Tuesday, September 30, 2008

Who Da Man?

Doug's da man! This weekend marked the completion of his deck re-haul project! Yay! We now have a completely finished, sturdy, beautiful Trex deck lovingly built by Doug. This was such a huge undertaking, I am so impressed with what he accomplished. Of course, he will nit pick and tell you about the flaws he sees in his work, but I think it's fantastic.

Here's the before:

And now the after:

The boys hauling out the scraps to go to the dump.

Of course, no sooner then he had it finished something happened to it. Aidan sat underneath the table on the deck and WROTE on the floor with an ink pen! Yes, Aidan, not Sean. Doug was so stunned when he saw him that he froze. He looked like he was going to throw up, or possibly throw Aidan. I ushered Aidan inside and asked him why in the world he did that. He said "I dunno." I sighed and realized this was payback for shit I pulled as a child (I got busted twice for writing on walls at other people's property.) I told Aidan that sometimes our brains just don't get turned on and we do naughty things we shouldn't. I sat him down with a pad of writing paper and had him write, "I'm sorry Dad" several times. I Goggled "removing ink pen" and found how to get it off the deck. Doug was able to get it off, but it left a faded area. I hope it serves as a life lesson and reminder to Aidan.

One More Photo....

My handsome boys on their way to school today.

DSSW Picinic

We had some fun getting out this past weekend. Friday night, we met with five other families in our town that have children with Down syndrome for a pizza dinner. We gathered in a church that had a big meeting room with a basketball court, so the boys had a blast chasing other kids around and playing ball. Doug and I enjoyed talking with other parents that we have met some but haven't been able to really get to know. One of the families has a 3 1/2 yr old son with Ds that is in Sean's class at preschool so he was happy to see his school friend.

Saturday we went to the Down Syndrome Society of Wichita's annual picinic at Watson Park. It was a big turn out this year and the group rented a bouncy house so the kids had a blast. In addition to eating yummy food and getting to meet/talk to other families, Watson Park has a lake to walk around or rent a paddle boat on, a kids train to ride, pony rides, and putt-putt golf. Both boys played hard and got soooo dirty! They had fun riding the train and the ponies. Sean did so well riding independently!

The little Ella Bean napped most of the day, so mommy stayed with her in the shade talking to people. Our big Buddy Walk weekend is just 4 days away! Doug and I are making medals again to hand out at the walk. We can't wait to have our family join us. Also, we will be having Eleanor's baptism on Sunday, so it promises to be a very special weekend.

Friday, September 26, 2008

Sean's Twin Brother Needs a Home!

While reading the adoption journey at Waiting for Reese I saw a photo that caught my breath. A little boy named Pavel who has Down syndrome and lives in Eastern Europe desperately needs a loving home. Pavel just turned three years old on June 5th (irronically that's Doug's birthday.) In his country, children with special needs are generally given up for adoption & placed in baby homes until the age of 4. Once they turn 4, if they haven't been adopted they are moved into an institution where they are no longer able to be adopted. These wonderful children are not viewed by their society as worthy of an education and recieve little stimulation. It's a horrific way to live and it breaks my heart to think of these angels living without the love of a parent.

Especially when I look at Pavel.

Had our Sean been born in that location, his fate may have been the same.

If Pavel captures your heart and you want to do something to help him, you can donate towards his adoption grant at Reece's Rainbow to help fund his adoption. Or if you feel Pavel has a place in your home and heart, you can use that link to inquire about adopting him.

I know that my blog doesn't reach many, but I can't get this sweet face out of my mind and thought I should try to do something. Thanks for reading.

Tuesday, September 23, 2008

Knock, knock...

Who's there?

Emma who?

Am I cracking you up yet?

Work that Bubble Butt!

So stinkin cute! She's 7 weeks old today!

BTW, the red mark on her eyelid is not a scratch and is not bleeding. It showed up when she was 2 weeks old and hasn't disappeared. Might be a birth mark? I dunno. I plan on asking her Ped about it at our next appt.

Monday, September 22, 2008

Minor, but Happy, Layout Changes

I was looking at my blog layout and just thought, hmm need to update this!

I removed my "In My Thoughts" feature, not because those families are no longer in my thoughts, but because the kiddos are in remission! Such a happy update! I will continue to keep in eye on Miss Chelsea's recovery from her winning fight with cancer at Dream Big. Of course, I couldn't possibly stay away from Kennedy at My Special K's. I am so proud of you two!! What heros!

Friday, September 19, 2008

I crack myself up

You might notice I added a new photo of myself. Well.... it's not exactly new.

Thursday, September 18, 2008

Coming Soon...

to this blog and others:


Yep, let's see if I can keep up this year! Thanks for getting the ball rolling, Tricia!

If You Like Looking at Super Cute Babies...

with designer genes, check out this link! A Special Joy: Babies with Down Syndrome I see lots of pics of my friends in cyberspace! Makes me wish Seanie was young enough to add to their gallery.

Here's a Seanie pic anyway...

Also, I'm been meaning to post this. Moms that have had babies after their child with Ds: do you find yourself looking at the child and thinking that it's odd that the baby doesn't have Ds features? Sometimes I look at Ella and think ""her eye's should look like Sean's." I guess I just am used to gazing at his sweet face. Not that I don't find Ella adorable in her own ways, just that it seems like I am more accustom to seeing a face with Ds traits looking at me.

Tuesday, September 16, 2008

Buddy Walk Day is Approaching

I feel so behind the ball this year regarding the Buddy walk. This is the first year I haven't done my usual campaigning or fundraising for the Buddy Walk and I am feeling a bit guilty. I set up a team page awhile ago, but just got around to emailing invites today. I didn't serve on the committee this year and do not plan on making Strollin' Snacks either. I love the Buddy Walk, the day together with families that know what our life is like. The support from our friends and family. Seeing all of those beautiful faces.

I just had to cut myself some slack as I adjust to having kids in two different schools and a new baby.

Doug mentioned on Sept 11th that it was a special anniversary for us. I said, "Why, you mean because of 9-11?" He said, "No, it's the anniversary of the first Buddy Walk we went to. The one in Denver."

That's right, it was! Sean had just turned one and we had never been to a Down Syndrome support group or any other event. I read about the Buddy Walk (we were living in Goodland KS at the time) and asked Doug if we could go. We invited Doug's parents to come and make a weekend of it, stopping at the zoo the day before. The Denver BW was HUGE, I think the attendance was 7000!

It was a surreal experience. We had never seen or met anyone with Ds before that day, so to see so many people gather in honor of Down syndrome was overwhelming. I couldn't help starring at everyone, wondering how their child was doing health-wise. I watched the older children to see what their development was like. I listened to the young adults and adults talking, laughing, dancing. I took in so much from the experience that day that I felt like my ears were ringing from standing too close to the amps at a rock show.

Doug and I were pretty shy, we didn't reach out to others and introduce ourselves. Aidan was almost 3 at the time he really took a lot of our attention.

Since then, we have gone to the Wichita Buddy Walks and feel much more comfortable with ourselves at the event. I love meeting new families and just the whole spirit of the day. The Wichita walk is a smaller event, less than 1500 attending I think, so it's more intimate. As our family is getting older, they seem to enjoy the event more. Aidan loves his Buddy Walk shirts and talks about how much fun he has at them. Sean's cousins seem to enjoy it too, and I think it has helped them understand Down syndrome in ways we couldn't verbalize.

Well, I guess my point is, if you are near us, we'd love to see you on October 4th. If you are not near, it would be super cool if you checked out your area for a Buddy Walk to attend. To me, it's not about who has the biggest team or raises the most money. It's about celebrating our life together.

Our first Buddy Walk

Second Buddy Walk

Third Buddy Walk

Tuesday, September 9, 2008

Cruisin' with the Hotties

It's State Fair time! Aidan asked his best girl friend to go out with him to the fair last night. He used his hard-earned savings to treat her to a ride and some cotton candy. She was kind enough to ask her sister to double date with Sean, so all the kiddos had a fun night on the town in spite of the chilly night air. Yes, tears were shed when it was time to head home!

Sunday, September 7, 2008

Happy Birthday, Grampa Larry!

From 3 of your 4 grandbabies!!!

Sing-a-long to this classic ballad by Aidan:
Howdy, howdy, howdy!
My name is Grampa Grampa!
I love to sing! I love to dance!
I love to siiiiing, cuz I'm Grampa! Grampa!!!
My name is Grampa, Just Grampa!
I just love to daaaance!
That's the end.

we love ya, ol' man!

Friday, September 5, 2008

One is 4 Years Old & One is 4 Weeks Old

Our sweet boy Seanie is a big four year old boy now! Awww, time goes by too fast! He celebrated his special day by taking his favorite treat to school to share with his friends: yogurt! His teacher said that Sean enjoyed passing them out to everyone and really liked wearing the special birthday hat they made.

Aidan was home for the day due to a cough & runny nose, but went with me and Eleanor to the store to buy balloons and a cake for Sean. Sean was delighted to see the balloons when he came home at lunch time, and by dinner they were off the little weight thingy and one was already popped. Uncle Curt joined us for dinner, cake and presents while Sean got a phone call from each set of grandparents. Everyone sang "Happy Birthday" to him and we re-lit the candles 4 times this year.

This his face when Daddy said "All done with the candles, Sean."

Sean had fun opening presents and playing with his new toys. He also got presents at Nana's house last weekend, so he is in New Toy Heaven.

I took Sean and Eleanor to the Dr's office today for well-child check ups. Yes, on my own. Yes, I learned a lesson. Do not do that again! When Sean wasn't busy trying to escape, he behaved nicely for the Dr and nurses. They didn't have a Ds growth chart for his age, so they plotted his size on a standard chart and he is in the 3rd percentile for height and 25th for weight. At least he's on there! Good news is that his ears are clear and the tubes are looking good still. We gave him 2 of the 4 shots he will need for kindergarten and will do the other 2 at a later date. He had to get blood drawn from his arm so they could do his annual screening to check for thyroid issues and the dreaded Leukemia. I always hold my breath while waiting for those results. Luckily he is such a trooper for shots/lab work and didn't cry much. He charmed the ladies in the lab. They gave him 3 sets of latex gloves, a sucker, a sticker, and a blue arm tourniquet. I think he could of walked out of there with just about anything he wanted!

Eleanor did plenty of screaming during the appointment. She is momma's girl and doesn't like being naked or laid down for long. She is growing great, up to 9 lbs 12 ozs and 22 inches long, which puts her in the 75% for height and weight. I knew she was getting big (so do my poor boobies) because she is already outgrowing clothes.

My main concern with her is this terrible outbreak on her face/head. I thought it was baby acne, but found out it is an allergic reaction. Most likely due to detergents. Since it just showed up last weekend, we assume it was from detergents my family uses since we were visiting them when it happened. The doctor recommended re-washing our clothing/bedding in free & clear detergent and avoiding any perfumed products on her clothes or bathing routine. He suggested just using plain water for washing her. If it doesn't clear up in 5 days, he said we can try a prescribed mild hydrocortison cream next. Poor little E!

After a long visit to the doctor's office, we met daddy for a nice lunch and now the kiddos are zonked out. Peace!