Sunday, August 29, 2010

Is Summer REALLY over?

I am afraid it is.

 This is our last official summer vacation day.  I am somewhat sad, but somewhat happy as well.  We had a great summer - we went many places, and enjoyed a lot of time outside.

But the last two weeks, the kids have started to show that they are ready to return to their friends and routine.

They are driving me - and each other - crazy.

 For example - Finley drew with black crayon on one of her expensive dolls tonight after I put her to bed.  She asked me to wash her, but the doll is cloth and cannot be machine washed.  We talked about why she did it and she said, "well it WAS my intention to color her."  Word for word - I kid you not.

So it is time for the new school year.  Cainan and Finley are in their last year of preschool, and Arlington is a second grader!  I will take pictures for Tuesday's blog of their first day tomorrow.  Arlington is a bit nervous, but I think she is more excited than anything.

All school bags are packed.  Lunches are ready to go.  Clothes are laid out.  Everyone is anticipating a great first day. 

 We put together Arlington's summer reading list that we need to turn in tomorrow, and she read 17 chapter books (or bigger) this summer!  That isn't bad in 9 weeks for her!  And we read her many more.  And she read countless books to her siblings.  So we are very proud of her.

Today we took the kids to lunch to celebrate their last day of summer.  And then they played outside and enjoyed the beautiful summer weather.

 This past week was another busy one.  We wrapped up a few more doctor's appointments.  Finley had her allergist appointment and they want to test her again for peanut.  She has always been allergic, so they want to see if that is still there.  We will be doing that test in the near future.

Arlington got to visit her new classroom on Wednesday.

She has 14 kids in her class - such a great size!  She has 7 girls and 7 boys.  (I thought it was 6 and 8, but counted wrong the first time).  She is in class with a few kids she has never been with before, so she has a chance to make some new friends.

Her BFF is in her class, which she is THRILLED about.  They better be good!  Arlington's teacher is the new teacher of the group.  She seems very nice and very young.  I think it is going to be a good year - we can't wait to see!  She had books on her desk already, which tells me this is going to be a busy year also!

My in-laws Sally and Ben arrived Thursday evening to help us with the kids for a few days.  It was nice to have them visit!  We can't thank them enough for coming in to help out.

 Thursday night was mom's night out with my Salem mommy friends.  We went to a yummy local restaurant and had sushi.  It was awesome!  I never get to eat it much because I am the only one in my family that likes it.  So it was a lot of fun.  We like to do this dinner out each year before school starts - our own back to school celebration.

Finley had an eye appointment on Friday.  This was a surprise one.  The Lions Club of Connecticut helped build this brand new eye center at Yale in New Haven.  When they heard about Finley they asked me if they could get her an appointment there.  We haven't been happy with Dr. Fulton - our current retinal specialist - so I thought "why not".  Expecting the appointment to be months from now, I didn't give it any more thought until I got a call this past week and they had an opening on Friday.  So off we went!

 We love this retinal specialist already.  For one - he was really nice to myself and my mother in law - a concept that Dr. Fulton doesn't seem to grasp.  He didn't mind us asking him questions, and he was very knowledgable about LCA.  He brought in quite the crowd with him when he did her official exam - it isn't very often patients come in with LCA (since there are only 3000 of them in the country).  So all the doctors in the practice were curious about our girl.

Finley did great at the appointment - she was very charming and did everything she needed to do.  She even let them dilate her eyes with very little fuss (she really hates the drops).  She had originally made the tech who took her retinal photographs nervous because she personally had never had success with someone so young.  But Finley is a pro at eye exams (unfortunately) and the tech was able to get many pictures she needed.

 The end result of this appointment (other than the news that we will not be returning to Dr. Fulton) was that Finley's vision is around 20/100 in both eyes.  This is slightly worse than before.  She seems to have a TINY bit of central vision left, but it is pretty bad.  Also - from the pictures - in comparing them to the pictures that were taking last summer, her retinas have gotten much more black.  This is not good news.  She went to having a pretty pink retina with just a small area of black (dead area), to an almost all black (dead retina) in a year.  So it has progressed - but we have not noticed much difference in her.  Maybe it is because we are with her every day.

So we will just have to wait for the final report to see what the doctor has to say.  He wants to see her every 6 months to keep up with the progression.  So we will keep you updated.

The good news with this doctor is that he is very pro-research and gene therapy and he been collaborating with the researcher at the University of Penn (who we met and really like).  They are positive that a cure for LCA is not that far into the future, so I hope they are right.  Our little one seems to be running out of time.

 Saturday Mat and I went to New York City to see Wicked the musical.  It was pretty good.  I was a little disappointed because we have wanted to see it for so long.  But the two lead actresses were not that great.  The second act was better than the first, but I do wish the show would have been better.

 But we enjoyed our day in the city.  After the show we had dinner with Kirsten, Sean and Alissa (my cousins who live in the city) before leaving.  I can't believe I didn't take a single picture!  Sigh.

 Today was church, grocery shopping for back to school, and just enjoying our last day together before the madness begins.

 I wanted to let you know that we have some new Finley's Fighters products!  We have coffee mugs:

 And we have travel mugs.

Also I am getting ready to make the jeweled braille t-shirts (or whatever type of shirt you want).  I put the coffee mugs and travel mugs on our website - HERE - so go and check them out.  All profits go to our new foundation for research for Finley's RDH12 LCA.  We need all of your help!  We also can do many other things, so we appreciate the help!

 The walk is right around the corner.  Make sure you get your shirts if you are walking with us, and order your wristbands as well.  The more the word is out, the better our chances of a cure.  October 2nd, we want to see you at the walk!  Plus, for those of you who can't join us, we are going to have many other fun fundraisers coming up, so get your shirts for our events!  You can get them here on the blog, email me, or get them on our website HERE (click on HERE to take you to the site)

 Tomorrow Making Meals Monday returns!  I know you are super thrilled.  If I can remember, I will post a few delicious cookie recipes that our family friend Loretta gave to me.  They are all VERY yummy.  So I will see you tomorrow!

 Once last thing to share:

1 comment:

Anonymous said...

Grammy says- yea to coffee mugs- I knew that was going to be a good idea- they are so cute!!! I may have to order about 100.