Saturday, February 27, 2010

Update on the Finn-miester

Before I start my update I want to let you know that today we FINALLY celebrated Chinese New Year in our house. I took a few pictures of the kids in their outfits, which I put through out the post. (and we had yummy Chinese food for dinner today!)

On Tuesday I had a "non-IEP" (individualized education plan) IEP meeting for Finley. This doesn't make sense, you say? You would be correct. But it had to be done. See - Finley doesn't qualify for special education at our elementary school.

BUT - she does qualify for vision impaired services. In order for BESB to get her an orientation and movement specialist, and continue on their path of VI education, they needed the school to give their okay.

So. Much. Paperwork.

Anyway - this meeting only took about 30minutes, which wasn't bad. And it wouldn't have taken that long, but the principal at our elementary school is new, so she was curious about Finley. She knew of Arlington (hard not to with that unusual name). So she was intrigued to learn about our little firecracker since Arlington is such a "sweet girl". Yeah. Wait until she meets Finley.

The occupational therapist read from her report and wanted to make sure I didn't have any questions about what we were supposed to be working on (balance). Since the one occupational therapist at the school is a good friend of mine, I have it under control. The special education preschool teacher was curious about what BESB was doing with Finley. They all took notes about different accommodations Finley needs now. I can see that when it is time for Kindergarten they are going to be very helpful, but are going to need a lot of guidance. Thank goodness for BESB. They will make sure the school gets what Finley needs.

Afterwards, Gail (Finley's VI teacher) and I talked a bit more about her standing so close to the TV. She thought at this time I should just let it go. I told her my concern is that as she gets older how this probably won't be socially acceptable. But she assured me that Finley's true friends will realize that is what she needs, and they will accomodate her. She gave me a few more magnification devices and another little "set" (a play set with props and a book in print and braille - we have three now). She spoils Finley rotten.

This week - on Monday - we got an email from the Carver Lab in Iowa (the place that is running the DNA test on Finley to find out what gene of LCA she has) saying they think they have found something. I asked what it was, and they gently told me that they cannot give me priliminary results. The reason they were contacting us was because they needed blood from Mat and I to determine what they found. I wish I could explain it to you. Mat could write it out for me, but you would probably be as lost as I was. Basically - either what they found is LCA causing or it isn't. Mat's and my blood will prove one way or another.

My mother-in-law said that getting a bit of news like we did on Monday is like dangling a carrot just out of a bunny's reach. She is so right. We have waited 6 long months for results and we are very close now. But we have to get our blood to them in order for us to get our answer.

As most of you know.....we live in a small town. We got a lot of "uh - we can't do that" when we asked to get blood drawn and mailed to an academic lab. Don't get me wrong - everyone was very nice and racking their brains to find places for us to call. But every call was the same answer. Finally - after about 1 million phone calls (3 days worth) I found a place. Halle-flipping-lujah.

So today we had out blood drawn and sent off to Iowa for testing. From what I understand, it should be a few weeks to a month and we will know something. SOMETHING!!! It is almost too much to bear. We may FINALLY know what we are dealing with. It will give us a small glimpse into our future. So please pray that 1) the lab finds the gene of LCA in their research so that we know our daughter's official diagnosis 2) that if they find an LCA gene that is is a STABLE one and not a DEGENERATIVE one (yes it could be one or the other).

Wednesday Mat and Finley went to Boston to have her night blindness test. This is to, of course, find out how well she can see in the dark. I think it is officially called Dark Adaptive Threshold test. Something like that. She had to sit in a dark room for 30 minutes - completely dark. Mat was a good one to go on this trip because he made that a great game. Finley enjoyed recounting the "find daddy" game they were playing while they waited. Mat said a guy went behind a screen and shinned a light and that light got dimmer and dimmer. Finley's job was to find the light he was shining.

Mat said she got it right every time. So the end result was that she doesn't have any trouble seeing in the dark. That her eyes adjust to dark rooms and she can still see in dimly lit areas. We kind of already knew this. She doesn't see great with restaurant lighting, but she does okay - like if the crayons are dark enough. But this was good news.

They also did another eye exam on Finley and took more pictures of her retina. The Dr. believes that Finley's vision is about the same as it was last summer. She does not see any change. More good news. She also said the blackened areas of her retina have not gotten any worse either and the vessels in her eyes still looked great.

She has read the vision field report and after looking at that - and the pictures of her retina - decided that trying some glasses on Finley would be an good idea. I was happy to hear this because 1) Finley does have a bit of a refractory error with the vision she does have and 2) that means the damage isn't RIGHT where the light bounces off to correct such refractory errors.

But they tried the glasses at the end of the testing - about 4 hours after it started. Mat said she was beat, and the test came back that the glasses made her vision worse- not better. Dr. Fulton wasn't convinced this was entirely true, but left her alone for the time being. It could actually mean that glasses don't do a thing for Finley, but no necessarily.

So a good news appointment. I would be doing a disservice, though, if I didn't say that the doctor was a complete ego maniac this appointment and was not very kind to Mat. Mat, being the geneticist, always has questions about the genetic aspects of Finley's GENETIC eye disorder. Silly him. This doctor does not like to talk with people that might be of equal intelligence to herself. She doesn't want to be challenged. She just wanted to dumb down information and walk away. And say "here is your bill for $1200. See you in a year."

We are not that family.

So Mat did not leave there pleased with her attitude, and I was mad that the doctor treated him with disrespect. Above all I didn't feel that she felt our nervousness, and anxiety, and sadness about this whole thing. She didn't take the time to listen to his concerns and his questions. She blew him off.

So thankfully we won't have to see her again until next February. We will see Finley's pediatric opthalmologist in July, Perkins School of the blind for another vision field and magnification test in August. Finley will see BESB two times a month in between all of that. And we will go and visit a school of a child who is blind and see all of her equipment. And we will go to a conference at the Perkins School of the blind. And we will go to an LCA conference in Philadelphia. And we will start to prepare for next fall's vision walk in Pittsburgh.

I could go on forever.

We will be getting her results back soon, and so we will start to move forward.

And even with all of this - we still have to have a life. We are going to be planning a vacation this summer, and then a trip to Disney World next year. We have to finish this school year and get ready for the next. We need to play, and relax, and travel, and work.

It sometimes becomes all consuming thinking about Finley and all that comes with this diagnosis. Every day in the mail I get catalogs for the blind, visual aides for the blind, free matter for the blind, books for the blind. It is in my face. All. The. Time.

Because it is always in our face, it becomes a consuming pass time. To step away and realize that through all of this I have a husband, and three kids, and a house, and a full time job, and a son with his own needs - it is like a whole separate life.

I am hoping at some point it will slow down. Or change. Or become less of a focus. I am not sure what. I just wonder how long it is going to be until that happens. Next year? 10 years? Never? Hard to say.

The balance is what I need to work on. I think now that we won't have another eye appointment for 6 months (After we have had one every month for 6 months) will help a little.

That is the latest. I hope that in a few weeks I will have news about what LCA gene she has. And then, I feel like I might be able to breathe a little easier.

See you Monday for "making meals monday"!

Tuesday, February 23, 2010

A visit to the 'ville

I need to warn you now - this post might be really huge. I am going to fill you in on our week in Connellsville where my parent's live. (and Mat's parents as well). We were there for 6 whole days, so it may take awhile to recount all the happenings.

Don't get me wrong. Connellsville is not a large city. It is a tiny sleepy town in Western Pennsylvania. It got blasted with the last snow storm and the kids missed 8 days of school in a row. The town was completely crippled by this storm. It snowed every day we were there.

So what did I do? I took pictures of course. You're welcome.

Let's start with my in-laws house. My in-laws live in the mountain area of Connellsville in a town called Indian Head. It is home to about 10 people. Just kidding. At least 25.

(yes Finley has chocolate on her face. No idea)

This is their new snow wall that the plow has built for them.

Doesn't it make it nice and private? I thought so too. I am sure it will melt by July. Well......pretty sure.

I took some pictures of the icicles that are hanging down from a few buildings and houses.

Aren't they impressive? I know there are better ones around, but it is not very safe to drive and take pictures.

Now that you have had enough snow visuals, let us start at the beginning.

Sunday night we arrived at my in-laws house. We did not attempt to get our van up their very steep, very snowy driveway. It would have been adventures in driving to say the least, and a TRUE adventure at the very most. But we stayed at the bottom, and my father-in-law shuttled us up the hill with his 4 wheel drive. If you could get a mental picture - he lines the car up at the bottom of the driveway, backs up about 10 feet........and then guns it up the hill!! Growing up (remember Mat and I started dating when we were 15/16) I remember the challenge of getting up the driveway. It has not gotten less thrilling.

The kids were good at my in-laws house and Ben and Sally and I enjoyed some Olympics on TV before retiring after a long day of travels.

Monday - I went to the "city" (I use this term loosely since there are like 100 people in Connellsville. Okay - more like 8000, but you get the picture) to spend the day with my parents WITHOUT the monsters children. It was so peaceful. My mom and I went out to breakfast, shopping, and then home. We had Bud Murphy's pizza for dinner. To anyone who doesn't live (or use to live) in Connellsville - this won't mean a thing. But it is the best pizza on the planet. I have lived in 5 states and I have NEVER had pizza as good as this. Bud Murphy is a person. Just in case you were wondering. A little Connellsville history for you.'re welcome.

Monday night we walked to my parents friends/neighbors house for some cherry pie and conversation. We had to walk because 1)it is only a block and 2)our car was not really interested in navigating unplowed roads. We had a great time with them and even got to Skype with their daughter and grandaughter who live in California. It was fun.

Tuesday - I woke up when I wanted to. Kind of unbelievable feeling. I don't get to do it very often. We went to breakfast at IHOP. YUM. It was snowing, so there weren't many people there. That was pretty nice. We did a little more shopping and I got a chance to visit with my Aunt Sally and Kathy. It was a nice morning.

That afternoon my dad went to pick up Arlington from my in-laws house because we were going to a West Virginia University girl's basketball game. My parents graduated from WVU (many moons ago........) and growing up we went to all he WVU football games. It was always fun. My grandmother (my mom's mom) always cheered louder than anyone. She is a total sports nut.

I am getting off course.

My mom and dad bought Arlington a shirt. And a bear. And pom-poms. And they gave her mardi-gras beads in blue and gold. Total overkill. But she looked cute.

We had dinner at Texas Roadhouse. I had never been there before. Finley has a nut allergy, and they have peanuts everywhere, so we can never go. But the food was awesome, and only going to dinner with one kid and three adults was not too shabby.

The game was a lot of fun. We got to sit about 5 rows from the front.

Arlington enjoyed the game and really got into the action.

And she got her picture on the jumbotron.

She was pretty excited to see herself!! And they stayed focused on her for awhile. She started waving her pom poms around.

She enjoyed watching the cheerleaders and the dancers and all the little games that were played during commercials. (televised).
She did get a bit tired, so at halftime Papa bought her cotton candy.

Here is what happened after that.

And the girls WON!!! Yay!!! The beat Rutgers. Whoo hoo!

Wednesday we took Arlington to breakfast at another local Connellsville joint called Valley Dairy. Again - if you live there - you cannot NOT love this place. It is cute and the food is good. It has been around for as long as I can remember. We used to go there every Sunday before church for breakfast and after all the high school musicals for ice cream.

Totally cheesy, I know. But we got to have breakfast with three fabulous ladies - friends of my parents (and one was a teacher of mine!). A big hello to Stephanie, Toni, and Janie for entertaining Arlington during breakfast. We had a great time!

Then we hit the dollar store. My hometown rocks. Arlington bought herself a shamrock headband (with feathers) and a shamrock necklace. She wore it for three days straight.

After we left the dollar store, we went to visit our friends Marge and Larry Orlando. They have about the coolest toys on the planet and Arlington was well entertained there. She was totally fasinated by their house and I think she was a little disappointed when we left. I wish I would have taken my camera!

Wednesday afternoon my dad went and got the little ones from the in-laws and the party was over. I cannot thank my in-laws enough for entertaining those VTs for 3 days. I am sure they slept good Wednesday night. And I know Finley and Cainan (and Arlington the first few days) had a blast!

Wednesday we got to hang out with another family who adopted from China. She adopted two girls and they are so sweet. The brought their American Girl dolls with them and they played so nice with Arlington. Arlington has talked non-stop about them since they left and made me promise that the next time we are in the 'ville that she can spend more time with them.

Wednesday night we went to another local restaurant - the Italian Oven. SO GOOD. I hit my three favorite spots while I was visiting, so I was a happy girl. Hey in a town that has a store called "Crafty Tats" what more can I say???

Crafty Tats sells crafts AND gives you a tatoo. One stop shopping people. One stop shopping.

Thursday the kids and I got our hair cut.

There is a woman there that we went to almost all our lives and when we are in town, I love to have her cut our hair. she does a great job and she is so fun to talk with.

Tina is amazing!

She did a great job on the kids hair. They just got trims, but they sorely needed them.

Everyone looks very pretty now.

This was Cainan's first real haircut and he was not in love with the idea. But he lived.

After that we went to another local restaurant called Hometown Diner. I don't like this place as well as Valley Dairy, but it has become a favorite of my parents. I did forgive it when they served stuffed french toast though. Yum.

Marge Orlando came up around lunch time to see the three monsters angels in action. I am sure when she left she was glad her sweet little granddaughter is still so small and sweet. What I have to say to that??? Just. You. Wait.

(Cainan is apparently being choked by his sweater)

Thank you, Marge, for the sweet gifts for the children. They are so spoiled by you! My mom is never going to catch up.

After our visit, we went to my grandparent's house. (my mother's parents). My grandmother made home made ravioli for us.

Hands down - she is the best Italian cook in the world. She makes it look so easy and it always tastes unbelievable.

We spent the afternoon and evening there.

(making silly faces with their Grammy)

I took toys, but I didn't need them. They have a big house with a lot of rooms to explore. They spent about 1 hour in their finished attic space.

Then my grandmother strung up a clothes line and gave them clothes pins, and they came up with this masterpiece.

I should have known I didn't need to bring anything. When I was growing up we always played with her stuff. Her stuff is the coolest.

Friday we had breakfast at home. We had company for breakfast on this morning. Our family friends Rod and Judy and my Godparents Chris and Mary Louise came to join us. It was great to see them.

Rod and Judy just became grandparents to a beautiful baby boy! He was born on Arlington's birthday. All of them brought the kids presents of course. Mary Louise made Arlington a beautiful scrapbook for her birthday. She makes one for each child for each birthday. I really treasure them.

They survived our company until late morning, and then they were off.

After they were gone we took the kids to my old high school. CAHS. Ah, the memories. It was fun showing Arlington around. (the other two didn't care as much - they just wanted to run around). We got to see the music room, the gym, the pool, the library, and the art room. All the things on Arlington's list.

The chorus sung a song for the kids. The band kids let them beat on the drums. The kids in art let Arlington check out their art work. They were all really sweet.

And we saw many, many people who know us threw the blog. I was blown away about how many people follow my blog and how much they care about our family. This is a huge shout out to all the people who work at CAHS and care deeply for us. Thank you from the bottom of our hearts. To know you are out there reading - it warms my heart. And how much you care about us??? Unbelievable gratitude. Thank you.

Oh - and thank you for all the candy you gave the kids to sugar them up. That was awesome too. They will be coming to live with you next week.

We left for my brother and sister-in-laws house after our visit to the high school. We went to my brother's high school to watch his musical practice. AJ is a music teacher. At the high school. God love him. I don't think I could deal with the teenagers all day long.

But they were really sweet to my kids. AJ's school is doing Beauty and the Beast and so he wanted the kids to see Belle's Castle which has recently arrived.

The kids thought it was fantastic of course. And Arlington and Finley got to meet the girl who will be playing Belle.

Finley did NOT understand where her yellow dress was and she asked about it around 1 million times before we left. Her sweet Aunt Tricia took her to see the dresses twice to help satisfy her.

It is unfortunate that we don't live closer so that we could go and see the musical. I am sure Finley and Arlington (and maybe even Cainan) would enjoy watching the production.

After the running around, we went to AJ and Tricia's house for some dinner and crazy time.

And when I say crazy time, I am talking solely about my children. My nephew "E" was the best behaved. From 6:30-7pm every night my three turn into wild animals, and when we are at another person's house - this is no exception. Thank goodness AJ and Tricia love them. Otherwise, we might have been out in the snow.

I enjoyed listening to "E" make baby language speeches all night. It is a crack up. I think he was trying to say "Aunt Jenny is my favorite". Or maybe it was "get me out of here". One or the other.

I did fail as an aunt once, though while I was getting my children into the tub. Arlington taps me on the shoulder and says "uh, mommy? E is putting his hand in the toilet". He was having a good old time swishing the water around. Yep. I am in control. Don't worry - I washed him off!

Saturday morning we drove back home. IT was a fun week. We crammed a lot into it.

And it snowed just about every second we were there.

Now we are back to work and back to real life. Tomorrow Finley has a dark adaptive threshold test where they will test her night vision. Saturday I will update you on all the things that we are learning about her.

If you are a faithful reader - I would love to hear from you. Let me know you are there! Under this post is the word "comment". Click on that. Then go to the page to leave your comment. You can post an annonymous (it is a choice) - you do not have to have a Google account. But remember to sign your name!!

**Disclaminer - some of these pictures were taken by my mother who has no patience for her camera.

Whew!!!! You made it to the end!!!

Stay tuned! See you Saturday!