Complete

We have got a boy, and I mean BOY, on our hands. Whew. I tell you. We're sitting at a Starbucks in Dulles airport waiting for our final leg to Charlotte this afternoon, and Mr. Markos David Sprinkle is about as active a two-year-old as I've ever met. Of course, it might have something to do with the fact that he slept about 14 of the 18 hours we were on the plane from Addis Ababa to DC! He's experiencing many firsts today, and he's clearly eager to keep the string alive leading his mom all over the airport while I type. This is gonna be fun.

The trip in its entirety was a once-in-a-lifetime experience, and we can't wait to share our stories, photos, and videos. For the next 24 hours, however, we just want to get home and settle in a bit. Thanks to our family for making this so easy on us. Thanks to our friends for all your love and support. Can't wait to introduce you all to Markos.

Leaving for Addis!

Phelps and I leave tomorrow for Ethiopia to pick up our sweet boy, Markos. We will arrive in Addis Ababa on Sunday evening. We will be driven to the Gladney Care Facility to meet Markos on Monday. I can't believe the day is almost here! We will try to send out an update on the blog once or twice. We hope to return on the Saturday following Thanksgiving if his visa is ready on time. Keep us in your thoughts and prayers!

Thank you ESUCP Walk With Me supporters!

Easter Seals Walk With Me Charlotte 2009 from Topics Education on Vimeo.

It's official. We have a son ...

Introducing Markos David Sprinkle!

October 14, 2009
September 13, 2009
July 2, 2009

Adoption Court Date Tomorrow (Oct 20)!

Our court date, originally scheduled for Oct. 5th, was delayed until Oct. 20th. But that day, which seemed so far away, is now almost here. We do not have to appear in court in Ethiopia. Our agency will appear on our behalf. Then our Gladney social worker will call us tomorrow to let us know what happened. So think of us tonight and keep us in your thoughts and prayers that we may get good news tomorrow. If our court case does get heard and the judge states that our paperwork in in order, we will be given a travel date by the embassy. Typically the travel dates are 3 to 4 weeks after your court date. So we hope to travel by mid November if all goes well tomorrow. Another delay is always possible, but we are hopeful!

Walk With Me: StRoll in the Park news coverage!!!

David Perlmutt with the Charlotte Observer interviewed me earlier this week for his blog, The Cliff. The blog was created to highlight the crisis facing Mecklenburg's nonprofit community and to raise awareness for the many great organizations, like Easter Seals UCP, that are part of it. Here's a nice piece he wrote about Roxie and the Walk to help promote Saturday's event.

Letter to our son

We sent the following letter and photo to our son yesterday. Our new court date is next week (October 20), and, if all goes as planned, we will travel over to Addis Ababa 3-4 weeks after that. Fingers crossed. (Note that until we finalize the adoption, we cannot post his name or photos, but we sure wish we could!)

Dear [Son],

We cannot wait for you to be a part of our family. We live far away
in America and will come all the way to Ethiopia where you live to
meet you. We’ll have many adventures together including riding on an
airplane, exploring new places, eating new foods, and meeting your new
sisters, Roxie and McRae. They can’t wait to play with you and show
you around our house. And you will meet our dog, Sully. He is very
sweet and I’m sure you and he will be good friends. We hope you liked
the trucks, clothes, and pictures we sent to you.

With love from America,

The Sprinkle Family

PS - Give your caregivers a big hug from us for taking such good care
of you!

"Court Date: Oct. 5"

That's what Kate wrote on a scrap piece of paper and placed in front of me during a Walk With Me committee meeting this afternoon. She had just answered a call from our adoption agency rep who told her the great news. We were only three days from the courts closing for five weeks for the rainy season, and we were thinking there was a good chance we wouldn't get a date scheduled in time. Not only did it get scheduled, but it got scheduled for the first day the courts are scheduled to reopen. If we get approved the first time (typically 80% of cases go through first time), we could be traveling before November 1. We'll see. So freaking excited ... so much to do to get ready!

Ugh, just when we thought we might be in the clear ...

After nearly eight months seizure-free, Roxie had another breakthrough seizure tonight, an hour and a half after going to bed. Kate went up to check on her around 9:40 and she was making a rhythmic sound, but didn't appear to be doing anything other than sucking her thumb. To be sure, Kate leaned in and pulled her thumb out of her mouth, saw that her eyes were open, and realized she was seizing. She carried her downstairs, we administered the diastat, and she stopped right at 5 minutes. 5 minutes later, she went to sleep.

She's opening her eyes periodically, but otherwise, seems to be resting and/or sleeping. Her heart rate got up to 154 during the seizure, but nothing scary. She is breathing fine and her heart rate is normal. Her temperature is normal as well. We don't know what caused this. Same as the four breakthrough seizures she had last Fall. Hope this isn't a sign of things to come for this Fall!

Anyway, the positive is that we brought Sully in to see the seizure before it stopped. He watched her and licked her for a couple minutes before she stopped seizing. Hope that will be helpful in future training. I did NOT get a video of it, however, which I'll try to remember for when it happens again. Supposedly that helps a lot in training a dog to alert.

Roxie's eye surgery

Our sweet girl is home resting after a long day at the hospital. Her eyes look pretty rough right now (swollen a bit and very red), but she is already moving them together better making us think the strabismus was at least somewhat corrected. Surgery lasted a little more than an hour and a half and there were no surprises. We spent a lot of time before the surgery talking with the anesthesiologist to make sure their plan for her was appropriate for someone with mitochondrial disease.

The one drug they did end up using to put her under was propofol. This drug was on a list we were told at the UMDF conference last month that mito patients should avoid. But after discussing it with the doctor, it was clear that it was the better alternative as the other drug was a potential culprit in malignant hypothermia which we did NOT want. Also, we were told they had used propofol on many mito patients before. We were impressed that the doc seemed to know so much about mitochondria disease ... a good sign it's getting more attention.

Anyway, she was groggy and a little fussy this afternoon, but mostly her usual self, minus the eyes being swollen and red. She would not eat much either, including her medicines. Not much we can do, so we gave her a cold compress on the eyes (boy, she loved that 1 minute treatment ... best to do 10 minutes, of course) to keep the swelling down, put more antibiotic ointment in her eyes, and recited Goodnight Moon. She fell asleep almost immediately. Poor girl.

In the morning, she is likely to have serious "mattering" around her eyes, otherwise know by the technical term of "eye boogers." But she should feel much better they tell us, and hopefully she'll eat something and take her meds, too.

It will be a couple months before we know how well the surgery will result in correcting her strabismus. If all went well, there will be no more need for additional surgeries, her eyes will work well together, and she'll start using them both at the same time. That would be fantastic and would really help her development we think.

Sully the Wonder Dog Returns!

OK, so he's not exactly a Wonder Dog, but he's just as sweet and a heckuva lot more willing to sit, stay, come, fetch, and heel than he was before. Advanced training is over ... after a few months, we'll be looking at specific tasks for him to learn to be able to help Roxie. It's great to have him back.

McRae refused to sleep anywhere else than on the floor beside him in our bedroom tonight, so I guess she feels the same way.

Our son turned two today ...

... and we don't even know him. We can't wish him a happy birthday, hug him, or play him a tune. Kind of a weird situation to find oneself in. But we've been thinking about him all day.

Roxie and McRae are going to have a brother!

Big news! Today, we accepted a referral from our adoption agency, Gladney, to adopt a two-year-old Ethiopian boy. Unfortunately, we cannot share his name or photo on the internet until the adoption is finalized, but suffice it to say, he is an adorable little boy. His caregivers describe him as a sweetheart, happy, jolly, playful, active, talkative, well-adjusted, and with a sense of humor that makes everyone laugh!

Our son-to-be had a very difficult life prior to being brought to Gladney in late December 2008. His father (a farmer) died when his mother was eight months pregnant with him, and his mother died when he was only seven months old. Both deaths are thought to be from malaria, but as the resources are so sparse where he was born, this information comes second-hand from the uncle who brought him to the orphanage. Regardless, as we've pored over wikipedia and google maps the past two days, we've learned a lot about Ethiopia and the region from where he hails. It's a tough place to live, and it seems as though that's all a lot of people there are focused on: getting by. It has been very sobering and humbling, to say the least.

Needless to say, however, we are ecstatic and light-hearted about having taken this most crucial step in the adoption process, and hopeful that the remaining part of the adoption will go smoothly. We are amazed at how quickly everything has progressed to date. After 4-5 months of work (mostly by Kate) to get all our information in order and to the right authorities, we got onto Gladney's waiting list on June 3. Just 6-7 weeks later, we got this referral. Amazing.

Next steps. Our case will now be put in line for a court date in Addis Ababa. With the rainy season only a month away (the courts close on August 21 for a month or longer for the rainy season), we are hoping to get an assignment made soon. If so, we could have a court date as early as October and be traveling over to pick him up 2-5 weeks thereafter assuming everything were to go through on the first try. But it's also equally as possible -- maybe more likely -- that we won't even get a date set until October or November which could push us into 2010 for travel.

Regardless, we are giddy with anticipation and filling our free time researching anything we can about our son-to-be's culture and environs. Both McRae and Roxie seem excited about the prospect of having a "brudder," though clearly they don't completely understand, and it doesn't seem real to them. It will soon enough! We can't wait to see what tomorrow brings.

Sully Boy

Sully joined our family earlier this year. In July, a trainer is going to take him to be trained as a service dog for Roxie. He'll learn how to wear a handle that will allow him to help her walk. He'll learn to pick up things for her, and to help her transition from sitting to standing and vice versa. He may even be able to learn how to detect seizures or at least alert us when she is having one. Amazing. He's already a huge part of the family ... and it's only going to get bigger!

If you're looking for inspiration ...

... here's where to find it:
http://sports.espn.go.com/broadband/video/video?id=3696478

Spring is Here!

We made it through fall and winter (i.e. cold and flu season) which is typically our trickiest time with Roxie's health and seizures, which are usually brought on by an illness.  She had a handful of seizures this fall/winter and we did end up in the ER 3 times, but never had to spend the night at the hospital this year.  Roxie's last seizure was in late January and we were able to stop the seizure at home without taking her to the ER.  Yeah!

Over the past two months Roxie has been in great health and has been making some significant strides in her development.  Last week she walked down our hall (probably close to 20 feet) with the help of a walker.  I guided the walker, but she took the steps and held on all by herself. Just last year I really wasn't sure if she would ever walk.  That just shows you to never give up hope! She's been crawling a lot and pulling herself up on our sofas.  Roxie has also become very vocal.  Phelps made a list recently and we realized that she makes around twenty distinct sounds and sometimes uses the sounds appropriately to communicate.  She says mmmm, or mmow for more and ma ma for mom and dad.  And she will say baaa, baaa for bath or ball and pa pa for grandpa.  So cute!  She also can make a few signs for eat, drink, stop and potty.  Roxie is doing very well at school, too and is using the potty pretty regularly both at school and at home.  She even gives hugs now which just melts my heart.  What a wonderful few months we've had.  Now if we can just get her to stop biting and scratching and be sure to ward off the swine flu! 

Finding Meaning in Crisis

Note: This article was first published in my company's eNewsletter and then posted on its blog. Several folks have given me positive feedback on the article/post, and I thought it would be appropriate for this blog as well.

A few weeks ago, a friend forwarded me an article predicting that in 2009, business leaders need to be Chief Meaning Officers. It proposes that given the current crises facing U.S. citizens, business leaders need to make their brands “arbiters of meaning.” That is, consumers will naturally look for products and services – interactions really – that have meaningful alignments with causes greater than their products or services.

The article and its premise got me thinking. Thinking about how and why we tend to look for meaning so much more in a crisis. Thinking about how much richer life is when we do find that meaning. How it expands our world-view and makes us more empathetic and unselfish and grateful.

This type of crisis can be broad (e.g., our economic crisis), but it can also be as specific as it was a couple weeks ago when Captain Chesley Sullenberger was somehow able to land his US Airways plane in the Hudson River without losing a single life. How many of us got teary-eyed while reading the stories of the passengers and their families that came out in the days following the event? How many of us looked at the world a little more wide-eyed, hugging our spouse and kids a little longer than usual? I know I did. And I know those passengers and their families and friends are forever changed. I know partly from experience.

Last January, my then five-year-old daughter, Roxie (who has special challenges caused by mitochondrial disease, which weakens her muscles, brain, and lungs), was fighting for her life in a hospital ICU. Her lungs were attacked by a virus that triggered secondary pneumonia making it very difficult for her to breathe. As a result she spent about three weeks in the hospital. One day it got so bad, in fact, that several doctors and nurses had to manually help her breathe for over an hour. During that time, my wife and I truly thought we might lose our daughter. We found ourselves holding each other, repeating half-silent prayers, begging any higher power that would listen to “please help Roxie.”

Roxie did make it, and a couple weeks later, we were home and very happy as life got back to normal.

But it didn’t get completely back to normal. The experience changed us. Over the next few months, I found myself engaging in more and more long conversations with friends, family, and even complete strangers, searching for meaning and human interaction.

Reflecting on these examples, I think at some point, in any kind of crisis, we realize that we don’t have control over everything, that we must rely on others, to trust others to help us. We start to see beauty in things. We start to find more meaning in everyday interactions, and we realize that “hey, maybe I really can live in the moment.” We find ourselves looking through a different filter than we previously had.

I think this is what those passengers on US Airways flight 1549 are feeling. And I think this type of experience is happening in some small way across the nation as each of us deals with the uncertainty and instability of these changing times. More and more of us are understanding how important it is to listen, to pay attention to the stories of other people, other nations, and other religions. People want to stand for something. We want meaning in our everyday lives, and we are starting to understand that to find that meaning, that beauty, we’ve got to slow down, look around, and breathe.

Thanksgiving Drama

For some reason this never posted a few weeks back ...We had a nice day on Thanksgiving with the Evans family in Greensboro.  Roxie loved the special sweet potato casserole that her Nana made for her and she also tried lots of the other yummy dishes.  She seemed happy and healthy on Thursday.  However that night Roxie woke up around 2:30am and her Dad went in to try to get her back to sleep.  He slept next to her for a few hours and then came running in to get me at 5:40 with Roxie in his arms.  She was just beginning to have a seizure.  We gave her the Diastat shot immediately (Valium)  and the seizure stopped progressing. However she continued to have rhythmic eye movement for the next hour, which we think was continued seizure activity.  Then at 6:40 the seizure began to progress again.  We gave her a second shot of Diastat and left for the ER.  The second dose completely knocked her out and stopped any visible seizure activity.  Although we were initially underwhelmed by the old and drab appearance of the ER facility at Cone Hospital in Greensboro, the staff there was great and took good care of us while we were there.  We do now feel blessed to have such nice pediatric ER facilities in Charlotte.  Roxie continued to be stable in the ER and we were discharged by 10:15.  The blood and urine samples taken in the ER to check for signs of infection were normal as was the chest X-ray, so we still had no idea what had caused the seizures.  Roxie was discharged and we went home hoping she'd just sleep off the Diastat and be fine.  But then just a few hours later Roxie started vomitting.  She was sick on and off for the rest of the day and through the night and was extremely weak.  And on Saturday morning she woke up and wanted to eat and then fell back to sleep for the rest of the morning.  We decided to try to go back to Charlotte at that point since Roxie kept food down for 3 hours.  We'd feel more comfortable in case of another emergency in Charlotte.   She had a hard time on the trip home and was still grouchy for the first 3 hours we were back.  But at 3:00 she suddenly seemed to have some energy  and her mood improved.  She continued to get better for the rest of the day.  Then on Sunday morning Roxie was back to her normal self.  We think that she may have had a stomach bug (again). We were sad and frustrated that we were not to be able to see the Sprinkle and Thomas side of the family as we had planned because of the illness.  But we had to consider that the Sprinkle's farm is at least 30 minutes from an ER.  Phelps and I try not to be tied down because of Roxie's medical challenges, but we don't want to take chances when we know she is sick.  

On Tuesday we met with Roxie's Neurologist, Dr. Nelson,  to discuss where to go from here since she's now had 5 seizures in less than 3 months.  The good news is that the eye movement that Roxie continued to have for an hour last Friday even after the first dose of Diastat is a minor seizure and does not cause brain damage.  Also, she explained that epileptic patients who may have never had a status seizure as a small baby or child, may later have seizures that progress into status.  This is because as the white matter in the brain grows because it allows more and deeper connections of the activity.  I guess that made us feel a little better.  She gave us a new arsenal of medications to try to use when Roxie does have another seizure including a tablet that dissolves in the mouth and a medicine that we can squirt up the nose.  And we have a schedule to increase the anti-seizure medications whenever Roxie does have another seizure.  Dr. Nelson did mention that there was a small possibility that Roxie could be having so much more seizure activity because of a stroke.  We have seen no regression, but she said it is possible the stroke is in an area that doesn't affect development.  Dr. Nelson indicated this is a remote possibility, but Roxie is at risk for stroke because of her Mitochondrial Disease.  So we are scheduling an MRI in the next few months just to take a peak at her brain.  We hope and expect everything to be OK, but it was a reminder that in the future complications and regression are always a possibility for Roxie.  

But to end on a happy note, Roxie has been taking steps with her PT and with her teachers at school for the past month.  Her muscles continue to strengthen!  Yeah Roxie!

New Research on Roxie's Birthday

Today's Roxie's sixth birthday. She had a great day, and it seemed clear that she knew it was her special day. Mom made her a cake and she loved her gifts, one of which was an interactive DVD.

Tonight I came across some very cool research. Not sure whether it has anything to do with Mitochondrial Disease, but it's very interesting.

Bracing for Flu and Cold Season

Every time Roxie coughs or gets a runny nose Phelps and I get a little anxious.  It is impossible to forget the severe RSV and psnumonia Roxie battled last January at Hemby Children's Hospital.  I sometimes have flash backs while I'm in the shower of her surrounded by doctors and nurses helping her breath as monitor alarms buzz and beep (a sound that will forever make me tense) or of her sedated and breathing for weeks with the help of a vent.  Doctors had previously warned us that Roxie is "at risk" for severe illness because of her muscle weakness and Mitochondrial Disease.  But until last January we had been relatively lucky as far as her health goes.  And she did finally recover in early February after 17 days in the hospital and a few weeks on a TPN line at home.  Since then she has been relatively healthy.  Unfortunately over the past two months Roxie has had 3 seizure episodes and 2 illnesses resulting in trips to the ER, but luckily no overnight stays at the hospital. Phelps and I are more than a little worried about any illness that this cold and flu season could bring to Roxie.  She had her flu shot a few weeks ago and we stress the importance of hand washing to her teachers at school and CAP workers at home. We know that totally avoiding germs is impossible especially with the kids in her class. But when an illness does strike we are a little calmer because we are more experienced at administering the Diastat shot given when she goes into status epilepticus (a long convulsive seizure lasting more than a few minutes) and know that in the past her vitals have remained stable during the seizures. So although we are worried about the next 4 months, hopefully we won't have any overnight hospital stays or too many trips to the doctor this winter.  Please remember that everyone should get a flu shot and wash your hands more often to keep our community a safer place for at risk kids like Roxie.