Day 27 - Times Square

It's late so just a quick easy post. This year a picture of Ella that I submitted was picked to be included in a video shown in Times Square during the New York City Buddy Walk. This is Ella's 3rd time, out of 4 submissions, to be included in the video. They sent a link yesterday with pictures taken of the pictures during the video.

Here is a little generic fill in the blank statement that they sent out explaining it too!

NEW YORK, NY - Ella Grace Bode of Spokane,WA, will appear in lights on Broadway on Saturday, September 24, as part of the National Down Syndrome Society (NDSS) video presentation, which promotes the value, acceptance and inclusion of people with Down syndrome.

The photo of Ella, who has Down syndrome, was selected from over 1,200 entries in the NDSS worldwide call for photos. Over 200 photographs will appear in the video, which will be shown on the larger-than-life MTV plasma screen, located in the heart of Times Square.

Ella is pictured riding the therapy horse, Sugar.


The Times Square video presentation kicks off Down Syndrome Awareness Month in October. The video presentation will be followed by the 17th Annual New York City Buddy Walk® in Central Park. This year, Buddy Walk events will be held in more than 250 cities across the country, as well as select international locations, in and around October. For information about the NDSS Buddy Walk Program, visit www.buddywalk.org or call 800-221-4602.

About NDSS

The National Down Syndrome Society is a nonprofit organization with more than 350 affiliates nationwide representing over 400,000 Americans who have Down syndrome. The mission of NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities. For more information visit www.ndss.org.

And there is my baby girl : )

Day 26 - Fieldtrip

I had the pleasure??? of going on a field trip to Hidden Acres Farm today with 28 preschoolers. It was freezing cold but at least it wasn't raining! Ella was all out of sorts, I'm thinking she might have a sinus infection, but we still managed to have some fun!

Here she is this morning before we left the house.
Here we are on the bus. She was so excited to ride the bus.....because we don't do buses with Ella in general. She did pretty good though I had to remind her several time to sit down.
My beautiful flower.

The hay maze. Ella was NOT a fan and stood at the entrance refusing to move, even though her class was way ahead of us. Me being the nice mommy that I am pushed her in, only for her to start bawling. So, of course I had to pick her up and carry her until I couldn't possibly carry her anymore (because I was also carrying a large bag with extra clothes, coats, and diapers and wipes because we are in the middle of a Miralax clean out and no one wants to be stuck on a farm with poop all over themselves.) She decided that it wasn't too bad once we were in the middle of it.

Then we came to this big pile of hay bales. She thought it looked pretty cool and climbed right on up with the other kids....

and then freaked when it was time to come down because she had to use her hands and touch the hay which she was NOT a fan of. So she froze right there

and I had to climb up and get her.

After that we explored some tee-pees. But she refused to go in them once she peeked inside to find several shrieking/yelling preschoolers inside.

Then we visited some sheep and a pig. You can see how she felt about that.

We then went to pick a pumpkin. She freaked out there because the vines or weeds or whatever they were were nearly as tall as her and a couple touched her so she then refused to walk again, which meant I had to carry her, which meant no pictures. Once we found a good pumpkin (most were rotten) I set her down and told her to pick it up. Apparently she had been sucking her thumb so it was wet, well she put her hand in the dirt and it all turned to mud on her thumb which made her cry even more. I was really tempted to leave the dirt on so that she wouldn't suck on it, ha ha!

Then we went on to pick apples. This she enjoyed!

After the apples we headed over to go on a hay ride, which requires you to sit on....HAY! That was so not happening, but she was fine sitting on my lap. So no pictures of that either.

Finally Ella's favorite part of the day.....lunch!

I really think she must not be feeling very good because this was so unlike her. She is currently on hour 2 of her nap. Poor baby.

PS - I still have some more to write about the Conference!

Day 25 - Ds Convention Part 3

We knew that this was going to be a great trip, had been looking forward to it all year. But, there is a little fear/anxiety in the unknown in going for the first time (at least there was for me.) That fear was set aside on the plane ride down. We boarded the plane in Denver. There were two seats on each side so Ella and I sat on one side of the plane and my mom sat on the other. I looked up and saw a young man with Down syndrome coming down the aisle, and wouldn't you know it he sat next to my mom, (his parents sat a couple of rows ahead.) This man was hysterically funny and oh so smart. He told us that he used to work at McDonalds but he started getting too fat so his mom made him quit. He kept track of his calories at every meal, even asking mom what she thought the chocolate chip cookie the airline passed out counted as. He also asked her how many calories she thought he burned walking from security to the gate. He told us about getting lost at a conference in Orlando and how his mom "freaked out" about it. He was reading a magazine (a health and fitness magazine) and there was a picture of Jillian Michaels and he kept going on and on about how sad it was that she wasn't going to be on Biggest Loser anymore. The man talked and talked and talked. My mom tried reading but couldn't because he just kept talking and then even faked going to sleep, but he just kept talking. It was hysterical. I'm guessing that's why his parents sat a couple of rows up, LOL!

The best part of the conference to me was everywhere you looked there was someone with Down syndrome. It was so crazy to me the first day. Every time I spotted a person with Ds I wanted to stare (because that's what I do, it's not often you see someone with Ds.) It was amazing how quickly this became the norm for us. I can't even put it in to words how awesome it was to be surrounded by beautiful faces! In fact we went to the River Walk after the final workshops on Sunday and only saw a hand full of people with Down syndrome and it just seemed so strange that they weren't everywhere. Kind of sad.

I got to meet a couple of ladies and kiddo's whose blogs I have followed for many many years. Unfortunately I wasn't really good about taking pictures because I was too busy taking it all in. We got to see Kayla (Big Blueberry Eyes) and her family while we were there and I actually had my camera on hand. We first met Kayla back in June of 2007. Their family was visiting family in Oklahoma and were coming into town (we lived in Wichita Falls, TX at the time) so Kayla and her mom came to visit us at our house. Ella was 9 months old at the time!! It was pretty cool to see how much the girls had changed!!! Here are some pics of that original meeting and then at the conference!


Hunter and Kayla hit it off and had fun swimming and playing together!

Ella and Kayla
Kayla loving on Ella

Playing

The moms and the girls in 2007

And 4 years later in August of 2011
Aww, hugs!
My how they have grown!
And this pic just because she was so cute.....and fat, look at those arm rolls!! Oh I miss those baby days!!

Day 24 - Ds Conference Part 2

My mom, Ella and I flew out of Spokane early Wednesday morning and got into San Antonio that afternoon. Holy crap it was beyond hot. It makes taking a shuttle with 3 suitcases, a stroller, a car seat and 2 carry-ons much harder when it is 112 degrees outside. The walk from the shuttle to the rental car was....interesting. We had some little cart thing to throw all of our luggage on and I was pushing that, well the wheels didn't exactly turn and so the whole thing ended up tipping and dumping our luggage. I just stood there laughing and melting, luckily the attendant at the lot took pity on me and ran over and helped us get our luggage to the car. Our car was a BLACK Mazda 5, so he cranked that on while I fought with installing the car seat. It's crazy how much harder everything is in that heat. We lived in Texas for nearly 4 years, but I guess you forget just how miserably hot it really is!! Anyhow by some sort of miracle we made it to our hotel, unpacked and then set off on a search for a Chik-fil-A. We found it and it was yummy, LOL!!!! We ate and then stopped at Walmart to get a few groceries. When we got back to the hotel it was dark so we just walked around the water park and checked it out! The next day we spent at the water park, which when it is that hot is the perfect thing to do!!! Thursday evening we went to the early registration pick up. Right outside the doors they had this huge Longhorn!

They were letting the kids and adults with Down syndrome to climb on up and take pictures. Ella was very reluctant!! She was sitting up there with her head down kind of sad, that is until everyone standing around started to cheer. If you know Ella you know she LOVES an audience!!!

That thing was MASSIVE and oh so cool!!

Day 23 - Ds Conference Part 1

This past August my mom, Ella and I went to the NDSC Conference in San Antonio, TX and we had a BLAST!!!! I have a lot of pictures to share and my thoughts on the whole thing (which is that it was awesome,) and I will start with pics of Ella in the kiddie pool. The hotel that the convention was at had an amazing water park, including a kiddie pool with slides, a few adult slides, a huge pool, an adult only pool and best of all a huge lazy river! I only took pictures the first couple of minutes of swimming because I was having too much fun!! I want to go back!!!

Day 22 - Ella school picture

Blah. That is what I think of Ella's school picture. I just don't care for it. Not her fault at all. I don't like her hair all pushed back behind her shoulders. It just looks strange to me, she looks like she is about 10 pounds heavier too, I guess maybe that is just the angle of the camera. I guess I should just be thankful that she doesn't have boogers on her face and that her glasses are on straight : )

Here is her school pic
Here she is 1 1/2 hours before her school pic.

Just another reminder to STOP buying school pictures....I never learn!

Day 21 - Ella's eyes

Ella first got glasses a year ago this month. I was so sad that she needed them, it was just one more thing to deal with and I just KNEW that she would never wear them! Well, she wears them pretty darn good. Shortly after she got her glasses though one of her eyes started crossing really bad (it had been crossing just a little bit before) and then just a couple of weeks after that the other eye joined, so both were crossing in. So in March of this year Ella had surgery to tighten the muscles on both eyes.

The surgery wasn't too bad, the hard part was keeping Ella from rubbing her eyes, especially in her sleep, and the eye drops several times a day was no picnic. But otherwise Ella didn't seem to experience any pain from the surgery. We were told that she may have to have surgery again at sometime in the future and that her prescription would likely improve after the surgery, though she has a bad enough astigmatism that she will likely always need glasses.

So, about a month and a half or so after surgery we head back into the eye doctor to see if her vision has changed. Indeed it did! It went from a +2.25 in both eyes to a +1.0 in one and +2.0 in the other. I was telling the eye doctor about this weird thing that Ella was doing, if I were to hold out a flashcard and ask her what color it was she would kind of look at it but would then turn her head really quick and just blurt out some random color. The doctor was saying it was likely some behavior issue, and I said I didn't really think so that it was just really strange when she did it. So she tried out a few things and low and behold Ella was having focusing problems. From what I understand (which could be completely wrong, LOL) when someone is farsighted and they try to focus on something up close their eyes cross from straining to focus and that is what was happening to Ella, even though she was wearing her glasses. And of course when you cross your eyes things get blurry. So, while she was wearing her glasses the eye doctor held up an additional lens and it allowed Ella's eyes to relax and focus right in on what the doctor was holding up. So, Ella now wears bifocals. There is just something so wrong about a 4 year old needing bifocals to me! The good news is that Ella could grow out of her focusing problem, the doctor said in fact most kids do by the age of 8 or 9. We had some major problems with getting her bifocals fitted just right. In small children the bifocal line is supposed to dissect the pupil, meaning that the bifocal line is supposed to sit right in the middle of the pupil (which for the record would drive me insane.) Ella wasn't exactly the most helpful child with the glasses place was trying to draw a line on her old glasses to line it all up. When the glasses came back the line was above her entire eye and the lady tried convincing me that they were right and to give it a week. The next day I hauled Ella into the eye doctors and showed them and I was right, they were awful, so they drew the lines on themselves and after about a month of back and forth she finally got the glasses back and they were correct. I have spent $600 on glasses (she has 2 pair) in the past year on Ella that's not including the $200 that our insurance covers every other year. Ella has been wearing her bifocals since the end of June and does really well with them! Here they are....
You have to look really close to see the line. They look below her eye but if you are looking at her at exactly her eye level they are where they are supposed to be : )
These were taken Wednesday morning, Ella's school picture day, we were practicing : )

We were back at the eye doctor in September, because we go every 3-4 months and the doctor said that one of her eyes was starting to cross again. Sigh. But that they still looked good in her glasses. We go back in December and hopefully everything is still fine, which I'm thinking it is but the world is taking my surprise these days : ) My big fear is the Graves' Disease messing with her eyes. I just might go crazy, or crazier!

Our kids with Ds, at least mine anyway, are kind of hard sometime to tell if their eyes are crossing or not. They have wide, flat nasal bridges in addition to the epicanthic fold and it makes it hard to judge whether they are having true crossing or pseudo crossing (where it appears that their eyes are crossing but it's actually just the nasal bridge getting in the way.) For me it's hard to tell with Ella. I mean before she had surgery it was not hard to tell at all she was DEFINITELY crossing. But now it's a bit harder. She doesn't have a whole lot of the whites of her eyes that shows on the inside corner of her eye anyway so when less is showing it looks like it is crossing. So, for an example in the picture below is her right eye crossing a bit or is she just looking to the left a bit so the white of her eye is hidden by her nasal bridge? I don't know and frankly I don't notice it unless I see pictures.

This was the night before school pics as I was trying to figure out which shirt looked best with her face and how I wanted to do her hair : )