Day 20 - Endocrinologist visit

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

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

We love you Daddy!!!!

Day 18 - Ella's real birthday

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

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

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

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

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 : )