Mixed Nuts: December 2015

Quotes

"There is no better way to thank God for your sight than by giving a helping hand to someone in the dark." - Helen Keller
When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, "I used everything you gave me." ~Erma Bombeck
You may never know how strong you are, until being strong is your only choice.- Unknown
Keep your face to the sunshine and you cannot see a shadow' ~Helen Keller
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.
Don't cry because it's over, smile because it happened."- Dr. Seuss
"Life is 10% what happens to you, and 90% how you react to it."
"God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family."Author Unknown
I have been driven many times to my knees by the overwhelming conviction that I had nowhere else to go – Abraham Lincoln
Be always at war with your vices, at peace with your neighbors, and let each new year find you a better man. ~ Benjamin Franklin
There are only two ways to live your life. One is as though nothing is a miracle. The other is as if everything is a miracle - Albert Einstein
The journey of a 1000 miles starts with a single step
Sometimes in the middle of an ordinary life, love gives you a fairy tale
Where there is great love, there are always miracles - Willa Cather
The Difficult we can do immediately, the impossible takes a little longer
Doing what you like is freedom. Liking what you do is happiness
There are two lasting bequests we can give our children. One is roots. The other is wings.
Be the change you want to see in the world
Don't tell God how big the storm is, tell the storm how big Your God is..........
Everything has beauty, but not everyone sees it
Fall down seven times - get up eight - unknown
Despite our differences, we sink or swim together
Life may not be the party we expected, but while we are here, we might as well dance
"The man who moves a mountain begins by carrying away small stones." -Confucius

Tuesday, December 15, 2015

Finley's Vision Field Test

Well - another vision field appointment is on the books. This is the 6th year we are seeing Dr. Mayer at Perkins. As Finley sat down in the vision field testing seat, I pictured that little 3 year old girl who was so tiny in that big chair. I would love to say that this year's appointment showed stability in her vision, but I cannot. She has had a significant change in her vision fields, which matches some of the concerns we were having with her. Last year she had a 70% peripheral field, and this year it is 50%. Her scatoma (like that word? That is the black areas where she sees nothing) has gotten larger in both eyes and more dense. (she used to have more a "swiss cheese" vision). Today she even tested her with both eyes open and her fields have shrunk in her overall daily vision. (because who sees one eye at a time - that is why she does this). Her acuity has decreased. Her contrast vision has decreased, so she needs more light, more contrast. Except with her type of LCA, more light means more vision loss. The doctor was dismayed. More than I have ever seen her. She sighed heavily, and told me she wish she had better news, but as we all know with LCA, this is what is going to happen. The older she gets, the more vision that disappears. This was the first time I really had to hold it together in the doctor's office. After 6 years, we have watched her lose her vision. But this was the most she has lost in one year, so it was hard. CURE. NOW.

I had Dr. Mayer copy her "plots" for me today. Usually these would be in pretty colors (she color codes the different dot size, so bare with me). So - the outside ring - that is where Finley can see the largest light dot she uses (a little smaller than a quarter). Last year that line was at the 70 - now it is at the 50). The next line is where she can see a medium size light dot (about the size of a dime). That line is between the 40 and 30. And then the last line (which is right by the 30) is where she can see the smallest light - which is about the size of a tac. The middle section there - where you see she kind of shaded it in with black lines? That is where she sees nothing at all. And the area with the dots? She is pretty sure she doesn't see anything there either. All of this has changed from last year.

This is the right eye. This actually made the doctor more upset than the left because her right eye has always been better off than her left. Same thing as the last picture with the lines. The shaded areas and dotted areas are where she sees nothing at all.

This is what she can see now with both eyes open. So when she is looking straight ahead (just like you are right now), Her fields are below 70 with both eyes open (last year they were above 80 with both eyes open). And in the center - the dotted and lined areas - that is where she doesn't see anything.

Tuesday, December 8, 2015

Christmas Take 1

Because we will be in Hawaii over the Christmas holiday this year, our families have been nice enough to visit us throughout this month so we can spend time with them. This past weekend was Mat's family who came and visited. Mat's parents and one of my nieces, R, were here, and we had a great time. I actually prefer small gatherings to large, loud get togethers. Not that I don't love those from time to time, but it is nice to spend time with those you love in a small, quaint setting as well.

This past weekend was also Arlington's middle school musical (they did Seussical The Musical). She was excited to have family there (besides us) to watch her. It was a lot of fun and the musical was GREAT.

We went out to breakfast, opened some presents, and the kids got to play with their cousin. We ate pie and had a Christmas dinner, and drank hot chocolate.

Enjoy the pictures from our weekend. Sorry that they are not great quality. My camera decided it was time to move on, so now we are in the process of buying another.

Arlington ready to leave for the musical