Day 13 - Spirit Lake

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

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

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

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

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

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

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!!