VisionWalk 2009

Today was finally the day! We got up early. It was a little hard getting out of bed at 6am on a Saturday, I must admit. But we all got ready and were on the road by 7:30.

Today's weather - rain, cold, wind. A beautiful day for a 5K, wouldn't you say? All I can say is that it really figures that after a week of nice weather and warm temperatures, it would be a yucky day.

But no matter - off we went! It did rain off and on during the walk, but not enough to stop people from coming. We took our warm clothes, and put them under our shirts, and we were warm enough. We walked 3.5 miles all together with the 100's of other people that were there.


We didn't take the camera on the actual walk due to the on and off again rain, but we walked along a park and along a lake. In the lake were crew teams racing, so the kids enjoyed watching that as we walked. Mat took some pictures of the area before we started, and I put those pictures at the bottom of this post.



There was face painting and balloon hats for the kids, plus a bounce house. Arlington's balloon hat burst while we were on the walk (causing many tears), so I don't have a picture of it.

(Arlington after the walk - tired, wet, missing her balloon hat, and half of her face painting off)

By the end we were cold and tired, but we had a nice time. Even Finley and Cainan walked the majority of the way. They were real troopers!

We can never thank everyone enough for all the wonderful donations and well wishes. We raised $4300 as of this morning. My original goal.......$200. So, thanks to all of you, we were able to raise an amazing amount of money for retinal research. Boston's total raised was $140,000 towards research. Supporting science and research and gene therapy is so important. Someday, Finley's sight and so many others may be restored because of donations like yours. We applaud you.

We got two of these mouse pads for being a top team.

Our team came in 6th place for donations. (out of 52 teams) Not too shabby considering we have only been fundraising for about 3-4 weeks!

When we got to the finish line Finley said, "did we win?" "Well no" I had to tell her (we were pretty close to the last people to come in, but that was just fine). But I thought about it. We did win. Because of the $4300 we all raised on Finley's behalf, someday she has a chance to see the world the way it was meant to be seen.

So next year!!!! Pittsburgh!! We will be a HUGE team!! We have all kind of fun things planned to get together once we know the date of next years walk. So stay tuned and plan on joining us in Pittsburgh. We want to at least DOUBLE our donation next year.

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Funny Finley

Finley says the funnies things. And she is a little monster angel. The other day when my parents were here, she decided to dirty her pull up instead of using the potty. So my mom took her in the bathroom and said, "Finley, you need to tell Grammy when you need to use the potty". Finley's response? "I know.....we talked about this". (This is what I say to her EVERY time she does this)

Finley also is fasinated with skeletons this Halloween season. She wanted a "skel-E-ton" (as she says it) for her room. So my mom and dad bought her a giant one to hang on her wall. Weirdo. She also has a skeleton flashlight. She definitely marches to the beat of her own drum.

On the way home from the walk today, she was coloring in her coloring book. Being so good. So quiet. I turned around thinking she might be asleep. But no. Finley was coloring on the window!!!

(it is hard to see, so I wrote "Window drawing below" on the picture and she is pointing to her handy work).

Goodness. That girl will color on anything. Arlington NEVER did that. In fact, I can only think of one time that Arlington colored on anything besides paper. And Cainan hasn't ever either. But Finley - walls, tables, floors, counters, self, and now windows.

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This Week

This week went by quickly. Mat was out of town on a business trip all week. My parents were in visiting all week to keep me company while he was gone.

Wednesday - we met with Finley's teacher for the Blind. She definitely qualified for services, so they came to see her and see what she could do and see what questions we had. The teacher was great and very nice. She stayed about 1 hour and we just talked. We talked about what we see and what concerns we have. We talked about what she would be doing at first. (taking a look at her down at her preschool and calling the public school about Finley's upcoming needs). She gave me three books that had braille in them (they are regular board books and braile has been added to them). It will give Finley the "feel" of braille. The teacher was on board with teaching her braille - thought it was a good path to follow. I was glad to hear that. She also gave Finley new sunglasses she wants her to wear when she is out in the sun to help protect her eyes. She gave her a box of toys to explore. It was really great. Finley really took to her and was giving her multiple hugs by the time she left. The next time we will meet with her will be the 2nd week of November. That is the same day the teacher will go to the preschool for the first time. At this point, Finley doesn't need much, thank goodness. But we have found ourselves a good advocate.

Thursday Finley had an appointment with the pediatrician. Well, it was more of a consult because we needed her to write us a script for some bloodwork. She is having some kidney function test and other blood test to make sure her kidneys are not being affected at this point because of the LCA. We are hoping for good news. She had the blood drawn on Friday, and was a trooper about it. I promised her a present if she sat still and she did. I took her out for pancakes and bought her a little present because she was so good. They had to take three tubes of blood (which is a lot for a little kid) so she needed food after that!! We have to do a urine test, but were told we could "catch" that at home. That will be much easier. We are going to turn that in on Monday morning. We will keep you updated.

This week while my parents were in, we got to see David Copperfield perform. Mat and I saw him years ago and he puts on a GREAT show. And he did not disappoint this time either. Arlington is into magic - we have read several books on Harry Houdini. So, when we found out this summer that David Copperfield was coming to our area, we had to go!! She really enjoyed the show and was completely facinated by the magic.

One funny thing - David Copperfield always takes audience members on stage when he is performing a trick. Arlington had taken off her shoes while we were watching the show. Once Arlington saw that he took people on stage, she scrambled for her shoes!!! Poor girl. I felt bad telling her she had to be 18 before she could go up there with him. She was very disappointed.

Cainan is doing well. Not much to report. He did have a few more nights of night terrors. The night after the "ghost in his room" terror, he woke up 3 times crying. Then the next night, just once, and last night, none. So hopefully, whatever it was, has passed. We are all exhausted. He is learning to spell his name. He knows what letters are in his name, but writing them is a different story. He has the "C" but that is about it. We are still working on the rest.

Cainan got a skeleton pen when we went to the party store the other day. He has been carrying it around since, and even sleeps with it. (don't worry - he hasn't figured out it is a pen). It lights up and he is facinated with it.

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Last Bit of Randomness:

My dad's birthday is today! Happy birthday to the best dad in the world. He would do anything for his family - and does. He is quiet and reserved, but would stick his neck out for anyone - even strangers. We celebrated while my parents were visiting and were glad to have that time with him. His present was getting to take care of my kids all week. Aren't I a great daughter??? I am just joking. Sort of.


(singing happy birthday to my dad)
(helping him blow out his birthday cookie)

Arlington fell asleep with this mask on the other night.


Isn't she the funniest? Like I have said before, she can sleep anywhere, any way. She doesn't remember falling asleep with it on. When I showed her this picture she said "I wasn't asleep." It took some real convincing. Thanks Aunt Jess and Uncle Tom for this mask and all the other goodies. The kids love them!!!

So this turned into a really long post, didn't it? Lots to say, for once. Anyway, that is all. Next update will be Tuesday after Finley's cardiologist appointment. So until then - have a great weekend!!

Enjoy the rest of the pictures. Oh!! And remember, please leave us a comment! Here are the instructions again. We LOVE hearing from you. Don't forget to sign your name!!

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