Tuesday, October 25, 2011

Photo catch up...

I'm not so sure how Ralph is doing since he stopped getting his pulmonary hypertension medication. What do you think of those dark circles under his eyes?

He's still full of energy. Playing in front of the mirror is his favorite thing.

This is my view in the morning. And at bedtime. All three of them were making poop sounds and laughing! And, do you know anyone who sits Indian-style on the pot like Ralph? So weird.

Here are some leftover photos from our fun day with the McDonald family. This girl is cra-zay about Zhen!

I think this is the best photo we could get of the three Ukrainian boys! ha! At least TJ knows how to ham it up.
See what great lengths we went to? Sit. Stay. Get back up there. Sit. Stay. Smile!!
Cute! Toby was giving Theo some valuable advice.

Thursday, October 20, 2011

Crazy boys

I had so much fun last weekend that I'm still recovering! Here is a small taste of the craziness that I enjoyed while trying to get a nice photo of these three Ukrainian boys:

Is it me, or do these boys all have the same exact color of hair?

Sunday, October 16, 2011

Challenge FAIL

I've failed the 31 for 21 challenge. But that's ok with me.

You see, I have stayed up late for years to give this boy his medicine at the proper eight hour intervals. It would be easier, and earlier in the evening, if he didn't go to afternoon preschool. But, it is what it is.

Or, what it was...

Ralphie had a cardiology appointment last Friday. During his heart echo, I could see that his pulmonary pressures were as low as I had ever seen them. The doctor confirmed this to me later. Low is good. Got that?

I had the choice of letting Ralphie continue to grow out of his pulmonary hypertension medicine, or giving him another two month trial off of the medicine. If you remember, we tried this earlier in the year and were disappointed.

I chose the two month trial. I have no illusions. I'm well aware that this might not work, so my hopes are not high.

But, now I get to go to bed at the same time as normal people. Don't be surprise if this blog continues to suffer the loss of my prime late-night blog time. It's OK.

Beating PH and grinding it into the ground trumps late night blog time. Can I get an "AMEN!"?

Thursday, October 13, 2011

Birthday boy.

I was very busy with my birthday boy tonight. He'll be the first to tell you that he's mommy's boy.
Over sweet & sour pork tonight, he told me that he wants to be an animal doctor. This is new!
One thing is not new. Those eyes. What would you do for eyelashes like that? No fair!

Wednesday, October 12, 2011

Looking back tonight

Ralph is four years old. He has great, I mean GREAT, receptive language. He knows heaps of signs. However, he just struggles to hard with the spoken word.

Well, that is starting to change.

Umm, yeah. He's got one word that comes out clearly and without a doubt. Can you guess?

Yup, we have "no." AND, we have a boy with a mind of his own.

When we get home from church and it's time to get out of the van, Ralph slips into the back of the van and give me a "no!" At lunchtime, when he slips away from the table to eat his sandwich on the couch he gives me the "no!" When I ask him to stop strangling the puppy with his particular brand of affection, I get the "no!"

On days like today, it helps to remember when he was really little and really helpless. haha!

Here is Ralph in his car seat for the first time ever, on the way home from the hospital for the first time ever.

And asleep in his own crib for the first time ever.
No way would this sweet little thing ever backtalk his momma.

Tuesday, October 11, 2011

Ralph and church.

Gathering with our church family on Sunday morning sets the stage for the week. Without it, I feel a bit disoriented and off kilter. It builds me up, too. So we make it a priority for the whole family.

Over the past four or five years, several children with additional needs have either been identified, started attending, or have been born into this church family. As a result, a Friendship program has been initiated to assist children who need individual assistance to participate in Sunday school classes. There is also a Friendship classroom which is self contained.

Ralphie has been included in the nursery setting since he was very little. He used to push his little oxygen tank around in a toy shopping cart! I've just been so very pleased with the way he has been received and loved. We have pushed through fear, at times, and made things work.

Now that Ralph is four, he is too old for the nursery. I had a little anxiety attack earlier this fall when I realized that he would be sitting through services now. He was just not ready for that.

Thanks to the Friendship program, Ralph has several volunteer helpers for Sunday school. One has worked with him for over a year and is actually a sign language interpreter. It is wonderful to see them working and signing together. She can only attend two Sundays each month due to her work schedule, so Ralph has two other young women who alternate assisting him in Sunday school on the other weeks.

But what about the worship service? What was I going to do about that? Does he look like the kind of child who can sit quietly and listen to a sermon?

This is where the Friendship classroom comes into play. Our fantastic Friendship coordinator was able to find one more helper for Ralph each Sunday. This lovely young lady sits with our family in the back row of the worship service during the announcements and the worship songs. I get to hold Ralph in my arms while I sing praises. I get to encourage him to sit quietly and patiently. When the sermon begins, he and his helper slip out the back door and head for the friendship room to play until it is time to go to Sunday school.

Isn't that great? It works so perfectly! I really feel spoiled by all the love and care given to me and my family at church gatherings. I'm so grateful for the ladies who give up their time and energy to work with my children.

Next time, Zhen and Theo!

Monday, October 10, 2011


I'm not feeling so hot tonight. HOMY has offered to stay up and do meds for me, so I'm going to hit the sack.

In the meantime, check out the new blog for Project TLC. It's a work in progress but stop by and "follow." Zhen says do it!

Sunday, October 9, 2011


I was going to title this post "A Typical Sunday," but upon further reflection, there is no such thing for our family. Instead I will just tell you about today.

Dad is an usher at church and today he had to be there at 7am. My teenager was away at an academic weekend at KU. You know what that means for me. Yup, me vs. eight slippery little kids. The goal is to leave the house at 9:15.

I get Zhen and Ralph up first. The go straight to sit on the potty. I ruffle Theo's hair and then I raise the blinds in the little boys' room so they don't get destroyed by rough hands later in the day. Then I move Zhen's crib so that it sits on top of the air register. If I don't, the boys will stuff all their toys down there later.

Hopefully, the little boys are still sitting down. Zhen is great. He always sits until I tell him to get up. Ralph won't sit too long. When he is done, he is done! Theo waits a little longer while I get Ruby up and sit her on her potty next to Zhen.

Next Theo gets a fresh diaper and heads for the highchair. He gets started on breakfast while I help Ralph, Zhen and Ruby get pants on. Next we flip on the radio, because our rule is "no TV on Sunday morning."

At this point, I'm looking around for my older children. I assign a buddy for each little child a buddy to make sure they eat. We do bagels or cereal before getting anyone dressed. Someone always spills something, right?

This the point where I start freaking out because I didn't lay out clothes and socks the night before. So I start the hunt for matching socks. Ralph, Zhen and Theo get pants, socks, braces and shoes on. No shirts until we are ready to load the van.

Next I have to convince my fuzzball two year old that beauty shop is fun. Sometimes it works, sometimes not. Today she tolerated me combing her hair just long enough to get two crappy little pigtails in place. Good enough.

Everyone is ready to go. Except me. I'm still in jammies and haven't even considered eating. I get 10 minutes to throw on some clothes and a little makeup and we load up the van. I'm usually sweating, so it's nice to leave the house and hit the cool air. Ralph gets buckled up first or else he will end up in the driver's seat pushing buttons and "driving." The other three littles are easy and we roll down the driveway at 9:30.

Late again.

Next time, adventures in the church building.

Saturday, October 8, 2011

Buddy Walk fun!

Can we get going already?
Today was our annual, local Buddy Walk to raise awareness for Down Syndrome. It's one of my favorite events each year. I love gazing at the faces, lit up by the unmistakable beauty of an extra chromosome.

Oh, and the unmistakable flop-n-drop!
Buckle up!

Grab your blue gorilla! And go find your picture along the route.

The event ended too soon due to the arrival of chilly rain while we waited in line for food. Another disappointment is that there were no medals left for our children as they crossed the finish line. I didn't even get photos of that.

On a positive note, we won a gift basket in the raffle and it was delivered to our home by our good friends, the Hendrich's. Hanging out and chatting with them for a few hours was so fun!

October is off to a smashing start!

Best month of the year.

Hands down.

Friday, October 7, 2011

Meet Bruno.

Meet Bruno. One of the newest members of our family.
He is an English Pointer. For a bird dog, he's extraordinarily calm and mellow. He officially belongs to Jordan.

In keeping with our family's adoption style, he has a minor disability. haha! He's missing almost half a hind paw and a toe on a front paw. He was attacked, along with his puppy brothers and sisters, by an unknown varmint as a wee little baby pup. Could have been a rat, or a tomcat, or who knows.

He's settling in with our family and growing very fast!

I just had to share this photo of Ruby eating beets. This was our afternoon snack. She's so open minded about trying new foods, especially when the other children are away at school. There was no one around to make disgusting faces and noises when I opened up the can of beets!

I actually got some video of her saying, "I love beets!" I'll be saving that for when she's older and refuses to eat her veggies.

Thursday, October 6, 2011

The unexpected.

Parents of babies and children, and adults too, I suppose, with Down Syndrome are typically very deeply in love with their children. It is not more, certainly not less, but different somehow than the love I feel for my other children. It's a kind of "us against the world" type of love that knits two hearts tightly together.

I'll admit, I often carry a chip on my shoulder when it comes to my boys with DS. Because as much and as deeply as I love them, I'm acutely aware that the world typically sees them differently. As less. As less important. As more work. As more trouble. I've come to expect it. And I'm ready for it. I have built a little wall around my heart. And some tougher skin.

And then...

the unexpected happens.

This boy in the stroller, my precious Theo, started Kindergarten last Tuesday. He is in a life skills program at a small school in a neighboring town, but joins a regular ed Kindergarten class for classes like phys ed, music and library.

The school change was rather sudden for my taste and I was fearful and emotional. So, I dropped in unannounced this week and took a tour of the school with him. I arrived with my old friend, "Chip Ontheshoulder," not knowing what to expect.

Theo walked down the hall between his teacher and I for a good long stretch. I decided to carry him when he stalled out near the library. As we prepared to take a look inside the library a class of children was lining up to return to their classroom.

It was Theo's Kindergarten class.

These precious little children walked out of the library and spontaneously lit up when they saw Theo in my arms. Without exception, and unprompted, each child said "Hi Theo!" and cooed over him as they passed.

I could not help myself, I cried. The walls came down. My heart was softened.

I spent some more time looking around the school after that, but I don't remember much else. I had already seen what I needed to see.

Once again I'm blown away. The little boy who laid starving and alone in a crib for four years has people all over the country rooting for him. Now he has a fan club at his new school, too. I wonder if it will ever cease to amaze me?

Wednesday, October 5, 2011

Beauty shop

Look who is all ready to go to school! One problem...she's only two! Oh well, we'll just start her out at home.
Look who finally has enough hair for pigtails!

If you only knew how difficult it is to get her to allow me to even comb her fuzzy, curly hair! We play a game called Beauty Shop. She sits on the bathroom counter top where she can see in the mirror, with her toes in the sink, with the water running slowly. I carefully pick out the knots while the water distracts her.

Sometimes it works. Sometimes it doesn't. She is strong willed.

She loves to do school. But is she right handed?
Or left handed?

I'm leaning toward left, as her grasp looks a little more natural. But, she does switch back and forth with ease.

She's a treasure.

Tuesday, October 4, 2011

How typical is that?

When Ralphie was a baby I wondered what it was like to have a child with Down Syndrome. I mean, really, he was a baby. He was just like all the other 7 babies I had previously cared for. I was so curious what life would look like when he was older.

Ralph is not a baby anymore. He's four. And now I know. He's just like the 7 other children that have previously raised to this point. For the most part anyway. Communication is his biggest challenge.

He's pure boy.

He's busy.

He's so typical! So much so that I often forget about Down Syndrome altogether.

He's just Ralph.

He puts his underwear on like every other four year old boy I've ever known. How typical is that?

Monday, October 3, 2011

New school for Theo

I never have cried when my children go to Kindergarten. I never got in the car and raced the bus to school to get their photo stepping off the bus for the first time. Just not my style.

Until now.

Theo is so very delayed. When you take the delays caused by Down Syndrome and then you add severe neglect, zero stimulation, and near starvation for four years you end up with a very damaged child. You can take the child out of the orphanage, but it's tough to take the orphanage out of the child.

Theo started preschool in January, going three afternoons per week. He has made some solid physical gains over the past year. In other areas he is just not making good progress, so I asked to have him reevaluated.

Last Friday we had Theo's IEP meeting and have decided to move him to a new school where he will attend 5 full days each week. It's what he needs. It's what he is ready for.

I wasn't prepared for the wall of emotions to hit me. Theo will be gone...all day long...in a neighboring town. He will have more face time with his teachers than with me. I have to buy school uniforms for him. haha! I'm going to miss him like crazy!

This morning his new bus driver called me to make arrangements for transportation. She sounds quite nice. Very grandmotherly. He gets picked up @8:20am tomorrow. Oh goodness, there go the tears again.

I may have to try to beat the bus and get some video or photos!

Sunday, October 2, 2011

He started it.

I never imagined that I would have a child with Down Syndrome.

I had nothing against it, it just never even crossed my mind. Funny, because I have a cousin with DS. I also have a very close friend whose daughter has DS and shares a birthday with me. (I cringe when I think of the awful questions I used to ask her. Boy was I dumb! That's one reason why I don't really mind when people ask me dumb stuff. I remember when!)

Ralph started it.

Because of him I started blogging. Because of him I met some incredible people, some of them doctors! Because of him I go to Buddy Walks every October. Because of him I learned a new language, filled with acronyms and initials. Because of him I learned some medical skills and can change an oxygen bottle in complete and utter darkness. ha!

Because of Ralph, I did loads on internet research on Down Syndrome. In the process, I found that children with DS are still routinely placed in institutions in many countries in the world. In the process, I found Theo and then Zhen, two orphaned (rejected by their parents at birth) children with DS from Ukraine. They are now a part of my family. In the process I met some more incredible people and darling orphan children.

Soon I'll be headed back to Ukraine to try to help those children live better lives.

Ralph started it.

I'm so glad that he did.

Saturday, October 1, 2011

I'm Baaaaack!

I'm back from from my unofficial, lamey bloggy break in observance of Down Syndrome awareness month. Each October, I take the 31 for 21 challenge to bring awareness and education about Down Syndrome.

I have three boys with Down Syndrome. Theo is five years old. Ralph and Zhen are 4. My boys are quite young and so I still feel like a newcomer to the DS scene. It's a scene that I'm proud to be a part of.

If you want to join this blogging for DS awareness challenge, visit HERE and sign up. If you have any questions for me, leave a comment. Happy October!!