Marvelous Monday

Hello Reader! I missed you last Monday- BUT the site made a seamless transition to its new host and here I am!

As many read yesterday HERE, I lost my father 15 years ago. This week, what I am thankful for is my niece Hadley. She is in my life because we were meant to have a special bond- a connection only an aunt can have with a child- to keep each other smiling when we forget how. I took Hadley aside as her party was winding down and we had a little talk. She smiled at me, and drooled a bit- to most it would seem that she didn’t understand me- but her smile came just as my eyes began to tear up and she let me hug her to me. It was a brief moment, but I am so glad that we had it. I love this beautiful girl!

Hadley's Party

My random of the week is date nights! I agree everyone needs some time without their children, but I don’t know that I’m ready for it. We went out to The Grand Tasting for Eat Drink RI festival with tickets that we won.

EATDRINKRI

It. Was. Amazing! Not just because we felt like we were just dating again (getting a little day-drunk will do that to you!), but because we hadn’t been out in so long and it wasn’t forced. I felt comfortable, albeit nervous, about leaving Addie, but I knew that she was old enough to communicate her wants and needs well enough to my mother-in-law and that she would have fun. Lots of my friends need to go out, but that need is not something I feel yet. Maybe it’s because I don’t let myself- it’s not like we have excess cash to go to dinner or the movies, but truly, I think it’s because Dave and I don’t get much family time and that’s the time we want to spend together. We dated and got married and had 3 “single” years together- in our first year as parents we wanted to be parents as much as we could! They’re only in babyhood once- we will be married forever <3 Thank you to Jen at Keekoin for the opportunity to have a beautiful afternoon together and my in-laws for taking such great care of Miss Adelaide!

Addie at InLaws

Lastly, my information about dwarfism is an update on Miss Addie AND a little bit about why we travel. We went to Delaware last week and had a great check-up (and first visit) with Dr. MacKenzie. Addie didn’t get the full skeletal work-up (thanks insurance company), but she did have two spinal views and an x-ray of her lower limbs (read: legs) and all of her “pictures” looked great!

As I’ve mentioned before, having the proper care for children with skeletal dysplasia is very important. While many children are perfectly healthy, monitoring their bone growth, as well as their overall health and development are very important factors to having a healthy adult life. Just like an average height child with a difference, parents want to bring their children to the person who knows best about their child’s condition- whether it is thyroid or behavioral, a hearing loss or vision problem, tippy-toe walking, etc. Addie goes to the closest doctors who specialize in, not just “has patients” with, skeletal dysplasia. Thankfully, the closest doctors are also on the medical advisory board for the LPA- which makes me feel all the better about her going to them. Dr. Bober (who was away on personal leave this visit) is her geneticist, and Dr. MacKenzie is her orthopedic specialist. When we saw him, Addie was in great spirits and loved playing on the table (i.e. eating paper).

Exam

We travel 350 miles (each way) to Wilmington, Delaware to A.I. DuPont Hospital, where we see these two specialist who work as a team, every six months. It’s amazing to see Addie’s progress and the amount of work that goes into proper care- all the questions, the physical exams that are done so gently- using minimal invasive tests like blood work- in favor of research and a thorough physical exam, the listening and true concern for each question we have, and making sure that we are comfortable with the care plan given- all make Dave and I so happy we are able to make the drive. We are lucky that my parents live about 80 miles north of the hospital so we stay with them on our visits, but there is a Ronald McDonald House there, too, and I know so many families who just love how welcome they are there. The hospital is pretty great, too, because right outside they have a beautiful playground with lots of places to sit and enjoy the weather! Addie LOVED playing after her appointment and got to go on a swing for the first time! …Of course for our picnic, we went to the local Saladworks (YUM!) and got our favorites to enjoy :) I wish Rhode Island would open a location!

Playground at DuPontEating together

This was Addie’s first visit to MacKenzie, and he saw that her kyphosis is still there, but he is hopeful that it will straighten itself out as she learns to walk and hold her spine straight, and her legs look great, too! I have been SO worried about her ankles, as they seem to bend out- I’ve never seen another baby with ankles like Addie’s- but he told me that that was normal. I have learned to laugh when I hear that word, but in this case it made me smile. Now I know that it’s normal for my achon baby to have ankles like this- sometimes it’s strange to be normal :)

Thanks for catching up with me! I hope you have a beautiful week ahead and a Marvelous Monday, today!

Comments

  1. says

    I’m so glad you enjoyed your day date with your hubby. How many BEVERAGES where there?? Holy smokes! The Dave’s coffee cocktail was insanely delicious. Glad you won the tickets! And I love that all is going well with Addie and her appointments. You’re such a great mom, giving her the best possible care in the world. She is one happy, beautiful child. And every person’s definition of “normal” is different. So happy you had a good visit. :) PS- I want a Saladworks, too!!!

  2. says

    So glad you had a great date night, that Addie had a great doctor’s visit, and I too love Saladworks ;-) Love the pics of her on the swing – that pure joy they express swinging back and forth always warms my heart.

  3. says

    So happy you guys won those tickets! That looked like it would be such an awesome event! Happy to hear the great news about Addie too! & love the pics! :)

  4. says

    Addie is so grown up!! So pretty!
    I agree with that last sentence you wrote: sometimes is strange to be normal. Even before Clara, “normal” was a word I avoid to use,because I believed and still do that average is the correct word. But now, normal just is a meanless word.

  5. says

    So glad you had such a great day date!! (And day drinking is awesome) AND I am thrilled that Miss Addie’s appointments went great!! She’s so flipping cute. Her smile is contagious!!

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