Monday, January 31, 2011

Poor little Zhen.

Poor little Zhen. Here he is in October. Can you tell he has DS?

Once again I have disappointed myself.

Zhen and Theo went to the eye doctor today. Finally.

It seems like we have been running ragged ever since they came home. Why didn't I get them to the eye doc sooner? Well, now it's done and we seem to have a long road ahead.

I'm a little fuzzy on what happened there this morning because I got sucker punched by the doc very early on during our visit. After that it was very hard to pay full attention.

The doc probably thought that it was a compliment to tell me that since Zhen only has mild facial features of "Down's" and that his case of "Down's" is not as severe. huh?

I had to make a quick decision. Do I say "What did you just say to me?" or do I keep my mouth shut and get through the appointment. I chose the latter. Fail.

Here's the big deal, Zhen has a cataract. I didn't think it was a big deal, just something to watch, ya know? No. It's BIG deal. He needs surgery to remove it before his brain gives up even trying to see out of that bad eye.

The doc wasn't sure if we could handle the recovery and rehab that he would need for the next several years. It will be a pain, for sure, but it's always been our goal to give our children every opportunity to be successful and preserving his sight is no exception. I have much to learn and think about. Quickly! Time to put my internet research nerd hat on again.
Oh yeah, Theo gets glasses, too. No drama with him this time. :)

In case you care I have another son who needs knee surgery, immediately. Probably Wednesday. Another son is sick in bed and we'll be lucky if we don't all get it!

Tuesday, January 25, 2011

Wrestling season.

I'm wrestling with trying to decide what kind of blogger I want to be. Certainly there is LOTS going on in this house. I could easily post a laundry list of each day's activities. But really? Do you honestly need to know how proud I am of my new seating arrangement in the van? Or that I leaned on a highchair tray that wasn't fastened properly and it flipped up and smacked me in the nose...HARD?

Maybe I could just keep posting photos of the kids? Grandma would like that one I'm sure. That's the easy way out!

I could get political. Really! I have very definite ideas and core convictions in that area. nah! I might get you worked up with my overheated rhetoric! ha!

I'm just kind of wondering what I have to offer. I'm not an expert at anything. I'm not the perfect, slim, crafty, baking, house cleaning, stylishly accessorized, hand bag hoarding, diet coke sipping mom. I feel perpetually out of place.

But, I have been given a message to share.

Ralph has Down Syndrome.

And his life is GREAT!

And he makes me a better person.

And he makes us a stronger family.

We hit the jackpot! I guess if I get that point across I can consider myself successful at blogging.

Thursday, January 20, 2011

Our big week.

Is there anything that can give a small child more joy than a big box?

I went a little nuts with the camera, but these boys were being so cute and silly piling on top of one another and taking turns in their "house."

What a happy boy! He couldn't possibly smile any bigger than that.

Zhen shut Ralph inside, which Ralph loved!

Ralph and Zhen are now seatmates on the school bus. Tuesday was Zhen and Theo's first official day of pre-school. Today was their first day to ride the bus. Zhen and Ralph sit next to each other and across the aisle is Theo...and his para!
I had to insist that Theo rides the bus in a rear facing seat. He's really only been sitting for five months and he is barely 20 pounds. For his safety he's been assigned a para to ride the bus with him until he can be in a forward facing seat.

Their first day on the bus was a success! And school is going great! I'm really fortunate to live in a great school district. The teachers and therapists at the school love what they do and they seem to enjoy all of my children. I hope this lasts!
Look what I caught Rose rolling through the house the other day!
Ruby fits in a rolling backpack! Why do I find that so funny?

The other big even this week was our trip to the children's hospital in Kansas City. You should have seen me trying to get out of town. It was ridiculous. The first time I left I realized after about 20 minutes that I forgot Theo's required physical report. No choice but to turn around and go get it.

The second time I remembered after driving for about 30 minutes that I forgot Ralph's hearing aids. He was having a hearing aid check the next day. Crap! The good thing was this: I bought a cheapo cell phone the day before. So I called dad and he jumped in the car and I turned around and we met each other about 15 minutes later.

If you know Ralph, you know that I needed to bring a helper with me. It was Thomas' turn. We did a lot of waiting and he did a lot of reading.

Ralph got a little wild and so he got strapped into the baby seat!!

He didn't seem to mind too much! haha!

Theo had a sedated MRI and ABR. They looked at his brain and pituitary gland in particular. Not sure when I will hear any results. The ABR is a sort of hearing test. That test indicated that Theo's hearing is fine but he has fluid in his ears so his eardrums don't move. Aha!

The audiologist we saw was also a sort of magician. She arranged for an ear/nose/throat doctor to see us immediately, without an appointment. He looked at Theo and we talked a bit and then scheduled him for surgery to place tubes in his ears. Wow!

Ralph and Theo both had their neck x-rays done that day, too. Children with Down Syndrome need to have very specific x-rays done to rule out instability in their neck. The pictures were not easy to get, but with the fabulous technology available there, we knew immediately which ones needed to be redone. So glad to have that out of the way!

Ralph got his hearing aids checked. Then I took him to have a booth test. Thomas stayed in the exam room with Theo. Ralph did such a great job in the booth. He let the girls put the wires in his ears and he paid attention. I was very proud!

I was quite certain that this test would prove that Ralph is hearing well and doesn't need his hearing aids anymore. Wrong. The booth test confirmed all of his previous tests and he still needs hearing aids, especially when he has speech therapy.

Lots of excitement this week. I still have some homework to do for Zhen and Theo. The school needs physical forms, birth certificates and immunization forms. They both still need to see and eye doctor. I see glasses in our collective future. After that I think we are finished checking them out. Phew!

Oh, I nearly forgot...yesterday was our 19th wedding anniversary. Funny thing: we had a baby in a crib at the foot of our bed on our wedding night. 19 years later, we had a baby (4 year old - looks like a baby) in a crib at the foot of our bed!

I wanted Thai food, but the weather was bad. It was too icy to drive clear across town. I had to settle for a 5 guys burger. *sigh* My birthday is coming up...maybe then I'll get some Panang.

Sunday, January 16, 2011

Can you guess whose little piggies these are? Aren't they sweet and perfectly yummy?

They belong to my little lovey, Theo. Of course. :)

Theo now tips the scales at 20 pounds 9 ounces in his nicest jammies. So lets just call it 20 pounds. That means that he has gained 7 pounds in the past 5 months. He has grown three inches in height. He has gained 1 inch in head circumference.

Let's put that weight gain into perspective. He has gained as much weight in the last five months as he gained in his first four years.

I call that astounding. A miracle.

New adventures start this week...pre-school!

Wednesday, January 12, 2011


Did I mention that I was going to go to bed early last night? Well, I don't have a superstitious bond in my body but I'm wondering if I jinxed myself or what.

It's cold here. Record cold temps. They even closed school due to the cold. It's really cold. I let the kids play outside the other day but they have not asked to go out one single time since then!

Ralph wanted to go out, too. Just too cold honey!

So just as I was about to crawl into bed last night the power went out. Very unexpected! It wasn't windy or stormy. All our power lines are underground so I couldn't imagine what could have happened. No power here means no heat and no phone.

After waiting in the dark for about an hour I started getting nervous. How cold would the house get overnight? Should I get a hotel room or look for a shelter? I left my teenager in charge and took a drive around town. The whole place was dark and desolate. Spooky. I did not see a police cruiser or a line crew anywhere.

After a little panic attack (and a little pity party) I went to McD's to use the internet. I was able to FB chat with James and make a plan to load up all the kids and take them to his mom's house. I dreaded waking all the children and loading them up. At least the van was warmed up!

Praise God! The power was on when I got back home. I was still mad about missing out on those two+ hours of sleep that I had counted on. I guess the lesson is not to count your chickens before they hatch, right? I learned this morning that some other friends' power was out for over eight hours. Yikes!

Well, today was fun. The children were out of school again. They have a little cabin fever I think. It's been a crazy, loud day.

Rose dressed Ruby in one of her spring outfits. Cute! Inappropriate, but we weren't going anywhere so no big deal. I'm still wondering when her hair is going to grow. hmmm.

Zhen has an ouchie on the back of his ear. He keeps messing with it so this is what I was forced to do. Poor sweetie. He actually loved the arm splints! Strange, huh? A friend told me that he might really enjoy the deep pressure that they provide. Classic sensory need.

I experimented with introducing Theo to Bach tonight. He really enjoys loud noises, so I thought loud music might go over pretty well.

What do you think?

I can't wait for his sedated hearing test next Monday. I really want answers about his hearing. I want him to feel connected to his world and I don't think is right now. I want everything for him. :)

Tuesday, January 11, 2011

Bad news/Good news...

Ok the bad news first. I messed up Ralph's medication schedule today.

The good news? I get to go to bed early because I messed up Ralph's med sched.! *sigh*

I'm looking forward to the quickly approaching day when there is no medication schedule to worry about. I'll be so well rested you won't recognize me!

PS-more good news...Theo is growing! He's broken the 20 pound mark. It must be the vienna sausages he's developed a taste for! haha!

Friday, January 7, 2011

For the last time...

God the last time:

I begged Ralph's cardio nurse for a refill on Ralph's pulmonary hypertension drugs.

I begged for a same day turnaround on Ralph's pulmonary hypertension drugs at the compounding pharmacy.

I picked up the prescription mere minutes before the pharmacy closed for the weekend.
It would seem that my little Ralphie has kicked pulmonary hypertension. We'll get the official word sometime in March. I've prayed for years that he would outgrow this terrible disease. Some children do, some don't.

Ralph is an awesome little boy. If not for him we would not have thought to consider international Down Syndrome adoption. I love that boy!
More from today...Theo ate too many Cheerios. Doesn't he look full? He may be full, but he doesn't ever slow down when eating. I don't think he knows how to stop.

Zhen really enjoyed his soup tonight. Thanks Nancy!! These boys LOVE their food!

Thursday, January 6, 2011

Fun Fam Photo!

What a blessing to have all of our children home for the new year! There may come a day when we are not able to be together for Christmas and New Year's so I'm just treasuring this time.

My plan was to take everyone to the local "pick your photos up the same day" portrait studio on Monday morning. Wes would be leaving town that afternoon and H. and Richy would be leaving early Wednesday morning. Well, crap. Can you guess? Yeah, right. They are closed on Mondays.

Sometimes it seems I can't do anything right.

This is what I ended up doing:
Cool, huh? One problem. Ruby was sleeping so she's not in the picture. Grrr. I may try again in May to get everyone in front of the camera again. That will be my next opportunity to have everyone here. :(

I said goodbye to H. on Tuesday night after being quite entertained by her marathon packing session. Richy is a packing genius, so she was in good hands. Before Rose was born, I used to joke that I would have to wait for my sons to get married to have a daughter. Well, H. is going to fit nicely into our family and I'll be proud to call her daughter! I hope she has a great time at college in Africa this semester.

Theo. Ruby. A match made in heaven. I thought when we adopted Zhen and Theo that we would be dealing with virtual triplets when them and Ralph. In reality, it is more like two sets of twins. Ruby is so excited to see Theo every morning. She likes to hug him and giggle and squeal at him. It's really quite sweet. They act like they were separated at birth.
I caught them playing together yesterday. This hardly every happens because at the age of 4 1/2, Theo is just learning to play. He mostly throws his toys and then goes to find them. Sort of like playing fetch with himself. But here he showed me that he can try to copy Ruby and use toys appropriately. It's huge, it really is.

He's got Mater...which is, by the way, H.'s nickname for Richy's truck! ha!

Since I don't believe that Theo can hear (and who knows when we be able to get him tested for real) I often wonder about him. Will he ever...this. Will he ever...that. Watching him play with Ruby yesterday answered some of those questions for me. Yes, he will. Yes, he is really in there!
I can't wait to get this boy some hearing aids and watch him come alive even more!
Next time...potty training! Wahoo!

Monday, January 3, 2011

Ice cream and cake day!

It is so fun watching Zhen and Theo experience new things. It's fun for the whole family! It was Leroy's idea to sing about the firsts that we witness. For example, for Zhen's first burrito we sang "Happy Burrito Day" to the tune of Happy Birthday. (We were pretty certain that burritos were not an orphanage staple.)

Now that Theo is taking off on eating solid foods the firsts are coming hard and fast! Yesterday was ice cream and cake day for him. And, yes. We did sing to him!! Ice cream and cake was a big hit. Look at his hand...

bwah-hahahaha! Ice cream come to papa!

He always bites the spoon if I'm not quick enough.

I didn't even mess with a washcloth. I just dumped him right in the bathtub!
I wish Masha could have an "ice cream and cake" day. Wouldn't that be nice? I'm giving away a variety of neat items this month in an effort to boost her adoption grant fund. Check it out HERE.

Saturday, January 1, 2011

Up and at 'em!

I was up and at 'em at 8am today. Same as usual. Actually, I'm almost always up past midnight, too. So, no big deal. But, not everyone made it until midnight last night! The number one princess gave it up around 11:45pm. So close!

That's OK. I told her that it was the New Year already somewhere in the world.

Theodore is making a great transition to solid food. He loved our party food! Imagine mushy cracker hair-gel, though and you will understand why Theo had his New Year's Eve party in the kitchen sink!

Meanwhile the Yatzee game was going strong! Have you ever played with eight? It takes FOREVER.

Don't ask me why Jordan had a chef hat on under his party hat. If you tell him he looks strange he just smiles and stands up a little taller!

Mariocart races were happening as the new year rolled in.

Today is blog clean-up day for me. I have lots of outdated stuff on each of my blogs. I need to freshen things up a bit and that just takes some time. It's time. Plus, I'm announcing my Dead of Winter giveaway so be sure to check back soon.
Later today I have a rare treat to look forward to! It's not everyday that you get a new daughter. I guess it is OK for me to call her that since she calls me mom. Yes, today I get to meet the fabulous Heather from California. My son, Richard, insists that she is the "one," so I can't wait! If he loves her, then I know I will love her, too.