Zoo today!! yay!!

No school today. What do I do with nine children at home?

Here is what I did...I gave them some chores with the promise of a fun, secret, surprise trip after lunch, provided the jobs got done. Most of the jobs were actually completed so...

I sent the teenager to his track meet...

and then I took eight children to the zoo! For Zhen and Theo, this was a first

For the past few months we haven't done anything fun like that. It felt good to get out of the house. Naturally I messed up and loaded my photos backward. But, it's late so...here they are in reverse order.

Ralph really enjoyed the zoo. He "got it" today. It was so cool to watch him doing the animal signs and anticipate what we would be seeing next. Here is pointing to the lion that we just got done watching.

Jordan and Leroy got lucky today and saw the red panda up close. Jordan's favorite animal. :)

The penguins put on a nice show for us, zipping back and forth. Theo tried to catch them!

Zhen got a break from wearing his arm restraints today. They were so dirty I didn't want them to be seen in public!

My very best attempt at a group photo. Ruby was mad and would not turn around and smile. Actually, no one is looking at the camera! haha!

We had a great time at the zoo today. However, before we arrived a child was grabbed by a leopard when he crawled over a barrier and got too close to the cage. A friend of mine witnessed this awful scene. She and another man ran over and started punching and kicking the animal.

They were able to get the child away and he's doing OK tonight. However, she is quite shaken. Could you say a prayer for my dear friend tonight?

Got snuggle-puss?

Speaking of some of the unique characteristics of babies with Down Syndrome reminded me of a great article written by Kimberlee Kadar-Kallen.

Here are a few snips:

Hypotonia - Sometimes referred to as poor muscle tone, what this really means is that all of Baby is super soft and cuddly. Synonyms for this condition are smoosh-ball, teddy-bear, snuggle-puss, honey-love, and so forth. Squeezing and hugging Baby is a frequent and irresistible temptation.

Congenital heart defect - This is really one of several code phrases for an intensive training course in learning the true meaning of Jesus, I trust in you. This training involves great spiritual growth and opportunity for deepening and greatly magnifying one's prayer life. There may even be a special retreat involved where one can really progress in prayer. The special code term 'open-heart surgery' is often used for this unique retreat that takes place in a hospital.

Go read the whole thing! I love the way she takes many "normally-negative" characteristics and shows them in a positive light. It's not spin. It's perspective. It's a privilege to be graced with a child with Down Syndrome.

Got snuggle-puss? I do. :)

Thinking back...

Tonight I was a guest on a Mother The World podcast, discussing parenting children with Down Syndrome. The hosts, Deanna and Carolyn, were great about asking the right questions. But, how do you cover a subject like that? It's HUGE!



Then Carolyn brought out her new daughter who is sporting designer genes, and it took me back to when Ralphie was a baby. Ahhh. Memories.



Let me just say that I love babies, and children and grown ups with Down Syndrome. I think they are a great gift to the world. That said, Ralph's first year was downright frightening. Even so, I never considered that we would have been better off without him. Never once. I loved him with ferocity from day one.



In order to communicate with a large number of people who were praying for Ralph's health, I started experimenting with websites and blogging. I had never heard of a blog until 4 years ago! I'm not sure I would had anything interesting to share until he came along anyway, right?

Ralph at three months.

The original website is gone, but our second attempt is still live on the internet. If you want to go back in time, check it out HERE. I started Ralphcrew a little bit later.

1st birthday party - a little late because he had been in the hospital. :(

I feel like I came out of the fog when Ralph was born. I started to see things more clearly. He's the reason I started a blog. He's the reason we adopted two additional boys with Down Syndrome. He's brought some folks back to the Lord. He was, and is not, a mistake or a burden in any way.

I'm pleased to answer any specific questions that you might have about parenting a child with Down Syndrome. I sometimes forget what life was like before Ralph, so I don't remember what I would have wanted to know, ya know?

I haven't begged for comments in a long time, but here goes: Leave me some love and questions in the comment section. Please?

Happy Birthday Ralphie!

Ralph likes the letter 'H'. :)

My little rock star is four years old today. WOW!

I can't believe that he is so old and so big. He really is mommy's big boy these days. When Zhen starts playing with the TV cabinet, Ralph grabs him and drags him away so he doesn't get into trouble. He is working so hard to learn how to speak properly. He knows his alphabet and how to sign each letter quite well. He can sign his name. He's learning to use the potty!!

In a way though, it seems as if he has always been with us. I can't remember, and I don't want to remember, what life was like before Ralphie. He has inspired me from the moment he was born on that beautiful, chilly night.

If not for Ralph, we would not have a Theo or Zhen in our family. We would likely not know much about the desperate situation of children with Down Syndrome in Eastern Europe or the genocide of babies with Down Syndrome in the United States and other developed countries.

I'm just so happy to be Ralph's mom. I'm so proud of my little rock star. He's come a long, long way!

Today is the day.

God willing, today is the day Theo will come home from the hospital.



We both had a rough night. My problem was simply a 2nd night of recliner sleeping. Pretty sure I'm too old for that. Theo's problem was that he napped yesterday afternoon and didn't want to go to sleep.

Theo did his rocking the squeeky metal crib trick for a long, long time. I held him in my lap for a while, but I was afraid I'd go to sleep and he would take a dive. Then he cried, and rocked...rinse...repeat.

Somewhere along the line I fell asleep. When I woke up, Theo was wearing an oxygen cannula, had IV fluids going and, GASP! TAPE ON HIS FACE!!

I go a little nuts when I have a child in the hospital. I've written about it before, a long time ago. First of all it was silly to put oxygen on him. He has airway issues and sometimes needs to be repositioned. In fact when I woke, the cannula was sitting on top of his nose and his oxygen sats were just fine. I made certain to point this out to the nurse.

Second, Theo can't have tape on his face, his skin breaks down so easily. He's a delicate little Ukrainian prince, ya know? I asked for some adhesive remover pads to get those damned oxygen stickers off his face. It's 5:30am. Are any of you overly friendly at 5:30am? I didn't think so.

About an hour later his IV fell out of his arm! Weird. Who would believe me that it fell out? haha!! Figures. We left it out. Baby steps closer to escape.



So, today should be the day that Theo comes home. We waiting on one more lab test to come in and then we are outta here!! I NEED to be home. The place falls apart without me. And everyone misses Theo. Ruby was so glad to see him this afternoon. Those two are best friends!

My Easter horror story.

Here is the view from where I'm sitting right right now.



Crazy huh? Theo became very sick yesterday. Scary sick.

He had been running fevers off and on for a couple of days. A dose of ibuprofen and he would be good to go for the rest of the day...sometimes well into the night! Yesterday was different.

James and I were at church for all three services so grandma sat at home with Theo for us. When we got home, she told us that he had slept until 11am and then didn't want to eat when he got up. She was rocking him when I walked in. He looked odd, but I couldn't put my finger on what was different.

There was no time to get an Easter dinner on the table in time for our hungry crew, so we went ahead and took Theo and the rest of the kids out for Chinese! Nice Easter dinner, huh?

I held Theo for a while and he was heavy and floppy in my arms. But, when he saw my plate of food he sprang to life just long enough to grab some mushroom beef and stuff it in his mouth! I decided to put him into a highchair so that I could sit less than three feet away from the table to eat.

Theo kept slumping over sideways in the highchair. I would straighten him out and he's start crumpling over again. Occasionally his eyes would roll back. He didn't look good at all. Not only did he not look good, he looked different in a way that I couldn't quite figure out. His face. Hmmm.

He was so limp in my arms when I lifted him out of the highchair to go home that I asked James if we should take him to the doctor. He was breathing strange, too...a couple of regular breaths and then he would stop...and then come up for air a few seconds later. Why does stuff like this always happen on a weekend?

As soon as we got the crew back home, I put a call into our doctor's nurse line. She recommended that I take him to be seen. So I put Theo into a nicer, cleaner pair of jammies and headed out to the minor emergency office, all the while wondering what they would think of this 24 pound almost-five year old child with Down Syndrome.

Can you guess? Yep, the minor emergency office was closed for Easter. Dang. I would have to go to the hospital ER and pay a $200 co-pay. Ouch, right? But, for Theo it's nothing. :) The cool thing was that the ER was dead and we got right in. I was acquainted with the ER physician, that was also nice.

Looking at Theo lying on the big white cot I suddenly noticed the delicate line of his jawbone. He looked different.

He was hooked up to an O2 sat monitor and I was shocked to see him in the upper 80's. Not cool. I asked the nurse to start him on oxygen right away. She agreed with me. I went to the waiting area while they started an IV, drew blood and did a chest x-ray. I've seen enough medical procedures and I don't have anything left to prove. I can't stand to see him hurting. As it turned out, one of the blood samples clotted too quickly and had to be redrawn. I stayed in the room this time and he only grunted a bit while the vampire rooted around for a vein. Poor sweetie.

This is getting long, but I don't want to forget these things. After Theo's IV was started and he had a couple bags of fluid pumped into him he started to perk up. Then it dawned on me...his face. It was pink and plump again. I could no longer see the obvious line of his jawbone. That bony jaw was looked like it did when we brought him home in emaciated condition.

Theo weighed 22 pounds yesterday at the ER. He was 25 pounds in Kansas City two weeks ago. That just goes to show how fast a little guy like Theo can go downhill. He was in shock when we arrived at the ER. I'm more frightened now than I was at that moment, now that I understand what I was seeing and couldn't process.

Here's the best news of the day, and I firmly believe it is because of all the prayers on his behalf: Theo is doing great!!

He's been moved out of ICU to the pediatric floor. He's not hooked up to a bazillion monitors and oxygen anymore. He's just been snoozing hard. God willing, his bloodwork improves some more tomorrow and we can go home in the afternoon. Please let it be so!!

Look at my peaceful little angel.



Thanks for your prayers and encouragement. I love you. Yeah, you.

Caught looking.

Tonight I took Ralph to an event at a church that we do not attend. Lots of families with children were in attendance. Ralph was very well behaved at first. He sat on the floor next to his brothers and paid attention to the speaker. Such a big boy!

Then I noticed it.

Next to Ralph and his brothers sat another little boy, probably 6 or 7 years old, who was staring at Ralph. This boy looked puzzled. I could almost see the gears turning in his mind.

I found myself staring at the boy who was staring at my son.

Intrigued, I imagined what he might be puzzling over. I wondered if he had ever seen a person with Down Syndrome. My guess is no. I'll bet that Ralph's appearance was just barely different enough to make him wonder, "what is wrong with him?"

I watched him watching Ralph for quite a while. Then it happened.

He got caught looking!

Ralph caught him. They locked eyes. After a pregnant pause Ralph busted out his best and biggest smile, the one where his eyes turn into little crescent moons, and he waved "hello!" to the other little boy.

This dark, mean old world needs Ralph and more people like him. He's not an angel. Close, but not quite. Still, he's breathtakingly open and friendly.

I'm going out on a limb and proposing that people with Down Syndrome make the world a better and more loving place. More fun for sure! That's my experience anyway. Check out Ruby and Theo and let me know what you think: