Saturday, August 29, 2009

Last weekend before 1st grade

And Arlington is very ready!

Wednesday she got to go to see her classroom and meet some of the other kids in her class. She was excited to meet her teacher, and see the room and some of her friends.

She has a weirdo facial expression on in the above picture - who knows why! Anyway, my parents took her because Mat and I were in Boston with Finley. I hated missing this experience with her.

Her name was on the wall:

She got a chance to play with her friend "O" for a little while. Then the teacher talked to the families and gave them just a small run down of the first week. Apparently Arlington will be having gym two days a week. Ah well. I wish it was art twice a week, but what can you do!

The room is not completely set up yet - as you see in the picture below, all of the desks are kind of close together! But the teacher has her smart board all ready to go!

We packed her new book bag.

I let her pick out a special one this year - in hopes it will last longer than a year. She wanted her name on it. For Arlington, that is always a treat since we can't find anything with her name on it just in a general store:

She got a lunch box to match. For those of you who don't know - this will be the first year for full day school for her. Kindergarten was half day - so she is excited to take a lunch box to school and eat in the cafeteria.

It didn't fit her whole name. Her mother gave her a name with 9 letters, when the cut off for most things was 8! So we got her initials instead.

She had to have a pencil box - and of course, you can't just have a boring pencil box. True to Arlington style - it needed some pizazz:

That cute pencil box was done by someone who owns an Etsy shop - isn't it great? I love it. And she has another pencil holder with her name on it.
This holder is for her "extra" supplies that she may need at school. It will reside in her bookbag. Her mother is into "overkill".

I was also able to find a store who made children's scissors with names engraved on it! These are the coolest:

She was pretty excited about these. Hey, she was told she needed supplies, but wasn't told they couldn't be awesome.

A teacher friend of mine from my school gave Arlington this student planner for her to use this year. All summer Arlington has been keeping an eye on it. It has been sitting on her desk, and she has been so desperate to use it.

She also has a bookmark for her student planner with her name on it! Of course. Would you expect any less?

So she is ready. Friday she was invited to a little "end of summer" party at a friends house, but she hasn't been feeling that great, it was cold and rainy, so we opted out. She was bummed she couldn't go, but tonight she is actually feeling worse, so I am glad we decided to skip it. I think she has had too much fun "partying" this week with all the fun stuff we have been doing, and it has finally caught up with her.

Friday was our convocation at our school and I got to spend a fun day with all of my co-workers. I didn't get as much work done as I hoped, but it was fun catching up with everyone. I got to see a few of my students who came in all excited. That was pretty fun. I will love the beginning of the school year until the novelty wears off for the kids and routine days settle in.

Arlington and I are reading the book "Savvy" right now.

I am reading it to her (because I was curious about it too) but sometimes she cheats and reads ahead. But it is about a 13 year old girl who on the 13th birthday, people in her family get their "Savvy". And this case - a power of some sort. It is a great book, and I highly recommend it.

My mom and I went to see Julie and Julia - it was a really cute. It was pretty funny too. It made me want to cook more. made me want to eat more. Mat and I saw G.I. Joe today in the theater. (his choice). It was fine. I know squat about G.I. Joe so I went for his benefit.

So that is all. Tomorrow we will be just doing final preparations for the first week of school! Stay tuned on Tuesday I will have first day pictures! Hopefully.

Wednesday, August 26, 2009


For those of you who don't know us very well - Finney-mato or Finn-mato is our nickname for Finley. This was because when she was first born and cried, she turned as red as tomato every time. So Arlington nicknamed her tomato, and that grew into Finn-mato. A little piece of history. Aren't you glad I give you knowledge when you read my blog?

Today's entry is an extra special one. You should feel very special, because JUST yesterday I said I wouldn't be back until Saturday. I like to see who is paying attention to me at all. I know I barely pay attention to me, so I don't expect many of you do either.

Anyway - in all seriousness........

Today was Finley's eye appointment with Dr. Miracle in Boston. We got to meet the Great Dr. Anne Fulton (Mat thought I should put her real name on here to give her credit) today. Our appointment in Boston was at 2pm, and we were seen right at 2pm. When does that ever happen? I loved her already for being on time.

The staff was really great. We first saw another doctor who ran through her history, did a very throughough eye exam, and put the dreaded eye drops in her eyes. This is Finley's 3rd time getting those drops in one month, and now she really squirms to get away. She hates anything near her eyes, so this is never a pleasant experience.

But the doctor is experienced with squirming 3 year olds who refuse to open their eyes, and in went the drops.

We had to wait 30 minutes for the drops to work, and during that time Finley played in the waiting room, and I talked to the surgery coordinator about her ERG and also to Dr. Miracle's (I am sticking with that) assistant to schedule her night vision test. That passed the time. By the way - just a reminder - her ERG under anesthesia is October 1st, and the night vision test will be February 24th.

After the dialation began to work, Finley had pictures taken of her retina, and a test to see if she needed glasses. Her visiton is 20/70 in both eyes, and for her age, Dr. Miracle does not believe that she needs glasses. She doesn't think they will help (just like every other doctor) so that is a non-issue at this point.

By the way - Dr. Miracle is wonderful. She has been in practice a long time. She was sweet and warm, and very soft spoken. She was great with Finley and very willing to sit and talk with us. She never rushed - she spent more than an hour with us. It was worth every minute. We are used to these "high powered doctors" who give us 10 minutes and say, "see you next year". But she wasn't like that at all.

She talks to us about the pictures. You can very clearly see on Finley's retina the damage that is there. There is a dark area and the retina is flat - two things that are not in a normal eye. The doctor was very vague on her guess on what it might be. Mostly because at this early stage - it could be just about anything. She said if she had to give her best guess, she would say Finley had LCA - Leber's Congential Amaurosis. (click on words to read more about this disease). But even the great Dr. Miracle was skeptical of this diagnosis, because Finley doesn't have many of the characteristics of this disease. Plus, it is the most common disease in childhood sight problems, and the range varies from what Finley has now, to complete blindness and everywhere in between. It can be progressive, or stationary. It won't get better - that is for sure - but there is a chance it won't get worse. That was nice to hear.

She also saw some positive signs - that her blood vessels in her eyes were NOT narrow - like the one doctor thought. She said that could be because she is young and that symptom has not yet happened, or that it never will (very vague, right??). Also, the sight of the optic nerve was very oxygenated, and her sight is still very good.

It is unclear if she has central vision. Most of the test showed us no. I thought she probably didn't have much peripheral vision, but it is looking more like the central vision is what she doesn't have.

Now - one thing about LCA that I think Finley does have the characteristic is - the deep sunken eyes. I have always said she looks like a little old man with no teeth because her eyes are so deeply set. There is another part - something that SOME children have with LCA which is a cornea problem called Keratoconus. The interesting part of that is - she has an uncle who has this disease. Hmm.......

Anyway, after we reviewed the pictures and Mat asked her about 1000 genetic questions, we had to have her blood drawn for genetic testing. That was not pleasant at all. She was so good during the whole appointment, but completely flipped with this. Can you blame her? She favored that arm for a few hours after that blood draw. The genetic tests will be specific to LCA - see if she DOES have that, and possibly what strain she has - if I understand it correctly. But, of course - there is a down side. The results take 6 months to get back from the labe. 6 MONTHS! Mat tells me that this is just due to back log - not that the actual test takes that long.

Once the results are back from that, we may/may not be closer to an answer. Hard to say. I do think they will test Mat and I if her results come back postive for LCA. But they want to wait and see.

We left the appointment at 4:30 - only 2 1/2 hours after it started. Not bad! And we didn't do any waiting during that time - we were busy the entire time.

So, that is where we are. Basically - in the same spot we were before. I don't believe she has LCA, but I could be wrong. I agree with Dr. Miracle that is a long shot diagnosis. She thinks Finley probably has something rare and unusual that might not really have a name. She warned us the process of figuring it out was going to be slow and arduous.

So we wait. October 1st. February 24th. All the time in between. We wait and watch. We are hopeful that maybe this will not progress any further, and even if it does it doesn't lead to total blindness.

Thanks for keeping us in your thoughts today!

Now - I will REALLY see you Saturday.

Tuesday, August 25, 2009

All work and no play makes Jennifer a dull girl

That is why I am not doing that.

Sunday - my parents, Arlington and I went to NYC to see my cousin Kirsten in the musical Shrek.

She has a pretty nice part, and a lot of lines and singing, so we were able to pick her out all the time. We had pretty excellent seats, so Arlington could see the facial expressions of the characters. She loved the show. The show was fun and light and funny. I highly recommend it if you are going to New York any time soon.

After the show we got to take Arlington back stage to look around and see all the costumes, and sets, etc.

She got to meet a lot of the characters - particularly some of her favorites:

The guy who plays the donkey (he was spectacular):

The guy who plays Pincocchio (equally as good):

The little girls who play the young princess in the show (meeting them was high on Arlington's list - she loves meeting kids):

She had a great time and we can't thank Kirsten (and my parents!) for this wonderful opportunity.

Kirsten gave Arlington a pair of "Shrek" ears to wear, and she wore them the whole day. That is the first time I have ever seen her leave a head band alone.

We also took Arlington to the American Girl Store. Now, as I have stated in the past, we don't have an American Girl. We have "Bargain Girl". She looks the same, she is the same hight, she can wear all the clothes, but she was about 1/4 the price. And Arlington loves her just the same.

But, Arlington has read several books, and so I did promise her that she could pick something out for her "Bargain Girl" at the store. She had been looking through a catalog that her Aunt Betty sent her looking for something reasonable that her mother would let her get.

And she settled on.........a wheel chair. Yep. That girl definitely marches to the beat of her own drum.

The wheel chair is really cute, and fits Bargain Girl very nicely. Arlington wanted it so she could play doctor/hospital. There is also a crutches/cast set she has her eye on, but she is going to have to read a few more books first.......

She also did get a little shirt for Bargain Girl that says "American Girl Place NYC" and Arlington got one to match. Trust me - if you would have seen what most parents were doing in this store, you would have been proud of my restraint. Or lack of wanting to spend loads of money on a doll.

They even had a place to get your doll's hair done. A little salon for dolls! Here is a picture of that:

Bargain Girl didn't get her hair done. I am sure the store would have been able to tell she wasn't AG. Bargain Girl doesn't need a fancy salon. She gets her hair done at the chic boutique a la Jennifer.

So we had a very full and busy day, and got home very late from NYC, but had a lot of fun.

Monday - a didn't have to go to work this day. I have put in enough hours this summer that this final week of "vacation" before school starts, I only have to work 3 full days. Anyway, my parents, Arlington and I went to Six Flags for the day. It was much easier to go with just one independent child. She had a great time and rode all the things she wanted to (and more). It was pretty crowded, but not terrible. The park is pretty big, so we never were bumping into anyone.

Here are a few pictures from our day.

Today, Tuesday - I did go to work. Boo. But it wasn't bad. I actually got a lot of work done. I am still missing quite a few Kindergarten physicals, but I am not in too much of a panic. Yet. We will see what comes in on Thursday when I return to work.

My parents took the kids to "The Dinosaur Place" today while I was at work. They had a great time walking around and playing in the splash pad. My mom took about 1 zillion pictures, so I put some here. I didn't edit them at all, so...... you know.

Tomorrow is Finley's eye appointment in Boston. Keep us in your thoughts that we get some answers tomorrow. We heard about her ERG appointment today, and we will be going for that on October 1st. So that isn't too far in the future, which is good. This is the test where she will be put under anesthesia so they can see what is going on.

See you Saturday!

Saturday, August 22, 2009

Pleased to Be......... Allergy Free!!!

We are jumping for joy in our house. Arlington's allergy test came back NEGATIVE for allergy to peanut and egg! We are FREE baby! She immediately came home from the test and wanted a peanut butter and jelly sandwhich.

Which......she hated. Ha! If figures.

She did say she wanted to try the sandwich again, so we will try again. Someday.

She also has had scrambled eggs.
Which......she also hated.

She is probably thinking - all this time and THIS is what I have been missing? Really?

She did have pie. She loved pie. And she had her first birthday cake since she was a year old. (her own party was the last time she has had cake) 5 1/2 years - no cake! Can you even imagine??

The girl is kiddy with excitement about her new found freedom. I look in our cabinets and can't believe that she can eat everything in them. No more reading labels or watching her like a hawk at every function. Freedom tastes good.



Finley is not allergic to eggs any longer either! She also had scrambled eggs, and pie. She loved both. She is still allergic to nuts/peanuts, but hopefully in a few years she will follow in her sisters footsteps and we can put one thing behind us.

Happy dance, happy dance. Birthday parties just took a step up in our house!

Finley and Cainan started preschool this last Wednesday. We moved them to a new school this year, and so far it has proven to be the right choice. They are in separate classrooms. Here is a picture of them standing outside of their school.

Where are their bookbags and cute outfits you say? Well.......this isn't their first day of school. Or their second. I took this on their third day. Yeah, I am a little slow with remembering to take my camera with me where I need to.

But, at least there is a picture. I should get some credit.

I took a picture of the kids standing outside their classroom. Here is Cainan. He is in Preschool Two. (there are 4 total)

Here is Finley. She is in Preschool One. Her picture is a little fuzzy because Finley doesn't stand very still. And she was anxious to get inside, so I didn't push the "perfect picture" issue.

They are enjoying it. Finley hasn't gotten potty at school yet. And when I say she hasn't gone, I mean she hasn't used the bathroom THE ENTIRE DAY. She holds it for 8 hours and them comes home to use the bathroom. She is just like Arlington. I wish I had her bladder.

Finley has always hated public bathrooms, and until she becomes comfortable at school, she apparently isn't going to go. She is a nut.

Both the kids have journals that the staff are keeping on the kids. It tells us all about their day/week, and there are pictures in it. It is really neat - I love it. They also have the kids practice "signing in" each day. Finley's name mostly looks like this: llllllll but you know - she'll figure it out. Eventually.

Or, true to Finley style - she will talk another child into doing if for her.

Arlington had a birthday party today. We have been to so many and believe it or not - not one repeat! Today's was at a farm where Arlington and her buddies got to pet animals, and ride horses, and got their faces painted. And of course, there was cake. She had a fabulous time and was a really good girl.

Her mother forgot to take her camera. Please tell her mother that she needs memory pills.

My parents also arrived today for their week long stay. They came to watch Arlington while I work next week.

The babies got a piggy back ride from Papa.

Giggling all the way

We had a cookout, and enjoyed the breeze.

This kids played after dinner in the yard, and then we went to our local ice cream place for some yummy treats.

So that is all for now. A very successful week. I am hopeful that next week, at Finley's eye appointment, we get equal good news like we got this week.

Finley says goodnight. Chicken style.

See you Tuesday!

Monday, August 17, 2009

News, Heat, Fairs, Fun, Friends

NEWS - we FINALLY heard from Dr. Miracle in Boston. I got the call on Monday afternoon from her office stating it was our turn to make an appointment. We will be seeing her in Boston Children's on August 26th. We were told that we were lucky to be getting this appointment because normally there is a 7 month wait for an appointment for Dr. Miracle. But, she has had some cancellations due to school, so we are in! Thank goodness.

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.

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......