey and sharing a first pregnancy! And friends from our cherished LPA community who made the hike to play, and pick up good conversation like we’d just spoken last week. A comfort and bond brought to us by a shared difference, making us  common- but a friendship we grow together watching our kids enjoy Life.

#aisforadelaide #birthdayparty #hangingaround

Just hanging around (BY HERSELF!!!!!). She’s come a long way in 2 years!

I have been blessed by my experiences, no matter how frazzling they may be, because they have brought me right here. To you. What will happen this week that will test you, but also teach you, nourish you and grow you? I hope  you find those moments and smile.

*  *  *

And what’s new in the dwarfism community this week? The LPA National Conference registration opened on the first!!! I would love to know what families will be there this year! We are so excited to meet new people, explore California and learn as much as we can at the workshops! Stay tuned to the blog for my conference tips later this month!

Lots of love to you this beautiful Spring week!
xo,

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Adelaide has achondroplasia

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

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

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

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

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

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

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

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

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

Photo: Dimery Photography

Photo: Dimery Photography

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

Adelaide has Achondroplasia.

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

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

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

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

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

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Marvelous Monday

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

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

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

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

#aisforadelaide #firstdance #lparegional #2014

My daughter already has an amazing life.

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

#aisforadelaide #ladiesnight #LPAspringregional2014

I have an amazing life.

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

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

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

#aisforadelaide #swimming #capecop #seacresthotel #lpaspringregional2014

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

Happy Monday, Reader!!!

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The Sum of all its Parts, LPA DC National

I’ve found myself delaying about writing more about the LPA National Conference in DC, because when you’re in a workshop and taking notes, it is hard to put what you’ve written into paragraphs without paraphrasing (perhaps incorrectly) what was said. Because of this, I took my notes from a few different workshops and edited them for you in the same note-style! I would love to answer questions in a forum-style in the comments section and I am very excited for this post to educate both you and me! I would love to know if you have anything to add, as well as find the answer to any questions you may have that I cannot answer. Thank you for being patient with me as I sort through the wealth of information I heard and experienced the DC Conference. I hope to meet more friends and family in California this summer!

#LPAdc2013 Lpa National Conference notes #aisforadelaide Know Your Rights #hypo #achon

#LPAdc2013 LPA National #Aisforadelaide #bowing #achondroplasia #surgery

#LPAdc2013 LPA National Conference #surgery notes #Achondroplasia #aisforadelaide #spine

Questions, comments, other ideas, thoughts, educational/life experience! Share, please!!!!

 

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Marvelous Monday, Indeed!

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Filled with Thanks

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Marvelous Monday

What a wonderful week! Welcome Monday! I want to thank our bravest members of society and salute you this Veterans Day. The strength and courage it takes to defend this country is not one that has been, historically, simple or easy. To those of you, past, present and future, I am thankful for you.

What else was I thankful for this past week? Besides an Eagles‘ win yesterday:
4th: My littlest lady with the biggest appetite. She is beyond full with a hunger to learn, a heart bursting with love and a pallet that would make most foodies swoon!
5th: Whole remedies! We went to Wholefoods to pick up some natural things to treat colds, and Addie, Dave and I kicked whatever was coming on without much inconvenience!
6th: My blogger connections. We maybe mostly internet friends, but the support I get from my “co-workers” and readers mean so much to me.
7th: A safe mom-mobile!!
8th: A husband who pushes me to dream bigger, then pushes himself to make those dreams a reality.
9th: All the wonder and innocence that is wrapped up in my sweet, Addie. Her joy at watching others have fun, her desire to make others smile and her determination to get in on all the good things in life define me as a human. There is some good left in the world, and I have a sliver of that truth right here in my home:

at the park
10th: A birthday celebration that truly showed how life can fall into place. When I was just home from the hospital with Addie, friends came to visit… then it all sort of stopped. At some point we all became really busy and went in different directions. Many have come back together, but in this past 18 months I’ve met new people, reconnected with others and remained tied to a few. Brunch in the morning and then spending a quiet evening with dinner cooked by my personal bestie-master chef, some red wine, little girls babbling away and the men installing a faucet was the perfect celebration to my Saturday night. Surprising me the next day was my father-in-law, who delivered a cake to the bar where we would later watch football (the Martinka men aren’t always on point, but this was kind of awesome!). I also got the best cards from family all over- like Florida and California and my baby brothers didn’t forget to send their old sis a text <3

at the bar

When all the days culminate into a nasty week, it’s hard to remember the weeks that went like this. Here is it- written on the interwebs. No denying it… I have an amazing family surrounding me.

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This week, for dwarfism awareness, I have to share this:

Benefit Brew Graphic2

Just click the image to VOTE now!

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A random? I wanted to reiterate my thanks to You. You choose to read this blog and comment, follow, share. You educate along side me, spread awareness and take a journey with me through motherhood, a career change to writing and learning to take life a bit at a time. It’s not random at all, in fact. It’s all I think about when I sit to write, when I look at product pitches, and even when I present new information- I want to be sure the content I share is something beneficial. Perhaps a story that will bring happiness, create some normalcy or teach. Give an outline, offer some hope, or just make you think. I hope to share more products and lifestyle information in the upcoming year… mostly so everyone can have more options to win cool stuff (like my massage giveaway that just ended!). Please, keep doing what you’re doing- if you thought no one noticed, I did.

xo

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So, How was it?

It’s funny to look back and realize I haven’t answered one basic question about our summer trip to DC for the LPA National Conference.

How was it?

To be blunt… it was awesomeamazinginformativehelpfuleducationalempoweringfriendlyfunexpensive.What was all that?

It was awesome (and amazing)-
awe·some
ˈôsəm
adjective
adjective: awesome extremely impressive or daunting; inspiring great admiration, apprehension, or fear

So… that should explain that!

The conference was truly informative. I learned A LOT- some of which I’ve already shared, and some that is left to come. More than learning, stripped down, the conference was helpful. It was more than information from professionals- it was an experience. It was an experience that we will remember forever. Like when a stranger offers you a dime that you’re short at the checkout… you recall that moment years later. The National Conference was full of people who knew Addie, who thanked me for being CPL, who never heard of me, who wanted to share experiences, who wanted to tell me about the future. It was more than the internet and strangers giving me advice- it was parents, siblings, spouses helping me navigate a world that I am still fairly new to. Thus… I guess I summed it up by saying it was educational.

More than anything, as a parent, the National Conference was empowering. I learned so much about how I can advocate for Addie, and I was told I was doing a great job thus far. That may not mean much, but to anyone whose child is deemed “special needs”, someone giving you a pat on the back can mean the world. And lots of people told me I was doing great- hugs from all over- from Facebook people I’d only talked to online, to new friends I met in the lobby lounge, long after the kids were in bed. Late talks about growing up, or parenting, or about how good dinner was! The conference was friendly and inviting- to new comers and old friends alike.

Lastly, although it was so much fun, it was also really expensive! We have talked about going to California this coming summer, but are doubtful we will make it. There are certainly high hopes, but with all of the great aspects surrounding something of this caliber, there are obviously financial obligations. Although Addie didn’t reap the benefits we did, I suggest to go if you can- no matter the age of your child! If you plan on going to a National, don’t miss out on my next few posts about the conference- there will be some pretty fantastic tips in there!

Til then,

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Marvelous Monday

It’s Monday (again!), and I am ready for the week ahead- just 5 days until my parents (mom and stepdad) dock in Boston then Newport on their cruise!

For starters… I am thankful for my LPA district. We have a lot of events planned and though we cannot afford to go to most, it is always a treat when we get to go- and even more awesome that the one this weekend was the first time Dave was able to join in, too! This is also my dwarfism shout-out this week! A few people have found this blog, or me via Facebook, but they have yet to check out the LPA. This organization has been crucial in our education about dwarfism, as well as supporting us as we find the best doctors, activities and parenting advice.

I cannot say enough good things about the national level of the LPA, but it’s the local chapter that really created the close-knit community that I’ve grown to depend on. Mamas and papas who know the ropes have explained so much to me, as well as reaffirmed my belief that Addie can do whatever she puts her mind to- dwarfism is just a part of her, it does not define her. This was totally the case as she led us through the cornmaze at our Halloween get together in Southampton, MA at the Rolling Acres Farm!

cornmaze

Lastly… my random of the week is a huge THANK YOU to Jen from JLS Photography! We grabbed a LivingSocial deal months ago for such a great price, I must admit I was skeptical but… After postponing our summer session due to Addie’s tendency to overheat, Jen braved a threatening sky to take our Fall portraits last weekend at Lincoln Woods State Park. It got a bit chilly, and Addie was squirming for a snack, but she stuck it out with us and made our holiday card decision difficult! These are a few of my favorites, but won’t make it to your mailbox (I couldn’t choose them all for our cards!). As usual, these pictures are not for copying or sharing without permission. Thank you!!!!

AddieandDaddy

Adore

Fall

giggles

innocence

missindependent

Peekaboo

reality

Rockon

Superbaby

Thebeach

themartinkas

thesetwo

thetreeoflife

Wereobsessedwithher

Have a beautiful Fall week!!!

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I’m leaning towards…

In this 4th installment (of 10) regarding the LPA National Convention we attended this summer in DC, I am writing about 504′s (vs. IEP), and why I think it will be enough for us.

A 504 is part of the Vocational Rehabilitation Act of 1973, and prevents discrimination against individuals with disabilities from any institution that receives federal funding. In our case, this would be schools. Children considered for a 504 are often not eligible for many accommodations regarding emotional and cognitive considerations, but have a condition that may affect their ability to function in school- physically. This is in comparison with an IEP , which is an Individual Education Plan, and goes beyond what children need physically. Many times, these services include occupational therapy (OT) and speech, as well as reading, further assistance in learning techniques, etc. There is a lot of testing before this document is created, and it is legally binding. An IEP can follow you wherever you go, and act as the plan for your child’s needs.

For us, I think the 504 plan is enough. Addie’s cognitive skills are at or above her age range, and her ability to push through a crowd is uncanny (is she living through me and my punk rock years?). However, things that can be addressed in the 504 are much needed and will make Addie’s life easier and safer when she is enrolled in school. An IEP can also address these issues in the “Accommodations and Modifications” portion, and thus you don’t need a 504 with one. However, if there are no cognitive issues or further therapies needed in school, perhaps the way to go is to just research all adaptations needed and have them all in a 504 that you discuss with your chosen school well in advance of your child’s start… there are always things that need modification to their modifications!

For a 504, you will have to talk to your school the year before your child attends. Because there is no extra funding for 504 plans, you might have to be a bit of a squeaky wheel… a well-liked squeaky wheel, at that! Keeping that in mind, if you have any tools that would be helpful (hooks, stools, screws, plans, etc.) in aiding any modifications, they will most likely be much appreciated.

… I think my point may be understood. With an LD (learning disability), you are certainly eligible for an IEP, but with Addie’s current track, we are more worried about her physical limitations. For us these are inclusive of everyday things, but also, the things I hope I never have to know, like in a fire, are all doors able to open for her?

Considerations for your child should be made with them. Visiting the school with your child and a tape measure will better arm you, as a parent or caretaker, to know what is needed or lacking. The process can take a while, and to be inclusive, your child, yourself, teachers, other staff, the principal, counselors, therapists, service providers and (if available) the director of special education should all participate.

There is so much to think about, and it call all be overwhelming, so I will leave you with this…

Consider:

  • Walking, or riding in the car?
  • Procedure for riding the bus, not just to go to school but for field trips- is there a booster, car seat? Are there belts at all? An aide?
  •  Is the parking lot easy to cross? Are there blind spots?
  • Are all walkways paved?
  • Are doors accessible with handicapped buttons at a reachable level?- all doors need to open easily for your child, especially in an emergency.
  • Are there lower lockers or cubbies?
  • Is the playground safe? Are there people to monitor climbing and falls?
  •  Is there a stool or chair for your child’s feet so they aren’t hanging in the air? Being comfortable is important to learning, and the health of your child’s hips, back, knees, etc. Check out the Tripp Trapp Chair!
  • Are classroom materials within reach?
  • Is gym class safe and is your child being included?
  • Are all bathrooms accessible- doors, toilets, sinks, soap dispensers (NOT just hand sanitizer), paper towels, lights, mirrors, sinks, faucets?
  • Is the water fountain accessible?
  • Can your child reach the cafeteria line? Trays? Food bar? Utensils, napkins, condiments? Are they comfortable at their lunch table?
  • Safety drills… are they safe for your child?
  • Is there a school nurse there at all times? What times is s/he there?
  • Does your child need more time to get to and from class?
  • Can your child carry the required texts through the halls? Can there be a home set and school set of texts?
  • Lastly: Was your child involved in this planning?

There are so many things to think about, it is hard as an AH parent to think of all the things our child would need. And an LP parent may forget those schooling days and what was hardest for them. When choosing your plan, and executing its initiation, know that things will always need revision and compromises will need to be made. Sure, compromising safety isn’t in the equation, but perhaps donating some of your own items will help make your child’s learning experience all they deserve.

With just a few years before Addie heads out the door and into the capable hands of our public school system, my mind is firing away at all the holes that will need filling upon (and before) her arrival. I am so thankful that I was able to attend the workshop that described all of the necessary items to me and taught me how to make her educational experience both comfortable for her, and retain my sanity (aka Addie’s safety).

Please- share your experiences!

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