Saturday, March 28, 2009

happy birthday

Dear Daniel,

Today is your 7th birthday. 7 already! It's hard to believe. The years have just flown by--it hardly seems possible that it's been over 5 years since I've seen you or held you. You know, your picture is still front and center in our family room, and we think of you often.

I remember the first time I saw you. You were tiny--just over 22 months, but so little I would have guessed only 13 or 14 months. You and I had an instant attachment, almost love at first sight. Later, the director of your orphanage would tell me that once in a while she saw things that were just "so right it hurts" and she felt that way about you and me. I did too. Almost immediately, you were in my arms, snuggled up, and totally at rest. She'd not often seen you that way, and apparently you NEVER sought out strangers. For the time I was there, we were inseparable. I fed you, bathed you, changed you, and rocked you to sleep. We played together and rocked together. As a matter of fact, you wouldn't even leave my side when I had other things to do, and you wanted nothing to do with the others on my team when we were working on some fun activities. The day I had to leave was agony--you somehow knew I wouldn't be back, and you had to be forcibly removed from my arms. Your tears mixed with mine, and your little fingers gripped my back so tightly that I had scratch marks where you had to be peeled away. It was the hardest thing I've ever done, leaving you that day. But I promised that I would do everything in my power to come back to you.

I want you to know that I tried. We all did. As quickly as we could, we started the paperwork to bring you home. But we ran into snags. Then, eventually, the door was closed forever. It hurt. Oh, how it hurt! Losing you was the most painful thing I've ever had happen. You were more that just a dream--you had a smile, a face, a personality, a hug. The pain is still there. Tempered, for sure, but still present. You also need to know that while we couldn't change the world for you, you changed the world for many.

Because of you, a little boy from China now has a family. Ryan came to our family in late 2005. Often, before we knew who he was going to be, I wondered what his connection to you would be. And you know what? You and Ryan share a special day! Today has meaning in Ryan's story...and will always remind me of you, always tie the two of you together. Later, you would change the world for a second little boy from China, as Logan joined us last spring. Ryan needed a playmate! :) Besides those two little boys, your story has changed the minds and hearts of men and women across the Pacific Northwest. There are many families with a new child in their lives because of what we learned through you. So while my heart aches that you are not here, I am grateful every day to God for sharing you with us, however briefly.

My heart longs to know that you are safe and well, growing up healthy and loved. But I have no way to know. I can only trust that God, in His infinite wisdom, put you in a place were you would be loved and protected, much as Ryan and Logan now have that safe place. Please know that wherever you go, whatever you do, there is a family out there that loves you tremendously. We will continue to think about you and pray for you.

Happy 7th birthday. And love always...

Ryan, age 4. Taken Feb 09

Logan, age 4. Taken Feb 09

Friday, March 27, 2009

too many

Apparently I have too many children. Or at least Ryan must think so.

Today I was busy doing Mom things: planning dinner, talking to one of the girls, trying to keep Logan from touching the hot stove, and basically being totally distracted. Ryan called to me in frustration; he'd been waiting patiently for me to come and play with him. A touch frazzled, I snapped, "Hailey! Tori! Brent! Knock it off!! I'll be there in a minute!"

Laughing a bit, Ryan walked in to the kitchen. He put his hand on his hip, looked up at me, and with an exaggerated sigh he said VERY slowly, "Try again Mom."

Oh well. Good thing he knows we love him!

Wednesday, March 25, 2009

a lightbulb moment

We've known for quite some time that Logan is hyposensitive to touch. That means that he craves physical input--perpetually touching things and seeking sensory input through contact. It also means that he's ALWAYS wanting to be touched, held, picked up, or so close that he's basically on top of me. We go through every day with him trying hard to "become one" with Mama. And while I love him dearly, he's a) not the only child in this house with needs; and b) so dang squirmy it's hard to have him hanging on me every minute.

We've finally gotten to a place where he understands that he can be near me, that he can help me, and that he can hold my hand or be right next to me, but I'm not going to spend every minute of every day trying to hold the child who wiggles like jello. That was hard for him, but now he gets it: to sit on Mom's lap, he needs to sit still! Ahhhh....progress.

Then today something dawned on me, and I feel a bit like a heel: Logan is hyposensitive to touch, yes, but his love language is physical touch! Not sure why I didn't connect the two before. The combination is like a 1-2 punch. His hyposensitivity means his brain doesn't receive the same touch sensations that you and I do; he needs much more touch to calm his "touch receptors." Add to it that he receives the "I love you" message best by physical touch, and you have quite the little package. Now, my love language is touch too, but I'm nowhere as undersensitive as Logan, so my needs are met much more simply. This is gonna make me nuts, I think. But maybe understanding it will help.

Feeling a bit slow on the uptake here...

Friday, March 20, 2009


NICHOLAS HAS WHITE COUNTS TODAY!! HIS ANC (absolute neutrophil count, a subset of the white count that is the "critical number" for cancer patients) is sitting at 100!

Healthy people have ANCs that range between 1,500 and 8,000, so there's still a long ways to go. But, it means his own body is making white cells to fight infections. Typically patients can leave the hospital after a transplant when their ANC is 500. Because Nick has some other issues, he's not likely to be able to go home at 500, but he will be able to have a bit more freedom in the hospital setting. At this point, anything is good...

Thanks for your prayers! We are praising God for His faithfulness.

more questions than answers, again

Last week Logan failed a third hearing test. Most people would be disappointed by that kind of news; we were elated. It means that we can finally get hearing aids for him! But in the week that has followed, I've done lots of research and have discovered that, true to form, this is not going to be as simple and straightforward as it seems.

You see, Logan's hearing loss is considered atypical. Instead of having a hearing loss at high frequencies, his occurs at the low frequencies. According to several research articles, it's much less common to have a reverse slope hearing loss (RSHL) like his. While hearing loss affects as many as 1 in 10 people in America, it's much more common in the 35 and up age groups. And of the approximately 31 million people in America with hearing loss, only about 1 in 10,000 OF THOSE PEOPLE has a hearing loss like Logan's. That means about 3100 people nationwide. We're not talking average run of the mill loss here. And because of that, effective help will be much harder to find.

Consider that if the audiology department at the children's hospital where Logan is being seen has 10,000 patients, he would be the ONLY ONE with this type of loss. How to deal with this becomes a very important question. Do I take my research with me every time we see someone? Do I "push" what I know since many/most audiologists won't see a patient like Logan ever? How can I push it if I really don't understand it all? Where do I go to ask questions?? Things like "how do you program these aids effectively, since those who have thistype of loss say that the standard methods of programming don't work for them?" How about for children, who can't give you the feedback adults can?" "Do we need to be worried because his loss is symmetrical, since that is usually a genetic thing?" "Is this related to his cleft lip and palate, or is it a'bonus' issue?" And the best one of all for now: "If he has RSHL (which he does--I have the audiograms to prove it) and people with RSHL typically don't have trouble with speech (which they don't due to the frequencies on which the loss occurs), will getting Logan hearing aids help him when it comes to speech and speech therapy?"

I'M SO CONFUSED!!! And discouraged today. But watching Logan and knowing how far he's come in 10 months, I know that somehow he/we will conquer this too. He's not going to quit, so I'll keep pushing ahead. It's the only choice...

Friday, March 13, 2009


After a trip to the doctor this afternoon with a majority of those who are sick, we've learned that we have confirmed cases of Influenza B. Five, as a matter of fact. Not sure what Brent has since he doesn't live here, but the crew at home all has the flu. Now the big question: how to keep Mom and Dad healthy??!? We're sure open to ideas (as long as they aren't things like leave home til they get well.)

You know, it's not supposed to snow in March! But this was our house on Monday.... Thankfully, the flowers prove there IS hope for spring.

Thursday, March 12, 2009

sick kids and basketball pics

Just some fun pictures from the state basketball tournament. I'm so proud of my girl!!

And so you know, having 6 sick children is NOT FUN! Even when one isn't at home. That's right: all 6 are sick. Some have runny noses, sore throats, and deep hacking coughs; some have a fever plus all those symptoms; and one has even added vomiting to all the other symptoms. Unfortunately, the sickest of the crowd is the one who is not home. He has been so sick we seriously contemplated sending Jim down today to take care of him. But at 19, he passed on the offer. Said he had too much to do and having mom or dad to take care of him would make him a baby and not finish some very important things, so thanks but no thanks. Maybe later if he's still sick....

Off to hang out in the infirmary, otherwise known as the living room. Anyone have a germ-protectant bubble I can live in and care for them from? I don't want this crud!!

Saturday, March 7, 2009

Man oh man

What a night! My big girl Hailey and her team from school won the 1A state basketball tournament tonight. There aren't words to describe it--watching your child succeed with her team at something they've worked hard to achieve for a long time. Hailey and two of her teammates started playing together 8 or 9 years ago, and have played together every year since then with the goal of someday winning this title. She's had some awesome coaches--and a not-so-good coach--and we've certainly had our share of ups and downs. Through it all, the girls have remained committed to one another, regardless of the disparity of talent. They win together, they lose together, and now they get to share the "gold ball" together.

Way to go Hailey! I'm proud of you. :) And the rest of you girls on the team--you're the best!


Friday, March 6, 2009

oh wow...

What a night! Hailey's team played in the semifinals of the state tourney today...and they WON! Tomorrow night they play for the state basketball title. I am so excited for proud of her...and so happy for her. There aren't words to describe the feeling of seeing your child in this place. It's amazing. And it makes me teary just to think about it.

In other news, Nick needs our prayers. He's begun having some mucositis, which is canker type sores in all the soft tissues of the digestive tract. So far he only has them in his mouth, throat, and nose, but they anticipate that it will get worse for the next 7 to 10 days. He's having trouble with lots of nosebleeds that are pretty serious. He has a morphine pump that he's using every 6 or so minutes.... Please keep sweet Nick in your prayers as he goes through the next critical days!

Still no pics, but we're having fun. If anyone wants to see more about the tournament and the write-ups about Hailey's team, go to and look for information about Seattle Christian.


Thursday, March 5, 2009

another win!

So they did it again! Two games, two victories. Halfway to the state title! It's been such fun (but the 9pm games are killing me! Too late for little boys...) Tomorrow's game #3, against the #2 ranked team in the state. Only gets tougher from here...

Now, if I had remembered my camera, things would be pretty close to perfect.

Wednesday, March 4, 2009

1 down, 3 to go...and bone marrow too!

Big day in our family! We headed east to watch Hailey's basketball team play at the state tournament today. They've been ranked #1 in the state at their level most of the season, and now it's time to prove it. And they're off to a great start, winning tonight's game 62-49. Even with a 9pm game. Now it's late and the boys are trying hard to shift gears, settle down, and go to sleep in a hotel room while one big sister, her friend, and Daddy watch a movie, and I sit here on the computer. Fortunately, kids are flexible... Game 2 is tomorrow night at 9.

And Nick has bone marrow. There's nothing I can say that Pam didn't cover in an amazing way. Check out Nick's caring bridge site


Tuesday, March 3, 2009


So tomorrow gets to be Day 0 too. Apparently the donor marrow won't arrive at the airport until sometime late this evening. Once it arrives, it needs to have a red blood cell delineation done before the transplant can take place; hence the second Day 0. Hopefully the transplant will go smoothly then.

In the meantime, we had a great visit! Nick's as uninterested in the camera as ever so no pics, but he's funny and delightful and full of life. Someone came in to help him with his mouth sores. Her first question was, "Nick, how many mouth sores do you have?" Nick looked at her and said, "None." She was dumbfounded. Completely blown away. After she recovered from her shock, she went through her list of questions, then looked in his mouth to confirm his answers. Surprise surprise--he's telling the truth. It seems that Nick's insides are coated with steel! There are NO sores anywhere, and he's feeling quite well. He IS getting TPN (total parenteral nutrition, or IV food) so he doesn't HAVE to eat, but while I was there he had some toast, a ham and cheese sandwich, and an orange. As a bonus, he even let me rub his bald head and give him a kiss before I left.

I'm headed out of town tomorrow to watch my big girl play in the state basketball tournament. Her team is ranked #1 at their level and I can't wait to see what they'll do. Regardless of where they finish, it's been quite a ride. We have known several of Hailey's teammates since they were born, and some of the girls have played basketball together every year since 3rd grade. Some of these girls have big brothers on Brent's team that took 3rd at state in 2005. It's such fun to have the connections with these families! Even with all the basketball, I'll try and post some Nick updates as they come.

Thanks for your prayers, and GO WARRIORS!!

Day 0!

Transplant today! Nick is feeling well, running around the hospital floor like he owns the place, stealing candy, and generally acting like Nicholas. The transplant (essentially a blood transfusion) will happen sometime today. Pray that things will go smoothly and that the marrow will engraft quickly so that he can be on his way to full health!

My little guys and I are headed to the hospital this afternoon to visit briefly before we go out of town for a few days. I'll try and get some pictures to post. No guarantees--Nick HATES the camera.

Thank you for your prayers!!