Tag Archives: AH

Marvelous Monday, Indeed!

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Filled with Thanks

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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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Filed under Achondroplasia, Community, Educate/Adovocate/Make Change, Parenting/Family/Lifestyle

Preparing…

I receive emails every week asking me questions about dwarfism, Addie, diagnosis, signs, etc. I got the following email (personal information removed for privacy) and wanted to share it with you in case you (or someone you know) have questions about a recent diagnosis:

First off your daughter is ABSOLUTELY BEAUTIFUL!!! I am 22 weeks pregnant with my first child and my husband and I were told at our 18 week doctor visit that our daughter most likely has a form of skeletal dysplasia. After sending us to the Children’s Hospital and doing ultrasounds and a CT scan they narrowed it down to achondroplasia. Although they won’t say 100% or not if she has it because we opted out of doing the amnio since she didn’t have any other chromosome disorders. When were you told or diagnosed that your daughter had achon? We are just worried and scared and don’t know where to begin since neither side has a history of skeletal dysplasia. We go back to the doctor April 23rd and will hopefully learn more then, but I am wondering if you could give me any advice or suggestions on what to do to help prepare for a child with achondroplasia. I have read that achon children will have problems with sleep apnea. Also I have read that it is advised not to put your child in a bouncy seat or swing. I am wondering what I should register for at our baby shower. I appreciate any help you can give me. Thanks in advance for taking time to read my email.

I responded:

Hey (name)! Congratulations on your pregnancy! You’re halfway there- are you excited?

Thank you for checking out the blog- and Addie <3 She’s the light of our lives and also our first baby. We have no history of skeletal dysplasia in our family, so we were surprised- We didn’t learn about Addie’s diagnosis until she was about 9 1/2 weeks. Addie was born average size (18inches and 7lb,7oz) with no bossing of the forehead or noticeable trident in the fingers (where the 4th and middle fingers split). 80% of the time, children with achondroplasia are born to AH (average height) parents and have AH siblings, etc. There is a whole numbers-based system I could lay on you about that- but truly, it’s not important now. After her birth, a genetics counselor will speak with you and you will have many opportunities in life to go over that. For now… let’s talk baby gear!!!

We didn’t know about Addie being “achon”, so we had some things that we had to return, or re-gift… clothes being a BIG issue. Personally, I suggest keeping ALL tags on clothes- bringing one NB and one Preemie outfit for going home from  the hospital (Addie was in NB and it was huge on her), and keep receipts for everything. Besides that, there are certain things that should not be used due to spinal issues like:

Bumbo Seats, or similar designs. Our babies have spinal differences, and should not be propped up to sit. For this reason, some milestones will be slightly delayed (See CHARTS), but do not fear. They find their way! Addie army crawls all over the house and loves to pull everything on the lower shelves down on the floor in her reign of terror :) It drives the dog crazy.
Slings shouldn’t be used because there isn’t spinal support. I believe we CAN babywear our LP babies, but we have to make changes to each product to provide support and make sure the head and neck are supported.
Umbrella strollers don’t offer support to the spine.. I will make my only stroller recommendation below.
Bouncers, swings, sling seats, jumpers (clips onto the moulding in a doorway)- HARD BACKED items are mostly ok, you just want to make sure that there is plenty of back support! Addie likes being in an exersaucer, but not until she was well over 3 months and it has to be on the lowest setting (make sure it’s adjustable) so her feet touch, as the legs should never be hanging as it’s bad for the hips. The stability is good in the saucer FOR ADDIE (but not all achon babies have the core muscles to be in one and can damage their spines- TALK TO YOUR DOC FIRST), but jumpers that give leeway to movement can be a lot for their legs and back to control and cause spinal injury.
Preparing for a baby with achon, is just like preparing for any other baby (although if we had known prior to her birth, I  would have looked into NOT getting lots of clothes and certain baby things). All your little one will need is love. Some kids that are said to have dwarfism, are just little at birth. Some do end up with a type. Without amnio, you won’t know for sure- BUT I would not do the amnio, either! If you can, research doctors- and make sure you speak with your chosen pedi about the diagnosis. We see Dr. Bober for genetics (every 6 months) and Dr. MacKenzie (orthopedics) in Delaware… we also have local doctors: pedi, ENT, audiology, neuro (for sleep studies), etc. Early intervention is state run and you will, with a dwarfism diagnosis, qualify for services- there is NO need for therapy right off the bat. We use EI for the pool and some sign language classes as Addie had some initial fluid in her ears and hearing loss- but the PT does not touch Addie- she just monitors her. As I said, our babies are a bit behind AH kids in their motor skills, but they get there and they do it their own way.
As far as your registry goes… people will give  you clothes, no matter what- so I chose not to register  for any except for the very few outfits I wanted Addie to have for sure. Some items we LOVE: Rock n Play (perfect for sleeping next to you in the room- allows for slightly elevated sleep if there is a breathing issues, Graco Blossom highchair, Mia Moda Facile Stroller (THE ONLY UMBRELLA STROLLER I WOULD EVER RECOMMEND FOR OUR BABIES- there  is a crossing ‘X’ at the back, and an adjustable foot rest- it provides the best back support I’ve seen in any stroller)- NO UMBRELLA STROLLER SHOULD BE USED PRIOR TO SPEAKING WITH YOUR DOCTOR, lots of small toys- I love the Green Toys teether, and the Angel Care monitor- Addie sets hers off sometimes- it’s been helpful to tell when she’s having a particularly tough night in the breathing department, and a good way for tummy time- which is crucial for a strong neck and back. For you… the Mombo Pillow! I used it for feedings and to help Addie now when she’s sitting up in case she goes backward!

This is A LOT of information. I am here to answer any questions you may have and I am honored to do so. Please let me know how your appointment goes in a few weeks, and let me know how this is all settling with you before then!!

~ Chelley

*Legality clause*
I am NOT a doctor and all medical questions should be directed to a medical professional. I will tell you what Addie’s doctors have told me, however, in an attempt to help educate and offer other opinions.
I want to add that while many achon children do have apnea, many do not. A sleep study should be done early on, and yearly for monitoring under the care of a neurologist who is familiar with the differences an achon baby has.  -My apologies for forgetting to add this to my original email!
Addie has had two studies done and had much improvement in her second- leading us to yearly studies and not half yearly! You can read more about them: ALL BLOGS WHERE I TALK ABOUT SLEEP STUDY  Hope to hear from you soon!
And that is that! I hope that this information is helpful!

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Filed under Achondroplasia, Educate/Adovocate/Make Change, Parenting/Family/Lifestyle

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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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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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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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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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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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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