Ella Grace with the Pretty Face

Ella's Fashion Show

2012-01-28T20:10:00.000-08:00

We went to the Children's Museum downtown today (see pics HERE )
which is in our mall downtown. So after we were done we grabbed a bite to eat and then walked around the mall. I of course had to stop in BabyGap and found a few cute things. Well, Ella decided she wanted to have a fashion show...so we did : ) She was so stinking cute announcing herself and prancing around. Luckily I had my camera on hand to get a few shots. She especially loved the "rockstar" sunglasses!

Reptile Man

2012-01-24T22:02:00.001-08:00

Yesterday Hunter came home from school begging me to take him to see Reptile Man tomorrow (today,) "it only cost one dollar per person!!! Please please please." What is a mom to do...so of course I took Hunter and Ella to see Reptile Man tonight. Reptile Man is apparently popular and has been on TV shows such as Bill Nye the Science Guy, which I remember from when I was a kid. It was interesting, the guy was actually quite funny. Ella was not a fan of all the yelling by the 2 million kids (not really but sounded like it) every time the guy pulled out a new reptile, but she did like the alligator, tortoise, snakes "it's beautiful!" Hunter of course loved it!!!

I love this picture. Hunter was very into showing off his little sister to all his friends, and she was so excited to sit with him (until the screaming started.)

Hunter and Lucy the alligator
Ella standing next to Hunter and Lucy. She freaked out and wouldn't hold it. The Reptile Guy was so sweet. He actually brought the alligator up to Ella right after the show so she could pet it, and was so sweet to Ella and talked to her for quite a bit!

The kids with the tortoise.

Ella had a change of heart and really really wanted to go hold Lucy. The Reptile Man helped her out, she was good until Lucy moved and she freaked again, of course I hadn't gotten a picture yet. Luckily Reptile Man sweet talked Ella into trying again!

So, this is one of the snakes, the largest one he brought. That is one of our little friends in the center, Isali. Anyhow see the size of that snake????

Here is my crazy child face to face with that same snake. Talk about making me nervous. Though the Reptile Man did say that all of his snakes have had their venom surgically removed and that this is the sweetest snake he owns and he tells me "it's okay mom, it won't hurt her." My kid is afraid of screaming/shrieking kids but an 8 foot snake....no problem.

And just as a bonus picture here is the Reptile Man and some really creepy tortoise!!! Look at that mouth.

ANOTHER snowy day!

2012-01-20T19:06:00.000-08:00

It snowed a lot yesterday and really early this morning. All of the school districts around us closed for today, but ours just had a two hour delay. Needless to say Hunter was quite disappointed!!! The roads really weren't too bad though. It rained a little this afternoon and is supposed to warm up tomorrow, so I think our snow is not going to be around for long!

My snow lover. 24 hours on antibiotics and his ear doesn't hurt at all....oh how I wish Ella responded to antibiotics the way Hunter does!!!

Goof!

Climbing up the snow mound by the driveway from Daddys electric shovel, using her face to help!

Hunter and the neighborhood kids sledding on the snow pile made by the plow.

Climbing

She climbed her way to the very top and was quite proud of herself!!!

Sliding down

Ella is yelling "my foot stuck!!!!" She was getting tired, I know it's hard to walk in deep snow, I'm guessing it's really really hard when it's up to your waist. LOL

She freed herself and said "this is too hard work, I go inside." Ha ha

Snowy Day

2012-01-18T18:42:00.001-08:00

It FINALLY snowed here! The kids were SO excited. Ella talked about making snow angels and practiced on the carpet while we waited for Hunter to get home from school. As soon as he got home we got our snow gear on and headed outside! It was a toasty 19 degrees : )

Here is Hunter making his snow angel

Ella layed down to make her snow angel and FREAKED out screaming "it's too deep!!!!" So, I convinced her to lay in Hunter's snow angel (because it was flattened out) and she enjoyed that!
A lot!

Ella, Madison (neighbor girl and Hunter's buddy of 3 years) and Hunter driving the remote control car!

Love this picture....this kid was in Heaven playing outside in the snow!

And by the way, I do realize that I have a ton more pictures of Ella then of Hunter. That is because a) though it annoys Ella to have her picture taken it annoys Hunter far more! b) I try really hard not to embarass him in front of his friends and c) I have to stay with Ella at all times because she likes to run out into the street where Hunter is free to play on his own : )

It is hard to shovel when the shovel is twice as tall as you!

Speaking of annoyed.....I asked her what she was doing (because she was shoveling in the grass) and she sighed and rolled her eyes and said "I'm findin the treasure chest." Oh, okay. What do you think is in it "jewels. Pink jewels that match my jacket." Sadly she didn't find it, and that made her really mad.

After 45 minutes of playing outside in 19 degree weather I decided it was time for the small child to come in....she's known for not regulating her temperature so well. This made Ella so sad, it was quite pitiful!!!

Another blog...

2012-01-01T15:48:00.000-08:00

Come check out my new blog as I challenge myself by taking and posting a picture of the kids everyday for the year 2012. Should be interesting, lol!

http://365hunterandella.blogspot.com/

Merry Christmas

2011-12-25T09:41:00.000-08:00

The kids at the Down Syndrome Connections Christmas Party

On the cruise ship somewhere between Mexico and Florida

Clearwater Beach, Florida on Christmas Eve

Happy Thanksgiving and an Ella video

2011-11-25T00:45:00.001-08:00

We had a wonderful Thanksgiving today despite both of my kiddos being sick. Hunter was diagnosed on Tuesday with pneumonia and today Ella is not feeling well at all, has a little bit of a cough and by the end of the night had pretty much no voice. We headed up to my mom's house and ate a lot of really delicious food, played, colored, ate pie, watched Charlie Brown Thanksgiving, danced, an played some more! I have oh so very much to be thankful for...I am very blessed!!!

My babies.
The table, looked so good!
The kids made the place cards, Ella made Nana's.

My favorite of course, mine, Hunter made it : )

My view at Thanksgiving....I am a lucky girl!

Ella chowing down, ahhhh the crazy hair!

My Hunter Bug, I so love this sweet boy!

After dinner we did some coloring. Here is one of Hunter's pictures....it really cracked us all up, the kid has a great sense of humor. I'm thinking I will frame this one and put it up every Christmas!
Ella eating some pie! Pie makes a sick girl feel better....even if its only temporary!

My son however doesn't like pie, at least not pumpkin and not apple, and he hates Cool Whip/whipcream so he had ice cream. Crazy kid.

Here is a video of Ella before we left to go to my mom's. I wanted to record her talking about "fat turkey" as that is all we have heard about for the last 2 weeks. Her teachers read a story at school that had something to do with fat turkeys and she has been obsessed ever since. I just love the way she says it and never want to forget the year of "fat turkey!" Ignore her voice quality as she was in the process of losing her voice!

Make a video - it's fun, easy and free!
www.onetruemedia.com

All in all we had a fantastic Thanksgiving and we are so incredibly blessed!!!

Now hopefully we can get in at the doctors tomorrow for poor Ella, who is now breathing quite loudly.

Ella lost her first tooth

2011-11-11T15:38:00.001-08:00

Last night my baby lost her first tooth. I am depressed. Losing baby teeth is a sure sign that a child is no longer a baby. Sigh. I don't like it. Not one bit. We've known for about a week that she had a wiggly tooth, I noticed that one of her teeth looked crooked and checked it and found it to be quite wiggly. Hunter didn't lose his first tooth until he was 6 (much to his dismay,) and because Ella's teeth came in late I just figured we had a couple of years to go. Ella on the other hand was quite excited by it all! She put her tooth in a little zip lock bag and we told her all about the tooth fairy, she did NOT want the tooth fairy to take her tooth, LOL! When she woke up this morning she was very happy to have 5 dollars and didn't care about her tooth! She has told me about 100 times today about her "lost tooth." So cute! I keep getting teary everytime she talks about it, not sure if it's because she is officially a big girl now or because I know that some MAJOR orthodontic work is in our near future.....

Day 31 - Happy Halloween

2011-10-31T20:33:00.001-07:00

Phew!! I made it...did all 31 days of posting. Hooray!! The kids had a blast trick or treating tonight! Hunter was a SWAT officer AGAIN and Ella was Rapunzel who hated her long hair (the wig.) The weather wasn't too bad and the kids got lots of candy!!

Mad about her hair.

The neighborhood kids, Ella really not liking her wig!

So Daddy wore it instead : )

Day 30 - 21 things about Ella

2011-10-30T11:34:00.000-07:00

1. Ella's favorite game is Duck Duck Goose!

2. She HATES cheese!

3. She loves to draw. Her current fav is rainbows.

4. She does not like coloring books! Only plain paper.

5. Ella loves the Pinkalicious books and Max and Ruby and Biscuit and Barbie and well pretty much any book but her current favorites are No David and David Goes to School, perhaps she sympathizes with him!

6. Her favorite show is Max and Ruby with Cailou coming in a close second

7. Ella has some really great friends.

8. She loves to be funny. She tries telling knock knock jokes like this one
E: knock knock whose there?
M: um..whose there?
E: Poop!!! with hysterical laughter following

9. She attempts to sing nearly every song on the radio (even ones she doesn't know), typically a word or two behind and then when it's over she declares " I DID IT!"

10. If you tell her no she gets a pitiful face and says "you hurt my feelings."

11. She had declared pacifiers are for babies and now sucks her thumb pretty exclusively (much to my dismay.)

12. She hates her pillow and will throw it on the floor as soon as I walk out of the room.

13. Ella's favorite meal is chicken nuggets, fries and a chocolate milk and she asks for that nearly everyday.

14. Ella is doing really good at her princess ballet class (though it was a rough start) and has her first recital in December where they will be doing a marionette dance. It's super cute

15. She is also in Girl Scouts now...she is a Daisy.

16. Ella will not wear socks in our house. No matter how cold it is she takes them right off.

17. She has really great conversations with her babies, even when she is supposed to be sleeping and really takes care of them like a little mommy, it's so cute. The little ones are all named Baby Lexi and the big ones are Baby Alice!

18. Though she is quite girly, preferring to wear a tutu over anything else and carrying her purse around, two of her favorite things to play with are cars and legos especially if that is what Hunter is doing!

19. The child drinks non-stop at home. Downs cup after cup of juice (which is a very very tiny amount of juice and a whole lot of water.) This is a sign of Graves' Disease but she's been this way for a long time so who knows.

20. Ella loves to love BUT only if she initiates it!

21. I am the luckiest mom ever. Oh wait that's about me. Ella is the most amazing daughter a mom could ever have : )

Last night we went to our friends house and decorated Halloween cupcakes and made candy necklaces. It was fun!
She stole some of Juan's marshmellows....she thought she was quite funny!

Getting a little OT in, stringing candy onto her necklace.

Goofball!

Day 29 - Conference Part 4

2011-10-29T11:58:00.000-07:00

One of the fun things to do at the conference is to attend the dances, there were two this year. They are just so fun to watch. The dances are a BIG deal to the teenagers and young adults with Down syndrome, and boy to they have some great moves! It is quite entertaining. Unfortunately we didn't get to spend a lot of time in the room where the dance was because it was too loud for Ella. I mean it was really LOUD! Ella does not like loud noises but typically adjusts to it pretty quickly but that was just not happening there. She mostly liked to dance with Nana in the hallway, where we could still clearly hear the music (and where the snacks were which might be the real reason Ella was out there LOL.) She did get brave from time to time and venture back into the room, but wanted to be held. We still had a great time anyway!

Walking to the dance, giving her baby a piggyride

Another awesome thing about the conference is everyone is so friendly. Obviously people that are attending either have Ds themselves or are family/friends with someone with Ds, so everyone is "safe." Ella befriended several people while we were there. This lady below fell in love with Ella during the opening ceremony and came and grabbed her and took her into the conga line.
Nana and Ella dancing in the hall

Dancing with Ella is quite a workout. You just never know when she is going to throw herself backwords and assume that you will catch her. LOL!

Yep! I know I am cute! Everyone keeps telling me so : )

Day 28 - Proud

2011-10-28T15:21:00.000-07:00

I am a proud mommy. Really proud. I have two wonderful children. I know this. My kids are smart and funny and sweet (most of the time) and when people tell me these things my heart swells. Today I went to Hunter's 2nd grade class' Halloween party. The kids were making spider cookies and I was squatting in front of Hunter's desk.

This lady comes in and says hi to Hunter, then asks him if I am his mom? Hunter replies "Yep!" with a big grin on his face. The lady tells me my son is amazing, he really is the sweetest most kind hearted kid.

"Aww thanks," I reply.

She tells me she is Mrs (I forget her name.) the special ed teacher that works with "K" and that Hunter is so sweet to him and truly a good friend and helper. "K" LOVES Hunter." K is a little guy in Hunter's class that has CP.

Instant tears. She then says "I know he has a little sister with Down syndrome, he likes to tell me all about her. But, I think he'd be this compassionate even if he didn't."

Seriously? Way to make a mommy cry at a party.

She asked Hunter to go sit by his buddy for a picture for K. Hunter went right over and straighted up K's eagle head. It was just such a sweet moment for me.
With his yummy spider cookie that he made

Another cute moment was that this little guy kept signing something to me and I didn't know what he was saying (my signing vocabulary was just enough to understand a 2 year old) Hunter sighs and says "MOM he is telling you that he is an eagle. K loves eagles!" Which made "K" smile big and shake his head yes! I don't know what was going on in this pic but it made me laugh!

I just love this boy!!!!

I think that if I were a parent of only "typical" kids this wouldn't be so tear inducing to me. I would just think that it was cool that Hunter had friends of all abilities. But I think because I have Ella I realize that not every kid will be friends with her, not every one will just accept her as she is. Ella has so far had a best buddy in each of her preschool classes and I think she has been generally accepted just because preschoolers don't really pay that much attention to ability. I just hope that she has a friend like Hunter when she is in 2nd grade!!!

Day 27 - Times Square

2011-10-27T22:12:00.000-07:00

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

2011-10-26T16:07:00.000-07:00

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

2011-10-25T14:31:00.000-07:00

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

2011-10-24T05:43:00.000-07:00

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

2011-10-23T06:00:00.000-07:00

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

2011-10-22T06:00:00.000-07:00

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

2011-10-21T05:02:00.000-07:00

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 : )

Day 20 - Endocrinologist visit

2011-10-20T05:00:00.000-07:00

Tuesday was our return visit to the Endocrinologist, our first since her actual diagnosis of Graves' Disease. My friend Mary (Riley's mom) was sweet enough to go with Ella and I, Chris was sleeping and my mom was out of town, so that I could ask the doctor a ton of questions and actually get to hear his response without chasing Ella around. It is still just so bizarre to me. The first bit of information he told me is that she is now at a much lesser risk of heart problems, which caught me off guard because while I read that untreated this can cause problems I didn't realize she was at risk before. He said she was likely experiencing palpitations with her numbers the way they were and just not really able to express that to me.

Her numbers are all getting better, with her T4 and Total T4 now just in the "normal" range, her TSH isn't in the normal range yet still at just a 0.18 but it had been at a 0.01 so it's moving in the right direction. Overall the doctor seemed to be pleased with how Ella's body is responding to the medication and so far without any of the side effects. There is a chance that she could go into remission, but if she hasn't in 4 years then she won't and we have to discuss other options because it wouldn't be safe to stay on the meds forever. We do have to make her eye doctor aware of her new diagnosis because Graves' Disease can cause eye problems, including making the eyes bulge out. Luckily??? we see the eye doctor every 3-4 months because of other issues (to be discussed in tomorrows post) so that will be checked out at her appointment in December. The best news out of this was that we don't have to have Ella's blood checked again for four more weeks, when we will check all her thyroid levels as well as her white blood cells and her liver, which is much better!! We go back to the doctor in 5 weeks, hopefully everything continues to go smoothly!

I cannot stress to you parents of kids with Ds enough, GET YOUR CHILD'S BLOOD TESTED EVERY YEAR!!! We would not have had any clue all this was going on in Ella's little body, and probably wouldn't until she would have started having some very serious problems. Our kids don't always display the same signs and symptoms as other children, nor can they express as easily that something is off.

Tuesday was also Hunter's picture day at school. We had a little practice session on how to smile. Hunter has the most wonderful smile in the world, when it is not a fake one, LOL. I was taking pictures to show him the difference. These are "good" smiles!

Even this is a good smile, just needed to open his eyes : )

Love this one. My boy is so handsome, and looking so grown up these days!

Ella of course had to get in on the action. She also has a great natural smile, her fake one...not so much!

Ella and baby "Lexi" who had to be in the picture!

Alas, here is the school picture, sent yesterday to my email. It's not horrible, but not my favorite. Not sure why I pay for these every year : ) Oh well!!!

Day 19

2011-10-19T05:05:00.000-07:00

Today is Daddy's birthday!! He is REALLY REALLY old, LOL!

We love you Daddy!!!!

Day 18 - Ella's real birthday

2011-10-18T05:48:00.000-07:00

More pictures : )

My dad and Debbie were here visiting from Georgia for a week and got to spend Ella's birthday with us (which is also their wedding anniversary!) Here is the best out of about 12 pictures of the 4 of them!!
Love this one!
We went out to eat at Red Robins (the favorite birthday dinner place!) They of course sang to here and brought her an ice cream sundae and balloons!

Nana and Ella

Yum!

Daddy and Ella

Woo hoo a Barbie and five dollars, makes a girl excited : )

Cake time....AGAIN LOL!

Today is our appointment with the Endocrinologist....I'm sure I'll have lots to write tomorrow : )

Day 17 - more b-day party pics

2011-10-17T05:56:00.000-07:00

Ella is obsessed with birthdays. She LOVES them. So, I wanted to make sure she had a fun 5th birthday party! We had her party in the backyard (because seriously I don't think I could have handled Chuck E Cheese, UGH) and 17 kids showed up! I kept it pretty simple, we played Duck Duck Goose, we had bowling set up, face painting, bean bag toss, a pinata, and pin the jewel on the kitty's collar (like pin the tail on the donkey.) I served popcorn and fruitsnacks for snacks and we had lots of water and juice boxes available as it was 96 degrees outside. Luckily my Dad and Debbie were here visiting from Georgia and Dad helped Chris set up two tents and Debbie helped me with decorations. All in all I think Ella had a blast and that's all that matters!!!

The pull string pinata.

Ella getting her face painted

Hello Kitty : )

Hunter, being the sweet big brother that he is, decided that he wanted his face to say Happy Birthday (that's what is on his chin) Ella. He's so cute!

Ella's "Hi Kitty" cake

The girl loves her some cake!

Hey El how old are you?

Ella would "read" each card and funny enough each card said something about her being a sincess (according to her.)

I have never seen a more thankful child when it comes to presents!! This is her swooning over a present : )

Ella has been asking a lot this week for her birthday, you are going to have to wait quite a while baby!

Day 16 - Pumpkins with my pumpkin

2011-10-16T05:06:00.000-07:00

Can I just say that I seriously have the sweetest son ever?!?! Sure Hunter has his moments but he is honestly just the nicest kid! He asked me last Monday if I could go on his fieldtrip to the pumpkin patch with him on Friday. I told him that I didn't think it was going to work out, Daddy had all day training, Nana is out of town, and Ella had therapies. Well those big ol blue eyes got a little watery and he said "oh ok," and I knew I had to figure something out. So we canceled Ella's therapies and my friend agreed to watch Ella for me! I don't get to spend a whole lot of one on one time with Hunter, due to his attention sucking sister, so I was excited to go! Boy, 2nd graders are a funny group, though I have to say they have matured a lot since last year! I pulled up to the school as the kids were lining up to go back in from lunch recess and from across the playground I hear "MAMA!!!" I look over and there is my sweet boy with a giant smile across his face waving frantically! It seriously melts my heart that he still greets me, in front of all of his friends, with a tight hug. I really hope he never grows out of it : )

We had a lot of fun searching for just the perfect pumpkin...and here was the winner!
Here is Hunter and one of his best buddies Madison (from our neighborhood)
Pretending to be annoyed with me (though possible really annoyed with me) if there is one thing Hunter really doesn't care for it's picture taking!
But that's okay, he forgave me : )
I LOVE MY BOY!!!

Day 15 - Ella funny

2011-10-15T05:49:00.000-07:00

Yesterday morning Ella knocked on her bedroom door to be let out, so Hunter went up and opened her door (we have the child proof doorknob thingys on the inside of her room so that Ella does not wander the house in the middle of the night,) while I finished up making his breakfast. As Ella is coming down the stairs I ask

"Ella, did you sleep good?"
E - "No. Big monsters in my bed."
Me - "Oh honey, monsters are pretend. There are no monsters in Ella's room."
E - giving me a look like I am crazy "I say big MUSCLES in my bed," as she flexs her arms, pointing to her muscles.
Me - trying not to laugh "You couldn't sleep because your muscles are too big in your bed?"
E - with her hand on her forehead, shaking her head "that's what I said." Fakes a yawn and walks away.

Man it must be so rough to not be able to sleep because your muscles are too big. LOL.

Day 14 - Duck Duck Goose

2011-10-14T05:09:00.000-07:00

Ella's very favorite game in the whole wide world is Duck Duck Goose. If there is a person sitting on the floor in Ella' vicinity they better be prepared to play it! She has organized many a game including at school, her entire T-ball team, even a photographer at the Ds Conference this past summer! She just LOVES LOVES LOVES it!! So, when planning her birthday party I knew Duck Duck Goose must be a part of it!! Here are the pics of that game (I am splitting up her b-day into a couple of posts so that I don't have like 20 pics on one : )

Day 13 - Spirit Lake

2011-10-13T05:15:00.000-07:00

In July we had our annual day at the lake with our local Down syndrome group, Ds Connections. Nana, Grandpa, Ella and I ventured out there for a fun day of play (Hunter and Daddy were at Boy Scout Camp.)

Catching the frisbee

And throwing it..

A dirty face means you are having fun!

We changed into our bathing suits and went down to the water!! I tried really hard to get a good pic of Ella and Riley. Really hard.....

Back into dry clothes

Miss Hollywood

Love love love this picture!!

A whole day at the lake is tiring!

Day 12 - One of those days

2011-10-12T05:37:00.000-07:00

Some days, though they are very very few and far between, Down syndrome makes me crazy. Yesterday morning started off with me waking Ella up and her being soaked from her armpits to her knees. Soaked with pee. This has been happening more and more lately. After that was cleaned up our morning routine of me chasing her around the house with a spoonful of her medicine mixed with chocolate syrup while goes between covering her mouth with both hands and screaming "I HATE IT MEDICINE!" I get her dressed, do her hair and then Chris takes her to school.

I go to pick her up at school and the special ed teacher says "Ella is having an um...off day." She wasn't answering questions correctly and needed a lot of supervision. (She has done great this whole school year, then yesterday I had to carry her out of the school screaming..) Then we run home and get ready for dance class, which she has been so excited about all week, even practicing her ballet moves. We talk on the way over there about listening to the teacher, staying with the other girls, etc....with her in agreement, "ok mommy!" "yes mommy, I will!" We get there and Ella goes into the class with all the other little girls, and about 2 minutes later the teacher comes out and asks me to come in the class and sit. Great. Well, Miss Ella was not behaving at all. Not at all. She is running around the room, not listening. I grab her and have a little pep talk about doing what the teacher says, and look at those girls all listening and having fun. "Ok mommy!" Only to be a little monster again. Finally I had had enough, I pick her up and we leave dance class 15 minutes early, she is screaming that she wants to stay. She gets so mad in the parking lot she rips her glasses off and throws them down on the ground. We get to the car and I start to buckle her in and low and behold she has peed through yet another diaper, one that has been on just 30 minutes. Sigh. My blood is boiling. I buckle her in to her car seat and tell her just how disappointed I am in her behavior. She says " I sorry mommy," and sticks her thumb in her mouth. We go home and I throw her in the shower, after all she has peed all over herself twice so far. I have had time to calm down. She knows I am angry. So I put on her jammies, even though it is only 1:45 in the afternoon, and she cuddles in my lap. It is really really hard to stay angry at a face like this....

I blame it on Down syndrome, it's just easier to blame that instead of Ella. Maybe that is wrong of me? The complete lack of reasoning with this child at times leaves me furious. Ella's dance class is made up of 6 girls. 5 of them are 3 years old and Ella is 5. They were all behaving, except for Ella. I know I should maybe cut her some slack, but I can't. I have big expectations for this little girl.

I try to think about how her meds could be effecting her. I know her little body is undergoing a lot of changes right now. My mother and I have this theory. For the past several months Ella had been doing awesome. Her behavior was better than ever. Her speech was phenomenal. She was growing like a weed. She was doing AWESOME in school, being a leader, participating in everything without being prompted. And then we found out she was hyperthyroid (Graves Disease,) so my mother and I were like "what if this kind of pepped Ella up?" No, surely this was all just a coincidence right? One of the symptoms of Graves are inability to pay attention and focus. In prior school years Ella has needed to be prompted to participate and was happy to watch her peers. She was more lethargic, needing 12 hours of sleep at night and then taking a nap for a couple of hours and having to be woken up from that. Now that her thyroid levels are normalizing some of those old behaviors are coming back. Just a thought. I know it isn't safe to remain hyperthyroid but wouldn't that be interesting if Ella does so much better when she is in that range??

Then there is the potty training stuff. UGH! We were having some issues which I discussed with the pediatrician at her well child check. Stuff like Ella would go pee in the potty and literally 5 to 10 minutes later she would be soaking we again. She never really initiates to go pee in the potty and yet she has been mostly poop trained since she was 3. Sometimes she really strains to go pee. Anyhow the pediatrician thought it would be a good idea for us to see the urologist. The urologist office called and told the pediatrician's office that we first needed to have an ultrasound done on Ella's kidneys and bladder. The results of that ultrasound say that Ella has a dilated left kidney and a "small bladder volume." It was interesting at the ultrasound because they took measurements of her bladder when it was full, then we had to go to the bathroom and Ella peed in the toilet, then we came back to measure her empty bladder, only her bladder had barely emptied at all. I thought that was interesting, may have something to do with her being 10 minutes after she has already gone? We couldn't get in to see the urologist until November 15th, so of course me being me have in the back of my head what if she can never be potty trained??

I just feel like for the past year my kid has been falling apart medically. First it was her eyes, needing glasses, and then surgery on both eyes, and now in bifocals. Then it was her ears, failing hearing tests (though thankfully that has all worked itself out.) Then there was the weird ankle thing where Ella wouldn't walk for a couple of days, followed closely by the leukemia scare (which thank God it turned out she did not have, but we never figured out her injury.) Now we are dealing with Graves Disease and some bathroom problem. I guess when my child was born with Ds and we went to a million doctors and slowly but surely things got checked out and cleared, I figured we were in the clear. I realize that things could be so much worse, I really do, but now I'm stuck in the mind set that if all this stuff is going on that we didn't really know about what's next??

Okay. Sorry that was a bummer of a post, but this is my place to vent. The truth is I love my girl and I am extremely proud of her, she is amazing and such an inspiration. But dammit she needs a break right now, and frankly so does my brain!

Day 11 - Dancing with Daddy

2011-10-11T05:25:00.000-07:00

While I was cooking dinner on Sunday evening I was listening to some music. I turned around to see this.....

Ella in her Rapunzel dress (over her pj's) dancing with Daddy!

Uh-oh, Ella's "sincess" dress ripped at the seam. Don't worry though, Daddy was quick to fix it : )

Yep, even tough cops sew! (Chris' got this shirt because the COPS crew was filming his patrol team last month!!)

The princess dress is all fixed!

Thanks Daddy!

Day 10 - Ella's first sleep over

2011-10-10T05:40:00.000-07:00

On September 3rd Ella attended her very first friend sleep over! Her sweet friends Xochitl and Isali learned that Ella had never been to a sleepover and insisted that they have one for her! It was the cutest thing ever. The girls all hid and when we came in they all jumped out and yelled "surprise" and Xochitl and Isali ran over and gave Ella big hugs, definitely made this mama tear up! Ella had a blast. The girls had made cupcakes, they played limbo, duck duck goose, Dance Central on the XBox 360 (which was hysterical) dress up and they watched movies. I of course spent the night too because I would never subject Daci (Xochitl and Isali's mom) to a night of Ella alone. And I was right....guess who stayed up the latest? That's right, my Ella. Finally at 2AM I had to basically pin her to the air mattress and hold her still until she fell asleep, only for her to wake up at 8am with the rest of the girls! Ella had a blast and I did too!!!

Hmmm...I think she has an unfair height advantage for limbo!

LOL

How low can you go?

Duck Duck Goose - Ella's favorite game!

Running from Xochitl

Ella LOVED the pink hair!

Ella had a blast dressing up!

Xochitl and Ella

Yep, Hunter was there too. (poor kid that's what happens when your dad works nights...you get stuck at a girls sleepover!) The girls tortured him, it doesn't appear that he minded too much though : )

Watching movies in bed

Day 9 - Hunter's 7th B-day

2011-10-09T07:00:00.000-07:00

Boy oh boy, guess I'm really behind. Hunter turned 7 on March 10th! I cannot believe that my baby boy is 7! I am so lucky to have Hunter as my son, he is a truly incredible boy. He is so smart, sweet, funny and sensitive. This year for his party he decided to have a bowling party. It was lots of fun!!!

The kids before leaving for Hunter's party
Hunter, Mimi and Ella

Rex and Hunter

Hunter's cool cake

M and Hunter

Nice form : )

Nana, Ella and Mimi

Madison (our neighbor) and Hunter

Nana and Hunter

Hunter and Daddy

Day 8 - Lunch Date

2011-10-08T08:00:00.000-07:00

Yesterday Ella and I had a break from our usual Friday, which consists of both speech and OT. So, we scheduled a hot lunch date with our favorite boy!!

When it was time to get ready to go Ella knew exactly what she wanted to wear.

"I wear guitar shirt. Hunter loves it! And my new sketcher boots!" Once I got her all dressed she said "take my picture, put it on the puter (computer.)" Never thought I'd hear those words but was so happy to obey!

Ella's glasses were missing for a few minutes...I found them in the laundry where she had put her PJ's away. Here she is all excited to go to "big boy school," to have lunch with Hunter!

Her new boots....I want some for me!

Hunter was so adorable at school, he ran up to us and picked Ella up and spun her around. He is just the sweetest. His teacher came up to us and bent down to talk to Ella, she said that Hunter was so excited for her to meet his little sister and had been talking about her all week. She asked Ella what her name is and then when we started eating she asked Ella what she was having to which she replied "chips and peanut butter honey sandwich. My favorite!" and the teacher understood every word : ) I just love watching Hunter in his element. He is SO social and it always makes me giggle how all the girls just adore him, LOL!

I mean seriously, who wouldn't love this face???

Day 7 - Talking

2011-10-07T05:43:00.000-07:00

Ella is such a talker these days and most of what she says is said with a lot of sass and humor! I mean the kid seriously cracks me up! She is speaking pretty clear these days (at least in my opinion) and random strangers are now able to understand her. She has come such a long way with her language and I am so happy she is now able to share what is going on inside that head of hers!

A few little language stories...

The kids and I were watching Spooky Buddies the movie last weekend. During one party Hunter kept faking? being scared by making these little noises and grabbing on to me. Ella my big brave 5 year old says..

"don't be scared Hunter, it's just a doggie mobie!"
Then at another part..
" it's just a mobie Hunter. There just costumes for Halloween!"

After her bath one night while I was brushing her hair we had this conversation..

Me : "Ella what do you want to be for Halloween?"
Ella : "I wear costume!"
M : "I know, what do you want to be?"
E : "Hmmm..I know! Hunter be a cop!" (Hunter has been a cop for the past 3 or 4 years)
M :" Yep probably! What do you want to be?"
E: "Hmmm...I don't know. What do you think?"
M :" Well...."
E: "I know! A sincess!!" (Princess)

She loves to try and tell jokes the latest one was this

Ella: "Knock, knock whose there?"
Me: "Um, whose there?"
Ella: "POOP!" Followed by hysterical laughter

When the kids first get to school they have to wash their hands. I'm assuming at some point one of the teachers must have told them this, but as she is turning the little crank on the paper towel dispenser she sings

" One, two, three save a tree!"

She loves to call us all by our full names, first middle and last, you often hear her running through the house yelling at her brother " HUNTER JACOB BODE!!!!"

Every morning she will ask all of us "Did you sleep good?"
At meals she will go around the table and ask each of us "Daddy(insert names), is your food good?" and after every bite she says "Is my face clean?"

Ella loves to play with her baby dolls. For the longest time I would ask her what their names are and they were all named "four." So we worked on picking an actual name and after visiting some friends who have an adorable little girl named Lexi all babies are now named Lexi. Well two weeks ago I was in the shower and she kept coming in the bathroom bugging me. She brought in one of her little babies.

Ella: "Mama, I have a prize (surprise) for you."
Me: "Cool."
Ella: "NO. LOOOOK!!"
I peek my head out of the shower "wow a baby. What is her name?"
Ella: "Baby Sexy." (Sexy = Lexi in Ella speak)
Me: "Aww she's cute."
Ella: "I'll be right back."
Me: " No stay out, I'll be done in a minute."
1 minute later
Ella: "Mama, I have a prize for you."
Me: Peeking my head out. "yay another baby! What is her name?"
Ella: "This Baby Alice. She BIG BABY!"

I about died laughing. Ella's little friend Claire has a baby sister named Alice who is indeed a big baby, like the kind that has all the rolls that you just want to kiss her and squeeze her every time you see her. I guess you'd have to know her : )

I probably have about a thousand other stories like this these are just ones that I have jotted down over the past couple of weeks. I just love talking with my girl, and having actual conversations!!

Day 6 - Summer Days

2011-10-06T05:21:00.000-07:00

We have had a couple of rainy cold days and I am longing for the sun to come back out!! I will try to just relive the warmth through my pictures : )

One of our favorite things to do has always been to swim. Both of my children have been water babies since they were tiny little things. This year Ella did have some issues with the water. In the past she has been my fearless (as in NO safety awareness, scare the crap out of me) child. She would willingly put her entire head under water, and would purposely try to drown herself only for me to pull her up gasping for air and then she'd do it all over again. This year not so much. I really don't know what changed. Ella started showing more sensory type issues around last spring, it was all very strange behavior for her. She would spend the first hour and a half or so at the pool fearful, clinging onto an adult, and it was so not like her. I did wish for some safety awareness but not to that extreme!! By the end of the open swim session she would start jumping off the wall into some one's arms. By the end of the swimming season she started letting go and swimming with her puddle jumper (floaties) on. We had fun none the less though !!!

These first couple of pics are at a friends house! Here is Ella and Riley being goofballs!

Hunter at the top of the slide

We spent a lot of time at the public pools. At $1 a person and kids free on the weekends it is the perfect cheap entertainment, especially when your house doesn't have A/C!

Xochitl and Ella preschool buddies!

Juan, Hunter and Isali

My poor son.....Hunter has the worst skin. He has always been my rashy/ eczema boy but this summer was especially bad with burning. This kid LIVES to be outside, and I can't not let him play outside. I tried so many sunscreens I lost count. I put 100SPF on both kids roughly every hour or so, Ella stays so white she is almost translucent and Hunter burns to a crisp particularly under his eyes. I also make him wear hats, not sure what else to do with him. I'm afraid he is going to have hard leathery skin by the time he is 10!

Juan, Hunter, Xochitl, Isali and Ella - these guys had lots of fun swimming together this summer!

We decided not to do swimming lessons with either of the kids this summer because well, they are time consuming. They are 4 days a week and at times that didn't really work for us. I think it is hilarious that the first summer in 3 or 4 years that Hunter hasn't had lessons he learns how to swim : ) Hunter had a BLAST swimming this year, especially jumping off of the diving board at the public pool!!

I miss summer : (

Day 5 - Princess Ballet

2011-10-05T05:33:00.000-07:00

I tried getting Ella into dance about this time last year. The first class went great, the second not so good, and the third was the last. Ella has been doing so good behavior wise lately and the kid LOVES to dance so I thought we'd give it a second chance. After all it has been over a year. My mom told me about a studio she read about in the paper so I looked it up. They had a class called Princess Ballet and it is for 3 year olds. I wrote the owner of the studio and told them about Ella, that she is 5, has Ds, etc. They said she was welcome to come and try it out. I decided to try out the 3 year old class because lets face it, even though Ella does really well, physically she is at about a 3 year old level. Plus I was thinking that she would be the tallest one and perhaps the leader in the class. Well, yesterday was the first day of class and it wasn't a total disaster : ) Ella for some reason did not want to separate from me, which is NEVER the case, so I had to go sit in on the class which to her gave her permission to leave whatever she was doing and run to me and then run back over and over again. Otherwise she did pretty good, she kept up physically with the other girls. She was definitely not the tallest, as in one out of the 6 little girls was the same size as Ella, everyone else was taller. Oh well. I chatted with the teacher a bit after and she asked great questions about auditory/sensory stuff and how Ella does with that (she said she has a child with Autism so she knows how that stuff can effect kids,) and that she would be glad to have Ella in the class. So, for this month at least Ella is a Princess Ballerina!!

Day 4 - Medical Issue

2011-10-04T04:52:00.000-07:00

I took Ella in for her 5 year well child check up the second week of September. It was a fairly regular appointment, we were surprised to see that Ella had grown 3 inches in 3 months topping out at 39.5 inches and weighs 40lbs. We talked about her potty training issues and that Ella had not been sleeping so good, as in really restless. So, we left the doctors office with a couple of referrals and a script to go get her yearly blood work done. (For those of you who don't know it is recommended for children with Down syndrome to have blood work done each year including a CBC and thyroid levels checked.) We headed straight for the lab and got the blood draw out of the way, and as usual Ella HATED it. I pretty much put it out of my mind and carried on about our business.

Well 4 days later Ella's pediatrician called, the actual doctor herself and not the nurse which is unusual. She said she got Ella's blood test results back and that the thyroid levels were out of whack. Um okay. (It should be noted that when Ella was one she did have a blood test done and her thyroid came back as hypothyroid, but by the time we got the referral and into the endocrinologist 3 months later and they retested she was back to normal and it's been normal ever since.) The doctor said she is testing in the HYPERthyroid levels. What? I have only ever heard of kids with Ds being hypothyroid so it seemed weird to me. She said she was going to call and talk to the pediatric endocrinologist but that he would probably just want her levels rechecked in 3 months or so and if they came back off again then he would see her. She said she'd call in the next couple of days and let me know what he says. So, I get off the phone with her and am really not too worried, no big deal, I'm sure everything will be fine. Then the phone rings again, 5 minutes later. It's the doctor again. She says "the doctor wants to see her on Wednesday," it was Monday. I said "well that's kind of freaking me out," she said "me too, it usually takes a long time to get in there." Great. She tells me to call his office and tell the front staff that the doctor wants to see her on Wednesday. I call and they tell me that that doctor doesn't work on Wednesdays. I tell them my doctor just got off the phone with him and that's what he said. So they go and talk to the doctor and sure enough he wants to see her Wed.

Wednesday rolls around and I am quite nervous. We head down to the children's hospital. The doctor comes in in jeans and a t-shirt (guess it really was his day off.) He is super nice, asks me tons of questions and then examines Ella. After he sits down with me and draws pictures (mean while Ella is running around his office like a crazy person and I'm trying really hard to pay attention) of the thyroid and explains what all it does. He tells me that he really thinks that she has an autoimmune issue called Hashimoto's. That in it's very early stages it will spike into the hyperthyroid levels and then drop down into hypothyroid. He said once it goes down into hypothyroid it is much easier to manage. He also told me about another autoimmune disorder called Graves Disease and said that it is much rarer in small kids and much harder to treat and he didn't think she had it because she didn't have a lot of the symptoms. He prescribed us an Anti-thyroid and explained all the bad side effects it can have, such as liver death and lowering your white blood count thus making you more susceptible to infection, but that she would probably only have to be on that for 4 to 6 weeks because with Hashimoto's the levels will drop and then we treat for the opposite. But we had to go get Ella's blood drawn again this time to check baseline liver enzymes (just in case) and to test her TSI which is another thyroid level. He told me that he expected her TSI to be normal but they check it just in case because that is how they diagnose Graves Disease.

We leave that appointment with a treatment plan that included the anti-thyroid meds for now, blood work every 2 weeks and then come back in 5 weeks. Well, the next Monday rolls around
and the doctor's office calls and says her TSI level is 400 something..I ask what normal is, they say between 1-130something. Shit. I say so does that mean she has Graves? The nurse says well I'm not the doctor, but yes. Shit.

I of course go into a Google frenzy. So here is what I know so far. Only 20-30% of people with Graves respond to the medication, the medicine is not without it's risks but is the best option. The other treatment options are Iodine Radiation and surgery to completely remove the thyroid. No thanks. There are a lot of health complications if you don't treat so that's not really an option. Some of the side effects that we are possible seeing now are sleep issues (they have gone from restlessness to sleeplessness) and fidgeting, excessive thirst, and quick growth. But there are a lot of symptoms that we aren't seeing at all though I think having Ds throws a big curve ball as to what those effects would look like in Ella (that's for another post...) I really think that this was caught right as it was kicking off. The doctor did say though that to have the levels that she did she had to have been this way for at least 5 weeks.

The medicine that Ella is on only comes in tablet form because as the pharmacist said "kids don't usually have to take this medicine." Thanks. Mine DOES. So, I have to crush it up and mix it with something. This has been a real challenge. My child who I've always been convinced does not have taste buds definitely tastes this. It is really really bitter. Currently we are giving her a spoonful of Hershey's chocolate syrup and it's working okay, though when I open her door and let her out in the morning I am greeted with " I HATE it medicine!!!" and she runs and hides. Poor thing. The really good news is that we had her blood retested last week and they came back good, as in moving in the right direction, which means that her body is responding to the medication for the time being, and that is great!!! We go back to the doctor on the 18th, poor guy isn't going to know what hit him after all the questions I plan to dump on him!

SO, the moral of this story is if you have a child with Down syndrome make sure you do the yearly blood work. You never know what is going on inside those little bodies!!!

Here is a picture of my sweet babies, taken on Ella's b-day.

Day 3 - End of T-ball

2011-10-03T05:13:00.000-07:00

So after our experience with soccer I was a bit hesitant to try t-ball when the time came (I had been excited about t-ball all winter long but as the time neared not so much.) I was worried she would act like she did in soccer and that she wouldn't actually play t-ball. But, much to my surprise she took to t-ball right away and loved it. This team was all "typical" girls ages 5 and 6, obviously Ella has Ds and was only 4. She was definitely the smallest, she could barely even pick up the softball with one hand, but she was a part of the team. The girls all loved her, and were kind of in her face all of the time : ) I think part of the reason for success on this team was that Ella is a huge copier, she will copy kids good or bad. So, if ALL of the other little girls were doing something Ella would then go right over and do it too. Is this an example of why inclusion is so important to me, you bet!!!! Now, I'm not saying that the whole season was perfect, not at all. Ella definitely had her moments. She did not like playing out in the field, unless she was playing 1st base or pitcher (which happened to be the ONLY two positions that got any play.) Luckily I was allowed on the field so I spent a lot of time making her stay in her spot while she was bored, which I must say she was not the only girl who was bored out of their minds out there and having trouble staying in their spots. But come time to hit the ball and run the bases Ella was perhaps the most enthusiastic player, it helped that everyone cheered for her often including the opposing team, and if you know Ella you know she loves attention!! So overall I'd say t-ball was a huge success and we can't wait to play again next spring!

Where ever Ella would stop and wait for her turn to bat, girls would just surround her, it was quite cute.

Standing on 2nd base

Daddy helping her get in position

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Team cheer

The team

Funny faces!

Waiting to get her medal

I know it's dark, but the look on her face is so cute!

Ella and her best buddies Xochitl and Isali

She loved her little medal

The team all headed to DQ for their little team party after the game!

Day 2 - Top Soccer

2011-10-02T06:40:00.000-07:00

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This past spring Ella played Top Soccer which is for people with disabilities. Each person has a "buddy" and Ella's buddy was a really sweet 8th grader named Josie. This experience was interesting for me, and by interesting I mean frustrating. It was held in a large indoor soccer arena, the older children/young adults played on one end and the younger ones played on the other end. There was A LOT going on, it was very busy and a bit loud, and there were a lot of people with each player having a buddy (some having 2 buddies) and all the coaches etc. I think Ella was just too overstimulated and there was not a whole lot of soccer being played by her. She spent her time running around the arena (with her buddy in chase), laying down in the soccer net, climbing in rubbermaid containers....you get the idea. I spent my time watching (we weren't allowed in there) and getting angry. I mean seriously kid can't you just do what you are supposed to? My mother liked to keep pointing out that Ella wasn't the only one doing those things, but to me it felt like it. I don't know why I let things like that get to me. I guess because I know that Ella really is a bright girl and she really can be well behaved and so it makes me crazy when she gets all well...crazy. I know that she gets overstimulated and I know that that means that she CAN'T function as she normally does. I really do know that. But it still just drives me nuts, I'm working on it : )

Anyhow, Ella seemed to enjoy it, especially the last day which ended in a pizza party, cookies and a trophy!!!

Enjoying her cookie

Ella and Riley

If these two ever do end up getting married we will have so many good photos to put up at their wedding to show how early they loved each other. LOL!

Ella and her sweet buddy Josie

Ella running through the line to get her trophy giving high fives!

Now she decides to play hard to get : )
Josie made Ella this cute little crown!!

It's that time of the year.....

2011-10-01T06:08:00.000-07:00

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It's October and you know what that means??? It's Down syndrome awareness month!! With that comes the 31 for 21 annual challenge, so that means I will be posting everyday for the entire month (at least that's what is supposed to happen!) I have SOOOO much to post, mostly pictures, and I am hoping to get caught up. These will be in no particular order!

I figured I'd start off with the first day of school. The kids started school on Wednesday, September 7th and amazingly it was 91 degrees that day! Hunter is in 2nd grade this year, which just does not seem possible. 1st grade was rough for him, he got in trouble a lot for talking (and he really is a really good kid), on his report cards he would get 4's for academics (the highest you can get) and 1's (the lowest) for effort, he was BORED. So far this year is going really well. I spoke to his teacher at curriculum night this past week and she said she LOVES Hunter and that he is so smart and he has spunk and that she loves a boy with spunk! Seems to be a great fit!

Ella is in her 3rd year of preschool, integrated with "typical" kids. Looking back I don't see that I ever updated this as far as her schooling goes but we fought to have Ella stay in preschool this year. Ella turned 5 on August 30th and the program that she is integrated into says that no child can be 5 before September 1st, so they wanted to send her to Kindergarten. I objected to that for oh so many reasons and it all seemed so obvious to me that she should stay in preschool. Long story short they made a special exception and she was able to stay at her school but would not be able to keep the teachers that we had had for the prior 2 years that were SO good with Ella. I was a bit nervous going into this year, we really really loved her prior teachers and I was so afraid that the new ones might not be a good fit, may not understand what Ella says etc etc. But I am so very happy and relieved to say that Ella is doing fantastic this year. She has transitioned into this class with no problems. Her teachers reported the first week that Ella was a leader in class, she is paying attention, participating, having conversations with her peers (in which they are understanding her) and that she is "so good!" Phew! I knew before hand that I made the right choice to keep her in pre-k but this really made me confident in that decision!!

Here are my babies on their 1st day!

My excited and confident pre-schooler

Poor Hunter....I didn't realize it at the time but I can see it now his little eyes are swollen. He has been having allergy issues but perhaps even worse the skin under his eyes has stayed consistently burnt all summer.

The big 2nd grader!

When I was uploading this year's first day of school pics I noticed that two of the shots of Ella walking into school look a lot like ones I took on her first day 2 years ago! So here is a little comparison : )

2 years ago - her first day of public preschool

This year....she grew some legs!
2 years ago
This year
In her classroom

Ella is 5 today!

2011-08-30T17:44:00.000-07:00

Today my sweet baby is 5. It is so hard to believe. I'm a bit sad, 5 seems so old. But, when I look at all that she has accomplished I am so proud of her first 5 years and can't wait to see what this next year brings! Happy birthday to my Amazing Ella Grace!!!

Ella at 1 day old

1st Birthday

2nd Birthday

3rd Birthday

4th Birthday

I am 5 today!!!!

She is looking a little rough today....she had a little fall and her face and the road collided : )

Hippotherapy

2011-08-18T14:47:00.000-07:00

Oh man I am so so so behind on blogging, as usual! I have SO many pictures from this spring/summer that I want to share, including from the National Down Syndrome Conference (which was a blast!!) But, I think I will start with pictures of the kids on horses because I know my family, those who don't have Facebook (gasp!) will love them!!

Ella did Hippotherapy this summer and the instructor allowed Hunter to participate too! Both of the kids absolutely LOVED it! I liked it because Ella was working hard without knowing it : ) Hunter did so well that by the end of the session he was taken off the lead rope and doing it all on his own, including going around poles!

Here are pics from their first day!

Ella before we left the house....so excited!

and who wouldn't be...especially if you got to wear boots like these!

The kids all had to learn how to groom the horses and did this at the begining of each day.

Cleaning out the hoofs.

Ella riding on Sugar the therapy horse!

Hunter on top of Buddy!

Ella yelling "I DID IT!!" This picture by the way was selected for the NY Buddy Walk and will be shown on the big screen in Times Square in September!

Sitting up nice and tall, working out those tummy muscles!

They all kept saying that Hunter is such "a natural!"

This night as I was putting them to bed Hunter informed me that he wants a "real horse" and it can live in our backyard and he will take care of it and ride it everyday. Ha!

Ella loved it every time they rode next to Bubba! And Hunter was of course so sweet to her : )

We are done now for the summer session, waiting to hear the day and time for the fall decision before we decide if we will be able to go!

T-ball videos

2011-06-21T22:19:00.000-07:00

I took some video of Ella at her t-ball game Tuesday night! It had already been a long day starting with Hunter's piano lesson and then off to Hippotherapy (horse therapy) for an hour and a half of working with and riding the horses in the hot sun. Ella really does like t-ball, well the hitting and running the bases part and not so much the standing in the field part, and I'm glad that we signed her up! The girls on her team are all really nice to her. You will notice in the pics and video that Ella does not have her glasses on. Apparently sunscreen plus heat plus running around means that Ella's glasses will NOT stay up and will make her very angry. Not sure how we will resolve that one.....

Tonight we had a very cute little boy come to watch Ella play ball.... Beau!!! His family just moved up here and we are happy they did!!!<

Here are two little videos of her during the game!

Photo and video editing at www.OneTrueMedia.com

Ella funnies and t-ball pics

2011-06-13T02:23:00.000-07:00

I've had this sitting as a draft since the end of May and just kept adding to it so I suppose it's time to press Publish Post : ) Ella is talking like crazy these days, I cannot believe how well she is doing in that area all of a sudden. And let me tell you, the girl is FUNNY. I do not know where she comes up with some of the things she says. Here are a few of her "stories."

I was sitting with Ella while she was eating her half "peanut butter honey" sandwich for lunch after school, and I told her I was glad she had a good day at school and she says "yeah Stephanie (I can't even pretend to write her name like Ella pronounces it) naughty." Stephanie is Ella's amazing Para at school. I said "Stephanie was naughty?" "Yeah," she says. I asked her what Stephanie did that was naughty and Ella says "TO ME!" Stephanie was naughty to you? "Yeah! Make me potty 2 times." She made you try to go potty 2 times? "Yeah Stephanie naughty."

On a different day...

Ella is sitting on the potty and I tell her to push. Push like you have to toot and she says "No toot. I fart," I must have smiled (though I was trying not to) because she looks at me and smirks and says " I fart. I fart. I fart." Well just about then Chris comes in to tell us goodbye because he was heading into work for the night and Ella tells him "Daddy I fart," Nice he says. Then he gives Ella a quick kiss on the head and says bye. "Daddy huggy!" she says holding her arms up for a hug. So he leans down and gives her a quick hug and she says "more hug!" So he bends down gives her another quick hug and says "you stink." Ella looks at him, waves her finger at him and says "CHRIS get outta my face." I of course start laughing hysterically (I know totally inappropriate but seriously the kid is funny,) and she looks at me and says "MOM no laugh. Relax."

This past Monday..

We were at the eye doctor getting her glasses fixed....and the nurse walked out of the room. I was bending down talking to Ella and saw that she had brown stuff on her shirt. I asked her if she painted at school. She said "yes I paint brown." I asked her what she painted, "a castle" she replies. I said a castle? She says "yes. Ella the princess. Hunter the king. And you da frog mommy. " Seriously, I have to be the frog??? She repeated this over and over all night long, but once we got home she added Daddy in as a prince, but me....I'm still just da frog.

On Tuesday we were at Fred Meyer and I was waiting for the bakery lady to finish cutting our bread and we were standing right in front of the cookies and cakes. Ella starts yelling to the bakery worker "hey girl! Girl! Hey Girl! Girl I want a cookie!!" I said, no Ella you can't have a cookie we are going to go home and have dinner. Ella says "okay girl (pretending that the bakery worker is actually talking to her.) Girl said yes cookie." Nice try. She actually does that a lot, asks me something and if I say no she will say "daddy says yes."

If you tell her to do anything Ella will call you a "bossy hossy!" Last night I was telling her that she needed to be a big girl and a good listener and she said "no mom I'm small." I said well small girls need to be good listeners too, she said "no mom I sincess (princess)," I said EVEN princess' have to be good girls and she says "no mom I a boy."

We've haven't been going to private therapies for a few months now, and are about to start back now that Ella is out of school. I'm hoping that we can figure out a way to make Ella speak louder (though I am sure that I will regret that) because she has a very very soft voice. The poor kid will try to talk to me in the van and even though she sits right behind me and I turn the radio off I still can not hear her. Luckily most of the time Hunter is there to interpret for me, but when he is not I feel so bad cause I can't hear her. She can scream, though it's not very loud, but she has to be extremely pissed off (mostly at me) and even when she does her voice quality is not very good so she is hard to understand.

Ella is playing t-ball on a "typical" team. It is um....interesting. She loves to hit the ball and loves running the bases but is not so patient when playing in the field. I will say though that during practice they do stand in the field a lot and there is a lot of down time while the coach hits to each girl. So, hopefully when the games start this week the pace will pick up a little. It is so cute to watch her run the bases, those legs are SO short. Yesterday the coach had Ella be the line leader and run the bases and told the other girls that they were not allowed to pass her. The giant smile on Ella's face and the giggles coming out had to be about the cutest thing ever. All of the girls are really good with Ella. The first practice had me worried though. They all kept asking if she was really on the team and how old she was because she is so small. At one point one of the little girls asked Ella's friend from preschool if Ella was REALLY on the team and her little friend Xochitl said "Yes! And she is my friend!!!" Um, yeah I LOVE that girl : ) Anyhow the girls all like to sit next to Ella while they are waiting in line and they all giggle together and tickle each other....it's is just so great. Here are some pics from the first practice!

Waiting in line to bat

In line to run

Ready stance

Xochitl and Ella ready to bat!

Running the bases!

Let's help this family!!!!

2011-05-31T16:14:00.000-07:00

I recieved an email today from a lady who has been following my blog for a year and a half. This family has a little cutie named Hope who has Down syndrome and now want to add to their family by adopting another little girl with Down syndrome through Reece's Rainbow. They are having a hard time fundraising and asked for help getting their names out there. So, lets help them raise money and bring home their little girl. Please visit their adoption blog, Adding an Angel, and consider donating or sharing their blog with others. Thank you so much!

I'll leave you with this sneak peek of Ella's first t-ball practice.....guess which one is Ella : )

My little soccer girl

2011-04-21T13:49:00.000-07:00

Last night was the start of TOPSoccer, a league for children with special needs. Ella was SOOOO excited. On the way there Ella says to me "I big kid now. I play soccer!" It is finally her turn to play soccer after watching her brother play for 3 years now while she is stuck in a stroller.

When we walked into the soccer center she took off running and kicking her ball from one end to the other, over and over again. She would kick it into the wall and leave her ball and come running over to us and say "Mommy, Nana, Andmom (Grandmom) I made it!" giving us all high fives and then running back to her ball and doing it over again. After about 20 minutes the head coach then says "it's time to start." Uh-oh. I knew Ella had to be getting worn out and she was. Every once in awhile she would put her hands up to her buddy (a high school girl named Josie who was paired up with Ella, poor Josie : ) and Josie would pick her up and Ella would stick her thumb in her mouth.

She did really well for the most part, only escaped twice, but always with Josie on her heels. Ella's real problem is that she likes to do what she wants when she wants, and by likes I mean she DOES what she wants when SHE wants! We are trying really hard to find ways to override Ella's impulsiveness but she is very hard to reason with when she is in that mode. But she really did do well, and most of all she had a BLAST! Even after dinner and at bedtime she was still telling us she is "excited" to play soccer and that she is a "big kid now!"

I'm actually quite impressed with Ella's running and her ability to run and kick the ball in a dribbling fashion. She looked good out there!!! I'm proud of my kid!!!

The quality of these pics aren't great due to lighting and constant movement.

Running and kicking

A typical Ella face....I'm sure she was either telling me to "zip mouth" or "get back." Ahh gotta love that she uses her words right???

more running

Ella and her buddy Josie. I bet Josie was REALLY tired last night!

Running to us to get her high fives, she was doing some sort of bowling/soccer game with these cones.

Bossing Josie around.

Head, shoulders, knees and toes with Riley! They looked so tiny out there!

Ella and Riley

This Saturday ought to be hard when I stick her back in the stroller for Bubba's soccer game : )

Can't wait until next Wednesday!

Kind words...

2011-04-17T13:21:00.000-07:00

Sometimes I am just surprised by things people say. Typically I am surprised by the ignorant things people say....but today it's the kind things.

I have been planning on signing Ella up for t-ball with the girls softball league here. It's not a league that's just for kids with special needs (we have one but the kids have to be 5) it's just a league. My thinking behind this was that quite frankly all 4 year olds suck at t-ball. Okay maybe suck is a strong word, I just mean that none of them seem to have the attention span to stand in the field, none of them can really throw the ball where they aim, a lot of them run the wrong way to the bases etc. So, I figure, Ella can join in with relatively no problems! I went out and bought Ella a little glittery pink and purple glove and a pink bat in anticipation.

I go to fill out the registration online the other day and it says for girls 5-6. Ella doesn't turn 5 until August 30th, after the June/July season. I was seriously bummed.

When I was a young girl softball was my life, I even made Allstars in T-ball : ) But really, I lived for softball. I got to play on the Varsity team in high school as a Freshman but blew out my knee before the sophomore season. It took 5 surgeries to fix my knee, the last one being the week after I graduated high school, so needless to say that ended my softball career. I did attempt to play softball 2 summers ago only to figure out that I was no where near as good as I once had been and my body was also no where near what it had been and I broke my leg playing : ) Anyhow, when I had the ultrasound with Ella that ruled out Down syndrome (yes that's right RULED OUT Down syndrome, ha!) they informed me that my baby was a girl. Among the many many dreams I had for my daughter one was that she would become a softball star!

When I found out that Ella had Down syndrome after she was born softball just seemed to be another door that closed. Fastforward 4 1/2 years and I realize that she will not be the star of the team (not in the best player sense, but she will be a star all of her own I am sure,) but I think that she will really enjoy playing, and I know that I will REALLY enjoy watching her play!

So, back to registration. 5 and 6 years old. Dang! I decided to send the league a quick email just saying that my daughter will not be 5 until the end of the summer, any chance you will let her play? They write back "We would love to have her play." Awesome!!! But then I get worried, they gave me special permission for my 4 year old to play and I failed to mention that she is really really small, a little weaker, doesn't talk as well, and will need some assistance staying on task. So I write back "So, I suppose I should have put this in there too...my daughter has Down syndrome. I will be at every practice and game to assist. Still okay?" I'm not sure what I was expecting to get in response...either an email saying "as long as you are there with her", or maybe even "given the circumstances maybe she should wait until next year." But instead I get this email today.

" Fantastic. I am sure she will have much to teach all who come to know her. We look forward to a fun season with her."

Seriously??? Totally made me cry. I can't wait for my baby to play t-ball and I am extra excited to play on a league who has this great attitude!!!!

This Wednesday Ella will begin TOPSoccer. She will playing with a couple of her buddies, including her boyfriend Riley : ) I was just looking for a recent pic of these two but I found these cute ones from 2 summers ago. These two are SO cute together and truly are good friends!!

So far behind...

2011-04-09T20:09:00.000-07:00

I feel like my blog has been severely neglected. I have SO many pictures that I haven't put on here, dating all the way back to last summer. I would like to say that I am going to be really good and get all caught up, but realistically that's not going to happen : )

Hunter had his 7th birthday on March 10th. I can NOT believe that my baby boy is 7, I mean seriously where does the time go???? I will have t o do a post all of his own very soon!!! Today was the first soccer game of the season and kicks off a VERY busy couple of months for us. This year Hunter's baseball and soccer overlap a lot, Mondays he has Boy Scouts, Wednesday he has baseball practice, Thursdays he has soccer practice and a baseball game, and Saturdays he has both soccer and baseball games. I'm tired just thinking about it all. We will also be heading in for an orthodontic consult in a little over a week, I don't think my bank account is at all ready for this, but the kid has two teeth that are coming in behind the rest because there is no room, so we'll do what we got to do!

Ella is doing great as well. We have made some changes around here lately.....I have pulled her out of private therapies until school gets out. We were both exhausted and her behavior was not so great which in turn made my patiences not existent. I really debated it, but I think this is what we need right now. She of course still gets therapy at school so I'm really not too worried about it. Ella will be starting soccer soon, she will be playing on a league for children with disabilities. I'm really looking forward to it, it will be on Wednesdays for 1 hour for 6 weeks. Her eyes seem to be doing really good. She still has some "residual crossing" when her glasses are off, although that seems to be less and less as time goes by, and we go back to the eye doctor in May to officially see how the surgery went and if her prescription changed. Currently her glasses are broken, she sent them down the slide at a friends house yesterday and one of the nose pads fell off. I of course can't get them fixed until Monday. I'm thinking summer might be rough on the glasses. I'm thinking about getting a spare pair after her appt in May but DANG they are expensive!!

Well, that's if for now.....I hope to be better about blogging : ) I will leave you with some pictures from Ella's swim party at school last week.....her teacher is so awesome and brave!!!

What I go through....

2011-03-21T19:57:00.001-07:00

....in an attempt to get a half way decent picture of my children!

me: "Ella look at me."

"no, not at bubba, at me."

"okay, now OPEN your eyes."

**sigh** "forget it, do whatever you want."

Hunter: "FUNNY FACE!!!"

Well, Happy World Down Syndrome Day anyhow : ) Hunter asked to wear his Buddy Walk shirt "the one with Ella's face on it," to school today after hearing me tell Chris on Sunday that it would be Ds day tomorrow. I asked him if he was sure he wanted to wear that one, he could always just wear the one that says Buddy Walk. (He is very against anything that may be girly or that he could possibly get made fun of in, and I thought perhaps wearing a picture of a girl on your shirt could lead to that.) Hunter says "well all of my friends think that my sister is really cute," I said okay...but if anyone asks you why you are wearing it you can tell them that it's World Down Syndrome Day and that your sister has Down syndrome. He says "Uh, yeah. They all know that already." Oh...didn't realize it was a topic of conversation amongst 1st graders : ) I sure love my boy!!!

Today I am grateful for that little extra something in my life!!!

Quick update

2011-03-10T16:43:00.000-08:00

Just a quick post to let everyone know that Ella's surgery on her eyes this morning went well. We are home and she is resting and I am holding her arms down. She got to one of her eyes earlier and it made blood poor out of her eye, it was gross and scary looking. Ella is a bit aggitated, tried to get up and walk and kept falling. I don't know if that is from her eye's being blurry/and or double vision as they said could happen for the first week to two weeks or from left over anesthisia. Either way she looks pitiful. But as is her style she is a brave, strong girl!

Also, I posted this on Facebook but have to share, yesterday I was trying to prepare Ella for the surgery and said to her "Ella we have to go see the doctor very early tomorrow morning," to which Ella replies "aww dammit." My thoughts exactly. Gotta love it!

Happy happy happy birthday to my Hunter. You are the most amazing son a mom could ever wish for!!

An injury, a scare, school and surgery...

2011-03-08T13:40:00.000-08:00

We have been pretty busy around here! Two and a half weeks ago Ella hurt her foot. Hunter set up his own little obstacle course in the living room and of course Ella couldn't resist doing what big brother does. Hunter was running and jumping over their little chair/couches, so Ella would run up to it, stop, and then try to kind of leap over it. They've done it a million times. So Ella leaps over and falls onto her left foot and starts bawling. (Let me quickly remind you that this child has the highest pain tolerance....so high that it is down right scary.) I figure she most have rolled her ankle a bit. Well, four hours later she is still saying it hurts and when I try to have her stand up she crumples to the ground crying and screaming. So, hubby comes home from work to stay with the boy and off Ella and I go to the ER.

The doctor that we see at the ER tries to convince me that Ella is faking her injury, because it is not swollen or bruised and when she is sitting it doesn't seem like she is in any pain at all. Despite my attempts to explain Ella's freaky pain tolerance issues and informing her that if Ella was fine her little room would be destroyed and Ella would be roaming the halls, the doctor still felt like everything was fine. I convinced them to at least do an X-ray. The doctor asks Ella where it hurts and she points to her big toe, so an X-ray is performed on the top of Ella's foot. Not her ankle, just the top of her foot, because that is where my 4 year old pointed. OK. So that came back fine and the doctor says to me "don't worry, parent's bring their kids into the ER all the time because they won't do stuff for them at home." As if Ella would play a game for 4 hours, a game mind you that has no reward. Fine. We go home. The next day Ella does not walk AT ALL. She literally crawls around the house the entire day. The day after that Ella crawls around until about 6pm then takes a few steps, limping and saying owie. Then on Thursday she is walking pretty well, with a noticeable limp, but walking, (Thursday ended up being a snow day so she didn't go to school.)

The following Tuesday I go to pick Ella up from school and the teachers informed me that Ella had been limping and tripping and falling all day. I went back and talked to the PT and she and I both felt that Ella's foot should be checked out again. Her foot was a little puffy. So Wednesday I take Ella into her pediatricians office. They order STAT X-rays of her tib/fib, ankle and foot. Five hours later the doctor calls me. She asks me how Ella's foot is and I tell her she is still limping and tripping. She says that the X-rays all look good but she consulted with some of the other pediatricians in the practice and they all think that Ella should go have some blood work done. Um, what? She says to rule stuff out. I say Cancer? She says "yes, Leukemia." Insert nausea and sobbing. Then she says "can you get her to the lab like now?" I get Ella to the lab rather quickly and look at the script the doctor sent over and it says STAT STAT STAT on it, which just added to my anxiety. We left the lab at 3:30 and I just knew that we wouldn't hear anything back that night, and therefore knew that I would not be sleeping at all. Surprise surprise the phone rings at 6:30, it's the doctor's office. I'm thinking this canNOT be good. The nurse says that 2 of Ella's tests came back and her numbers could not be more NORMAL!!! I cannot tell you how fabulous that felt. Phew. We still didn't know what was going on with her foot but I didn't really care because she didn't have cancer!! We decide to try wrapping Ella's ankle for a while and see if that helps, and it does, so Ella's PT called downtown and looks like we are getting more orthodics next week so that we avoid another injury.

Last Thursday was our big meeting with the school to discuss Ella's placement for next year. The school had told me that Ella could not stay in preschool next year, that because she would be 5 before Sept 1st (her b-day is Aug 30th) she would not be able to go back into her integrated preschool program and would instead have to move on to Kindergarten. Well, that is most definitely not what I wanted for Ella. I have so many reasons why I wanted her to stay in preschool, but to me it was just so logical that a child her size, with her birthday, and with her delays that she should not move on to Kindergarten. Anyhow, so we've been gearing up for this big battle with the school district and it was the day of the big meeting and again I was so nervous. We get to the meeting and there are 12 people there, 8 from the school, Chris my mom and I and Ella's private speech therapist. About two minutes in they inform me that they got special authorization from the state to keep Ella in the integrated preschool next year. SO RELIEVED!!! Phew! She will need to change teachers because they think she needs some change (she's been in the same class for 2 years) and I think I'm okay with that. I absolutely LOVE her teachers and paraeducator that she has now, they really push her but also love her, but I guess I see their point and I am okay with change (sort of.)

Now we move onto surgery. We are scheduled to check in for eye surgery this Thursday, March 10th, at 7am. She is having both of her eyes operated on to correct her crossing. I am nervous of course but know that she really needs it because her eyes are bad!

Speaking of March 10th, my baby boy turns 7 that day. I cannot believe my little guy will be 7, just does not seem possible. We had his birthday party this past Saturday at the bowling ally, he had 15 kids and his Mimi and Nana there, he sure had a great time!!! I have tons of pics from that that I will post later!!! For now I will just leave you with these from right before the party!

Poor squinty light sensitive kids : )

Princess Cowgirl Pirate

2011-02-06T11:26:00.000-08:00

This is my favorite look, the singing princess cowgirl pirate!

Ella is really into dressing up these days......well undressing and then adding only what she likes : ) Her imagination is really fun to watch. The other day she was pretending that her sweatshirt was her baby. Never mind the kid has like 15 baby dolls. But her sweatshirt was naughty and went to timeout for spitting, had a fever, was hungry, and took a nap. It was quite funny watching her listen to the sweatshirts heart and feed it. Crazy kid. Hunter was sick last weekend with a fever so several times a day Ella comes to check our fevers, tells us to cry and then gives us a shot. Such a good little doctor!

Drinking "hot chocolate." I am so very happy to be done with putting a patch on her eye. As you can see her glasses did NOT work with the patch and I really think the poor girl could not see during patch time. But no more patch means that we are heading to surgery on March 10th (Hunter's birthday.) She will have one of the muscles behind both eyes tightened. I was trying to listen to the doctor explain the surgery and a little girl I know was being a complete terror, like running around with the remote that changes the eye chart on the monitor and clicking away, so I didn't get much info just signed all the consents. The doctor did say at one point "we do not take the eye out of the socket." I just stopped chasing Ella and laughed and said "we'll that's good." She said you would be surprised what some people asked. Anyhow I know that in the world of surgeries this isn't a huge deal but it's my babies eyes. You know the things you use to see out of...... The doctor also said that Ella's prescription will probably improve after surgery but that she will still need glasses and probably always will because of her astigmatism. Bummer. Ella does great with her glasses, she really does, but they still drive me crazy. They are always dirty and I feel like I am constantly telling her to be careful so that she doesn't break them. She has fallen several times this week alone and jammed her glasses into her face, or knocked them off to the side of her face. She is sporting a bit of a shiner from falling last night, her glasses went off to the side and one of the nose pieces dug into the outer corner of her eye. But like with everything else Ella just accepts it for what it is and carries on being Ella.

Ella has been telling us about 4-5 times a day that she has to go potty and then goes pee in the potty. She has been poop trained for over a year and a half. So while this is really great, I would much rather do it this way when it is her idea, I have my concerns. For example, for as long as I can remember I have put her on the toilet before her bath and she will pee, but as soon as she gets in the water she pees again. So, can she not get it all out at once? Does she just pee a little all day long? If that is the case than it will be really hard to train. I think she is going to be the kind of kid that has accidents for a long time. So then do you keep her in pullups forever, or some sort of training pants? I, of course, do not want her teased for peeing her pants.

In other news I finally got Hunter to get a haircut. FINALLY. He was in one of his "I want my hair to be long," phases. He finally told me that he was growing it out in anticipation of crazy hair day at school because he wanted a long mohawk. So I told him we could get a spiky haircut and if and when there is a crazy hair day we can paint his hair blue.

I would like to know where my little boy went. He looks so much older to me now that I can see his face again. Hunter will be turning 7 soon and I am quite depressed about it. I wish I could freeze my kids right where they are (okay, Ella really needs to learn how to behave and then I will freeze her.)

Win an IPad!!!

2011-02-05T11:44:00.000-08:00

Grab This!

I've been reading the blog Enjoy the Journey for a long time. I love looking at the pictures and reading the stories of beautiful Bree and her sweet sisters! This family is now in the process of adopting Kareen, an orphan in Eastern Europe who has Down syndrome. Please help them bring her home!!! From their blog.......

iPad Giveaway for KAREEN!

Kareen is a 4 year old little girl with Down syndrome who was given up at birth and has lived in an orphanage in Eastern Europe ever since. In her country a child with special needs is only held in an orphanage until the age of 4 or 5 and is then transferred to an institution where conditions are bleak and offer little hope for living a fulfilling life. Kareen's story has touched our family, and we are committed to bring her home. The cost of international adoption is very high, and we could use your help!Donate now through Saturday, February 5th, when one lucky person will receive a Brand New 16GB Wi-Fi iPad
For every $10 donated, you will be entered into a drawing for the iPad (i.e. $50 equals 5 entries). Also, if after donating, you advertise this giveaway on your blog or facebook, you will get an additional entry. Simply leave me a comment with your name and the link to your post.
Ways to Donate:

•Go to www.kareensjourneyhome.blogspot.com and click the “Chip in “ button
•Bring a check or cash by our home. You may email me at keciajcox@msn.com for our address.
•Tax deductible donation (must leave me a comment with your name and donation amount to be entered into the giveaway, since this site is kept confidential) http://reecesrainbow.org/sponsorcox
Every dollar helps, and brings us closer to having our little angel home safe.
Thanks for your Support!!!

- Kris & Kecia Cox

Follow their journey here...

Eye's and more....

2011-01-20T15:47:00.001-08:00

EYES
We went to the eye doctor, AGAIN, on Jan 4th. Well, Ella's eyes are crossing even worse, the left one slightly worse than the right. So it looks like surgery is in our immediate future. For the whole month of December Ella had some tearing issue going on with here eyes. She started off with just clear tears coming out of her right eye for about two weeks then had the nastiest greenist gunk coming out of both eyes. So we got on antibiotics because she had a sinus infection. As soon as the antibiotics were done the clear tears picked back up. The eye doctor said that she wanted to try some steroid drops in Ella's eyes and see if that helps the tearing before she does the surgery for crossing because obviously if she needs her tear ducts opened up she could do them at the same time. In the mean time she said we could give patching a try, so we are to patch her right eye for 2 hours everyday. Yeah, this isn't easy. It's easy in the fact that she will leave it on fine, but she cries when I say it's time to put it on, she runs into things while it is on and just seems sad and then cries again when it's time to take it off. Her glasses do not fit over the stupid patch so I'm sure she really can't see with the dumb thing on. What I have noticed since patching is that now her right eye crosses worse than her left......so does that mean the left is getting better or the right is getting worse??? I don't know. So back we go on Feb 1st to figure it all out. Hunter on the other hand is all done patching, it worked and we are done! Hooray!

SCHOOL

Kindergarten transition meetings are coming up soon. I have been stressing myself out about all of this. Ella will turn 5 on August 30th and because she turns 5 before the cutoff date of August 31st she is not allowed to return to her preschool class. She is currently integrated with an ECAEP class (kind of like Headstart, federally funded) and her class consists of 14 "typical" kids and 4 kids with varying needs. Apparently Ella has to follow ECAEP rules as far as age goes, even though we do not qualify for the ECAEP program. So because of 1 day, 4 hours if you want to be specific, Ella is being pushed on to Kindergarten. I have several concerns about Ella moving on to Kindergarten, that I won't specifically get into, including her safety, her size, and her maturity. I will say that had Hunter's birthday been on August 30th I would not have sent him to Kindergarten, and he has no special needs. So the school district wants to send my child, who is the size of a 2 year old, who has the language of a 2 year old (she was just re-evaled), isn't potty trained, and oh yeah has Down syndrome on to Kindergarten. I don't know, I just don't feel good about it at all. I see how much Ella has changed, how much better she is doing, from last years preschool to this year and think that one more year in pre-k and she would really be so much more ready for Kindergarten. So, I have been exploring my options and went and talked to the owner of the Montessori preschool that Hunter attended when he was 4 and they are willing to take Ella. I am going to go ahead and send her 3 mornings a week during the summer, which I think will be really good for her. I love that school! I really don't want to pay for school next school year, and am still going to try to fight for Ella to remain where she is, but it is definitely an option. It's all just exhausting and stressing me out. My opinion seems so logical to me BUT apparently not to the school district. We'll see where this goes.

FUN

Ella has been invited to a playdate with one of her classmates (typical classmates : ) so we will be going to her friends house on Sunday to play. I am SOOOO excited, oh yeah and Ella is too!

On MLK Day we went bowling with Hurricane Riley and his family! I was a little worried about how much time we would spend chasing Ella and Riley down the lane and about how many little fingers and toes would be crushed by bowling balls but the kids did fantastic!!!!! All 4 kids, the big boys, and the two littles had a blast! Ella would push the ball and stand waiting to see what happened, if she would only know over one she would put her hand to her forehead and say "aww man," but if she hit more she would throw her arms up and celebrate. Riley was hysterical, he celebrated no matter what jumping up and down all the way back. A fun time was had by all!!!!

"Hooray!" notice there is only one pin left up!

This is the giant smile that we saw every single time!

Crazy buddies!

I realize this is a crappy quality photo but I love it anyway : )

Make video montages at www.OneTrueMedia.com

Christmas 2010 pictures Part 1

2010-12-27T18:50:00.001-08:00

We had a wonderful Christmas this year and I of course took a ton of pictures.....

So here goes round 1 : )

But first a little video of Ella singing on Christmas Eve. I caught her singing We Wish you a Merry Christmas!

Photo and video editing at www.OneTrueMedia.com

Christmas Eve

Cookies for Santa

Ella was very upset that the cookies were for Santa and NOT for her!

Hunter's note

Santa came!

These are always my favorite Christmas pics.....their sweet sleepy faces, all excited waiting to go see what Santa brought!

A Nintendo Ds!!

and a lego clock!

Stay tuned for round 2

Candle for Carly

2010-12-25T22:12:00.001-08:00

As I tucked my babies in on Christmas Eve I thought of Joany Risner-George and how much she must be missing Carly. I cannot imagine losing a child and my heart goes out to Joany and all of Carly's family. Today we lit a candle for Carly......hugs to the George Family

Merry Christmas

2010-12-24T14:09:00.001-08:00

Wishing you health, peace and happiness

We wish you a very Merry Christmas and a very Happy New Year!

Love,
Chris, Kacey, Hunter and Ella

Sending you lots of love!!!

Ella's Christmas show at school

2010-12-19T21:13:00.001-08:00

Last Thursday was Ella's class party and Christmas show at her preschool and I got to spend the day with her. Yes, I am a bad mom and forgot her glasses....we had stayed out late the night before at my mom's house for her birthday and so I had taken her glasses off in the van. The next morning we took the car and I had thought I left the glasses at my mom's but they were in the van, oh well.

Here she is coloring with a friend
After she "signed in" by tracing her name

Here she is when they first walked into the gym, looking a little concerned

Here is when she spotted us, which threatened to end the performance for her. She tried running to us but her teacher put her back and she actually stayed!!!

I can't believe how much bigger she looks this year compared to last year. She is still the shortest but it isn't as big of a difference this year. The little guy to her right is nearly a year younger that her and is the 2nd shortest in class : ) The girl behind her is her best buddy this year!

Ella and her best friend who brought her a present : )

Seriously....can't she just give me one good pic

The little pink necklace is from her friend. The friend's mom said they were at the store and the little girl spotted this and told her mom she wanted to get this for Ella for Christmas. So so so sweet! Ella loves the necklace, just hates having to stand still for pictures!

And here is the video of Ella's little Christmas performance. I of course cried as usual. I'm pretty sure that I will always be blown away by how well Ella does!!!!

Make an on-line slide show at www.OneTrueMedia.com

Photo and video editing at www.OneTrueMedia.com

Hunter had his Christmas show the week before and to my amazement they sang actual Christmas songs like Away in a Manger, Angels we Have Heard on High, Silent Night, with the actual words in a public school!! Pretty cool. Unfortunately my videos of his night are so shakey, I had to hold the camera above my head the whole time and the videos move so much they make you want to barf to watch them. I do have one little part, which was my favorite, of him signing the words to Silent Night (while lip singing as well)!

Here is my handsome guy before we left for the show.

He's got moves : )

Here he is in his classroom after the big show.

Photo and video editing at www.OneTrueMedia.com

More Dancing!!!

2010-11-29T21:01:00.001-08:00

My little girl LOVES to dance (just not in a class and not when she is told to, on her own terms!!!) This past Friday my parents and grandparents (who are visiting from Georgia) came to our house to help decorate our Christmas tree, which looks awesome, and after we all enjoyed some live entertainment.....

In case you can't hear her, she keeps ordering everyone to clap, and of course everyone follows her demands : )

Photo and video editing at www.OneTrueMedia.com

This last one is so precious.....here is Ella dancing with her Great-Grandad!!!!!

Photo and video editing at www.OneTrueMedia.com

Wasn't that just so sweet???

On Saturday morning we were getting ready to run poor Hunter to the doctors, he had Croup and was gasping for air between his every word, I was changing Ella's diaper on the floor in front of the Christmas tree and she says "Christmas tree tutu like Glue dance clap clap clap clap fun silly!" To translate - we put up the Christmas tree, I put on my tutu, I danced to Stuck like Glue (which was prior to this recording) and I told Nana, Grandpa, Grandmom and Grandad to clap, we had fun and I was silly! - I love that girl!!!

Happy Thanksgiving

2010-11-25T19:37:00.000-08:00

We have had a great Thanksgiving! I have so very much to be thankful for. I am thankful for the little boy who shoveled my driveway, the little girl who "helped" me cook, and the husband that ran to Walmart for a few things I forgot. I am thankful that my grandparents came up from Georgia to visit and SOOOO thankful that my parents moved here from Alaska to be with us. I am so very blessed!!!

An attempt at pictures out on Nana's back deck

Christmas pictures are going to be fun this year.....

My grandmom and mom

The kids and their great-grandparents

The men

The kids and their Nana and Grandpa

Ella and Nana, don't they look so much alike???

Talking up a storm

2010-11-20T23:59:00.000-08:00

Unfortunately I don't have any video to show you but my girl is talking ALL the time! Most of the time it is full of attitude, but wow Ella is talking so good. This morning we were at Walmart and she had quite the conversation with the cashier, and the cashier actually understood EVERYTHING that Ella said. It was so awesome!

I went to Ella's teacher conference yesterday and got to meet with her teachers and all of her therapists. They had so many nice things to say about Ella, she is doing so great in all areas! She is starting to talk a lot more in school, although nothing like how much she talks here which is ALL the time, but she is getting there.

I do have a little problem I want to share with you all.....so, Ella has known all her colors for quite awhile, by matching, signing and verbally naming them. Now she knows her shapes, can count objects up to 10, sing her ABC's, and is starting to recognize words and has lost her colors. She can still match them (as in give her a green bear and she puts it on the green dot) but names the color wrong. I have been working and working on 4 colors here at home. "Ella what color is this?" "red" "no, this is blue. Say blue." "Blue." Then I put it down and pick it back up, "what color is this?" "Red." Seriously, it is driving me crazy. I even brought it up with her teachers and at first they thought maybe she was just messing with me (she messes with them a lot, purposely calling them the wrong names and laughing etc) but they have been testing her here and there and yep, her colors are gone.

Now I remember when she was little (birth to three) that if she would be making big progress in motor areas, like walking, then her speech would disappear for awhile and vice versa. And this, I was told, was normal. But now we are having knowledge disappear when she learns something new? Pretty frustrating. Are you supposed to practice every little thing they know every day so it doesn't get lost???? Argh.

I will share a funny little story about Ella from tonight. Ella and I were in her room getting ready for bed. We somehow have gotten into this little routine of listing off things we are about to do, and then she repeats them to me. It kind of helps relieve meltdowns. So I count off on my fingers one by one, and say "jammies, bed, cream, paci," so Ella counts off on her fingers and says "no, no, no, no." I try very hard not to laugh and again say "jammies, bed, cream, paci," (cream is her lotion for her face and paci is a pacifier and yes my 4 year old still takes one...) and Ella counts off on her fingers, with a smirk on her face, and says "ice cream cone, ice cream cone, show, ice cream cone." To which I of course laugh hysterically. I love that she has a sense of humor.

Here are a few pics.......

Ella got her haircut on Monday by my friend Molly (she's the best!) It was badly needed and she took off a good bit and then framed her face a bit with her hair. It looks really cute. If only I could tame the static that seems to find Ella 2 seconds after I do her hair......

School pics 2010

2010-11-15T20:15:00.001-08:00

I got the kids school picture in.....I must say they aren't too bad. Sure there are some fake smiles, but not too bad. I might even say I like the last two!

Free Free Free!!!

2010-11-10T19:18:00.001-08:00

I read about this promotion on The Bates Motel blog..... 50 FREE Holiday Cards from Shutterfly!

Free? I'm on it! Bloggers get 50 free holiday cards from Shutterfly, follow the arrow

-------> http://bit.ly/sfly2010

I LOVE sending out Christmas cards but hate getting them ready. I have always, in years past, printed out 100+ pictures and shoved them into those cards, you know the ones that are meant for pictures to be shoved in : ) Not exactly the most creative cards in the world but they did the job! But this year I plan on plugging my pictures into cards that are already designed, like this ONE, which is super cute but then I may have to suffer through family pictures in which I will not like myself in any of them. So, maybe I will go with this ONE, which is more simple but very cute and just of the kids and lets face it that's all people really want to see : ) Then there is this ONE which would allow me to put multiple pictures of the kiddos on it. Hmmm....decisions decisions! I guess it all depends on what kind of good pictures I get of the kids!

Here is my Christmas picture from 2008...

Fall pics 2010

2010-11-03T20:38:00.000-07:00

Today was a beautiful sunny, 60 degree day here in Spokane so I figured it was the perfect day to try and capture my fall photos. I have done this the past 2 years. I love the colors of the leaves. Here are the photos....here from the past. I almost waited too long this year, most of the leaves are gone from the trees, but it has been raining pretty steadily for the past 2 weeks. This year was a bit of a challenge. Or should I say Ella was a bit of a challenge. When she would actually stand or sit still for me to photo her I got this awful fake grin of hers....

and it ended like this.....

But I did get some okay pictures....maybe even a few that I like : )

"flying"

Fake smile but he is still just so cute : )

NICE

"We did it, we did it, we did it, HOORAY!" If I'd sing a song she would sing a long and at least have a happy look on her face

Maybe next year she will be more cooperative HA HA HA!!!

Halloween pictures

2010-11-01T19:17:00.001-07:00

We had a fun Halloween night!!! We started out taking pictures at home and the kids were actually cooperative!

Then we headed over to the mall for some trick or treating. It was supposed to be raining so I figured this would be warmer, dryer and easier for Ella since there were no steps.

It started off good....

Really good. Ella was saying "Trick or treat" and "thank you" to everyone giving her candy.

She carried her candy bag and stood in line.
But then it turned into this....... "carry" and thumb sucking.
Hunter had a blast, especially wiggling his tooth to gross out Nana : )

Ella got down quickly when she saw that Cinnabon was giving away free cupcakes!!!

But then it was all gone

Overall it was fun.....here are the kids with Nana!!!

We got done at the mall at 5:15......plenty of time to go hit some neighborhoods (Hunter was begging to.) Ella did much better going house to house. She would say trick or treat when the door was opened. Then I would say "what do you say?" and she would say "MORE CANDY," of course everyone thought that was cute and would give her more : )

This is what happens when you eat too much candy.....

Here are some pics from Halloweens Past

2009 Notice Ella's hand placement

2008

AWWWWW!!!

2007

Can you believe how chunky she was?? Look at those arm rolls!
2006......I miss those little babies! Hunter was 2 1/2 and Ella was 2 months!

Day 31 - Phew I made it!

2010-10-31T06:00:00.000-07:00

Well, here we are the last day of 31 for 21. I hope you all have enjoyed my posts.....I'm just so glad I made it to the end, (I've tried the last few years but failed!) I have definitely enjoyed reading every one's blogs. I still have a lot of posts that I have wanted to write but haven't gotten around to, guess I'll tackle that soon!

I am writing this early because I know that tonight I will have two children that are on a sugar/excitement high and I will be wrestling them into bed : ) I plan to post trick-or-treat pictures tomorrow!!!

For now enjoy this video that my friend Molly sent to me, it is SO cute!!!

Day 30 - Glasses/Eye help needed!!!!!

2010-10-30T06:04:00.000-07:00

Alright, I need your help........ I took Ella back into the eye doctor's office a couple of days ago. Ella has been in her glasses for about 2 1/2 weeks now and I had a few concerns. She has been squinting a lot, not making eye contact instead looking down, pretty quick to cry (I was worried she was having headaches) and her eyes have been crossing A LOT both with her glasses off and on. I have definitely noticed that Ella is doing things up close quicker and more accurate with her glasses on, I was more worried how it was affecting the far away things. So the doctor retested her both with and without her glasses on and assured me that her prescription is correct, which I believe him. But he was very concerned at how much she is crossing. He said typically (approximately 80% of kids) will stop crossing when they have their glasses on and it may appear that they cross more when they take off their glasses. And then there is 20% whose crossing does not respond to glasses and or patching. So what about patching I ask him. Well my girl is crossing BOTH of her eyes equally and you can't really patch both. I told him that before the glasses we noticed her eyes crossing maybe once every few days and now it is A LOT. He said her muscles seem to be breaking down quickly and had done even more in the past 3 weeks since we were last there. So, he said we will very likely be needing surgery but wants to wait 2 months just to make sure the glasses won't correct it. Of course our doctor is leaving town for good, but we are in with another doctor in his practice and have an appt scheduled for Jan 4th. So for now I get to just worry about it. Has anyone else had this happen???? The surgery corrects the crossing but not the vision issue right? Anyone had unsuccessful surgery, complications???

Here are a few pictures where I have caught one of her eyes crossing with her glasses on.....

And without her glasses....the other eye

Yesterday I got to go to Hunter's Halloween party at his school. It was a lot of fun and I am so glad that this year his teacher does the party's in the afternoon so I can attend after work!!! (Last year they were all in the morning and I work until 2 MWF.) I got to make Spider cookies with 25 1st graders. Fun stuff. I love that Hunter is still sweet to me, even in public, and greets me with a big hug and a "I'm so happy you came mommy!" I love my boy!!! He dressed up this year as a SWAT officer, big surprise : )

Day 29 - Ella's School Halloween Party

2010-10-29T05:50:00.000-07:00

Yesterday was Ella's Halloween party at her preschool. It was a fun day, I was able to stay for the first hour and then Chris took my spot so I could go to the dentist. Ella was a cheerleader this year, and looked super cute in her costume, really enjoyed shaking her pom-poms!!!

These first two pictures are from when I initially tried the costume on her, they were too cute not to share.

Here she is before school...

At school....notice how much her eye is crossing? Went back to the eye doctor yesterday, he says he is pretty sure she is going to need surgery, both eyes are crossing. We go back in 2 months to decide. Yipee.

Apparently didn't want to be in line with the boys.

Ahhh...much better : )

See food.

Pinata!

One of Ella's wonderful teachers, Mrs Casey, helping her out

Look who filled in as the pinata holder : ) I'm so thankful that Chris' schedule allows him to come to the kids stuff at school, and even more thankful that he likes to do that kind of stuff!

Woohoo candy!!

Day 28 - Cop

2010-10-28T06:00:00.000-07:00

Last Friday I left my mom's house, she watched Ella while I worked, and headed to Ella's OT appointment. Well, apparently I was not paying much attention to neither the speed in which my van was traveling down the road nor the posted speed limit and all of a sudden there was a motorcycle behind me with flashing red and blue lights. Crap!!

Ella never saw the flashing lights because she cannot of course turn around in her carseat, he never turned on the siren, and as soon as I saw him I was able to pull over because there was no one else around. So I pull over and immediately get out my stuff....license and registration, yep I know the drill I've been pulled over a time or 4 or 5, though never with Ella in the car (once when Hunter was a little guy.) Anyhow, the officer comes up to my window and Ella yells from the backseat "HI COP!!!" totally excited. The cop starts laughing and says "did someone just say hi cop?" It was cute. And for the record, no I did not get a ticket.

To say there is a "cop" obsession in this house would be a bit of an understatement. Hunter loves all things police....cars, officers, swat teams, shows, costumes, you get the picture. And of course he says he is going to be a police officer when he grows up. Groan. I've been around police work since I was 12, my stepdad was a police officer up in Alaska and I joined the Law Enforcement Explorers when I was 14. I did many a ride alongs and loved it, and I too was going to be a police officer, I just knew it!! I just had to wait to turn 21 and at 19 I became a 911 dispatcher, just waiting out my time. Well, then I got married and moved away. I of course married a military cop and somehow my dreams went away. Instead I dreamt of having children and then once I did I became scared. When I was 17, a senior in high school, one of my Explorer advisors and really someone I totally idolized and rode along with every chance I got, was killed in the line of duty at the age of 25 leaving behind a young son. So once I became a mom I became scared of course, of the danger involved and leaving my children with no mom, scared of two parents working shift work and how hard that would be and so I let go of that dream. Some days I think about the "what if's..." but really I'm glad that is not my life. Now my husband is a city police officer and I hear all the stories of his adventures at night and think, no thanks!

Anyhow, to think of my little boy growing up and becoming a cop scares the crap out of me. Ugh. Of course because Hunter is so obsessed with everything cop, Ella gets to hear a lot about it and whatever Bubba is excited about guess who else is too? Everytime we pass a police car Ella gets all excited and says "a cop a cop!" and she loves to get into Daddy's wallet and take out his drivers license and his work ID (which has a picture of him in uniform) and she will point to the license and say "Daddy" and then the ID and say "Daddy COP!" It's just too cute.

Hunter - Halloween 2008

Ella and Hunter in Daddy's Honor Guard hat.

Hunter sitting with Daddy at the award ceremony where Chris received a life saving medal. Hard not to idiolize that!

Chris reading to Ella's class last year.

Day 27 - messy fun

2010-10-27T05:00:00.000-07:00

First......Ella got her new shirt in and I like it! Thanks Amy!!

Tonight we carved pumpkins. I forgot how much of a mess it is. But the kids had fun making a mess.....

Ella just had a little taste....

I decided to be brave and let Hunter carve his own this year (really he begged and begged and I caved) he used one of those little saw things that come in the cheap-o kits. I drew out the "design" and he cut. He did very good and was very careful!

Ella played, no kidding, for almost 2 hours with the pumpkin guts. She was pretending to make pumpkin pie (which she did make in her class at school today,) here she is pretending to eat it : )

Here she is totally annoyed with me because I was asking her to look at my camera!

And then there is Chris.....he takes his carving very seriously. I attempted some own design and accidentally cut off one of it's ears so it looks like....nothing : ) Oh well.

Day 26 - Comparisons

2010-10-26T05:00:00.000-07:00

Last night I went to Hunter's Boy Scout meeting because he was receiving a few awards. There were about 30-40 boys there and all of there families. I was pretty surprised to look in the row behind me and see a boy with Down syndrome, and then to look 2 rows behind me and see a girl with Down syndrome. So out of 30-40 families, 3 of us had a child with Down syndrome and were all sitting together. I could not keep my eyes forward ( I did watch Hunter of course but wow that was a long meeting...) and of course in my mind I am comparing Ella to these other two children. Both of these children were older than Ella, the boy (I asked) was 5 and the girl appeared to be about 8.

I don't know why I insist on driving myself crazy. My mind instantly goes into this mode. I try to imagine Ella at their age and it always crushes me a little. When I imagine Hunter as a 10 year old boy, I can, it's easy to make that leap. Then I think about Ella at 10 and I get images in my head. I imagine all her little behavior issues/quirks being done. I imagine her talking and everyone can understand her. I imagine her with a best friend. I imagine her being socially appropriate, being quiet when she is supposed to, not running away from me. I imagine us going out on Mommy/Daughter "dates" shopping, dinner and a movie. I guess my image is of Ella being pretty "typical." And then I see a child with Down syndrome at approximately that age and my heart breaks a little.

I seriously need to just get over it. I mean really. Had I stopped and thought about Ella being 4 when she was a newborn and known that she would just really be starting to talk, that she would still wear a diaper, that she would (God help me) still take a pacifier, that she would be the size of a 2 year old, that she would have pretty much no danger perception, that she would still NEED naps, that she would be a "runner", that I wouldn't be able to reason with her, that she would be so naughty some times I cry and question my parenting ability, that she would be wearing glasses.......you get the point......I would be devastated.

I really need to just live in the moment, take each day for what it is. TODAY I know that my 4 year old is awesome she IS starting to talk, she can poop in the potty and is well on her way to being potty trained, she is a tiny spitfire, she is fiercely independent, she takes naps and I get a break sometimes, she is social, she is smart, she has friends both with Down syndrome and without, she is so incredibly amazing sometimes that I think I must be doing something right, she wears glasses but is such a responsible big girl about it, she goes to school and totally keeps up with her "typical peers", she has a great sense of humor and says and does things to get a laugh, she can behave (she can sit through a totally boring 2 hour Boy scout award meeting), she can count objects, she can say her ABC's (and you can mostly understand what she is saying,) she can sing songs that come on the radio........again you get the point......today I KNOW Ella is amazing.

I guess I thought that by the time Ella was 4 I would be over it. Down syndrome. It wouldn't effect me so much. I would totally accept it and be happy about it. The truth is that I really do have my head wrapped around it most of the time. And truthfully I love everything about Ella, everything that makes her who she is, including Down syndrome. But the truth also is the future scares the crap out of me sometimes, and sometimes I am terrified and overwhelmed. And I hate that. The future of my son, Hunter, does not scare me, sure it makes me sad to know how fast it all has and is going by, but I am not frightened by his future. I feel guilty.

Things I need to remember.... Live in the moment. Stop comparing, every person is an individual and everyone is different. Enjoy today. Try not to worry so damn much, it won't change things. Ella's future will be great. Hunter's future will be great. And therefore my future will be great.

Day 25 - Sticker fun

2010-10-25T06:16:00.000-07:00

On Saturday night after baths and jammies the kids decided they wanted to color. Hunter loves to draw roads and put sticker cars on. Ella of course wanted Hunter's stickers so I remembered that I had also bought her a sticker book. Both of their books are Melissa and Doug sticker books and have over 700 stickers. They are really neat! I didn't realize what great OT for Ella this would be : ) It is HARD to manipulate tiny little stickers, even for me! But she was quiet motivated so she didn't even know she was working!!!

The cheesy smile. Now with added eye squinting. Not sure why she is doing this....

And the cheesy boy : )

Hunter's sticker creations

Ella's stickers. These are really cute, like paper dolls but stickers. The shoes were super hard!

And a tea party, this one was easier! And she was SO proud of her work!!

Day 24 - My Scout

2010-10-24T06:00:00.000-07:00

Hunter joined Cub Scouts at the begining of the school year. He really enjoys it, especially because it gives him and Daddy some boys only time! Every time I see him in his little uniform it makes me want to cry.....he is just so grown up all of a sudden.

The night he earned some sort of badge/patch. (I really know NOTHING about all of this!)

A couple of weekends ago Hunter and Chris were able to go camping with the Boy Scouts and then spend all day doing fun stuff like shooting, archery, and fishing.

It's stuffed....

This wolf is NOT. Yikes!

Guess who wants to be a Boy Scout too???? (totally unprompted by the way...)

Salute, in case you couldn't tell : )
And here is what Hunter thinks about that!

It is rough being idolized!!!

Day 23 - Me and my pumpkin

2010-10-23T06:33:00.000-07:00

It isn't as often as I would like that I get to do things with just Hunter. So last week his 1st grade class was taking a walk to a pumpkin patch and I was off of work and so was Chris which meant that Ella was taken care of!! So of course I wanted to go! I LOVE that my 6 year old boy still runs up to me when I show up at class and gives me a big hug, seriously love that, and says thanks for coming mom! It was a short field trip but we had a good time. Hunter and I got to be the road guards while the kids were crossing and Hunter took his job very seriously and was quite proud of himself : ) Hunter really is the coolest kid I know and I am so proud to be his mom!!!

Day 22 - Young Athletes

2010-10-22T06:00:00.000-07:00

Ella loves going to Special Olympics Young Athletes!!!! Hunter has fun too, he is such a good helper for Ella!!!

Jumping....I can tell by the hair : )

Day 21 - Spider Cookies

2010-10-21T14:34:00.001-07:00

Yesterday the kids and I did a little project, we made Spider cookies out of Oreos. The kids had fun and of course enjoyed their treat. (No I did not let my kids eat all of those, Hunter made 2 for today and 2 for tomorrow and Ella one for today and one for tomorrow...I'm not that crazy : )

As a side note.....the glare coming off of Ella's glasses when I take pictures is really annoying me!

Day 20 - My kiddos

2010-10-20T06:00:00.000-07:00

Here are a few pics of the kiddos that I took on Friday night before we headed off to Hunter's school Fall Carnival. I'm getting used to Ella's glasses, I think. She is still doing SO good with them. They mostly annoy me because I always see them as either crooked or slipping and it drives me crazy. But...... I'm getting used to them, maybe one day I will like them.

Anyhow, the carnival was fun pretty much just for Hunter. There were several bounce house type things and there was no way I was letting Ella in them, she would be trampled for sure, but she was pretty well behaved so it was good. I love watching Hunter interact with his friends, and it seems like everyone knows him. I kept cracking up, kids would come up and talk to him and they would exchange their "dudes" and "peace" seriously I don't think I have heard the word dude so much ever, and I would say "is that kid in your class?" and I always got, no that's so and so he's in 3rd grade I play wall ball with him at morning recess, no that's so and so he's in 5th grade I play wall ball with him at lunch recess. It was cracking me up. I asked him if any one else in the 1st grade played wall ball with them and he said "no mom. At first they wouldn't let me play because I'm only a first grader but then I showed them that I could so they let me cause I have the skills." Alright then.