What Am I Supposed To Think About This? :)

Yesterday I was outside with Kai while he was playing. He runs up to me and carefully puts two small pebbles in my hand and asks me to hold them for him. He starts to run away but stops and looks back and instructs me, "Mamma, don't eat them." and takes off. :)

Where's My Angel?

I finally captured a picture of Noah doing his defiant angry face. It is even more hilarious in person. He will throw a huge handful of food off his tray and he'll turn to look for me and give me this look. I usually crack up laughing at our stare down because it's just so funny to see such a tiny sweet thing trying to give me an angry defiant look.

I stole the title of today's blog from the blog of another person that has children with Down Syndrome. She said something to the effect of, "Everyone says kids with DS are always so sweet and are wonderful little angels. Well, where are my angels?" Hahaha! Noah IS sweet and wonderful, but he can still be just like any other punk kid. I love it!
These are the twins napping the other day...my sweet babies! I love it when they suck their thumbs!

Look at Noah sitting like a pro! It is still so wonderful and exciting to me that he can finally sit! His helmet is working well. At his last appointment, there measured some changes towards his head becoming more round! He's supposed to wear it 23hrs a day, but we take it off at meals to let his hair dry out and also when he has a fever so he can lose some heat. Overall, it's going well!
Kai can write his name!!!! He can already spell it himself and at school they've been teaching him to write it by having him trace over what they've already written. Last week he had a breakthrough and wrote it all by himself without tracing it! I can totally see the letters in this! Can you? And he fit it all in on one line...the teacher said that sometimes he starts too big or in the middle of the page, so he can't fit it. Not this time! Kai won't do it for us at home, so we didn't have any samples here. However, today he brought this home from school and VERY proudly showed it to us! Yay Kai!!!

My little explorer. :)

Goat Farm

We went to a local goat farm today! The boys really were interested and had a good time! It's funny, I was trying so hard to keep the kids' hands clean b/c there was poop on the ground from goats, ducks and a pig. It's very different going to a farm as a vet than going to a farm as a mom with little kids that still put their fingers in their mouths a zillion times a day! The mom in me wants their hands clean b/c it is, after all, poop they're touching when they touch the fence, the rock, the ground...or the, uh, actual POOP (Kai said, "Look! Goat food!" Nope! Them ain't food, son!), and the vet in me REALLY wants their hands clean b/c I know the possible parasites that could be in that poop!! With my little squirty bottle of hand sanitizer, I cleaned their hands a lot and tried to catch them before they put their fingers in their mouths. Well, they had the most amazing fresh hot donuts there and we gave one to Kai....before Chad could stop him, Kai dropped part of his donut on the moist well-trodden ground and quickly picked it up and popped it into his mouth!!! I could picture Kai thinking, "Don't want to waste a crumb! We don't get donuts every day, you know!" Geesh! I reduced my hand sanitizing efforts after that.

Here are some fun photos!
Zeze didn't know the goat was about to touch his hand.... Now he knows!

Zeze started reaching through the fence to splash in the water buckets and try to reach things in the goat pen. This is a view of what the goats saw!

In Zeze's left hand is a chunk of donut. Like I said earlier, we don't get donuts very often here...he's not sharing with his brothers or a goat!

Inspiring Young Man

Check out this uplifting article (http://news.yahoo.com/s/usnews/20090403/ts_usnews/how1autisticyoungmanrunsabusiness) in US News via Yahoo about 23 year old Joe Steffy, an enterprising young businessman who also has Down Syndrome and non-verbal Autism. Pretty cool!

Easter

We had a very nice Easter. We made it church and made it home without any meltdowns and with all outfits still tidy enough for pictures (from a distance)! It's funny, there were 2 little girls at church yesterday who were dressed so beautifully with their pink satin dresses and bows in their hair! Our pastor's wife knit all 3 of my boys beautiful sweaters, so they all had on tan chords and their sweaters. They looked SOOO CUTE (I'm not biased at all!) By the end of church, my boys had sweaters and shoes off, juice spilled down the fronts of their t-shirts, were sweaty from playing hard and grimy from the after-church-cookies! Those 2 little girls still looked PERFECT! I love my sweaty grimy little boys and wouldn't trade them for the cutest pinkest satin-dressed girl, but man, I'd like to get through one hour of our day and still look tidy even up close!! :)

Here are Zeze and Kai finding Easter eggs! Kai had a great time and was even more excited when he shook them and realized there was candy inside! Yes, I let my kids eat Teddy Grahams, Peeps and jelly beans before breakfast....who started this whole candy thing anyway? :)
Kai and I dyed eggs for the first time (for him)!
The boys: You can see Zeze is trying to get his socks off. When he finishes doing that he'll try to get Noah's socks off.

Family pictures. These are the 2 best. Zeze was in no mood for pictures...hmmm, do marshmallow peeps have anything to do with that?

This is a picture of my mom preaching at an Easter Sunrise Service on top of a ski mountain. Beautiful! If you look really hard.....you'll notice that we are NOT there. That's crazy!...even THINKING about brining 3 little kids on top of a mountain at 5am during 0 degree weather makes me shudder. However, Chad and I will do that some day, when the kids are grown or old enough not to complain the whole time and wreck it. :)

The R-Word

This is an interview with John McGinley (Dr. Cox from the show Scrubs) whose son has Down Syndrome. I missed the national "Spread the Word to End the Word" day on 3/31/09, but I can still inform you all about what it was. It was a campaign to stop people from using the R-word, or Retard/Retarded in common conversations. I figure I can expose you all to what I am learning and what has become part of our lives....

Things I'm Thankful For...

-Noah is sitting!!
-Zeze is walking!!
-Zeze is eating with a spoon!!
-Kai is signing about 1/3 of the letters of the alphabet and can recognize ~90% of the letters when I sign them!!
-Kai is signing partial sentences "Want more food please." "Want socks and shoes please" etc.
-Noah signed "more eat" today for the first time! It was only last week that he signed "more" for the first time.
-Zeze can sign Ball, Eat, More, Cat, Water, All Done, Mine, and an occasional Banana. He is also saying, Dada, Mama, Cat, Ball, Nap, Juice and Get.
(Oh, we're all learning sign language since often kids with Down Syndrome take a long time to learn to speak even though they can sign much earlier. Zeze and Kai are absorbing the Signing Time videos like sponges which is a surprising bonus!)
-Kai is both spelling and reading many words like, dog, cat, mom, dad, ball, water, truck, cake, milk, malakai, pot, hat, car, book, spell, stop, go, apple, etc. It's amazing. He just keeps asking me to spell different words or to sign/spell them.
-Kai is getting more comfortable at school and for the first time has initiated conversation with his teacher and a friend...he talks a lot at home, but at school he'll only answer questions and not initiate anything.

Last week I was so discouraged because we'd all been in the same place for months. I thought that Noah would never learn to sit by himself and that Zeze would never stop crawling and Kai would never develop at school etc. Turns out we just need a week or two of being healthy and not being in the hospital for us all to flourish!

This is Noah SITTING by himself playing the piano!!

Then and Now

Almost exactly one year ago (4-8-08), Noah's heart was stopped, he was on a heart-lung bypass machine, his chest was split wide open and doctors were repairing his heart. Chad and I were in the waiting room and suddenly a woman walks up to us and asks if we mind if she sets up her harp and plays right beside us. Seriously! She told us that this was her day to play the harp in this waiting room. That harpist was the catalyst that made us step outside of "the box", leave the waiting room and go get wine, cheese, crackers, chocolates, strawberries and Bailey's Irish Cream and sneak them back in. We realize now, that during that hour that we were out of the hospital, was the first time in our lives that God gave us a glimpse and a piece of "the peace that transcends all understanding".

When I hear that verse I usually think of the kind of peace that would feel similarly to laying on a beach with the perfect weather and not a care in the world. I thought it would be like an extreme amount of peace, but actually, for us it was a kind of peace that is really hard to explain (kind of like we don't understand it :) ). The fear, the dread and the anguish were still there and still very present, but it was like God let us step outside of that box and stand next to it for a bit. Just like we stepped out of the waiting room for a bit, God gave us this weird "peace" that let us stand next to the pain just long enough to get our breath back so to speak. We felt lighter...not happy, not joyful or any of those other words...we still felt fear and anguish but it didn't "taste" as strong for that hour. It was the lowest point in our lives, yet it was also the coolest because God was so completely present with us (though we didn't fully get it at that time).

Anyway, we've all come a long way in a year! In fact we just realized that whole peace thing only a few days ago! I hope and pray that as we continue to distance ourselves from the trauma of it all, we will continue to recognize the many ways that God was there with us. We have known all along that He was there, but it's much more amazing to actually "see" the specific instances!!

I'll include some pictures from then and now so you can all appreciate how far we've come!

Noah Then: just after heart surgery. He weighed only 8lbs and was 4 months old.

Noah Now: just after rolling around on the floor in syrup and french toast that he had thrown off his tray.

Zeze Then: I think that was only one of a handful of times that Zeze was smiling in those days...before we found out he had a dairy allergy. I think he screamed almost every waking hour before we changed his diet.
Zeze Now:
Kai Then:
Kai Now: learning to ride his "new" bike. (I love Freecycle!) It was just before bed, but I couldn't wait any longer to show him the bike, so we let him go out in his PJs.

Twins then

Twins now

Brothers then
Brothers now