Happy Thanksgiving

The Smykay Family has a lot to be thankful for this year, including the fact that Trevor actually had the holiday off work to spend with the family. We had a great time at Grandma Adams's house with the extended family enjoying food, fun, and most of all, each other's company.

Since it was Audrey's first Thanksgiving, we decided to dress her up to suit the occasion. Okay, I am stretching the truth a bit. If it was up to me I would have just pulled something out of the closet. We have Aunt Angie and her shopping habit to thank for her cute, festive ensemble.

To make the day even more special we decided it was the perfect occasion to offer Audrey her first taste of solid food (good old rice cereal, if you can call that a solid).

Not surprisingly given her interest in other people's food for the past couple of weeks, she sure seemed to like it. Cousin Alexa even got in on the action, but Audrey thought she might need a little help, so her first spoon feeding even included a bit of self-feeding.

A fun and relaxed holiday to remember. It was even capped off by a practical joke. You know in college how it was always so funny to take a magic marker to the face of the first person to pass out at a party? Well, seems like Uncle Jay hasn't really matured past that particular phase and he surreptitiously altered Audrey's bib while pretending to help her with her vibrating teether...

Prematurity Awareness Day

Today is Prematurity Awareness Day and I would love to share Fletcher's NICU story. But I have been so busy, and his stay was so long, 90 days long, and so much happened in those 90 days that I could type for hours and only scratch the surface. So many people think that preemies are just mini-newborns that just need a little extra time to grow. That all of these cute teeny tiny babies "catch up by age two." Oh, how that could not be further from the truth (at least in the case of "micropreemies" weighing less than 1500 grams at birth, such as Fletcher). Pre-mature means just that. At birth, these babies are not yet mature. No part of them. Their lungs, skin, digestive tract, eyes, brain... every system is affected by prematurity.

I would love to raise awareness of the effects of prematurity by sharing Fletcher's NICU story, but I have been busy preparing for and attending an eligibility meeting with the school district to determine if Fletcher meets the requirements for special education preschool. The accompanying report states that "Fletcher does not demonstrate age-appropriate skills across all developmental areas" and concludes that the district will need to provide "occupational therapy, physical therapy, early childhood special education service, speech and language therapy, vision services, and assisted technology."

I would love to raise awareness of the effects of prematurity by sharing his NICU story, but I have been busy assisting Fletcher this morning during his special instruction and vision therapy with his EI therapist and his new ECSE through the school district.

I would love to raise awareness of the effects of prematurity by sharing his NICU story, but I have been busy this afternoon taking Fletcher to aquatic therapy with his physical therapist.

I would love to raise awareness of the effects of prematurity by sharing his NICU story, but I have been busy coordinating tours of special needs preschools, including one we are visiting tomorrow morning.

I would love to raise awareness of the effects of prematurity by sharing his NICU story, but I have been busy scheduling appointments including the hearing screening tomorrow required by the school district.

I would love to raise awareness of the effects of prematurity by sharing his NICU story, but I have been busy tonight attending a Parent Advisory Council meeting at the hospital where Fletcher was born with the hope of helping parents of future NICU babies find the support that they desperately need.

I would love to raise awareness of the effects of prematurity by sharing his NICU story, but I have to stay up until Fletcher is sound asleep and hook up a machine that applies gentle pressure to his core muscles throughout the night in the hope of preventing future muscle and bone deformities.

And this has been a fairly typical day. You see, for some people, the effects of prematurity extend far, far beyond the NICU.

Welcome Audrey

I have officially closed Audrey's blog and going forward will use this blog for both kids. I guess I could change the name to Smallest Smykays, but that seems like a lot of work for one little letter. Head on over to Smykeeny Baby Blog one last time to check out a video montage of the littlest one during her first month.

Mobility

Things have been understandably hectic around here (mostly in a good way) and my computer decided to take a vacation, but it is back, and I am going to try once again to devote a little more time to updating the blog.

The kids couldn't be more different in so many ways, but today they both worked toward a common goal: mobility. While neither of my children are independently mobile at present, they both spent a little time today working on their motor skills in their own ways...

Bittersweet

Audrey surpassed Fletcher in a motor skill this week. It was only a matter of time. She rolled over from supine to prone (back to front). It was amazing, thrilling, and, well, a little sad. It is crazy just how differently her body moves compared to Fletcher. It is just so easy.

I thought that prone to supine usually came first, but what do I know about typical development. Trevor was on a trip, so I called him with the exciting news and he informed me that she actually did this a couple times for him a few days ago and he must have forgotten to tell me... men.

Sorry for the prolonged silence and lack of recent pictures. My laptop is on the fritz, with the pictures tucked safely (I hope) inside. Maybe someday I will rescue them. In the meantime I am taking it one day at a time as Trevor has been working a lot and Fletcher is going through a SUPER CLINGY phase (at least I am hoping it is a phase).

Along with his clingy-ness, Fletcher has been throwing the biggest temper tantrums when I leave him alone in a room, especially at night when I go upstairs to put Audrey to bed. I mean cry-and-scream-at-the-top-of-your-lungs-till-you're-sweaty-and-snotty-and-hoarse tantrums. They have been pretty intense for the last month or so, but have gotten particularly unbearable since his surgery (adenoids and ear tubes) a few weeks ago followed by an out-of-town trip for me. Don't know if either of these things are related to the severity and frequency of the tantrums, or completely coincidence. Because he is non-verbal, I can't tell if he is just displeased that I am tending to Audrey over him, or if he is legitimately scared when I leave the room (after all, I am his arms, legs, and voice). I want to treat him as normally as possible, which includes disciplining him when appropriate, but I also want to respect any legitimate anxiety he may be feeling. It is really a tough line to toe.

Wordless Wednesday: For the Birds

A Couple of Links

I know, I know, I need to do an actual post, but by the time I find the time to write, I am too tired for original thought. So, in an effort to post something to the blog, I'd like to share a couple of links.

First is a blog post by my friend Katy, and yes, it is not the first time I have linked to her (and likely not the last... I like the way this girl thinks). She recently did a post on some beliefs she has come to hold as a parent to a child with special needs. I hold many of these same beliefs. Although a part of me wishes I had read this list earlier in my special needs journey, I think many of these beliefs come only through experience and can't be fully appreciated unless you learn the lesson yourself.

Second, while the focus of this blog, at least now, is cerebral palsy and how we are choosing to deal with it, another big factor in Fletcher's life, and mine as a parent, was his stay in the NICU. Disabilities aside, going through the NICU experience itself was a stressful and life changing experience during which support was crucial, as discussed in this recent New York Times article.

Some people prefer personal face-to-face support, which is one reason why I am excited about the new March of Dimes sponsored parent support group at the NICU where Fletcher lived for the first three months of his life. Other people, me included, turn to online support groups. I have gained invaluable information from online groups consisting of other mothers of micropreemies or children with cerebral palsy. In fact one of the moms quoted in the article is in one of my online support groups and is a tremendous resource and support.