One Hundred Good Wishes

One Hundred Good Wishes is where community supports adoptive families. It is a free fundraising web-based tool for adoptive families seeking to raise partial or full support for their adoptions. One Hundred Good Wishes website was inspired by the Northern Chinese tradition called Bai Jia Bei, or “100 Good Wishes” quilt – a tradition which engages others in the celebration of a new life. Like the tradition, adoptive families can use this site to not only share their adoption journey and gather good wishes as a keepsake, but also to use as a resource to raise support for their adoption endeavor.

How does it work? If you are in the process of adopting and are homestudy-approved, then you can set up a FREE One Hundred Good Wishes page to raise financial support for your adoption! Create a One Hundred Good Wishes page with a bio, explaining your adoption endeavor and your fundraising goal. Invite friends, family, and others to visit your page and give a good wish. Those who visit your page can leave a good wish message, upload a picture, and give a monetary donation. Donations are made directly to your PayPal account and there are no fees to use the One Hundred Good Wishes service.

Even if you are not currently in process of adopting, please help spread the word to other families that may be interested in fundraising for their adoption. Visit the website and join One Hundred Good Wishes on Facebook!

it’s all from the waist down

Fu Gao Mei’s legs, sent in an update from China

(The post below was written a few weeks ago on my blog, Tell Her This).

Yesterday was our first spinal defects clinic, where we met with her entire ‘team’, including her neurosurgeon, urologist, pediatrician, orthopedist, developmental psychologist (or was he a psychiatrist??), physical therapy, social worker, gastroenterology specialist, and her nurse practitioner who connected us to all of these people. It was here we discussed and learned about her condition, and the complications that have arisen from it, and how to manage them head to toe (or more aptly in her case, waist to toe).

We walked away with so much information it may take me some time to process all of it. Thankfully they are sending us a full written report of all the aspects of her care that we reviewed. I was impressed with this comprehensive approach and am grateful we are able to use this facility rather than the one here in our town (they don’t have a spinal defects clinic anymore, unfortunately). It’s nice that the members of the team are talking to each other, keeping her goals comprehensive while they each focus on their area of expertise.

Here’s what we know.

The neurosurgeon suspects she has a myelocystocele as there is still a pocket of cerebrospinal fluid (a fluid filled cyst) at the base of her spine. From what I’ve read, it won’t be possible to know definitely if this is her actual diagnosis. She also has tethering of her spinal cord, which for the time being we are just “watching”. I am considering a second opinion as apparently the tethering is pretty significant. And though we are certain her brain is not affected, we will do a base-line MRI in the next month (scheduled now for end of March).

The orthopedist wasn’t overly concerned about immediately addressing her contractures, but I disagree. Call it instinct, but I feel the sooner we begin working on correction, the better. She cannot wear any shoes since none of them stay on- and while the social aspects of this are absolutely relevant, I’m more worried about the practicality of foot covering :O) We’ve had our coldest winter in years and it’s been a struggle keeping her feet warm. Not only that, but she’s really active and is out on the jungle gym with her peers, not to mention crawling everywhere- so shoes will better protect her feet from injury. I got the feeling (as much as I find this doctor to be incredibly nice) that he believed my main concern was whether or not Ellis could wear “pretty shoes”. At any rate, Monday at P.T. I will begin talking to her therapist about how I go about beginning the process of serial casting (this was recommended by 3 people we met with yesterday, surgery being a last resort). ** Clarification since you see the photo above, she does not have a clubbed left foot, she is possibly missing tendons on the ankle or they are ineffective. You can see her right foot is contracted pretty severely (points downward), often referred to as “foot drop” **

We learned from the developmental specialist what we already knew: she’s shy. He suspects she may be the type that is so “brainy” that she will lack in the more “normal” range of social skills, though he’s not that concerned. I was as shy as she was. I have no worries at all. Once she opens up to you… well, you’re IN like Flynn (not QQ! Though I swear I would have stolen that name if didn’t belong to such a great friend’s kiddo). We also learned that we are her primary speech therapists, and hearing it from that perspective really opened up how important my role is- not just as her mom, but as her teacher.

With the GI specialist, we talked about potty training and we’ll make that a part of her routine in hopes of achieving “social” continence, since she has a neurogenic bowel (though sometimes she does tell us when she needs to “cho cho“- I’d say 60% of the time or more).

Physical therapy made sure we were connected with the right people here in our town to begin serial casting. They checked how she was doing in general and basically talked about her improvements since we’ve come home.

Her urologist (who I absolutely found to be thorough, concise, & patient) talked about the results of all her testing last week. This is what we were most anxious to hear about. And the news, well, it was disappointing, but not something we can’t manage. First, she doesn’t void on her own at all. A neurogenic bladder, unlike ours, is cone shaped and rippled with muscle along the outside. Due to the interruption of nerve signals from the spina bifida, when her bladder begins to contract to “go”, her urethral sphincter closes- which is common with her condition. Normally, as we void, that sphincter automatically relaxes. So, at most, she leaks urine. We will begin intermittent catheterization within the next week or so (we go back for a separate appt next week). **update: We’ve been cathing now for 2 weeks** It’s necessary she be cathed in order to prevent infection from non-sterile urine being present in her bladder (which is what happens when you have urinary retention or residuals that are very high after voiding). Since she’s had 2 known very severe infections (UTI’s) with a big bug, and then one less severe bug, along with many high fevers, this is crucial. And she’ll learn to cath on her own, probably fairly quickly I suspect since she is a “can do” kinda girl :O)

As for her kidneys, well, we knew she had some reflux into her left kidney, but not how much. We were told it was a Grade 3-4 (which is moderate to high). Not so good. I asked about the amount of damage that can be caused by that- especially in light of the fact that she’s never been cathed and likely has had this issue for the 4 years prior to coming into our lives. He said there was still a lot of “healthy” tissue and that he didn’t suspect she would ever need dialysis. However, what damage has been done is irreversible.

We also learned she has hydronephrosis of the right kidney (and this kidney is smaller than her left kidney). What was baffling to the doctor was that her ureter appeared normal, so there is a chance that there is some other cause of the swelling- a primary obstruction that is not related to her bladder. For the time being, we’ll assume it’s her bladder due to her history, and with daily medication and catheterization, he hopes to see improvement on her next renal ultrasound in 3 months.

She’ll not only be on medication to help relax her bladder (so she can hold more urine, preventing the back flow), but also on a low dose antibiotic indefinitely to prevent and treat colonization with various bacteria. This wouldn’t be necessary if she didn’t have a higher grade of reflux into her left kidney. Thank goodness this amazing daughter of ours is such a trooper at taking any and all medicine, even the worst of it, in fact.

We have our challenges ahead and will one day be facing surgery for her bladder, but probably not until she’s school aged. We were informed that she will probably face detethering of her spinal cord at some point, if not multiple times, in her life. She may have to have tendon releases done surgically if the casting isn’t successful. And depending on how well we can manage her bowel, there also may be a procedure in her future for that.

But every single bit… all of it… will be worth it to help our perfect little girl live a life that is independent, and as fully functioning as possible.

She’ll be guiding us most of the way, I would imagine. She has that way about her.

Yesterday, as we were leaving the clinic, I asked her:

“Did you have a good day today?”

M-n-M: “Yep”

Me: “Is everyday a good day?”

M-n-M: “Yep”.

I’ll take that to the bank with her any day of the week and twice on Sunday.

Whatever Wednesday

Each Wednesday we post links from the previous week that touch on special needs adoption. Our hope is that these small snapshots provide you with a glimpse of life after adopting through China’s waiting child program… both the long-term blessings and the challenges that come with parenting a child with special needs. We also hope to raise awareness about a variety of special needs.

the mishapadoptive momma (China) Kris at Tell Her This… a momma describes the huge impact of something that the local director calls “a slight mishap”

A reminder
adoptive momma (China) Sandra at The Daily Grind… recent test results show a momma that she needs to make a few changes with her daughter, who is mainstreamed with a cochlear implant

our current stateadoptive momma (China) Kristi at Fireworks & Fireflies… describing their transition during the first month home and an upcoming appointment with a pediatric ophthalmologist

“She talks funny!” adoptive momma (China) Chris at Layers of Life… a recent classroom discussion between two young children about cleft palate

The Negotiator foster mom living in China Carrie at Love Grows Here: The New Day Foster Home Blog… a funny story that also happens to describe some of the dental challenges one can face due to poor nutrition

SN List Rule Changes: The End Resultsadoptive momma (China) the Rumor Queen at China Adopt Talk… describing three hypothetical situations with the new rules in place

Sign the Petition!!!!adoptive sister (China) Emily at Twice in 2010… a link to the petition for vaccine waivers and why this is important, especially for children adopted through the special needs program

The Scent Of Love

When I was little, my mother would sometimes bake cookies before I came home from school. I’d smell the chocolate and sugar and vanilla as I walked into the house, and when I saw my mother standing at the top of the stairs, I felt the love she had put into my afternoon snack.

If love has a scent, for me it is that.

For my older four children, I think the scent of love is the fabric softener sheets I put in the laundry. Sometimes I catch them inhaling deeply as I hand them a load of still-warm towels. “This smells so good, Mom,” they always say, and I smile and think that one day they will be adults and they will catch a whiff of fabric softener and they will remember my fingers brushing theirs as I handed them freshly washed laundry. Perhaps, too, they will remember the yeasty scent of home made bread. It is something we make together often, the kids and I. Many hands measuring and kneading and shaping. Many eyes pressed to the oven door as loaves rise and brown and send out the scent of comfort and patience and anticipation. One day they will bake their own loaves of homemade bread, and they will remember how my love carried them through childhood and adolesence and on into adulthood.

For my youngest daughter, the scent of love is much different.

We stood, you see, me and my little girl, on the curb just outside the grocery store. A car passed by, bathing us in a white cloud of exhaust. I wrinkled my nose at the stench. Disgusting. Filthy. Horrible. Those were the words I was thinking.

“That smells good, Mommy.” Cheeky said, her comment taking me by surprise.

“What?” I asked, knowing she couldn’t be talking about the horrible cloud of exhaust.

“I don’t know.” She responded, and she frowned, lifting her head and inhaling deeply. “It smells like Chongqing.”

And I saw a thousand memories in her face.

Just a few days later, we went for a walk. Me and the entire crew. We walked down our road toward the school and the library. The day felt like spring, and I am sure we all felt renewed. An old truck chugged up from behind us, its engine spitting out a thick gray cloud of pollution as it passed.

“Gross!” My four older kids cried, with various over-exaggerations of coughing and gagging.

“What?” Said Cheeky, her head tilted to the side as she breathed deeply. “It smells good.”

And she reached for my hand, squeezing tightly. “It smells like Chongqing.”

She didn’t say more, but I heard her unspoken words. Words that come from something deep inside my precious girl. Words that I know are there but that she cannot yet put her mind to. Exhaust is not just the smell of the packed and hectic city she was born in. It is not simply the memory of a place she once lived. For Cheeky, exhaust is like chocolate chip cookies and fabric softener and home baked bread. It is the scent of home and the feeling of love that goes with that.

Eight months after bringing my daughter to her new life, I am struck anew by all she has left behind. Familiar faces, familiar arms, familiar laughter and voices. The sounds and feel and scent of all she had ever known.

And I crouch down on the road with her, I lift my own face to that cloud of exhaust, and I picture China Mom holding my daughter’s hand. I picture China family walking along the busy streets of Chongqing, guiding the white-haired beauty they were loving for another family. I feel their love as surely as my daughter does, and I take it in, drinking it deep into my heart.

“That,” I say, as I hold her hand and look into her clear blue eyes. “Is the smell of your China home. And when you are an adult and you walk down the street and you smell that smell, you will think of your family there and you will remember how much they loved you.”

“Really?” She asks and smiles.

“Of course.” I say, wrapping my arms around her as my other children skip ahead, still coughing up the billowing gray smoke.

And Cheeky leans in close, and she presses her face to my old leather coat and inhales deeply.

And I wonder if perhaps one day that will be the scent of my love for her.

The photos above are Cheeky on her last day in Chongqing and on her first big hike in fresh Washington air. The ones below were taken those same days. The juxtopostion of old life and new is striking and reminds me that to truly love my daughter I must always strive to value and maintain the memories of her other home.

shared list changes

March 8, 2010

The CCAA has made an announcement regarding the process in which families will be able to lock in files of children on the shared list.

From the statement, the CCAA addresses the frustration of agencies to be able to lock in files for families already LID, due to the overwhelming traffic when a new shared list is released. In order to relieve some of the backlog of families waiting to be matched who are already LID, the CCAA is now enforcing a policy that LID only families have preference when a new shared list is released. Only LID families will be allowed to lock in a child who has been on the shared list for less than a month.

Additionally, up to 72 hours may be allowed for potential families to decide whether or not to permanently lock a child’s file.

Parties, Cell Phones, and Mercenaries: A Hep B Primer

Have you read many medical journals? Have you perused through any articles in the Journal of Gastroenterology? Let me tell you, I’m not completely convinced they’re written in English. So when my big kids started asking questions about their sister’s hepatitis, I had to get creative. If you happen to be a pediatric gastroenterologist/hepatologist, just look away.

There’s a party going on in Cholita’s liver. It’s been going on most likely since she was born. These party-goers (Hepatitis B virus) are not the type your parents would want at their house. One look at them, and you know they’re trouble.
The dad sitting on the porch (immune system) is unfortunately clueless. This is a newbie dad (a baby’s immune system) and he just hasn’t had enough life experience to know a bad actor when he sees one…..Seem like nice young men….. A more experienced dad (adult’s immune system) would have seen these guys coming from a mile away and gotten rid of them before they could even step foot through the picket fence (acute infection= less than 6 months).
But this dad is naive and the thugs soon have a rip roaring party going on in the liver house. The partiers are having such a great time, they keep texting their friends (replication) and pretty soon the house is bursting at the seams (high viral load). So the party goes on and things start to get a bit messy (inflammation). Dad continues to think all is hunky dory (immune tolerant phase). This can go on for years.
Eventually, Dad wises up and when he does, he’s not pleased with what he sees. He grabs his water gun and starts shooting. Unfortunately, these thugs have jumped onto the backs of his sweet little babies–the liver cells. So, he’s shooting at the thugs, but when he hits a thug, he also hits a liver cell. Virus thugs and liver cell babies are falling in large numbers (high ALT). Thankfully this dad has LOTS of liver cell babies and when one of them goes down, another one grows and takes its place. He keeps shooting and the party seems to be clearing out (viral load going down). Unfortunately, the thugs don’t really want to leave. They love the liver house and keep texting their friends. It’s an all out battle (immune clearance stage). Can the immune system dad shoot faster than the virus thugs can text? Sometimes he can, but most often he can’t.
The immune system dad is working hard, killing off thugs in large numbers, but sometimes he needs to rest. Sometimes he needs to refill his water gun. When that happens, the thugs go into texting overdrive. Dad comes back with his full water gun and sees that the party is even bigger than before. And so the battle goes on. With thugs and liver cells dropping like flies, you can imagine that the carnage gets a bit messy and the liver house is starting to show some wear and tear (fibrosis). Poor dad isn’t making progress and the neighbors are complaining, so we need to send in reinforcements. We have two options: mercenaries (interferon) or cell phone smashers (antivirals).

The mercenaries are well-muscled killing machines. They make dad’s water gun look seriously wimpy. Now, we like having Rambo on our side, but frankly, he makes us a little nervous too. He’s shooting away at the virus thugs and mowing them down in great numbers, but he’s also a little unstable and sometimes he shoots at completely innocent party-goers, just hanging out at the punch bowl (platelets, neutrophils, red blood cells, etc.). Anyway, what we hope the mercenaries can do is put an end to this party all together (stop replication, HBeAg-). The very BEST thing that could happen would be if the mercenaries, with the help of dad and his water pistol, could wipe the thugs out so thoroughly that a permanent guard is placed on the porch (surface antibodies) and the party can never start again.

If mercenaries aren’t your cup of tea, there’s also the option of the cell phone smashers. They’re trying to stop all of this texting-your-friends nonsense (replication). The only problem with this, is that the thugs are determined to keep the party going. Maybe you can smash most of the cell phones, but now a few have showed up with steel-plated cell phones and our antiviral cell-phone smashers can’t seem to stop them (mutations). Pretty soon, everyone has the steel-plated cell phones and we need to try a different breed of antiviral cell phone smasher. It might work, it might not. There are only so many cell phone smashers and the virus keeps making stronger cell phones that are harder and harder to smash.

So Cholita’s party was out of control. She had so many thugs crammed into her liver, we couldn’t even count them anymore. Somewhere over 5 billion. Daddy immune system shot millions of them down, hundreds of millions as a matter of fact, but when he took a break to reload his water gun, a billion snuck back in. The doctor took a little sample of Cholita’s liver house (biopsy) and it confirmed that the party was making a mess (fibrosis). We knew Rambo could be dangerous, and yes, he made us nervous, but Daddy immune system needed help. If he was willing to keep shooting with his water pistol, we’d send in the machine guns.
At the start, the machine guns seemed to be winning. But as time went on, the partiers just turned up the music and texted faster than ever. At the very end, somehow, miraculously, not a single thug could be found. It was time for the mercenaries to clear out too, and so once again, we’re left with only Dad on the porch with his water pistol.
In two months we’ll check to see if the thugs are still gone and if a permanent guard has been installed at Cholita’s garden gate. For now at least, the party’s over. We’re hoping forever.

No hands but mine?

20060923 reunion 008

This summer will mark the 5th and 4th anniversaries of our girls adoptions and, as of this writing, I’ve never spent one single night away from them.

Okay, that’s not entirely true. I did spend the night at the hospital with Maddy when she had her surgery and Gwen stayed home with Daddy. It wasn’t a good night for her and it ended with lots of crying and vomit. Naturally, Daddy’s not in a hurry to repeat the experience so it looks like I’ll never be able to spend a night away. I’m not complaining about missing “Mom’s Night Out” with my girlfriends. I’m just sorry to miss friends weddings and funerals and other big life events. If money and time weren’t a factor, I could take the whole family to these things but obviously money and time are factors.

I guess my question is: How can they ever learn that “Mommy always comes back” if Mommy never leaves?

Double Happiness

Whatever Wednesday

Each Wednesday we post links from the previous week that touch on special needs adoption. Our hope is that these small snapshots provide you with a glimpse of life after adopting through China’s waiting child program… both the long-term blessings and the challenges that come with parenting a child with special needs. We also hope to raise awareness about a variety of special needs.

The Certainty of “Just Knowing”adoptive momma (Korea) and adoption researcher Dawn Davenport at Creating a Family… a reader writes in, asking what should happen if one spouse feels certain that they have “found” their child, but the other spouse feels unsure

hoping for a parasite
adoptive momma (foster to adopt and Haiti) Kristen at Rage Against the Minivan… some tests showed unusual results which lead a mom to actually hope for a parasite

down for the count — adoptive momma (China) Simply T at Just Add One Chinese Sister… describing a recent hospital stay due to renal reflux

What’s Bugging Me Todayadoptive momma (China) Shirlee McCoy at And Then There Were Seven… a post that touches on navigating the waters of older child adoption

A turn down memory lane
adoptive momma (China) Nicole at The Baker Sweets… a momma shares her heart while she thinks back to her son’s condition at the time of a adoption

Worry… what good is it?an adoptive momma (China) at Room For At Least One More… a momma shares their thoughts and emotions as they wait to travel

our road to an apraxia diagnosisadoptive momma (Russia) Bethany at Life With Bubba, Chicky and Nicka… describing their journey to an apraxia diagnosis for her biological child, beginning with some blog comments left by speech-language pathologists (SLPs)

Beneath the tough exterior

This post was written yesterday by my friend Kristi of Fireworks and Fireflies. After reading it, I asked her to please let me share it with all of you. Kristi is currently in China with her family finishing up the adoption of this little beauty, now forever known as Darcy.

She’s stunning, isn’t she?

Ian and I continue to be blown away by this pint sized addition to our family. She appears so “tough” and confident at first glance.

I keep having to remind myself that she is not yet three. In fact, one of the other moms thought she was almost five. It’s because of how tall she is and how much she can do on her own.

There have been times as I’ve watched her as she brushes her teeth, washes her hair, or try to put on her own clothes and wondered what was going on in that little mind. Is it all to impress us? Does she feel like her “big girl” abilities are necessary for us to accept her?

It would be so easy to just back off and let her do it all by herself. But every now and then the tough exterior weakens a bit. She’ll stop fighting me as I step in to help her turn her shirt the right way or lift her up to the sink instead of letting her drag the stool over so that she can reach the faucet.

And then there are the moments that she’s tired when she’ll start rubbing the back of her left arm over her eyes and whimpering ever so slightly. So I’ve been scooping her into my arms and soothing her in my little bits of Mandarin. And each time she lets me cradle her for just a couple of minutes and then the smile returns and “brave girl” Darcy comes back.

Until last night. She and Caleb got into a disagreement over whose Kung Fu Panda techo music spinning top was whose (never mind that the second and third ones were laying right beside them) and Darcy slammed the pocket door separating the bedroom and living room. I gently told her no and opened the door, and then she slammed it again. So the no was a little firmer the second time. And then the wall came down.

I held my baby girl for some 30 minutes as she sobbed. While it may have started because of the scolding, the spell had nothing to do with being told no. It was more about getting used to her new life. It was heartbreaking, but it was time. And while I hate being part of the cause, I’m so relieved that she’s starting to trust me enough to let down her guard. I also have no doubt that there will be more grieving to come. Who wouldn’t be sad, angry, confused, and scared if their world suddenly drastically changed. I don’t know if I could be as brave as she is.

But one of my favorite songs by Third Day keeps running through my mind. It says, “I can’t stop the rain, but I can hold you ’til it goes away.” (It’s a beautiful song, check it out!) So I will be there from now until the rest of my life to ride out the storms with my sweet little one. Because we’re family now. And that is the miracle of this journey…

Grandfathered I-600As

News from The Center for Adoption Policy regarding grandfathered I-600As.

Posted on March 2, 2010.

March 2, 2010. Limitations on Grandfathered I-600As. CIS has posted on its website a Q and A detailing the rules pertaining to grandfathered I-600As. This is relevant for families who were in the adoption process prior to April 1, 2008 and wish to use the orphan processing program for Hague Convention countries. We urge all ASPs and families to read this document to see which changes they can make to their I-600As in Hague countries and still retain grandfathered status. In particular we would like to point out that potential adoptive parents can change the country that they sought to adopt from but they may not use the new I-600 to bring home more children than the number approved by the original I-600A unless they are bringing biological siblings home. Therefore if a family with a grandfathered I-600A was approved for one child and now they wish to bring home a second child simultaneously, the family must file an I-800/A for the second child.

Read more HERE.