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