Thursday, January 31, 2013

Thursday's Teaching Highlights - Crazy Horse and Crack Candy

It was a good week, but we were busy trying to get in our last few days of teaching in for the month. We finished up Day #114  yesterday (out of 180 we need to complete) -- no school today since I'm leaving for a weekend trip with some friends. :)

Here's some of the highlights of what we learned this week during our regular routine:

- Faith: We need to show kindness to everyone. "If your enemy is hungry, feed him. If he is thirsty, give him a drink." - Proverbs 25:21

- Reading: We started a new book called Sweetie from our favorite series about a family that fosters dogs and finds them new homes. Sweetie is a cute  miniature poodle with a lot of charisma!

- Handwriting: Brielle wrote two letters this week - one to her Grandma for her birthday and one to her big sister for Valentine's Day!

- Language Arts: Brielle worked on parts of speech and other concepts. She put them all to good use writing her dad and sister emails each day and "chatting" with herself!

- Math: Brielle continues to do great with double digit addition and subtraction facts, but we also reviewed concepts of time. Although she can tell time without any issues, being able to tell how long it is before something is scheduled is still a concept we're working on. (For example: If we need to leave for the grocery store at 1:30pm and it is now 11:30am, how long before we need to go?)

- Social Studies/History: We learned about the Native American leader, Crazy Horse, and his battle in 1876 with General George Custer. (Brielle thought his name was funny!) Surprisingly, she remembered the movie "Spirit" (one of my favorites!) and how it was about a Native American boy (and a horse, named Spirit) around the same time as Crazy Horse Lived. So, we watched it just for fun!

- Science: We studied more about magnets. We had great fun going around the house and finding things that use magnets. She was surprised that there are magnets along the refrigerator door to keep it closed. Now if I could only teach her not to slam the fridge door every time she goes in it!

- Physical Activity: Brielle competed in the Georgia State Special Olympics Winter Indoor games on Saturday and had so much fun.

- Life Skills: Brielle continues to want to do more and more on her own. It's all of the little things that are really adding up! Yesterday, she helped me make "crack candy" to bring to share with my friends this weekend. Yummy recipe if you want to try it!

--> To learn more about our typical routine, check out my previous post about that!

"Let me win, but if I cannot win, let me brave in the attempt" -- Special Olympics Motto

Wednesday, January 30, 2013

Wednesday's Wacky Words - Chatting (With Herself!)

Brielle wants a cell phone SO much. She even knows which kind (an iPhone) and which color case she wnts (a pink one!). Unfortunately, we have little confidence that she won't become a pest and text people too much. One reason we worry is because she has these little "chat sessions" on her iPod. She creates these long chats with people she knows.......

"Chatting" with her big sister
"Chatting" with her babysitter
"Chatting" with her grandma

.....and even with a people she doesn't really know!
"Chatting" with Matt
(a character on "Victorious")

Although this is great writing practice, it's just more evidence that she might not know "proper etiquette" for texting friends and family. So, for now, no cell phone for a few more years. :(

But, isn't that wacky the way she does it??? :)

Tuesday, January 29, 2013

Tuesday's Tiny Triumphs - The Doctors Were Wrong!

Our family
Christmas 1995
(7 1/2 months pregnant with Brielle but before the CMV diagnosis)
A little over 17 years ago (while I was still pregnant with her), doctors told us Brielle had been affected by cytomegalovirus (CMV) prenatally. Although it's a very common virus, it can be devastating to an unborn child. I was heartbroken and overwhelmed when the doctor called me and gave me the grave news that there was a 40% chance Brielle might die at birth due to liver damage.

My notes
 from when I got the call
from the doctors
January 1996
My notes
from when I got the call
from the doctors
January 1996
....But, she was born healthy!
Brielle with Mom and Dad
on the day she was born
February 13, 1996

Brielle using her walker
November 1998
When she was a year old, doctors told us she would probably never walk and we should start working with our insurance company to get her a wheelchair. Just before her third birthday, she started walking with a walker.

...A few months later, she was walking on her own!

Now, at almost 17 years old, she's doing better than any doctor could have predicted when she was younger. She has many struggles, but that beautiful smile is nearly always shining!

Brielle hamming it up for the camera
Christmas morning 2012

Brielle IS a triumph every day!

Monday, January 28, 2013

Monday's Making a Difference - Linda

Brielle has participated in Special Olympics bowling since she first became eligible at the age of eight. She just loves it and has participated in Special Olympics in Texas, Ohio and now Georgia.

Linda and Brielle
at Special Olympics bowling practice
January 2013
Although she used to need more help, Brielle now does a lot of it on her own. She still needs a little help and Linda is her helper. She's kind to Brielle and there for her every week at practice. but, the best part of how Linda interacts with Brielle is that she actually treats Brielle like she's 16, not like a little kid. On top of that, Linda only helps Brielle when she needs help. Otherwise, she steps back and lets Brielle do everything else, including getting the spotlight for strikes and spares!

Brielle moves the ramp into position
and lines up her shot...

Linda puts her bowling ball
at the top of the ramp...
Brielle gives the ball a shove
and then watches it roll down the lane....


Then the celebrations begin!

Last Saturday was the big Georgia State Special Olympics Indoor Winter Games. Although Linda was not allowed to personally help her, there were other volunteers there to help and Linda was there to cheer her on.

Special Olympics Bowling
Medal Ceremony
at the Georgia State Indoor Winter Games
January 2013
Although she only competed against one other ramp bowler, Brielle won the gold and had a blast. 

Thanks, Linda for what you do for Brielle AND what you DON'T do!!!

Be a fan!!!

--> For more information about Special Olympics, be sure to visit:  They are always looking for volunteers and I can guarantee you'll have a blast, too!

Friday, January 25, 2013

Friday's Photos

A few of this week's highlights!

Watching the Inauguration on Monday

Missing Dad who was in Asia all week.
But, wow! What a view of Mt. Fuji he had!

Don't all teenage girls put their cell phones in their back pocket?
Brielle doesn't have a cell phone, but her MP3 Player will do!
One of my favorite pictures of Brielle all decked out in her winter coat.
Christmas 2000
An old family photo!
Summer 1997?

Thursday, January 24, 2013

Spasticity Clinic

Ready for our day!
Once a year (or at least every 18 months) for the last 15+ years, I have had to take Brielle to the Spasticity Clinic (in whatever city we lived in). Spacticity means "increased muscle tone, or stiffness, which leads to uncontrolled, awkward movements". In other words, spasticity is one way to refer to cerebral palsy. At the clinic, doctors and medical professionals from several disciplines meet together to see children all at one appointment.
Hold still for the x-rays!

It feel more like a mauling than a doctor's visit. She sees the:
- nurse
- the physical therapist
- the x-ray technician (to take x-rays of her hips and back)
- the physiatrist (also referred to as rehabilitation physicians and are medical doctors who have completed training in the medical specialty of physical medicine and rehabilitation)
- the orthotist (also referred to as a prosthetist and is a healthcare professional who is specifically educated and trained to manage comprehensive orthotic and/or prosthetic patient care - for fitting Brielle with leg braces)
- the orthopedic surgeon
- the nutritionist (if I ask, we used to need more advice about getting more calories into her diet)
- a social worker (if I ask, last year I consulted one to help with the issues we'll need to face when she turns 18 years old)
Pick a card, any specialist you want.
(Oh, and there's usually at least one resident who tags along to learn)
Our private room for the day!

All of those specialist in the span a few hours is overwhelming. I have to be prepared with questions and concerns I want them to address as well as things to do while we're waiting in between specialists (and believe me, there's PLENTY of waiting time in between).
Brielle and Mom hanging out
in between specialists
(We got lots of school work done!)

Yesterday's appointment went relatively smoothly despite leaving the house at 9am and not getting home until 4pm. At least we got in early. Unfortunately, the rest of the day was rushed. We had only 20 minutes for lunch in between specialists to catch our breath!
Pizza for lunch in the cafeteria.
Yummy! (sort of)
The best news of the day was that Brielle is doing so well that we don't have to go back again unless we have any new concerns. Yay!

Her new meds.
Stylish, eh?
The other good news of the day was information we got from the physiatrist. She gave us several other options to help control Brielle's drooling issues. Despite the Botox injections she received in late October, her drooling is just as bad as ever. We've been so disappointed we haven't been able to do something for her to help the issue. But finally at this appointment, we got a script for a "new" medicine. Actually, we tried this medicine before (several years ago), but only in a MUCH smaller dose. It's a patch that is designed for seasickness but has a side effect of drying out the mouth. She's been wearing one and so far so good! 

Thanks to my friends and family for giving me the love, prayers and support to get through the day. I kinda get a little "wacky" from the stress of the day. But, today was THE LAST time we need to do this!  Woohoo!!

Wednesday, January 23, 2013

Tuesday, January 22, 2013

Tuesday's Tiny Triumphs - We Help Mommy

Add caption
Brielle continues to do LOTS of little things on her own. Although there isn't anything particularly new or noteworthy to report this week, I got to thinking about a childhood book I loved called "We Help Mommy" (a classic Little Golden Book).

Although it's out of print and terribly expensive, I found my old copy. Looking through its pages, it truly made me smile to think of how much I wanted to help MY mommy just like Brielle now wants to help hers.

Reading a book
when I was a little girl!

Monday, January 21, 2013

Monday's Making a Difference - CMV Mommies

Everyone needs to belong. There are few places I feel like I belong more than when I am on my CMV Mommies group. It's a closed group on Facebook of moms (and a few dads, grandparents, etc.) that all have a child born affected by cytomegalovirus or CMV  (the virus that affected Brielle) and some that have even lost a child because of CMV. Although I have only met three of them in person, they are all like family to me.

CMV Mommies
Closed Group on Facebook
As the description on Facebook describes:
"The purpose of this group is to give families of children affected by CMV an avenue to share good news; ask for support through hard times; to ask advice from those who have been there before us; share our experiences; make friends; to have a place to go on sleepless nights; and much, much more. We are linked in a way that bonds us. We have our CMV angels to share....but we also have our own health to talk about....and other family members. CMV affects everything in our life...this page is for all of it...the GOOD, the BAD, and the UGLY. I love you all and thanks for for being here for me and my family." 
Members from all over the world
and (unfortunately) growing each day
There are over 500 members from all over the world (literally), from all walks of life and have children with all sorts of challenges (some who you'd never know were affected to others who struggle to stay alive each day). But, on CMV Mommies, everyone is welcomed and members can share anything about their lives openly.

Every day, members share triumphs, challenges and questions. Sometimes, there are as many as 20 new posts a day. The members responses to the posts are amazing. Some posts get more than 20 or more members responding with suggestions, encouragement or cheers.

Part of Ashley's college paper
about the CMV Mommies group
When Ashley was working on a paper for her college course in Communication last semester, she interviewed me about my unique experiences in that group and how we communicate. I was so proud to be able to share that with her.

When I get on Facebook each morning, it's the first thing I go to read about what my friends are facing in their day. I find hope and strength through their stories.

Thank you, Ladies! (and Gentlemen!)

--> If you are pregnant or planning to become pregnant, please protect yourself and your unborn child from CMV:
  • Wash your hands often with soap and water for 15-20 seconds, especially after
    • changing diapers
    • feeding a young child
    • wiping a young child’s nose or drool
    • handling children’s toys
  • Do not share food, drinks, or eating utensils used by young children
  • Do not put a child’s pacifier in your mouth
  • Do not share a toothbrush with a young child
  • Avoid contact with saliva when kissing a child
  • Clean toys, countertops, and other surfaces that come into contact with children’s urine or saliva
  • (from

  • Thursday, January 17, 2013

    Thursday's Teaching Highlights

    With our rainy week, we were stuck inside a lot. That made it a productive school week indeed! Here's some of the things we learned:

    - Faith: We know that God is always with us. "He is always watching, never sleeping." - Psalm 121:4
    Connecting the dots!
    - Reading: Cocoa, the chocolate lab, finally found a new forever home! Yay!

    - Handwriting: Dot-to-dot pages are a fun way to warm up and do better at handwriting!

    Mad Libs!
    - Language Arts: We had a Mad Libs page this week ABOUT Mad Libs!

    - Creative Writing: Brielle loves anything about the computer. Every day after lunch, she writes her dad and sister, Ashley, emails about what she had for lunch. She always includes some funny thing about what she's thinking about, like how much she wants a new PINK computer for her upcoming birthday! I check her grammar, spelling and punctuation before she sends them. But, sometimes, her emails are just too cute just as she writes them.

    Brielle and me (July 2012)
    Overlooking the Columbia River
    where Lewis and Clark traveled
    - Social Studies/History: President Thomas Jefferson hired Lewis and Clark in 1804 to explore the new territory of the Louisiana Purchase. On their journey west, Lewis and Clark's expedition went right through the area when Grandma and Grandpa live in the Tri Cities of southeast Washington State. Maybe they even walked on the land where their house is!

    Some of Brielle's leg and hand braces
    from when she was younger
    - Science: George de Mestral invented Velcro after noticing burrs stuck to his dog's fur. The word "Velcro" comes from the French word "velour" (velvet) and "crochet" (hook). We looked around the house for things that use Velcro and found lots of items. For example, all of Brielle's leg and hand braces have Velcro on them!

    Double digits!
    - Math: Brielle is on a roll! She's mastered adding and subtracting double digits (as long as she doesn't have to carry or borrow - although she's starting to learn how to carry).

    Brielle loves bowling
    with Special Olympics
    - Life Skills: It was another busy week learning to do more things for herself. Clean, snooze, mac, and doggie -- oh my!

    - Physical Activity: A rainy week kept us inside. :(  But, Brielle had fun bowling with Special Olympics last Saturday. She has this weekend off and then the big Georgia State Winter Games the next weekend!

    - Music: Although not really a "teaching lesson", Brielle has been totally into listening to Taylor Swift music this week. She is so excited about going to her concert in April since the stranger gave us tickets!

    "Oh, what a shame. What a rainy ending given to the perfect day." - Taylor Swift

    Wednesday, January 16, 2013

    Wednesday's Wacky Words - Interjections!

    Remember that Schoolhouse Rock episode called "Interjections"? It's one of my favorite episodes and brings back a lot of childhood memories of watching Saturday morning cartoons.

    Brielle's use of interjections is always funny. Although there are signs for  "hey", "awesome" and "wow", there are no signs for most of them, so Brielle spells them out.

    Her favorites are "Y-I-K-E-S", "A-W-W" and "U-H O-H". But, one of the funniest interjections she uses is "U-G-H" which she usually follows up by smacking her forehead. Even funnier is after smacking her head, she sometimes signs "O-U-C-H".  A double interjection!

    Tuesday, January 15, 2013

    Tuesday's Tiny Triumphs: Clean, Snooze, Mac and Dog

    After last week's post, I've really become super sensitive about backing off and encouraging Brielle to do more on her own. And we've BOTH had quite a successful week!

    Stirring, stirring!!
    Brielle always likes to help me in the kitchen. Throwing my "just get it done and get it done fast" attitude away, I let her help a lot this week. Her favorite was making mac and cheese, but she did a lot of other simple things to help me prepare meals, too!

    I'll admit it. I'm a routine girl. I do the same things on the same day of the week. Have for years. Friday is cleaning day. And Brielle was eager to help me with lots of the chores!

    Dusting those bunnies away!




    Dusting away MORE bunnies!




    Now THAT'S a better reflection!
    Vrroom! Vrrrooom!!
    We also started a new bedtime routine. We've been getting Brielle ready for bed (changing her into PJs, brushing her teeth, fixing her bed, changing her calendar) and tucking her in for... well, always. Thinking about getting her more independent, we've switched things up. We do the prep right after dinner (changing clothes, brushing teeth) and let her do the rest on her own when it's bedtime. Success! And no big deal at all. 
    Sleeping Beauty!
    Well, a little awkwardly, but still...

    Last, but not least....
    Yum! Yum! Kibble!
    Brielle has taken over doggie care duties. She's feeding Cooper in the morning and in the evening (before the bedtime prep routine) and doing a great job. Cooper isn't complaining!

    So, here's to another week of Mom getting out of the way! Yay Mom!

    Monday, January 14, 2013

    Monday's Making a Difference - Susan

    Celebrating Susan's birthday!
    January 13, 2013
    Today's "Monday's Making a Difference" is about my dear friend, Susan.

    I met Susan two and half years ago at a dinner club event with my church. Although she had lived in my community for several years, she was new to our church. We talked that evening about our Praise Team and how she loved to sing. I encouraged her to speak with one of the Praise Team leaders about joining the group. Within a few months, she was sharing her beautiful voice with the congregation. 
    Our Praise Team
    December 23, 2012
    What makes her special to us is how she interacts with Brielle. She always greets her with a hug each Sunday morning before our practice. Susan has such a kind and gentle heart and a sweet way of interacting with Brielle. She has spent many a Sunday morning sitting next to Brielle looking at Brielle's pictures on her iPod. Brielle tries to tell her who each person is and Susan actually remembers them for the next time.

    We've enjoyed a few lunches together (at her home and mine) and last night we celebrated her birthday (I won't reveal which number...) with her eclectic group of friends. We had a great time together.

    There are many wonderful people at  my church, but Susan holds a special place in my heart!
    Our Church