Sunday, April 23, 2017

When Dreams Evolve


First of all, Aberdeen is doing great. We are fully back into our normal routine, with three weekly therapy appointments and the occasional specialist appointment thrown in.  She's essentially back to where she was pre-op skills-wise, which is amazing, and we're working on getting her some new tools to help her progress even further.  Although signing has been an amazing communication builder for us as a family, most people don't understand the signs Aberdeen regularly uses.  To help her communication become more universal, we are in the process of getting her a picture-to-speech electronic device. She will be able to select the image of something she wants on the device, which will then translate the selection into spoken word.  She has to be able to scan through many images to make the selection she desires, so getting the hang of the device may take some time, but we're hopeful that this method will help eliminate the frustrations caused by others not necessarily understanding what she is signing.  Fingers crossed!  We're also going to have her new ankle-foot-orthoses (leg braces) adjusted a little, and are messing with the set-up of her gait trainer again to help her gain more confidence moving around.

We are still on track to see her specialists in Houston in the late June, early July timeframe.  Hopefully nothing will require an earlier trip out there. Her incision has healed well this time around, and though it has graduated to being a pretty angry looking scar, it is closed and moving in the right direction.  Thank goodness! Her hair is growing back in and her tantrums have decreased significantly.  Forward progress all around. The muscles around her left eye are definitely still in need of some time and healing, as they don't want to stay open much, but hopefully this will continue to improve.

Abby has been a lot of fun lately.  She's very into Elmo, loves her books, thinks being outside is super fun, and regularly requests that we have music playing.  Even without a communication device, her signing is becoming clearer and more direct, and she attempts to vocalize words more and more frequently.  She has started hiding her toys and making us find them (very much on purpose), engaging in pretend play, and getting into all sorts of mischief.  She got into her crayon stash and few weeks back and scooted all around the house scribbling on the walls.  I know this is not the sort of behavior that most parents find ideal, but she had never attempted anything like this before, and we were elated.  It was such a great inchstone, maybe even a milestone, that I left some of her scribbles up and have even considered framing them, lol.  We've made it out to a few of the San Antonio sites lately in preparation for the oppressive heat of summer kicking in, and have been having a grand old time.

Family trip to the bluebonnets

Enjoying the spring weather

Easter!



Checking out the deer at the park

Sea World Elmo experience was one for the books

She could not have been more excited...

Until she got to meet Elmo, which was altogether too overwhelming.

Thankfully the noisy sea lions fixed everything

Love my people

We're also gearing up for our big move to DC!  Working on getting housing lined up as well as a plan for Aberdeen's medical care.  I think we have a really good idea in the works right now, but we'll see if everything falls into place the way we hope it will over the next couple of months.  If it doesn't, there are luckily a lot of top-notch medical facilities in the DC area, so we have some backup options.     If you have contacted me about connections in the DC area, and I haven't gotten back to you yet, I apologize immensely (sometimes I am seriously the worst about responding to messages), and fully intend to participate in email debt forgiveness day on April 30, so you may be hearing from me soon. Better late than never, right?  Right?

In other news, I have thrown myself headfirst into an exciting new endeavor.  In the last few years, I've had to realize and accept that my dreams of performing are always going to have to take a backseat to Aberdeen's care. It just isn't something I can really do within our current life framework. While I sometimes mourn that part of my life, as it was and is something that I am truly passionate about, I am ready to let my love of creating take me in a new direction - a direction I can absolutely follow while providing Aberdeen the attention and care she needs. Since I was a child, writing has been something that I have cared deeply about and has been an important part of my life.  Whether it was jotting down little phrases that came to me during the day, chronicling our journey through this blog, or composing poetry, writing has long been close to my heart.  I was never sure that I really had it in me to pursue it in any sort of formal way though.  However, as she has changed many things about me, Aberdeen has given me the inspiration to actually give writing a chance.

In looking for books about medically complex kids, and kids with differing abilities, I've noticed a pretty large gap in the world of children's publishing. I've been gathering ideas for some time now, and have written a handful of manuscripts for picture books focused on this world that has become such a part of us, and I will be sending them out into the universe soon.  I'm hoping to provide a written voice for these amazing kids' stories that resembles the language and imagery that I've always treasured so much in children's literature.  I have no idea what will come of these in the long run.  I'm going to give the traditional publishing route my best effort, but if it doesn't seem to be a subject or style that the publishing world embraces, I am determined to still see them into existence in some manner.  I have a few networking opportunities coming up and am genuinely excited about where this part of our journey may take us.  I will let you know if anything big happens on this front, but since Twitter appears to be where a lot of the process happens these days, you can now find me there as well: @BethRLocklear