New Blog for Nathanael

We recently started fundraising with COTA to cover Nathanael's medical expenses, so updates about him will be on his new blog from now on: Please check out the blog, pictures, and opportunities to help, and feel free to pass along the link to others. We appreciate your concern!

Friday, November 23, 2012

Ohio Adventure - 3 years post-transplant!

On the plane - snack time!
In mid-October, Nathanael and I flew up to Ohio for his 3-year post-transplant check up, and it was quite an adventure for us.  To start with, our flight was cancelled due to mechanical problems with the plane.  We were offered another flight into Columbus, but it would have landed at 10:30pm, so I chose a flight into Dayton that landed around 8:30pm.  However, our rental car company didn't have any cars at the airport there, so I needed to book another car that day.  I was thankful to find another one at a great price.  What I failed to consider, though, was drive time from the airport, west of Dayton, to Jeff and Julie's house in Gahanna, just 10 minutes from the airport in Columbus.  We got to their house close to 11:00pm anyway.  Oh well.  Lesson learned.

Part of the fun was seeing old friends and meeting new ones.

Such kissable cheeks!
We enjoyed some time with Jeff and Julie in Columbus.  Nathanael and I even got to visit Julie at work and listen to the junior high orchestra as they rehearsed...such fun for me!  Nathanael was a little shy, and spent some time under the chairs playing with his bus and train.  We played with ping pong balls that afternoon (which Nathanael loved!), and had dinner together that night, which was a good thing, as that was our only family meal.  It was a busy trip!

We visited a college friend of mine at her workplace and had lunch with her.  It was so good to catch up.  Nathanael entertained himself by playing with his bus and train on the table.  (Notice a theme here?) 
In the cockpit...having a blast!

On Wednesday morning we drove down to Cincinnati for his 3-year-post-transplant check-up.  We had a wonderful visit at the hospital, seeing Nathanael's first child life worker, who remembered holding him on his first day in the hospital at 11 weeks old.  She also created our book on handwashing and germs that the boys have "read" many, many times.  She said they'd used it with many other families, which was fun to hear, as she and I had dreamed up the idea of basing a book on "One Fish Two Fish," Jamison's favorite book at the time.  Our nurse coordinator, who has communicated with me since March 2009 (once we knew we were having a boy) was surprised to see how Nathanael has grown, and especially loved his thick, wavy hair.  He even took some pictures of him for an internal staff newsletter featuring transplant survivors.

Enjoying lunch at Westminster Thurber Retirement Community
After our great visit at the hospital we met a friend and her son for a picnic lunch.  She used to bring food to me while we were in the hospital, and has provided a listening ear during our challenging journey, and it was so good to be able to visit, even for a short time.

Breakfast at the hospital

That afternoon we got to spend a few hours with another family whose little boy had a cord blood transplant for Wiskott-Aldrich Syndrome.  We actually met online because my friend with whom we had lunch met this other new friend in the mall.  This was most certainly NOT a coincidence, but a God-ordained meeting, planned to encourage all of us.  This is only the second family I've met in person who have been affected by WAS.  She and I had talked on the phone, but were so glad to finally meet.  It was awesome to see Nathanael play with their two kids, and I could have spent all day with the parents, as we had so much to share and talk about.  We're planning to see them again soon, as they'll be in the Dallas area visiting family over the holidays.  :-)

Posing for newsletter pictures in front of the jungle mural
Our last stop in Cincinnati was to see some high school/college friends at their house for dinner. I wish that Brad and Jamison had been with us, as they were both missed that evening, and would have enjoyed that time all together.  Nathanael had a wonderful time playing trains with their boys, and we had some time to visit and catch up.  She remembered Nathanael as a tiny baby, as she helped me with his care, and also provided food for our family during our stay.  It's just a blessing to be with friends who have known you and your family for so long.

There were many other friends we missed on our visit, but we're thankful for the ones we did see in the short time we had.  We drove back to Columbus that night to stay with Jeff and Julie, and spent one more morning taking in the view of the sunlight on the pond through the beautifully-colored trees from our second story window.  That morning we did get to meet up with two of my high school friends who helped pray us through transplant.  I hadn't seen them in almost 20 years, so it was a sweet reunion.  We laughed and talked about so many things.  And of course, Nathanael played with his trains and bus again.  :-)

We returned our rental car, boarded our flight, and headed for home.  What a wonderful trip!

I'm finally posting this report on the 3 year anniversary of Nathanael's transplant, and am so thankful to be home again this year, to have two healthy boys, and to have what I like to call "normal kid problems," like two little boys butting heads or fighting over toys, spilling milk and making a mess, whining about something or not wanting to get out of the bathtub.  Every day I am reminded of how God has blessed us with His perspective and through the absence of health problems for our boys.  He could have chosen to provide for us differently than He did, but we are so grateful for what He has chosen to do.

I should mention that after we received his lab results a few weeks later the doctor told us everything looked great.  No concerns!  While the BMT fellow had initially expressed some concern about Nathanael's growth, he and our doctor seemed satisfied when I told them where Jamison was on the growth charts.  Nathanael had started life as a bigger baby than his brother, and then grew like a weed for 3 months (he weighed 15.7 lbs at 11 weeks of age!) he is now at a much lower percentile on the charts.  He does seem to be in line with where his brother was at this age, wearing the same clothes that Jamison wore at 3 years old.  Our doctor would like to see him one more time next year before spacing out our visits by several years.  Of course, I'll miss those visits, as it does feel a little like going home.  Even seeing the sweet smiles of the unit receptionists whose compassion was such a comfort three years ago was a blessing.

As you are grateful this year, and as you praise God for His provision for our family, please pray for the families of kids who are sick.  If you are on Facebook feel free to check out my page for the kids I follow and pray for.  One girl is having her bone marrow transplant today, another boy is going home today for the first time in 5 months.  Many families need your prayers and support.  We were blessed through all of you, and want to find ways to bless others.

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God."  - 2 Corinthians 1:3-4

Sunday, August 19, 2012

Three Years Ago...

Three years ago today (at 3:18am) our precious second son was born.  Our lives were changed forever.  Before 5:00am that same day, the doctors came in to tell us that Nathanael's platelet count was low...and we knew then that he had been born with Wiskott-Aldrich Syndrome.  What opened one of the most difficult chapters in the life of our family to date has now become a distant memory: this fall he will have his 3 year-post-transplant check-up!  What once almost completely defined our little boy has now become just a footnote in his medical records.  We are so thankful that the Lord chose to heal him completely.

At age three Nathanael is an active, busy, somewhat bossy and very determined little guy who loves to tackle his big brother, talk about dinosaurs (and pretends to be one!) and trucks, and will crawl on the floor almost anywhere.  He's adventurous, silly, and opinionated; he's also loving and cuddly (he will even ask me if we can go snuggle!), and he'll sometimes grab my face with both hands and kiss my cheeks, while telling me not to laugh.  (I can't help's so cute, especially when he tells me how he loves my "precious cheeks"...think I've said that to him just a few times?!)  He is strong and fearless, even in the face of doctor and dentist visits, including blood tests.  He is still learning to be gentle.  ;-)

He loves to sing (on his own terms, of course: Dinosaurs A-Z is probably his favorite, followed closely by several songs from a Veggie Tales CD we have), loves to run and be chased, enjoys climbing, and wants to jump off furniture like his brother.  (Last week at the park he scraped one elbow and both knees, and I didn't see any of the "accidents" wasn't until later that I realized he'd been hurt at all!)

Some days it's hard to believe that this crazy little boy was once very sick and medically fragile.  Sometimes I wince just thinking about the germs he's picking up (and putting straight into his mouth - he still has one 2-year-molar that's coming in, so he's teething and constantly chewing his fingers), and then I'm thanking the Lord that we are no longer concerned about all those germs!

So when you think of us, join us in thanking God for our healthy, happy, crazy little boy who brightens up every room he enters with his contagious smile!  And then pray for those you know whose little ones are sick, or are struggling in some way, and give them a call, or drop them a note just to let them know you care.

Happy Birthday Sweet Boy!  We love you!

Saturday, August 11, 2012

On Wisconsin!

While Brad spent the weekend in Detroit with family recently, the boys and I flew up to visit my parents in Wisconsin.  Mom and Dad have lived northwest of Milwaukee, in Slinger, for 7+ years now, so with some of my cousins and an uncle and aunt not too far away, it has become home to them.  However, since the boys had only been up there once (last fall) and only for a few days, this was a great opportunity to spend more time enjoying their home and exploring southeast Wisconsin!

Butterfly Garden
Flying a kite at a park near the lake
We had a busy week, started by an early morning flight (we left the house at 5am) to Chicago, a drive to Milwaukee, a park right on Lake Michigan (where Jamison flew a kite for the first time!), and the Milwaukee Public Museum (Natural History), where the boys found plenty of animals to check out, before heading home for dinner.
Jamison with a praying mantis
Wishing they could run with the animals

Pressed against the glass checking out the antelope

Riding a bear at the museum
The next day we took it slow, playing at my parents house, and not venturing too far, as we needed some rest!  (Both boys napped - a big deal for Jamison, who stopped napping LONG ago.)  We did manage to find a local Germanfest where we enjoyed live polka music while eating bratwurst for dinner.  The boys had fun in a bounce house and playing at the playground there.
Enjoying German Night at Regner Park in West Bend with Grandma & Pop Pop

Someone liked the slide!

Visiting camels at the Milwaukee Zoo
We got close to the flamingos
Look at those grins...these boys love the zoo!
Tired after 6 hours of walking
Friday we planned a trip to the Milwaukee Zoo, and we spent all day seeing shows, exploring various parts of the zoo, and looking for air-conditioned buildings where we could take a break from the heat and refill our water bottles!  I especially enjoyed the tall trees (and the shade they provided) throughout the zoo, and the boys loved the variety of animals.  After spotting peacocks in quite a few places, and two crossing the street, we decided that they thought they owned the place.  Our favorite parts of the day may have been the shows: we saw a water show with a sea lion and two harbor seals, one on birds of prey, and one called "Alien Invasions" about non-native species and their impact on the environment (i.e. zebra mussels in the Great Lakes).

Saturday we experienced what seems to be a tradition in most small towns in the midwest: the local festival.  Port Washington is a medium-sized town on Lake Michigan which hosts "Fish Day" each summer, and boasts the "largest one-day outdoor fish fry" in the world.  The boys and I left early with my dad to catch the parade,
Parade watching with Pop Pop George
which we enjoyed, and after work my mom joined us for a yummy lunch of fresh fish.  Had it not been for the heat we would have stayed longer to walk around the art show, or maybe take the long walk down to the beach (looked like hundreds of stairs, and none of us wanted to carry two tired kids that far!)...but it was a fun day.
Lake Michigan - view from Port Washington, WI

The boys and I with Grandma Bonnie

Port Washington's location on the lake, many sailboats, and the festival atmosphere reminded me of Vermilion, Ohio, a cute town on Lake Erie where Brad and I lived for five years.  It is also home to the Festival of the Fish, a fun local tradition. 
Jamsion's Jenga-block tower

Building with Lincoln Logs!
We attended church together, played at their house, and spent some time with extended family.  The boys were thrilled with the basement, where they could build and drive trucks to their hearts' content and leave the mess to clean up later. 

Fun on the deck

On Monday we went swimming with a friend at the private lake in her neighborhood.  Jamison and I got to watch small bluegills swimming near our feet, while Nathanael mostly wanted to dig in the sand.  It was fun to watch the boats in the other part of the lake too.  While it was hot outside, the water was pretty comfortable, as there was a slight breeze and a place to sit in the shade.
Enjoying sand and shade at the beach
Monday night we went to our first little league baseball game to see our cousin play (and to play on the playground nearby).  Here's a pic of the boys with our cute!

Monday night we went to our first little league baseball game to see our cousin play (and to play on the playground nearby).  The boys found a toy they could sit on that operated like an excavator, and both tried it out (and both bumped their heads on it), though it was better suited to someone Jamison's height.  They also both rode a merry-go-round for the first time!  (We don't have them at parks here, so they both watched for awhile before trying out the new park equipment.)  Fortunately they did have some help from their cousins. 
Jamison helps get it started...

Here's a pic of the boys with our cute!
The kids enjoyed playing together

On our last day in Wisconsin we dropped off my mom at work, then spent time at a park in town, and visited the local library.  We had a quiet afternoon at my parents' house while I packed and prepared for an early morning.  Since our flights were through Chicago (O'Hare) we needed to leave around 4:00am for our 7:15am departure.  To my parents' great surprise, all was packed and ready by the time I went to bed around 10:00pm, AND we were able to get the luggage, the boys, and myself out the door, into the car, and on our way about 5 minutes early!  (If you ask, they'll tell you that the only time in my life I was early was at my birth; and my brothers could easily tell stories of me missing the bus numerous times in high school; so for me, this was a momentous achievement!)

Though we missed Brad, as this was the longest we've all been away from him in the past two years, we were really glad that we had the time and resources to travel to be with my parents.  We still missed some of my cousins I had hoped to see, but were thankful for the time we had, and for the good memories.  It was pretty sweet to see the boys run to meet him in the baggage claim area at the airport.  If one hand had been free, I'd have taken a picture, but as it was, I'll remember the scene and smile, just the same.

Saturday, June 30, 2012

Trail West Young Life Family Camp, Buena Vista, CO - Part 2

Here are more pictures from our wonderful week at Young Life Family Camp:

Going back down the mountain...

...and enjoying the view

On the bus ride back to camp...

...and still smiling!

Three smiles...

...four smiles...but not all eyes forward...
...and the best picture of Brad & the boys with "Luke LaRoo, Chipmunk Wrangler"

Happy 15th Anniversary to us!
Jamison on a pony ride
He did great coming down the small hill!
I think he would have liked to go around again...but other kids were waiting
Nathanael on a pony ride

Doesn't he look grown up?!

"Okay...straighten up and hold on"

"I made it down the hill!"
Add caption
"Okay, at least I got my hat back"
Rancho Caballo, where we rode horses

While there are no pictures of us square-dancing as a family, we all had a great time. Jamison got to dance with us, and Nathanael remained firmly attached to my arms while I tried to "swing-yer-partner round and round."  At least doing the "do-si-do" only requires use of the legs, not the arms!  I laughed so hard at Brad's antics during the Virginia Reel that I thought I'd either fall over or drop Nathanael.  (Fortunately, neither of those things happened, and with help from some friends we managed to make it through the dance!)

A real, live Pronghorn!

We know she's female, since her horns are short.

Giraffe feeding-time at the Cheyenne Mountain Zoo

It was so hot, but the boys had fun anyway
"You want me to stand next to what?!"

"Okay, so it's a FAKE mommy lion...much better!"

We could see smoke from the zoo...
Young Life headquarters
It's easy to find a place to fit in when you're little..
After we left camp we took 2 more days to get home, making a stop at the Cheyenne Mountain Zoo.  We had planned to avoid the Texas heat, but found ourselves in 100+ degree weather anyway.  We also witnessed the initial phases of the Waldo Canyon fire outside Colorado Springs.  The fire looked to be extinguished when we left the next morning, but we later learned it had flared up again, and had quickly done some serious damage.  (Please continue to pray for rain, fire containment, and the safety of those affected.)
Playing with "bugs" on the floor at the hotel

...sometimes the places are fun, too!

Brad requested this stop, but we all opted out of the 72oz steak challenge. The boys enjoyed the atmosphere and animals on the walls.