What a year we've had!!!

It's been a big year for us. First we got to meet Mickey Mouse and all his friends at Disney World. We got to meet Curious George at the zoo (we stood in line to meet George for a lot longer than we had to wait for Mickey!!) and Alex got his picture on Times Square for the New York Buddy Walk.

My friend Laura Q was kind enough to snap a shot of it as it whizzed past on the Jumbo Tron. I love it, as I was so disappointed to not make the big trip to the big city!!! So here it is, in all it's glory!!!

Guess what I got for Christmas????

If you guessed a guitar and some M&M's (note the chocolate mustache and beard) you are correct.

Merry Christmas from my little Guitar Hero!!!

For my dear friend Annette

heaven will receive a beautiful angel and we on earth are losing a beautiful friend! I know that you are surrounded by beauty and light.

Until we meet again........

Another Fun Christmas Poll

You know I'm gonna tag you Christine!!!!

1. Wrapping paper or gift bags? Both

2. Real tree or Artificial? I prefer real, but we have an artificial

3. When do you put up the tree? Usually by 2nd week of Dec

4. When do you take the tree down? As soon after the 25th as I can

5. Do you like egg nog? ohhh yeah

6. Favorite gift received as a child? Easy Bake Oven

7. Do you have a nativity scene? Yes

8. Hardest person to buy for? Steve

9. Easiest person to buy for? Alex

10. Mail or email Christmas cards? snail mail

11. Worst Christmas gift you ever received? Hmmm I don't recall

12. Favorite Christmas Movie? A Christmas Story

13. When do you start shopping? Way too late

14. Have you ever recycled a Christmas present? No

15. Favorite thing to eat at Christmas? Ham and Christmas cookies, no not together!

16. Clear lights or colored on the tree? clear

17. Favorite Christmas song? Hark the Herald Angels Sing

18. Travel at Christmas or stay home? Home

19. Can you name all of Santa's reindeer? Yes

20. Angel on the tree top or a star? Angel Bear

21. Open the presents Christmas Eve or morning? Morning

22. Most annoying thing about this time of year? The messy slushy snow while shopping

23. Favorite ornament theme or color? Country looking

24. Favorite for Christmas dinner? Ham

25. What do you want for Christmas this year? Leather Jacket

OK.... tag you're it!!! Christine, Jan, Tara Marie

Tagged by my Favorite Utah gal!

You can go visit her here.

What is your favorite thing about the holiday season?
Seeing all the decorations go up, whether it's at the stores or work or home.

What is your favorite holiday memory?
Santa Claus would always bring us these huge red apples! Yes we had apples alot and we even had apple trees, but those big shiny red apples were my favs!

What is the best gift you ever gave?
I'll have to think on that one!

What is the best gift you've ever received?
An Easy Bake Oven!!! LOL no one of the originals... the ones that could burn your house down.. no safety codes back then! I loved it.

What is your secret holiday wish this year?
Now if I tell, it won't be a secret

I really like Alex's new doctor

WOW! Talk about putting a new perspective on things! I think we needed to change immunologist and I think we waited too long. Our old Doc just gave up on Alex. He wasn't looking to find any new treatments or options etc. This new guy is so enthusiastic about finding something to help Alex, it's amazing how much my attitude has changed.

We're upping Alex's IV dose and doing it every 3 weeks instead of 4. After December, we'll more than likely go to the subcutaneous IG rather than the IV. It is once a week, but less traumatic and less time off of work. We can actually do it ourselves at home if we want.

This is the first time in over a year that I don't feel like my child will be dead in two years. I know he can't cure Alex, but it sure is dang nice to have someone at least fight!

Thank God for the doctors who still give a damn!!!

UGH! Another short bus reference!

I love Sell This House on A & E. I've watched it for the past couple of years. But today I was blown away, when during the episode, the homeowner said "yeah it turned out short bus yellow" WTF??? I couldn't believe that they left the comment in. So off I head to my computer to shoot an email to A & E. So I searched for the episode and what did I find??? Holy Cow! They actually quoted the lady on their website!!! Like she offered up some kind of profound wisdom!!!

You can read the offensive episode description here. If you would like to email A & E, you'll find them here feedback@aetv.com. I also managed to find Tanya Memme's email addy, so I thought what the hell, I'll fire one off to her too. If you're gonna throw your big ole ta ta's around like someone important, you better be ready to take the heat! TanyaMemme@gmail.com

I also emailed the ARC and NDSS. I tried that the last time I heard a nasty remark made in a TV show, but I got little response. But hey I try!

Shame on you Sell This House. Shame on you A & E TV!!! May your show get cancelled and they replace you with Danny Bonaduce!!! Now that's karma baby!!!

Halloween Tag

From Christine....

What was your favorite Halloween costume as a child?

My mom actually had a poodle skirt from her high school days, so my friends and I dressed up as 50's girls.


What was your least favorite Halloween costume as a child?

We use to have to wear those store boughten costumes, the one with the plastic masks and a little slit in the mouth so you could breathe. I don't remember which one I picked, but I remember it being cold out and yet sweating behind the mask... yuck!


What was your favorite Halloween candy as a kid? Is it still your favorite?

Any chocolate bars. Next came Smarties and bubble gum. My brothers and I use to swap for the candy we liked. Sometimes we got a huge full sized candy bar or money!!! I still love Snickers and Baby Ruths!

How old were you when you stopped trick-or-treating? Do you miss it?

The last time was the poodle skirt and I think we were 13. We had a blast.

What's the scariest movie you've ever seen?

Hmmmm..... The Omen, I know there's others, but I can't think of them... I'm not into the Halloween ones etc. I don't much care for the slasher movies either.

And - have you ever dressed up in "matching" halloween costumes with your date? What were they????

Nope.

Now who to tag.... hmmmmm. Monica (cause she'll never read this and do it!), Jan and Beth. I don't have 5 friends! LOL

I'm exhausted.

We had a glorious time in Indy!!! It was wonderful to meet all the people I've been chatting with for over 6 yrs now! The children were beautiful and fun and active! Jan and Jeff were wonderful hosts, I don't know how they did it all!

Smooches to all of you... oh you know who you are!!!!

Where do we meet up next year???

What should you be for Halloween?

Your Halloween Costume Should Be

Elvis

What Should You Be For Halloween?

A cute girl

Went to lunch with my oldest son today, we both we're bumming around. Went to Jason's Deli. I love that place for lunch. It's as close to a New York deli as you're gonna get in Nebraska! LOL

Anywho, who should appear in the restaurant but a cute little girl, probably about 8 yrs old, gorgeous white blonde hair and a stunning smile. Yup she also had that extra chromosome.

I kept watching her interact with her older sister and someone who had a young baby with them. I tried not to stare... but I couldn't help it. It's irresistible... really it is. You just want to see how other families interact, how the child is doing etc. She was kind of a monkey... hehehe... just like Alex!!! They would have been an ornery pair together!

I tried to give the mom the "I get it" smile... I hope she understood. I wasn't one of those rude, irritating people.... or maybe I was after all??? Hmmmm....

Missed it by this much..........

I intended to blog yesterday, I really did.... but ya know, Sunday night TV is my night! ABC rocks it on Sunday night!!!

Anywho, I wanted to post about what a wonderful afternoon we had, just the three of us. We had shopping to do and Mommy was on a mission for a rug. It took us 3 stores and driving all over Omaha to find it. I'm not really fond of it once I got it home, but it was such a hassle, I'll keep it for now. But I digress from the fun. We stopped at DQ and got hot fudge sundaes!!! Now if you don't know by now that my kid likes ice cream, where have you been? Off reading other blogs and not mine! LOL

My point being is that it was soooo "normal" stopping for ice cream on a warm Sunday afternoon, enjoying the weather and the company. Many people think because you have a child who doesn't fit the mold of "normal" nothing in your life is normal. Couldn't be farther from the truth!!!! While he was licking the bowl and getting fudge all over his face, I realized we are your typical family, complete with a messy, fudge covered kid!!!!

So to the family staring at us.... we are soooo more like you than different from you.... next time enjoy your treats and family time and stop staring!!!!

Tag - I'm it.

Thanks to Kei she tagged me with this little tidbit for our 31 for 21 (thank goodness as I was not coming up with a good idea today!)

What I have learned from Alex:

Prayer
Self-sacrifice
Unconditional Love
Courage
Sleep Deprivation (you asked)

What I wish for Alex's future:

Happiness
Courage
Love
Adventure
Dreams


Your turn!!!

Friends.

On my continuing quest to meet the 31 for 21 ( minus 2 for me so far), I am thinking about my online friends.

I found them on Parent's Place when Alex was about 1. We had struggled to keep this kid alive his first year, I didn't spend alot of time on the computer. I had no idea these communities existed even! I did the usual searches when Alex was born, and eventually I came upon Maddy's (Amy O's sweet daughter) story. She had just passed away. That drew me into the world of online communities. I wanted to know more about her and the wonderful ladies who were posting to her. I didn't know that others felt the way I did....I didn't know many people IRL, who had children with T21.

And I'm glad it did. I have met some of the best people in the world and a few of the really bad ones too online!!! A sub-set of the bestest ones I am going to meet in person next week and I cannot wait! We know so much about each other, our lives, our hopes, our heartaches and to think we've never met in person, yet we have built such bonds, seems impossible. I would welcome any of them into my home and I'm pretty sure I'd be welcome in theirs. I cannot wait to hug them and hug their children, to look into their eyes, to really know them. Although the farting dogs can stay home!!! hehehe

One little chromosome.... packs a wallop huh?

Just like other kids.

Alex didn't want to get out of bed this morning. I talked and chajoled and tickled, but he just buried his head under the pillow, saying no no. Just like other kids.

He complained while getting clothes and complained about combing the hair and brushing the teeth. Just like other kids.

And shoes??? The ultimate in concession..........he had to go to school, just like other kids.

But mommy got a big ole wet sloppy kiss before he left with daddy!!! Mommy was happy... just like other mommies!!!

It's not about the differences.............

I know where stubborn is!

I don't need a PhD in genetics. I don't need to spend years and years in a lab, experimenting on rats. I know exactly where the stubborn gene is!!! (I anxiously await my Nobel Prize in Medicine!).

It resides on the 21st chromosome. Yes I am positive about this. And guess what? My son just so happens to have an extra 21st chromosome........ so you can draw the conclusion he is extra stubborn!

If you want proof, please stop by my house at about 6:45am and try to get him up, dressed for school, give his breathing treatment, comb his hair, brush his teeth and give him 2 other meds. I don't need a fancy dissertation.... I don't need a hypothesis.... I live it each and every day. Come on over you'll see I'm right!

PS. I also believe that the Y chromosome carries some pigheadedness.... I have two sons and a hubby..... the one son with the extra 21st chromosome..... God give me strength.

Get it Down, 31 for 21.

I'll admit up front... I won't hit 31... hey I'm starting on Oct 3rd for pete's sake! LOL But I am gonna try. Click the button below to read more!!!!

I shamelessly stole this from Kei

but I really really liked it... so here goes...

Matt was born on a Monday

Monday's child is fair of face.
You are good-looking, especially when you smile!
You are beautiful inside and out.


Jenny was born on a Tuesday

Tuesday's child is full of grace.
You have many talents, and are fun to be around.
You dance through life!

Alex was born on a Wednesday

Wednesday's child is full of woe.
You are a serious person, and try to change things that seem unfair.
You make the world a better place!

Steve was born on a Monday

Monday's child is fair of face.
You are good-looking, especially when you smile!
You are beautiful inside and out.

And I was born on a Sunday

But the child born on the Sabbath day,
Is fair and wise and good and gay.
You are sunny, fun, and loving.
You bring much joy to other people!


I think they fit! If you'd like to find out your birth "day" click here

And you can find my good friend Kei here

Which Rocker Chick are you?

I am Avril Lavigne!

A bit hardcore on the outside... But sweet and sensitive on the inside. "It's a damn cold night Trying to figure out this life"

Who's Your Inner Rock Chick?

Time is flying by!!

Holy cow. One minute it's 105 out and now it's 75 and a cool breeze!!! Where the heck did summer go? I love fall, the smells and colors, but I sure do hate winter! I am not a snow bunny. I am a fun in the sun bunny! (Ok I'm a big ole lumpy bunny who eats too much ice cream and candy!)

Alex is recovering from his pneumonia. We were fortunate to catch it early and not spend any time in the hospital. He still needs his breathing treatments, but we are done with the antibiotic. He loves school and is doing well. They've already had one field trip and have another next week. Must be nice!

I saw a precious little blond haired boy today at the mall. Complete with that extra chromosome! Big brother was pushing him around in the stroller and he was squealing! LOL I recognized his mom, but she was busy trying out new makeup and I didn't want to interrupt! I know what it's like trying to pick out makeup when you have all the kids with you!!! It was fun to see him enjoying the fast ride!