Friday, March 29, 2013

Party On!

No blog post today because we are too busy celebrating the beautiful Ashley's birthday!!!  18 YEARS OLD!!!!!

Isn't she lovely
Isn't she wonderful
Isn't she precious
Less than one minute old
I never thought through love we'd be
Making one as lovely as she
But isn't she lovely made from love

Isn't she pretty
Truly the angel's best
Boy, I'm so happy
We have been heaven blessed
I can't believe what God has done
through us he's given life to one
But isn't she lovely made from love

Isn't she lovely
Life and love are the same
Life is ASHLEY
The meaning of her name
LISA, it could have not been done
Without you who conceived the one
That's so very lovely made from love
 
 
Thanks to Stevie Wonder for the lyrics, and a huge thank you to Mamma Lisa for giving birth to my beautiful daughter!

Thursday, March 28, 2013

Worries and Blessings

Someone very special has a birthday tomorrow! My 'baby' will be 18 years old, and I am having the toughest time wrapping my brain around that. It was just yesterday that she crawled into my arms after having her second brain tumor surgery at age 18 months. Although it would take another year for her adoption to be finalized, that day our hearts joined as one.

The stages of her growth have always been interesting, to say the least. The move from babyhood to toddler, with all its developmental milestones, both those missed and those achieved. The transition to school and her lifelong love of big yellow busses. Those hormone rich years of teenagery, so many tears, so many new experiences, so much...life! And now, the path to adulthood begins. And while Ashley is embracing it with all the gusto she can muster, I am having a tough time.

The school years, whether easy or rough or somewhere in-between, do offer a bit of comfort. You know where your child will be every day. You know they will be surrounded by similar aged children. You know there are protections in place to ensure your child's well-being (most of the time). But what will adult services bring? What I have explored so far is not bringing me much comfort.

Ashley needs a new aide at home. The current aide is moving on, much to our sadness. Finding aides is such a difficult process, especially finding someone who is reliable and respectful of your family member. We've been very lucky so far, but now I feel my luck is running out.

I've decided to look at other options - things like day support programs. Their hours are not good, and won't allow me to work a full day. Ashley's peers at day support become adults, people from her age on up to much older. I'm not thrilled with that. I've toured the day support programs in my area, and none appeal to me.

I've considered using an agency to provide an in-home aide. Unfortunately, when I tried that with Ronnie, the results were not good. The quality of the staff available left a lot to be desired.

I just don't know what to do but I am running out of time.

And then what happens when Ashley graduates from school? We've got a while yet, but the future as it looks right now is quite frightening. If only I were a little closer to retirement. I've got 6 more years, but Ashley only has at most 4 more years she can stay in school.

But for tomorrow, I am going to set aside all those worries. I'm going to celebrate my beautiful daughter and the special woman she is becoming. My life is so, so blessed...

Wednesday, March 27, 2013

Dave Makes a Movie

And what a movie it is!! If you need a transcript (some of the words might be a little tough to understand), you can find it on Dave's blog, Rolling Around In My Head. I hope this is the first of many more of Dave's movies!

Tuesday, March 26, 2013

Garrett's Fight

Trust me and watch this until the end.  If, like me, you have to set aside your opinions on boxing and fighting, please do.  Seeing this is worth the the next 13 minutes of your life. 

Monday, March 25, 2013

What The Heck is an Iliac?

First there was an ultrasound looking for a blood clot. Then there was an insurance battle followed by a cat scan, also looking for a blood clot. That was followed by another ultrasound, and the result of all that? No answers as to why Ashley's right leg and foot have been swollen since last October. The cat scan, according to the hospital radiologist, did show some 'shadowing' that looked 'suspicious'. Both ultrasounds showed no clots and nothing out of the ordinary. Fortunately, Ashley's pediatrician has a bulldog mentality and is determined to figure out what is going on.

I mentioned two weeks ago that our next step was to send the scan and ultrasound results to Massey Cancer Center and have a hematologist/oncologist take a look. After having that person as well as both a pediatric and adult radiologist from the Cancer Center look at the films, we seem to be closer to a diagnosis. ABNORMAL EXTERNAL ILIAC VEIN. Whatever the heck that means.

A second doctor from our pediatric practice called me later Friday with that information. She was still waiting on the written report which she hoped would provide more information, but the hematologist/oncologist said our next step was to visit a vascular surgeon. Now the pediatrician and I need to find one of those...

So I've had all weekend to think about this and to try not to Google it. So far so good, but if I don't hear from a doctor soon, I may have to visit Dr. Google.

I'm glad we are getting closer to figuring this out, but worried at the 'surgeon' word. I'll keep you posted....

Thursday, March 21, 2013

The Wisdom of Ace

Ace has something "really importmant" to share and we all need to listen :)

No Greater Fear

This....this is my biggest fear.  The thing that keeps me awake at night.  The thing that makes me pray my last breath comes one second after Ashley's last breath...