Early Intervention

Addie went to Early Intervention for her physical interview.  She automatically qualifies for the program based on her diagnosis, but they like to get together to check where her skills are.

She’s 3 months… what skills?

I began the interview by handing the therapists toys that she likes, as she was completely disinterested in the ones that they wanted her to track and follow.  The red and yellow rubber “toys” she presented to her looked more medical than playful; I was glad that I brought along a few of her favorites. Once she proved her skills there, we moved onto a few other things, then questions about her eating.  These confused me, as they were asking about how she takes pureed foods. I’m sorry… what? She’s 3 months- update your questions to coincide with what the AMA guidelines are for feeding.

After more noise making and eye tracking, a little bit of reaching, and a whole lot of “prayer hands” (where she holds her hands in a prayer-like fashion), the therapists asked if I could pull her up by her arms to bring her into a seated position, which helps check her abdominal strength. Um, nope. Have you people seen her head size, which we discussed at length, and how I can’t let it snap back? She holds her arms and legs up in the air, she’s working her abs, let’s leave it at that.

So, we moved on. Sort of. One of the last questions included me holding her, facing me, in a slightly seated position cradled in my arms. From this point, I would drop her back, “just a bit”, to see if she startles.

You want me to drop her to see if she still has the startle reflex, which I said she did? Trust me. She does. And I’m not about to risk her head flapping back to prove it.

In the end, it was a fine visit and I agreed to worth with a therapist to come up with a care plan, but for now, that just consists of monitoring her motor skills.

I provided the therapists with a copy of the most up-top-date chart of where her motor skills should fall as an achondroplastic, and let them know I expect her scores from now on to be biased toward these age-appropriate, according to experts in dwarfism, milestones.

As it is, Addie scored at 3 to 4 months for each group, except social and verbal skills, where she is at a 4 month and 5 month mark, respectively. This was no surprise to Mima (my mom) or Daddy, as they both know how much I love face-to-face communication, always making eye contact with people I am in conversation with, as well as the fact that I love to talk. And I do so a lot!

It’s nice to see that being sure to speak with Addie everyday, encourage her to engage us in conversation and always make eye contact with her, whether she is playing with a new toy, getting dressed and counting her snaps, or in between the lines in a story- we are enhancing her communication skills.  I hope that she can keep up with her motor skills, but even if she ends up a big behind from AH kids, I know that she will reach her goals!

I do hope to add a few things to her goals, like looking at her toys more, but she just loves the social interaction she gets from the people around her, often losing focus on the object at hand and choosing to look at the people near her… unless there’s a ceiling fan.

A BIG congratulations to our tiny little girl for making her milestones thus far, and being the little chatterbox that mommy is, too!

Reaching Out

I got a phone call Wednesday afternoon. It was a conversation that lasted 51 minutes and 57 seconds, not once during which I yelled, begged or felt hot tears welling up behind a headache fueled by stress. Nope. This phone call has left me lighter, although I wish physically, mentally. In fact, I feel like a feather.

When Dr. Shurr sat down with us on June 22nd and told us about Addie’s diagnosis, I immediately began to research. Everything that came up was negative. From the media portrayal to stories of surgeries and even deaths. It was heart breaking. I felt guilty. I felt sad for Addie. I wanted to do everything to make life easy for her, and was left to feel like all I had done was make her life difficult.

So I did what I do when I need to vent.
I wrote.

I blogged and was inundated with response from a whole new community. A loving and understanding community- complete with information no doctor had presented me with.  I was relieved to find so many blogs with information, but where was the medical community on this one? Why did it seem that no one besides other parents knew about Achon babies?

So many people reached out to me, many emailing and sharing their stories and all they knew to help Dave and me navigate Addie’s future, and for that I am so grateful.  One mom, in particular, went so far as to call me. She is the phone call.

She shared her story about her daughter who is nothing shy of beautiful, and is completely average in all she does, except her height. She does everything her older sister does, including scaling the stairs of their multi-level home, and does it with panache!

Since I began this week with a healthy does of puff, I wanted to end it with another light-hearted piece, filling your week with the sustenance of life: compassion.

This mom spends her days helping other parents who are just learning about dwarfism, understand what lies ahead for their child, and know that there are good stories out there to go with the “bad”.  Sometimes achon kids and adults need surgery- average height children and adults are no different. Achondroplasia doesn’t have to mean a new home, not having other children or a constant battle with insurance- sure these things may present themselves in different was; a stool in every room, a sibling who needs to understand their sibling has a few limitations, and an unruly agent who needs a lesson in LP, but for the most part, it’s all  going to be OK for Addie. She is my little blessing, as every baby is to their mother. I love her- big or small, and I am so excited to journey through life as a mom learning all I can to make Addie’s life the best it can be for her before she ventures out and changes the world!