I wrote a Children’s book!

June 1st, 2014

AlexisBook I wrote a Children’s book! It’s not yet published. If you would like updates about it, or information on how to order it once it becomes available, please join our Facebook group by going here!

Different Like Me is a book about a little girl with arthrogryposis who goes on a grand adventure across the ocean to meet her little brother! Well, if you follow this blog, you already know the story. But you’ve never seen it quite like this! With 25 fully illustrated pages of pure delight your kids will love it! (Oh, wow, I sound like an ad. LOL)

For all of those people who asked me to write a book. THERE! It’s just 25 pages written at a 2nd grader level, but that’s pretty much all I could manage. :)

It was wonderfully brought to life by Lauren Burke from Hey Hey Designs. She does work for blogs and ads and so much more!

This whole project has taken over 18 months to complete, but it has been well worth the effort just to see Roland joyfully freak out every time he sees himself or his sister in cartoon form. :)

Finally a book they love that breaks up the hours and hours and hours of Mo Willems material that gets devoured in our home!

Proceeds will go to support the medical needs of AMC kids (ones not living under my roof :)), orphans with AMC and the families adopting them, and hopefully, if we sell enough, AMCSI!

Also, and foremost, this will promote arthrogryposis awareness! (Or Hall’s Contractures! Or what I’ve been calling it lately just to dumb it down: Multiple Fixed Joints.) Awareness is my main goal, and something I believe in since we need awareness to receive funding, research, insurance approvals, a place at the table, etc.

I have broken up the word arth-ro-gry-po-sis and tested it on six year olds who can now pronounce it! So the hope is that this word becomes easier to say! Laelia and her peers read it fine, even with the big arthrogrywhatsis word in there! In the beginning of the year when Laelia’s reading tutor, Danielle, would come over, she would bring strips of paper with big medical or scientific words on them. Laelia got to keep the strips if she said the word correctly, which was hugely motivating. It was amazing what giant words she could then pronounce once they were read one syllable at a time! Like lepidopterist! It’s lep-i-dop-ter-ist, a.k.a. butterfly scientist! Even my brain goes to mush looking at lepidopterist, but I calm down when it’s lep-i-dop-ter-ist. :)

Please feel free to share our Facebook group far and wide! Thank you!

Arm Surgery Results! (rotational humeral osteotomies)

May 31st, 2014

Once upon a time there was a little girl named Laelia who was born with internally rotated arms due to amyoplasia, one of the many types of arthrogryposis multiplex congenita (AMC).

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It meant her little arms faced the wrong way. Go ahead and try it! Stand with your arms hanging at your sides. Notice how your palms face your body?

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Now turn your arms around until your palms face away from your body.

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Now imagine living life stuck like that. It would affect your…

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Cooking…

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Writing…

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Pushing a stroller…

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Pushing a wheelchair…

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Holding a basket…

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Holding a hand…

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Even holding a magic wand!

This is what Laelia’s arms just did as they hung at her sides.

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On February 12th we had surgery in Philadelphia at Shriners Hospital for Children to remove hardware in Laelia’s legs and do some releases in her thighs. (Our lower limb doctor is the amazing Dr. van Bosse!) We realized we hadn’t seen an “arm doctor” in a while since Laelia was so functional. We asked if we could see Dr. Z (Zlotolow). He agreed to see us last minute before he left for the day since we flew there from California. (People from some foreign countries fly less of a distance to come here.) He showed us how Laelia’s arms were rotated. Duh, we know, that’s why we do all those stretches! Then he showed us how surgically rotating her arms would make her more functional.

So we discussed what the surgery would mean for Laelia and if she was cool with it.

She had some different ideas for this surgery. She wanted something to make muscles go into her arms.

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Laelia’s vision

We explained that this would not do that, that she didn’t qualify for surgery that could do that since she’s missing the nerve endings and enough healthy muscle for a transfer. Well, at least where medical science stands now. But this would rotate her arms so she could eat lunch easier. She agreed that was something she wanted.

Six weeks after Laelia’s “last surgery for a while” we were once again traveling 3,000 miles back to Philadelphia to undergo surgery. Dr. Kozin and Dr. Zlotolow each took an arm and like synchronized swimmers they gracefully rotated them at the same time. (This was the first time they had EVER done both arms at the same time; and only because we were a special case.)

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“You take that one; I’ll take this one.”

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“Okay, go!”

And she got out of surgery looking like this:

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This picture marked the first time in Laelia’s entire life that she had arms facing the right direction. *getting emotional here* And instead of actively forcing them into this position she was unconscious. Unconscious! I’d never seen her arms like this while she was asleep before!

(They could have rotated them even more, but then she wouldn’t have been able to reach her bottom to use the potty independently. She’s 100% independent in the bathroom now, depending on the outfit. ;))

Four weeks of casts later…

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Casts.

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Bored.

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Hi, casts still.

Then…

Back we flew to Philadelphia! (Making it TWO trips to Philadelphia we hadn’t budgeted for. :))

And casts finally came off!

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LOOK AT THOSE ARMS!!!

And that affected her ability to…

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Hold Fuzzy Bear…

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Color her Scarman coloring book

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Play a game of cards…

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And even fold her hands together!

Funny story: Charles and I were complementing Laelia’s new arms while she sat there and beamed. Finally we looked at her for her response and without missing a beat she put her fingers together (a feat that’s new since surgery) and said in the most perfect Mr. Burns voice, “Excellent.”

We died laughing.

Oh and her IEP (Individual Education Plan, required for special needs kids to go to school) happened around six weeks after surgery and her adaptive PE teacher, occupational therapist, physical therapist, the school principal, her teacher and aides all spoke about how she can write better, feed herself better, hold things better, etc. She had missed a lot of school for this, but she came back a totally new girl with different abilities! And they were amazed!

So to recap: We walked into the hospital like this:

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And walked out like this:

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hard conversation about grooming

May 31st, 2014

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Avoid this guy! Hehe. :)

(Actually that’s me dressed up as my male coworker for Halloween. I won $50.)

(Which leads me to my point…)

I’ve been encouraged to post this publicly since it’s so very important.

This morning was hard. This morning my husband and I sat down over breakfast to explain some family rules to my sweet trusting six year old.

Rule #1: We don’t accept gifts from grown up men unless they get Mommy and Daddy’s permission first or are giving stuff out to everybody. (Like when her wonderful teacher, Mr. P, gives out books to everyone in class.)

Rule #2: We don’t keep secrets from mom or dad.

These are the rules for our six year old. They will be refined and redefined as Laelia gets older.

What brought this about was that Laelia started receiving gifts and attention from a bus monitor. Let me be clear: I truly believe he was just being nice to her; and I don’t think there’s any ill intent on his part whatsoever.

But now she will not accept any gifts from him and we practiced explaining why to him.

Because grooming happens when wonderful, kind people want something from us. Because people you know are way more likely to harm children than strangers. And there’s no reason to give my daughter more attention because she has a disability.

In fact if we teach kids with disabilities to expect focused attention from adults for no reason other than that they are “special” then they won’t be discerning when the wrong kind of person wants to give them that attention.

She asked questions and hubby and I provided answers. No, it’s not okay for someone to touch your body if it makes you uncomfortable EVEN IF they are helping you into your wheelchair or something else you need. Speak up! No, it’s not okay for someone to get too close EVEN IF it’s part of their job in physical therapy or occupational therapy. Tell them when to back off and the good ones will! You have control over your body, even over the parts you can’t move yourself. Your body should be respected at all times. Period.

The conversation went well, and we’ve honestly never had an issue with any of the wonderful adults in Laelia’s life. Laelia is a great self advocate. Also she knows if someone gets mad about our family rules then that’s wrong. A good person will understand.

In one of the most informative blog posts I’ve read on this subject, Checklist Mommy offers the following advice. I couldn’t say it better so I’m just copying and pasting her words here:

“Stop telling your kids not to talk to strangers. They might need to talk to a stranger one day. Instead, teach them which sorts of strangers are safe. You know who’s safe? A mom with kids. Period. Your kid gets separated from you at the mall? Tell her to flag down the first mom with kids she sees.” [quoting a child safety educator on NPR here]

  • It is unlikely your kid is going to be abused by a weirdo at the park (huge sigh of relief).
  • That said, if there is a weirdo at the park, he’s not going to fit the “stranger” model — so stop teaching your kid about strangers! He’s going to come up to your kid and introduce himself. Voila! He ain’t a stranger anymore.
  • Teach your kids about TRICKY PEOPLE, instead. TRICKY PEOPLE are grown-ups who ASK KIDS FOR HELP (no adult needs to ask a kid for help) or TELLS KIDS TO KEEP A SECRET FROM THEIR PARENTS (including, IT’S OKAY TO COME OVER HERE BEHIND THIS TREE WITHOUT ASKING MOM FIRST. Not asking Mom is tantamount to KEEPING A SECRET.)
  • Teach your kids not to DO ANYTHING, or GO ANYWHERE, with ANY ADULTS AT ALL, unless they can ask for your permission first.

See how I said ANY ADULTS AT ALL? That’s because:

  • It’s far more likely your kid is going to be abused by someone they have a relationship with, because most cases of abuse follow long periods of grooming — both of the kid and his or her family.
  • Bad guys groom you and your kids to gauge whether or not you’re paying attention to what they’re doing, and/or to lure you into dropping your guard. Don’t. Kids who bad guys think are flying under their parents’ radars, or kids who seem a little insecure or disconnected from their parents, are the kids who are most at risk.

SO:

  • Be suspicious of gifts that adults in positions of authority give your kids. There’s no reason your son should be coming back from Bar Mitzvah study with a cool new keychain or baseball hat.
  • Be suspicious of teachers who tell you your kid is so special they want to offer him more one-on-one time, or special outings. That teacher who says your kid is into Monet, he wants to take him to a museum next weekend? Say thanks, and take your kid to go see the exhibit yourself.
  • You know that weird adult cousin of yours who’s always out in the yard with the kids, never in the kitchen drinking with the grown-ups? Keep an eye on your kids when he’s around.
  • Oh, and that soccer coach who keeps offering to babysit for free, so you can get some time to yourself? NO ONE WANTS TO BABYSIT YOUR KIDS JUST TO BE NICE.

faith healing (because again?! people!)

May 30th, 2014

Trigger warning: Sarcasm, faith healing, more sarcasm

*ahem*

There’s a reason we don’t pray for someone’s amputated leg to regrow. Even those with the gift of healing usually draw the line there. I have never seen a group of amputees line up outside a faith healing tent and come out with arms and legs. I’ve known three faith healers (family friend, friend of friend, family member) and all three have never even offered to regrow people’s limbs. (Rude!) We humans reason (correctly) that there’s a natural order to things. Could God regrow limbs? Sure. So why don’t we regrow them through faith? Because we are not lizards (yet).

So why do people insist that God can regrow my daughter’s muscles that she literally does not have? Literally! The anterior horn cells in lots of places were disrupted during fetal development and those body parts did. not. form. And (I’m sad I have to even make this point *sigh*) that fact does not change just because you can’t see it!! (Science!)

If I was born without a liver or foot or brain could prayer create one out of thin air for me? Does God bend the laws of physics in that way any other time? (Imagine playing Monopoly and then the creator of Monopoly is all, “Randomly all properties will now be used as tarot cards. Oh you have Park Place? That means you’ll be unlucky in love. But hey you’re winning! How? No clue!”) Because that’s what you’re saying. Just realize that. That right there. You’re saying that!

If you pray, pray normal things. (Talking to unfathomable cosmic creator of all things with your mind = normal!) Okay, like I pray she works hard in physical therapy and that her goals are worked toward with patience and with grace. I pray she learns how to navigate the world with the incredible body she does have! (Because she’s different, not tragic.) I pray for wisdom for us as we make medical decisions on her behalf. I pray for technology to catch up to need. (But I’ve given up on insurance catching up to need a long time ago.) I pray for her to have this light that shines in the dark spots of our culture. I pray she grows up to help the poor and fight injustice. And today I prayed for the poor unaware bully who got her lip! (Note to bullies, don’t call my daughter “bossy.” It somehow gives her cosmic authority to take charge of the correction of your mistake, known to you as “bossing you more.”)

Heck I can’t tell you what to pray, go nuts! Pray she grows wings! Because wings!!!!

Just, I don’t know, please see arthrogryposis logically and don’t get stinking mad at us or God when the laws of physics don’t go topsy turvy at your prayer missives. My kids will do amazing things and “prove doctors wrong” but it will likely happen within the realm of reality and follow the rules of the universe.

PS: My son is also missing muscle, but not as notably so he has received considerably less offers of miraculous healings. Don’t worry, he’s not feeling left out. Unless you start offering my family faith healings *and* cookies. Which is only polite.

PPS: But but but! What about Jesus and the dude’s ear or part of St. Augustine’s leg or stories like that? Most faith traditions have miracles or healings that held some purpose. I think we could *at least* agree these are exceptions to the rule.  And I am referring to modern, has-access-to-Internet faith healers in this post.

PPPS: Chocolate chip cookies with chunks of brownies in them. No store bought crap.

Arm Surgery

April 1st, 2014

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Here we go again!

Yes we just had surgery six weeks ago. Yes this was completely unexpected. Yes this is Laelia’s first (and last) arm surgery! And yes it is a doozie!

Two expert surgeons. Both arms. Rotational osteotomies. Six weeks recovery. Laelia won’t be able to use her arms for a over a month. Laelia won’t be able to walk because she’s prone to falls and one fall could ruin the fragile bone healing.

I’m finally getting, for all intents and purposes, the quadriplegic child the doctors told me I’d have. But only for six weeks.

So why did we decide to replace most of Laelia’s arm tissue with robotics?

Well this will help her to feed herself better, hold a ball better and clap by hitting her palms together as opposed to the back of her hands.

Why robotics?

With amyoplastic arms there is clearly a lack of muscle and tendon and nerve endings. And obviously with arthrogryposis there is extra joint tissue.

Adding metal to those areas adds a bit of weight, but adds a ton of range of motion.

She already is able to supinate her arm. Now she’ll be able to easily (if passively) rotate them too!

Here’s the concept art.

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Obviously she’ll look different.

(…)

And here’s Laelia after surgery!
Ta da!

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Laelia standing tall with her new arms!

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Laelia trying on different arms post surgery.

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All I have is MS Paint, so I was pretty proud of this one. :)

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And just for fun. :)

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Hahaha!!! (Laelia is standing here saying, “Hey, Roland looks different! Those aren’t my feet! What’s going on!”)

Happy April Fools!!!

(If you’re reading this on April 1st we’re probably still in real surgery getting the rotational osteotomies. No robotics involved. Surgery on April 1st, what a joke! I told them no one would believe me. :))

Expecting the unexpected

March 7th, 2014

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Can life get better?!!! Right after we found out that Raymond had a family, we got word that a donor had dropped several thousand dollars into Aubree’s account! Aubree is another one of “my kids” (orphans with AMC who we advocate for). Aubree now has $15,000 in her account!!!!!! WOW!!!!!!!!!!!!!! And since that money went into her grant I’ve had two moms ask me what would be involved in adopting her and that they were praying about it! Of course they are far from committing, but the financial burden being lessened is really opening up doors for Aubree who has about a year left before she’s ineligible for adoption. Whoever you are, thank you thank you thank you for giving to Aubree!

So many people ask us why we aren’t adopting all these kids we advocate for. Let me just say that if I *could* there are FIVE kids with AMC who I would adopt in a heartbeat (not an arbitrary number, three are in China, two in Ukraine). Our experience adopting our son with AMC has been one of the best things that has ever happened to us. I say all the time that I would adopt ten more Rolands. But in reality it would be closer to 20 or 30. ;) They would absolutely trash my house, but it would be worth it. :) But our lives are heading in a different direction. Several months ago we went to a Resource Parent Orientation. A week later we made the decision to apply to become foster parents. Our focus will be on reunification with birth parents (aka we’re not in this specifically to adopt again). And our social worker will be helping us care for children who will be a good match with our own children and their needs and vulnerabilities.

Three days after returning from Laelia’s last surgery we started foster parent training classes. (And if you read the last blog you know that was not a stress-free time for us.) Hubby’s classes are in the evenings after work and my classes are 6.5 hours long on Saturdays. Except for this Saturday because the kids and I are flying up north to see my cousin Nate!

Nate has done two tours in Iraq, been the subject of the HBO documentary “Shell Shock,” and spent the last several years in prison for holding a gun to a cab driver’s head when he was having a PTSD flashback. (The cab driver was Iranian and part of Nate’s job in Iraq was to do this very thing. He thought he was there.) No one was hurt at all, and they found Nate crying and completely confused at what had happened when he realized he was still here in San Diego. But no treatment was offered and the presence of a gun meant automatic prison time so he took a plea deal. He was just released Sunday. He hasn’t seen Laelia since she was a tiny thing. She hardly remembers him but she’ll see him again tomorrow afternoon. We fly out early in the morning. After doing the cross country trip from hell two weeks ago, this trip will be easy, even if I am going alone with the kids.

And after we get home from this trip we wait three more weeks and have our lives upended yet again.

Here’s the story: Two days before Laelia’s surgery we had an appointment with Dr. van Bosse to see the kids. While in the waiting room (with several other AMC families) we discovered that the upper extremities doctor, Dr. Zlotolow (we call him Dr. Z), was leaving for the day and we had forgotten to actually set up an appointment with him. We needed him to look at Roland’s elbows as we had just finished up the second round of serial casting. Thankfully he agreed to see us before he went home. He vasillated between recommending the surgery and recommending waiting. Roland’s arms look pretty good: one is at 75 degrees and the other around 90. Finally Dr. Z made the decision to keep an eye on Roland’s arms and put off any surgeries. We got a prescription for two elbow splints which work really well. I know we’ve gained ROM (range of motion) on his elbows just from stretches and these wonderful splints alone. Will he have that elbow release surgery in the future? Who knows. So far he hasn’t had a single surgery. Lucky duckie.

But we really didn’t expect the doctor to look twice at Laelia’s arms. Blessed with excellent passive ROM from us stretching her since birth she doesn’t qualify for any of the usual AMC-related arm surgeries. She also lacks the muscle for a muscle transfer. So we were very surprised when he showed us plain as the noses on our faces that she needed arm surgery to assist with feeding herself. In every picture I have of her I’m now noticing how much her arms are rotated. If you try to put your own arms into that position you’ll realize how awkward that feels. Here’s one example in a picture.

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Laelia’s hanging arms are twisted inwards with palms out.

What will fix that is derotational osteotomies (cutting the bones and rotating them). The same thing they did to her legs when she was three, only this time with her arms. If successful it will help her with reaching her mouth and holding a ball. If REALLY successful it will help her to clap her hands together. (Right now she claps the back of her hands together.)

So when is this major surgery happening? April 1st. Not an April Fools joke this time. (Although everyone will probably think so based on my track record.) She will not be able to use her arms for six weeks after that. She will not be able to walk since falling (which happens) would have dire consequences on those healing bones. She will not be able to write, play on the iPad, feed herself, etc. For all practical reasons she’ll be a quadriplegic. She’ll need constant care and supervision. And we thought this last trip to Philly would be the last one we would have for a long time. Boy were we wrong. Two more trips in April alone. Big time recovery. More stress.

Another complication recently has been with our insurance company. They are refusing to cover Laelia’s leg braces. So she STILL doesn’t have them, and it looks unlikely that she will get them before the next surgery where she won’t be able to walk. I can’t tell you how awful it is that she went through a leg surgery and now doesn’t have the needed braces! The old ones don’t fit anymore and they are hurting her. The CA doctor (more accurately his nurse) I sent the prescription to messed up big time. The orthotist tried to get them made and our insurance told them they would not be covered.

Long story short our only recourse if we don’t want Laelia’s legs to atrophy after surgery (where they stressed the importance of PT and correct leg braces for recovery) is to have them made by the same people who were so incompetent when Laelia was a baby that we fired them. And it is taking forever!!!

Laelia has huge “balls” on the bottom of her feet so we could not have her braces made in Philly as they require many many adjustments as the giant sores move and the braces are always needing to be repadded. Laelia’s feet are also starting to reclub. Ugggggggggggggh. Reminds me of this thing I saw on Facebook: “When someone asks you ‘What would Jesus do?’ remember, a valid option is to freak out and turn over tables.” Author unknown.

Yeah, I’m about there emotionally.

 

I’m going to end this post on a happy note: random pictures of my cute kids!

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Laelia’s trying on a wig.

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Laelia seeing her first ever movie in a real theater: Frozen

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He always steals my oven mits. :)

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Roland found and destroyed an entire roll of wrapping paper.

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In-N-Out philosopher

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Swing outside Children’s museum

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Roland hiding from the doctor for his appointment

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Tired Roland is tired.

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Don’t let Roland drive the bus!

 

Hard times are rare, but unusually hard

February 27th, 2014

 

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So I never blog anymore. Mostly because I’m living more adventures than I have time to write out.

The last two weeks have been nutso. But even though I started this blog to write out my hard times and get perspective, I’m writing today with great news!

Raymond has a family! A family! A family! Raymond has a family! Tra la la la la!

Raymond is this guy, an orphan on Reece’s Rainbow, and I’ve been advocating for him for about three years. He was the focus of Bring Hope, a blog I co-author. He was the focus of Grafted Branch, a .org my husband and I run. He’s been the focus of many blogs of mine. He has also had a spot on the sidebar of this blog for many years. He’s there now. :)

One of my friends wrote to tell me that she and her husband were interested in adopting Raymond out of that orphanage he’s in, but a lot of logistics were in the way. I thought they would be the perfect family for him, but I’ve had people interested in my other kids I advocate for and the majority of the time it doesn’t work out for various reasons. But they worked out their logistics and committed to Raymond! (Stacy you are the best mom ever! So excited for you!)

And that has nothing to do with me, but it changed the direction I was heading in. I had stopped praying several months back. I’d send up an occasional weak prayer, but it was empty. So hard to pray when you know that little boy is wasting away month after month with no end in sight and we can’t adopt him right now. I had felt this complete disconnect. And Raymond’s circumstances had a lot to do with that. The morning I received the news from several friends (who get up before I do) that Raymond had a family was the first day I was able to pray again. I was praying and crying as I emailed Stacy to ask if it was her (it was). I just gushed out my thankfulness to God for this one little life soon to be saved.

Life has been hard the last weeks for our family. Unusually so.

Laelia had her 8 plate removal surgery on February 12th. This was suppose to be a). an easy surgery and b). her last big surgery for a while. Neither would end up being true. The whole family flew to Philly since Roland also had his appointment. (He’s looking at 8 plate and external fixator surgery about a year and a half from now.) During Laelia’s surgery while we were playing with Roland on the 6th floor I got a call that they couldn’t bend Laelia’s legs once the plates were removed. That wasn’t good. So they wanted permission to put a pain block in and do a more aggressive surgery. I ran to the 3rd floor to sign the paperwork. They did several releases in her thighs to get those knees bent. It wasn’t that successful and it made recovery a bit harder. When she woke up she had troubles breathing which is rare for her. I spent the whole day bent over her until my back was sore. That night my huband stayed the night and I took Roland back to the Ronald McDonald House where we finally (after being turned away to a hotel initially) got to stay.

Then a blizzard hit.

Public transportation was down, roads were closed… It was one of the most stressful things I’ve ever gone through–being five minutes down the road from my post-op baby and no way to physically get to her. Finally, after taking great pity on me, the staff at RMDH got James, their shuttle driver, to make a trip once it was safe. It turned out a family at the hospital were desperate to get back and I was desperate to get there so he’d make that one trip. Then we’d be stuck at the hospital indefinitely. Well long story short, the family desperate to get back was my family, Charles and Laelia. The hospital worked out an early discharge and they were on their way. (If they hadn’t figured out we were the same family it would have been terrible to have swapped positions but still be separated!) Laelia was sore and cold but once she was back in my arms she was going to be okay. Another storm was coming, but we could beat it and fly out before it hit. So that was the plan but the night before our flight home she threw up all that night. Then she threw up 12 times on our planes home. We thought it was from the anesthesia, but it turned out to be a virus that had broken out in the hospital. So after two days with no sleep and a cross-country experience I’ll never forget we got a ride home (thanks Debra!) and then got in our car and drove straight to the ER. Laelia threw up violently in the ER parking garage. But they put her on some meds and that was the last time she got that sick.

Until my husband started throwing up.

And then I got a really bad cold and I couldn’t breath, but throwing up trumps a bad cold so I was still the single parent and taking care of my husband.  But my cold was awful and the sinus headaches kept me from sleeping. When Laelia was done throwing up she had lots of complains about potty time. Turns out she had a bladder infection, which involved another doctor and another medication in the middle of everything. So she’s been sleeping with a towel under her at night because the bladder infection makes her feel like she has to go all the time.

So I was putting that darn towel under my daughter and stupid me decided to just pick her up and move her onto it… while bent over her… while twisted a funny way. I blame the complete lack of sleep for my idiotic move there. She weighs like 50 pounds of dead weight by the way. Yeah I completely threw out my back… which not only kept me up all night in pain, but required two out-of-pocket trips to the chiropractor and put me out of commission for things like dishes, doing the kids’ stretches, walking, bending over, etc. That put a lot of strain on my husband for several days. And just when my back felt better I got another different cold, this one with mucus. Seriously.

So that’s where we’ve been. In Stressville. So why am I smiling like a crazy person and jumping (awkwardly because of my back) for joy? Because Raymond has a family coming for him. I have a major headache while my son is shaking a bottle of Tylenol right by my head like a maraca. And Raymond has a family. I’m coughing so hard I accidentally peed. But Raymond has a family. I leaned over to grab a toy off the ground and was not able to stand up again. Well, Raymond has a family. I haven’t slept in weeks. But Raymond will soon have a safe place to sleep under the roof of his family. My hair looks like this.

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But Raymond has a family. ;)

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Raymond

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Flying to Philly

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Laelia and Roland at the RMDH

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Roland’s friend Luke at RMDH (whom Roland calls “Mylukey”)

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The Please Touch museum in Philly

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Motorcycle at the museum

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Bakery at museum

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Hospital at museum where Laelia had the most correct medical knowledge and vocab of any of the kids there.

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Waking up after not much sleep (it was 3am our time) for Laelia’s early morning surgery.

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Waiting for surgery

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Roland waiting for surgery… in the toy room :)

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Going into surgery

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Laelia waking up from surgery looking like she has princess hair. My daughter is magic.

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Snow plows excited my son like nothing else.

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Snowpocalypse!

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Back at the RMDH after surgery

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Mean mommy made Laelia do the required homework.

The next day was Valentine’s Day. These are the cards I got:
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Yeah, Roland wrote his to the bus. :-/

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While we were snowed in Roland and I took down the snow decorations and put up Valentine’s day ones.

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We hated snow at this point. Trash it, Son!

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Laelia standing that night without braces! (Later that night she started to throw up.)

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Flying home while sick was hell.

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Laelia at the ER here in San Diego. She’s still wearing her flight wings.

 

On the radio

January 26th, 2014

The first time I was ever on the radio was in South Africa. I was one of a group of visiting Americans and we were on a tour of the station when we got roped into going on the air. It was fun… up until they had me do a birthday shout out/song dedication. The name was an Afrikaans name and I botched it big time. The radio host tried to correct me and I failed a bunch more times. I’m bad with accents. Like really bad. I once was asked to be the sign language interpreter for one of the original Jamaican bob sled team guys who inspired the movie “Cool Runnings.” I had to switch out after the first five minutes because of my brain’s inability to understand his accent. (And he spoke perfect English.) (Ugh.) Now this time there was no accent but I’m still just awkward.

My favorite character from Parks and Rec, Ben Wyatt, has the same awkward issue when giving an interview. Solidarity Ben.


That said, I was thrilled to have the opportunity to talk about kidney donation on the radio! Charles was at work or he would have also added his unique and well-spoken voice to the discussion. I’ve been quoted on the radio before (even mocked by a local San Diego station) over kidney donation, but never had a 20 minute interview. The segment actually covered adoption, arthrogryposis and other topics too, some questions I was no where near prepared for. And besides a few things that I said and then immediately cringed over, I was happy to promote awareness of things I care deeply for!

So I want to thank the Jay Thomas show for having me on during Monday evening rush hour! It was fun.

Here’s the link: Radio Interview.

PS: When asked if I believed Russ*a should reopen it’s adoption program I would like to write out a better response. I’m much much better writing something out than speaking on the fly. So here’s my better answer:

“Do I believe that Russ*a’s little children, little humans, should be adopted into loving homes and out of the institutions? Yes, absolutely yes. Simply because they are entirely valuable and deserve love. The other question about if this should take place even though *some* Russ*an mothers drink during pregnancy and *some* children have FAS– still yes. I don’t believe any unprepared parent, like in the example, should have to deal with something they are not prepared for, but I also know adoptive parents who choose kids with FAS and who are overjoyed by them. (In fact I have permission to connect you with a parent who parents multiple children with FAS and would give you an idea if that is for you. She rocks this kind of parenting, by the way, and her kids are awesome sauce.)

For those adoptive parents ready and willing to step up, please open the gates. Please let adoption continue in this country. Because we will empty our pockets, crawl through barbed wire, trip over bodies lying around us and chew glass to get to our children. Let us have them.” 

There, I feel better. I believe I mentioned something about Putin with his shirt off instead of the above. Again, solidarity Ben!!!

 

Laura’s kidney (kidney saga continues!)

November 18th, 2013

(For a link to the story with text click here.)

I want to thank Ashlee DeMartino from 10News for airing the original story (seen here) about the cancelled surgery. James is a great advocate and because of his fight and the exposure from the news report a new surgery date was given that’s only two days from the original date instead of two or more months! This last week has been a roller coaster ride for the Rivera family. Thanks for all your prayers and support. My aunt, uncle and cousin fly in day after tomorrow! Exciting!

(The above video contains Roland being a cute little annoyance who wouldn’t let us do an interview. He was really cute. He talked the whole time I did. :))

There’s so much background to this that is incredible. One of my good friends, Meg (who is responsible for the veggie lasagna that kept my newly adopted and very stubborn son alive for the first month home), really cared about her coworker, James. In fact one day when she was over she pulled me aside to talk about him. She told me all about his family and his little girls and his circumstances. She encouraged me to find out my blood type and consider donating to him since she was one of the few who knew I was starting that process anyway. I contacted my kidney coordinator and, after talking to Janine I got James’ coordinator too, but long story short he didn’t fit in my chain unless we wanted to kick several people off the chain who had been waiting a long time. Plus our two hospitals weren’t really compatible, although Sharp was willing to try to work it out if there were no other options. (Sharp Memorial and the NKR pretty much would have done whatever I asked even if it was in no one’s best interests but mine. They take care of their donors.) Then Laura said she would see if she could help. (So in a way Laura gets credit for the six additional people in my chain who got their kidneys since James was now taken care of.) After the testing Laura found out that not only was she a match for the oh-so-hard-to-match James, but she was a VERY close match! The kind of match they usually only see with siblings! I texted Meg the good news about Laura and she was texting me back while in labor and I didn’t even know. Haha! Her son was born sometime soon after that! This is the most random amazing story. James’ and Laura’s surgeries are this Friday!

Kidney donation

October 28th, 2013

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As many of you know I donated my kidney to a stranger after  I told our local news 8 some time back that I would. And because Hubster had already donated his kidney to a stranger a year and a half ago I had already asked all my questions and seen with my own eyes the entire process. I consider my chain just a longer extension of his chain since I never would have even given a second thought to kidney donation if not for him exposing me to it and educating me on it. It took about seven or eight months of tests and meetings to be able to donate and have a chain set up. After realizing that my children didn’t need a kidney and odds were they never would, we decided that rather than saving a kidney they had less than a 1% chance of ever needing, we’d instead do something better for them: give them a world where people donate life to others. That (surprise to us) made us the first couple in history to do this.

(If you’re considering this at all please go here and click on “I don’t have a recipient.”)

I thought I’d write out my recovery experience for anyone thinking of doing this. As you all know I’m a total wuss and hate medical stuff. Also I’m not tough and during the very first blood draw to determine if I was eligible to donate I passed out. Yeah. Woo. So if you’re a wuss like me, fear not! It’s not that bad. Word to the wise: Lie DOWN when you get blood draws. TAKE your meds. DON’T eat like a pig. And DON’T watch Pete Holmes videos people post on Facebook right after surgery because your belly laughing has consequences! (Rob!) You’re welcome.

Timeline:

Monday – My surgery happened around 4:20pm. The last thing I remember before surgery was the anesthesiologist putting something in my IV and saying, “This will help you relax.” It did. I shut my eyes and relaxed, but a few minutes later I felt my stomach in knots. I thought it must just be stress or something, but I started to tell the nurse that I probably shouldn’t go into surgery right now because my stomach felt weird and achy. Well (haha) it turned out the surgery had already happened and that’s why I was sore. Yeah like four hours had passed. That was some good stuff in my IV.

Mr. Kidney was driven up to L.A. and sent on a red-eye flight to New York while I slept.

Tuesday – Mr. Kidney was successfully placed in his new home early the next morning. He started earning his keep right away by producing urine and adding an average of 15 years to the recipient’s life.

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Back here in San Diego I was doing pretty good. I was up and walking and on mooooooorphineeeeeeeeee. (It was for my shoulder, randomly. They gave me morphine and then asked if I still felt pain. I was like, “Pffff I don’t careeeeee! Weeeeeeeeeeeeeeee!!!”) We were told that the local media was going to come, but our coordinator cancelled it. I was just as happy to sleep. (PS: Mooooooooorphineeeeeeeeeeeeee! It was literally a good memory.) I also walked for like two hours straight that night because I could.

Wednesday – Check out day! Upon being woken up I was told I would be discharged soon and, by the way, two camera crews were here! And more were coming! The media thing was back on and, like, right now! And EVERY local station was coming! I jumped out of bed (like a granny) and washed my hair and put on real clothes. I was surprised how I could move around and was relatively fine after just having surgery. This was my first laparoscopic surgery and I recommend them over regular surgery. 45 minutes later a bunch of cameras and nicely-dressed people came into the room. We were all laughing and joking when someone said, “How does it feel to be the first couple to do this?” And I was all, “In San Diego?” And they were all, “No, seriously, the first ever!” (Which translated as “the first couple to donate through the NKR to strangers,” not, like, the first people to ever donate kidneys.) Charley and I high-fived. Then we talked about how everything we try to do is because God did it first: we love because he loved us, we give life because he gave us life, we adopt because we are adopted by him, etc. That’s paying it forward. We also talked about arthrogryposis (Hall’s contratures) and how we need funding and awareness. We talked about so many other things we’d rather be known for (seriously, our 15 minutes of fame came from lying on a table, woot), but we have since learned to stay on message: kidney donation = good. Sharp Memorial staff spoke about statistics, the odds someone in your family would need a kidney only you could provide (see my Q & A here) and I mentioned how easy this was. I do regret saying that surgery was so easy. (That was you on morphine, precious.) About an hour later I was home! That night my dad grilled up some ribs. I got a throne bed made out of pillows. My children were presented before me already washed and dressed and homework-ed. :) Life was good. I was queen.

Thursday – I got a phone call that all 7 kidneys in my chain had been successfully transplanted. That means all 14 surgeries had taken place since I kicked things off Monday night. Wow. And between Hubster and I, ten lives were saved and possibly one more kidney may come to San Diego on top of that as a bonus because we started a chain. It was an incredible feeling.

[My favorite article about our donation chain comes from the LeTourneau blog because it gives the numbers for the US. 96,645 people waited last year for a kidney. Only 16,812 got one, and of those people only a third got one from a live donor which lasts much longer (adding priceless years to their life) and takes better (rate of successful graft skyrockets). Of the enormous need, only 165 donors gave to strangers. 4,903 people died waiting.]

{As those of you who knew my mom and how her life was abruptly ended at 39 years old, I can’t tell you how priceless, utterly utterly priceless, 15 more years with her would have been. Live donors add more years to a recipient’s life than deceased ones. That’s why we’re doing this now as opposed to just offering our bodies upon death.}

I was only out of the hospital one day and already I was taking longer and longer walks. Rolly would grab my finger with his little fist, say, “mon!” (come on!) and walk me like a pet. It was cute. And I was also able to get out of bed and put my socks on by myself. I wanted a trophy that said “sock master.”

That night we went out to a family dinner with my cousin Laura (who is donating her kidney next month), James (the guy getting her kidney) and James’ entire family (who made the dinner). We got invited because I was the one who shared James’ need for a kidney on Facebook and that was the magical “share” that Laura pounced on. Yes I get credit for just sharing on Facebook. (It’s amazing what a share on Facebook can do!) We had excellent food and company, although I felt all the bumps in the road on the drive over. It was trippy that I’d just had surgery a few days before. My husband wanted so bad to just help me into my chair or something but I was all “I got this” and stuff. I also ate a ton.

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Friday – We found out our local story went national. We were floored. And friends kept finding us all over the Internet and on their local news stations.

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That morning I gave a phone interview to Yahoo! Shine and then the Huffington Post picked it up. We were living in full-on bizarro world. Advocates for kidney donation were eager to get as much exposure as possible. (The producer of the Queen Latifah show called my cell… twice. I was totally fan-girling.) Then we got a call from Fox and Friends who asked if we could come on the show THE NEXT MORNING. At first I said no since I’d never seen the show (we don’t have television at home) and we only knew it was connected to Fox News in some way. But after talking about it we realized it was the kind of exposure we would want for kidney donation, gosh especially if we were on the waiting end for one. Plus it was the first national news to take us live instead of just replay a local news’ edit of the interview from Wednesday. And I’m glad we did.

Saturday  – I took off this weird patch behind my ear in the shower that morning. It was a nausea patch. It was an hour later that I realized why the patch was important. Oh dear Lord why did I take off the patch? Why?! I’m very prone to motion sickness. (Did I mention I pass out when I give blood?) I seriously have the weakest constitution for a healthy person. My digestive system was also not quite awake since surgery. I don’t eat much meat regularly, but I had had FOUR meat dinners in the last four days. I’m a genius. The studio had sent a car which showed up at 5:20am. And the trip downtown only took 15 minutes, but it was enough. I was car sick. Then the live interview started. Click here to see it. I remember feeling fine during it, like on a natural high from being terrified of millions of eyes on me, and then it ended with the disembodied voice of Anna Kooiman saying goodbye and then I was off to bed to let the nausea run it’s course. It was also at this point I decided that I was done with my prescription meds since I wasn’t in pain, it was just the nausea bothering me.

And I kept getting teased about glow sticks… oh wait let me back up. So a bit before my surgery my brother-in-law had his own surgery to remove his gallbladder. We had teased him about how he possibility could have gotten so sick that he needed surgery and determined it was from chugging glow sticks. (A natural conclusion.) I even drew hilarious (because I’m hilarious, obviously) cartoons depicting his situation.

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Yeah so during the next several days of my off-again-on-again nausea the joke was that I had also been chugging the glow sticks. I deserved it.

This whole recovery I have not really felt a lot of pain where the surgery actually took place, in my gut. My biggest pain for the first few days was in my shoulders, particularly my left shoulder. I guess they fill up your tummy with gas so they can see around in there and sometimes the gas can settle in your shoulders. But in rare cases like mine it’s like a stabbing pain if you move just right. No body told me my shoulder would hurt like this! And by “no body” I mean a nurse, the coordinator and my doctor… twice, they all told me it was a possibility. The whole Sharp Memorial Hospital team educates you about everything, even stuff you don’t want to know. So… what was I saying? Oh yeah, NO BODY told me this would happen. ;) Okay maybe I just didn’t listen. My two lovely morphine requests in the hospital were for my shoulder and only for my shoulder until the gas settled in a couple days. So once the shoulder felt better I was like, “Won’t be needing these anymore! I am so smart!” And out went the pain meds. I don’t know what I was trying to prove. It didn’t feel good for like three days because of that little stunt.

But a few days later (one whole week after surgery) I was feeling pretty darn good. I would occasionally feel nauseated by overeating, which I did a lot of. I really did nothing but eat. Why did I overeat so much? It was always comforting and then I’d regret it. But even so I lost five pounds. ;) Surgery winning!

There was one day, randomly, in my second week of recovery, where my left side started to ache slightly where Mr. Kidney had been. It was this very slight, hallow ache. I think because I wasn’t feeling the nausea and I wasn’t feeling pain, all that was left to dwell on was this little constant empty ache. And then that ache started coming with this psychological feeling of loss. Not that I wanted my kidney back or even regretted the surgery, but I just felt emotional for that day and rubbed my side a lot. Once the ache went away I was over it.

Now it’s been exactly two weeks since surgery. My new abilities include being able to sneeze without my tummy going numb from the jostle, eating whatever I want without nausea and pretty much going back to normal life in every way. (Yay driving again! Yay making out with Hubster!) The only thing they don’t want me to do is weight (read: kid) lift for another two weeks. Even though I picked up my son during that appointment making the doctor say, “I’m going to pretend I didn’t see that.” Then I asked if I shouldn’t change any diapers for the next six months, just to be on the safe side. Dr. V said, and I quote, “Oh no diapers for two years, minimum.” Haha!

So two weeks out I’m feeling great. I’m back to my old self, but very tired. My energy has been zapped and I’m out of shape though. Not that I really worked out before, but lying in bed so much has made me flabby and weak. I went out tonight for a few hours with friends and when I got back I slept for a long time. I’m the queen of naps. And playing with my kids wears me out a ton. Thankfully, the grandparents have taken care of them for the first two weeks and now Uncle Bolt is helping my husband take care of them for the next several days. I have done some parenting, but mostly they’ve been fed, bathed and sent to school without my help. It’s been lovely. I already miss grandparents and want them to move back.

<Update> Since I forgot to post this I’ll add a bit more. It’s now been three weeks exactly since my surgery. Here’s what my surgery scars look like. (I’m sucking in so hard for this picture.)

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It’s easy to see since I’m so white. There are two dots on my left side and one in my belly button. (The red dot above my belly button is a mole.) My hubby had the same thing, only his belly button incision was more noticeable because they pulled his kidney out through there. (Yes, kidneys are that small and only weigh a few ounces.) For me, they put the camera or something in my belly button and pulled the kidney out of my C-Section scar. Based on Hubster’s rate of healing I expect the redness to fade and the marks to be mostly gone not to long from now.  His belly button went back to normal too.

Last Saturday our story went International and we were welcomed to a live interview with Weekend Sunrise, a morning show in Australia. To see the interview go here. I had a slight cold but you can’t tell. I mostly never know what to do with my face, and Charley has to remember not to be a robot so we have the TV nicknames of Twitchy and Zombie, which I feel is perfectly on display in the screen grab below. ;)

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Ha!

Australia doesn’t have donor chains, but they do have one-to-one donation and also donor swaps which involve, if I remember correctly, two donors and two recipients. They also have around the same percentage of donors  per year that we do. So the same awareness we need here they need there, but in both our countries the numbers are on the rise! Hubby was even able to explain how a donor chain worked so maybe they’ll adopt that practice! Who knows. It’s exciting though!

So now life is back to normal and we’re all just counting down the days to when my cousin Laura flies in from Tennessee with my Aunt Linda and Uncle Bud so she can donate her kidney too! Exciting!

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Again if you are interested in getting more information about this process go here and click on “I don’t have a recipient.” You are under no obligation, but you can get your questions answered and get lots of info. It goes without saying that there’s a major need and if you think you can fill it that would be wonderful.