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:

That’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.

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.

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!

Delaware

And so… finally. How was Delaware?

It was amazing.
It began with me missing the exit, and ended with me in tears at Saladworks.
In the middle, I suppose, is what you want to read about.

We got up early on Thursday morning and prepared ourselves before dressing Addie in her finest romper (read: simple to get her in and out of). I must have been incredibly nervous, because I didn’t take one picture. Not a single one.

Once we were in my mom’s minivan, I set the GPS and headed to the closest Dunks. We loaded up on coffee and jumped on the PA Turnpike. My hands were sweaty, despite the chill in the air, and the drive went well. It turns out that Wilmington is only 70, or so, minutes from my parents’ house. Even missing an exit, we still got to the appointment early. We arrived and were directed to the clinic, where we were welcomed with smiles and open arms. But, enough of that- onto the meat:

We learned a lot of things in our 80+ minute meeting with Dr. Bober and his assistant, Angie Duker. These were the thoughts I’d had just the day after our trip about our experience so far:

We arrived at the train station just 15 minutes before we had to board. It was perfect timing. As we ran in through the thick drops of drizzle, Dave grabbed some milk for the coffee we had made, and we waited for the All Aboard to flip up on the Amtrak screen. We loaded ourselves onto the train; baby, suitcase, duffel bag, diaper bag, toy bag, lunch bag, milk cooler bag and car seat. Once settled in our seats, Addie took her bottle of milk. We pulled into Penn Station in New York a few hours later and I moved into a window seat. As we pulled out, Addie looked out the window, then back at me. Belly-to-belly, she plopped her head down on my chest and fell asleep for her nap. Right on time.

She awoke, her noggin popping up with a smile plastered across her face. Then a frown. Time to eat! Addie chowed down her milk and then happily cooed and spit for a while.

She was wonderful the whole ride; following her nap and eating schedules as usual- and making do with having to sleep wherever- including on my legs.

Then it was Thursday, October 11. The day began like the rest had in the previous week. I was up at 4:30am, unable to sleep through the night since receiving my copy of the sleep study. Mild disordered sleep.  What did that mean?

As Dr. Bober reviewed all the papers I had so carefully sorted (Medical Records, Birth Records, Early Intervention, Genetic Testing, Skeletal Survey and Results, Growth Charts), I was still nervous. Finally, he asked Dave and me what we knew about achondroplasia. I froze. What didn’t I know. I said a few things and he stopped me. We reviewed my biggest fears, from central sleep apnea to decompression surgery and hydrocephalus. We talked about milestones (I have some new charts… I will make a page for them!) and we discussed sleep. While Dr. Bober was not concerned, he did tell me to just keep an eye on Addie and if I notice any changes in her sleep to contact him. However, as of October 15th, when we went to the sleep specialist in Boston, we are scheduled for a second sleep study in March. The sleep specialist would like to see her central sleep apnea occurrences a little lower than they are. Who knew one person could need so many doctors, yet be deemed healthy?

Beyond that, we reviewed Addie’s soft spot and it’s measurements. We were told what to look out for and that a little bit of extra fluid is common, but nothing to worry about. We were told to feel her soft spot once a week. I check every night.

Dr. Bober also talked about spinal stenosis, and the difference between it being a feature of dwarfism and critical. I felt relieved to know that Addie doesn’t present with any signs of critical stenosis, but knowing that the first 24 months of life are where hydrocephalus, bowing and stenosis will most likely show up in childhood, I feel like I’m having a private countdown while I should be enjoying each day, I am bombarded with looking and checking and feeling and testing.

I know. I need to relax.

Then, we moved onto examining Addie: 23 3/4 inches, 14 pounds 2 1/2 ounces and a head circumference of 17.8 inches!
She can’t straighten her arms all the way, which is just another feature of dwarfism that many people have, and, after reading the doctor’s notes (sent to me in less than 3 weeks!), she shows some signs of bowing (bilateral genu recurvatum). Yes, I looked that up- as well as over 10 other “musculoskeletal” notes about appearance. We will be seeing Dr. MacKenzie in April, as well, and he will probably have more to say about that then.

There really wasn’t bad news, per se-,but there were some things to look out for and preventative measures that need to be taken. For instance, a common issue with achondroplasia is kyphosis. Addie presents with lower lumbar kyphosis (when you hold her, you can feel her spine stick out in her lower back):

The fear with this is that in the lumbar region of your spine, your bones sit parallel. If your spine curves the opposite way, the bones will grind into each other, causing the bones in the spine to break and look “bullet-shaped”, instead.

This is not Addie’s spinal x-ray, just an example.

When we hold Addie, we need to provide full back support. That includes when she is up against our chest, applying slight pressure to the base of her spine to help straighten it out, and when she is in our lap, letting her lean against us. Anything she sits in needs to be a hardback, allowing her to conform to what she sits in and not the other way around.

Pressure on the low back.
Leaning back to create spinal support.

Sadly, this limits our carrier time to never. I had always imagined myself a baby wearing mama, but having a healthy baby means more- and so, my arms are always full and so is my heart!

Addie’s first pic in the Bjorn… before we knew!

What IS good for her, however, is tummy time, as it brings her back into an arch… which is great! She is a happy camper on her belly, for the most part, and (as of October 27th) if she doesn’t want to be on her back, she rolls to her belly = A total baby-body workout!

Addie playing some music on her belly!

Some more interesting facts:

* Due to the shape of the ribcage, the liver is [usually] able to be felt. This is not true on an average height child, which is something to alert doctors of should they have a concern. Sometimes, it is falsely interpreted as a swelling.
* Addie’s arms do not fulling extend by about 20% at the elbow. This is totally normal, and should not inhibit her in any way. She does have lower muscle tone, primarily in her arms, but that is just another feature of dwarfism. As well, her limb disproportions were noted in her arms as rhizomelic, and her lower extremities are rhizomelic light. This refers to her arms as short (the long bones) and her legs as mildly (for a dwarf) short. She will, most likely, be around 4 feet tall.
* The diagnosis of achondroplasia could have been made with ONE x-ray of her pelvic bone! The blood test, however, confirms it.
* Dr. Bober feels Addie is doing great! (This is my favorite fact!)

And so, this is how Delaware went.

We met with a great family when our appointment was over, there were lots of smiles and handshakes and then we were leaving… and I was shaking. I was gripping Addie so close to me I could feel her little Buddha-belly flatten against me.

Dave and I decided that we had not eaten, and so we needed to get food in Delaware. (If you’ve ever seen me hungry, you know it’s a sight better left for horror films and psychiatry studies.) We made a left out of the hospital and came across a Saladworks- one of my favorite places to eat. We walked in and parked ourselves at a table after glancing at the menu. I knew what I wanted, and as I told Dave I looked over at Addie. Perfect. Small. Addie. And I grabbed Dave, locked myself in his grasp and cried into his shoulder. I cried for the relief that Addie is OK. I cried for the fact that she will have struggles. I cried because I have not slept through the night since she was born.

We learned a lot, and we will continue to learn. Thank you for taking this journey with me as a woman, as a mom, as a parent, as a friend.