The first appointment is to meet the Dr. She will do another vision exam on Finley to see if she concurs with the other doctor's thoughts (on whether she has retinitis pigmentosa or Leber's Ameurosis) or she thinks it is something entirely different. So Mat and I will be taking her to Boston while my parents stay with the other kids. I am assuming the doctor will talk to us about what will be coming up over the next couple of months and first steps to take with Finley.
The second thing we will be going to is to get the ERG (Electroretinalgram). We were told Monday that we will be getting a call from the surgery department to set this up. This is the test she will need to be sedated for, and we were told to expect to be at Boston Children's all day. They told us we will probably get the test done either September 3rd or October 1st. They only do this test one day a month and only 5-6 children at a time. So it will depend on how booked they are. Hopefully we won't have to wait much longer than that. This test will hopefully give us some more answers. I am counting on it to give us a big leap in her diagnosis, but you never know. We will just have to see.
The third thing we will be having done is a night vision test. We were told that this we would have to wait for - that it may be somewhere between December and March before we get this appointment. I don't have much information on this test, but I will once a lot of the paperwork comes in the mail from Boston. Basically it will test what she sees in the dark (or how long it takes her to find the light). Something like that....
The fourth test is a vision field test. This, unfortunately is being done by a different Dr. - Dr. Superbooked. I called her office today and she isn't even taking appointments at this time. I have to call back at the end of September, and I will probably get an appointment in May! Crazy. This will just give us an idea of what she sees now. Important information, but I can't make them move any faster.
So that is where we are right now. I have also contacted BESB which is Connecticut's Blind Association. A teacher friend of mine recommended them to me, and they have been really helpful so far. The doctor's office is going to fax them some necessary paperwork and then they will evaluate Finley to see if she qualifies for their services. If so, they will see her at her preschool and teach her preschool teachers how to care for her. It is going to be very helpful. I will keep you posted.
Also, we did Finley's DNA test. Well, we got her to "spit" into the little tube to send off for testing. It was funny. I had to brush her teeth and cheeks to get enough saliva so that Mat could suction it out of her mouth and put it in the tube. Finley thought this was pretty fun, and was a pretty good sport about getting it done. We should have the results in 4-6 weeks.
HEAT - it is really hot. And we don't have air conditioning. Enough said.These couple of pictures are of the kids eating dinner under the fan. Just random. :)
FAIR/FUN - we went to a local small town fair on Sunday. We met some friends of ours there and the kids had a blast. They rode rides.
They watched cows pull these giant cement blocks. (completely mesmerizing)
We ate good fair food.
moo.
We stayed a couple of hours, then the babies got tired, so our friends offered to keep Arlington there (they have a little girl who is going into 1st grade as well). They spoiled her rotten, so we invited them to stay for dinner when they dropped her off. We had a nice time visiting with them all Sunday evening.
On Monday we had a playdate with our neighbors - both grown up and kid! Our neighbor brought over her two children "K" and "M" to play with our kids while she and I caught up. We have not seen each other all summer, so it was nice to catch up. The kids played nicely together for several hours, so it was a nice break.
Monday the kids and I also went to the playground for a short while. I would have liked to have stayed longer, but by 10am, it was already 90, so we couldn't. We are hoping to go again another time this week.
Today I took all three kids with me to work for a few hours so I could get a few things done. That really doesn't work when you have three little kids with you. I set them up with a video and tons of things to do. Plus snacks. The little ones lasted about 1/2 hour and then they were running around the office. Ah well. I took to them to the playground when I was finished working to let the run off some of that energy.
FRIENDS - this evening a lot of the parents/kids from Arlington's afternoon Kindergarten class met to have ice cream at our local ice cream place. There were a ton of people there and it was so much fun. We all sat around and laughed and chatted for 2 hours before it got dark and we had to round up the kids. Everyone had a great time, and once again I am grateful for knowing so many wonderful mommies here in our town. I am really lucky.
So that is the news. Tomorrow is Finley and Cainan's first day of preschool. Finley is not excited. She keeps telling me she can't go because I will miss her. And big baby (her favorite doll - don't you love the name) will miss her. Tomorrow should be interesting. I tried to pump her up with showing her all her fun stuff that she is going to take - her bookbag and blankets, but I don't think she is convinced.
Stay tuned......
1 comment:
Is there such a thing as "good fair food?"
And "big baby" makes me smile, because for years we had "Giant Baby," "Medium Baby," and "Tiny Baby."
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