Time to Update? Yes! (Please don't hate me for being away so long!)

Okay, so I know there are probably a lot of people who have stopped checking my blog. And others who check it, sigh, and wonder, "Will she ever update it? It's been two years!!!" Believe it or not, I had an update blog begun...a year ago...but never finished it. I guess things have just been on a bit of a rollercoaster the last couple years, and things are just now starting to level out and enter some sense of normalcy and routine.

Brianna is five now, and growing slowly but surely. She's finally 28.6 lbs. and 39 1/2 inches tall. She's still small for a five year old, but she's a happy girl still. She graduated from preschool this past June, and will start kindergarten in September. While growing up, the summer was always my favorite time of year. Getting to stay home and play all day, running around in the sun, swimming in the creeks. Not so for Brianna. While she loves to swim and go for walks and such, she isn't much of a fan of being home all day. She loves school and interacting with other kids. That's why, though she cries when I drop her off, daycare is so good for her.

Brianna currently goes to daycare five days a week, while I'm working, doing office work for the department of human services. All this work is on a volunteer basis, to pad my resume, in hopes that, once the hiring freeze is over, I'll have a foot in the door to a good, paying job. For me, getting a job working for the state is vital, because not only does it provide good benefits, but it also provides major holidays off, and a set 8-5 schedule with limited overtime. I'm tired of working long hours, swing shifts, and mandatory double or even triple shifts. I'm tired of breaking my back caring for other people, knowing as I do that I will burn out before Brianna needs me the most to provide that same care for her.

As for Brianna's development, she seems to be a very bright and lively five year old. She still doesn't walk unassisted, and only says a few words, occasionally (mom, Nana, Uh oh, Yeah, balloon, I love you), and it's more intonations than actual fully formed words. She still hasn't got a power chair of her own yet, but we currently have one on loan for an indefinite amount of time, for her to practice in when we are home. We also have the loan of an ECO 2 communicative device. She has been using similar communicators for a couple years now, with some degree of consistency, though, as with everything she does, it's on her schedule, and when SHE wants to. There is no rushing, cajoling, convincing, begging, bribing or tricking her into anything if she isn't agreeable to doing it. She is her mother's child, and as such, has a very stubborn streak to her.

Brianna still rules the roost, too. She knows she has everybody wrapped around her little finger, from Mommy right down to her little cousin, Tyson, who is just one year old. She gets her way, more because she's such a sweet little girl, than from any conniving or manipulation. Admittedly, if the television isn't on her favorite shows, she does tend to fuss and cry until it is, but she is, in general, a very happy child, always smiling and laughing. She loves outings, especially to such places as the shopping mall (she loves to pick out new clothes), the riverfront carousel, and just about any place we can walk around. Her favorite person in the world is still her Grammy Mary. Even Mommy quite often takes a back seat to Grammy where Brianna is concerned. Mary still keeps Brianna over night most Sunday or Monday nights, so that I can have a little break from the realities of motherhood.

About three months ago, we had Brianna evaluated by the Spasticity team at Shriner's Children's Hospital. While they think she is an excellent candidate for the baclofen pump, they determined that she is still too small to safely place it, and so we continue with a regimen of oral baclofen and quarterly botox injections into her gastroc muscles. This seems to help significantly, though I am definitely curious to see what kind of results we might have with the baclofen pump. At the same time, as you can imagine, I'm very hesitant about having to put her through another surgery and recovery. As with all surgeries, this one involves some major risks, including the fact that the spinal column is involved in the procedure. So, I'm not too terribly concerned that they've decided to wait a while for surgery. They want her to weigh at least 30 lbs. before they consider surgery. But considering that she has only gained about half a pound in the past year, it could be a couple years still before she becomes a viable candidate.

Well, there's the short version of an update on the past two years. I will post more later. I'm currently at work, on some down time, but have work that needs to be addressed before quitting time. I look forward to updating again soon, and hopefully with more regularity again.