Tuesday, July 17, 2012

Time Flies

Special boys and special bears have dressings!
I cannot believe that it is already mid-July.  Where has the time gone?  I apologize that I have been less than stellar at keeping the blog updated.  In our case, no news is usually good news!

Hello, cords!
We've had an excellent month (or more) since I last posted.  Theo is the happiest little guy, and I feel so lucky that he is my son.  I wouldn't trade him for the world.  He is still growing well, and has become a lot stronger in the last month.  He rolls over non-stop now; we can't keep him on his back, no matter how hard we try.  While that is a great sign about how he is developing his gross motor skills, it means that we get a few extra alarms during the night because he is not draining well on his dialysis, and it means that we wake up to find him with cords wrapped all around his body.  Nick may have a heart-attack from the stress of the cords one day soon.

Ninja Theo at his monthly clinic visit
At Theo's monthly clinic visit last week with the nephrologists, we learned that he now meets the minimum weight for transplant.  Isn't that crazy?  Time flies!  To think that a baby can receive an adult kidney when he weighs only 17.6 pounds is a true miracle of modern medicine.  We will kick-start the transplant process next month.  We will have meetings with the nephrologists, the transplant coordinators, and the social worker, to name a few.  Once we meet with everyone, Theo will go through a whole battery of tests to make sure that his body can support a new kidney.  (For example, they need to make sure his bladder could handle the urine output from a new kidney, and they need to make sure his heart is strong enough.)  Once he gets the "all-clear," we will start talking about his options for transplant.  Let me tell you, I am absolutely devastated that I cannot be his donor.  It's a crazy feeling to think that Nick and I will have to let someone make the choice to go through major surgery to provide Theo with a live-saving transplant.  I wish it could be me.  (Shameless plug: for those of you not registered to be an organ donor, please consider changing your mind!  Your organs could save someone like Theo!)
Eating is fun again!  Hooray!
More good news this month: we finally have Theo on a medication that makes him comfortable, despite his reflux.  Thank goodness!  While he still throws up several times a day, he is eating great and does not seem to be bothered.  That is a major answered prayer.  Prilosec is doing the trick for him.

Nick, Theo and Grandma Ronni!
Away from the medical news, we have had such a blast with family visiting.  Nick's mom came into town one weekend, my grandparents drove through Charlotte and spent a couple of nights with us, my twin sister and her family came to visit over 4th of July, and then my mom spent a night with us last weekend when she missed her connecting flight headed home from work and was stuck in Charlotte.  (Yay!  Thank you, US Air.)

Enjoy some of my favorite pictures from the month.  Also, be on the lookout for an upcoming posting from Nick, as we approach the the one-year mark of when we first found out that Theo may have medical issues.  While I tear up every time I think about the day of the 20-week ultrasound, and all the worry and hope that followed, I know that God knew exactly what he was doing.  And, I feel so completely and totally blessed to be leading the life that I had never planned for myself, with the most incredible husband by my side and the toughest and happiest boy to join us in the adventure.

Nick, Theo, Justin and George enjoy a hike down to the water at our mountain retreat
Happy late 4th of July from Theo, George and Anna... three happy campers!

Twin reunion with our three kids!  (In case you can't figure out which twin is which, I am the better looking one.)

One happy family!


  1. Great progress, and an answer to prayer!

    So... Of the twins, you're the "better-looking one," huh? Sibling rivalry NEVER ends. Hahaha.

  2. Hi! My name is Katie and I met you all at Mosaic at the baby dedication. My sister Maddie sings there. Wondering what the best way to get on the registry for donations is and if there one specifically to see if you are a match for Theo? I personally would like to see if I could be a match and would like to spread the information! So glad to see Theo is doing so well.

    Katie Burns

  3. Hi, It's Lorraine, Jenny's Mom, or as I am now known as Gaboo! to Annie and Abby! I am so glad to see the updates and pictures of both your families--you re beautiful--What answered prayers for little Theo--we will continue to keep him in our prayers for a donor. What happy reunions you all have to look forward to and having all the children meet. We are waiting for little Connor to make his appearance now any time. But he is on his own timeline. Greg will come over later in August one Connor is safely here. In the meantime, I am having a great time with my A-bombs! God Bless you all.