Sunday, January 20, 2013

A big year ahead

The stud on his one year birthday
2013 is shaping up to be a big year for Theo.  We ended 2012 on a very sweet note, spending two weeks with family, with a family reunion in Branson, Missouri and then twelve days in California.  One of the main highlights of our trip to California for me, other than seeing Theo idolize his cousin, George, was hearing my mom say, "I feel like I really got to know Theo.  I never knew how happy he was!"  She is right; Theo is continually smiling, he laughs freely, and he is happy an overwhelming amount of the time.

I think Nick and I will always remember 2012 as a year full of joy.  We LOVE being a family of three, and watching Theo grow and develop.  He is an amazing boy.

Too much fun with George!

While we were in California, Theo made some huge strides developmentally.  My mom taught him to climb stairs, and from the moment he learned, he could not be stopped.  He also learned to pull himself up, and is now "furniture cruising" between our couch and coffee table at home.  It was also a blast for us to see him develop socially, with his cousins, aunts, uncles, grandparents and great-grandparents around.  Man, does he love his cousins!  And, he relished being spoiled by the whole family.

Progress has been a lot slower in the growth department.  Theo is just now recovering (thank goodness!!!) from three weeks of a cold/virus.  It has taken a toll on him.  While dialysis is going really well, his growth has stopped completely.  In fact, he weighs less than he did in October and is the same height.  He has also stopped eating.  Completely.  He has not had any formula by mouth since December 28th, so as of right now he is 100% tube fed.  Obviously not the outcome we want for him, or for us.  So, we are hoping that his appetite will come back once he is feeling better.

We have a lot of appointments and meetings on the horizon. Theo was referred for transplant evaluation in November, and two weeks ago our insurance company approved our hospital as in-network.  (We were initially told that Theo could have a transplant in one of only two approved facilities in the south east region - one in Florida and one in Maryland.  Thankfully, another family was told the same thing last summer, and they spent six months appealing before Carolinas Medical Center was added to the list of approved facilities for our insurance carrier.)  Now that everything is approved, several things have been scheduled:

  • On Friday, Theo will have his first of two iron infusions at the hospital.  Despite the fact that we give him supplements at home, his iron level is still too low.  So, he'll get an IV this Friday and next, with iron dripped through his veins for an hour.  During the infusion, the nurses will attempt to get enough blood for his lab work for transplant.  I'm a bit nervous about these infusions, because Theo is known for being a very "tough stick."  It's hard to even just draw blood, much less start an IV.  Two IVs in consecutive weeks is a tall order.
  • On January 31st, Nick and I will meet with the transplant coordinator, the financial planner (because there are a lot of expenses out-of-pocket for transplants), the social worker, and Theo's dietician.
  • Theo, Nick and I will meet with the transplant surgeon.  The surgeon we meet will perform the transplant if we have a living donor.
  • Theo will also be getting various tests: chest x-ray, follow-up urology appointments, an EKG and echocardiogram.
  • Once Theo has been through all of his tests and meetings, a committee will meet to determine if Theo is a candidate for transplant.

How are we feeling?  I'd say that Nick and I are both excited and nervous.  When I start to think about all the details of transplant, then details after transplant, I start to get overwhelmed.  So, I'm trying to take everything one step at a time and not sweat the small stuff.  Fortunately, our faith is strong, and our marriage has never been stronger, which keeps us both grounded.  Seriously, I am so thankful for having such an incredible partner by my side.

There are definitely some prayer requests this time:
1) That the IVs are started without trouble this Friday (Jan 25th) and next Friday (Feb 1st).
2) That Theo is deemed a good candidate for transplant.  While there has been no sign of any other health issues that would prevent him from being a candidate, I don't even want to think about what will happen if he is not a candidate.
3) That his appetite will return!  At best, tube-feeding him is inconvenient.  We are ready for him to eat and grow again!
4) That we will not be overwhelmed by this process.  From little things, like missing work for Theo's appointments, to bigger things, like starting to worry about cancer risks from the immunosuppressants he'll need to take after transplant, there is just a lot that could consume us.  Please just pray that we will keep things in perspective, and be reminded throughout the process that God is in control and has provided for us each step of the way.

I will provide another update once we have some news about the transplant process or Theo's appetite.  In the meantime, we will continue to enjoy time as a little family, taking walks in the neighborhood, pushing Theo on the swing, helping Theo learn to walk, and being so thankful for all of you, your friendship and faith.
Family in Branson, Missouri

Until next time!

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