Sunday, December 21, 2014

And just like that...

Theo turned 3, Nora is 8 months old, and 2014 is drawing to a close.  Life really does go so fast.

It feels like it has been a game-changing few months for us.  We've traveled a lot (to visit family in Punta Mita, Mexico; to spend time with great grandparents in Palm Beach, FL; to see cousins in D.C.; and to spend time with family and friends in Kiawah, SC), we've kept busy at home, and we've settled in more to life as a family of four.  The game-changers: Theo is now potty-trained, sleeping in a big boy bed, and taking all of his nutrition and medications by mouth.  What a HUGE difference that all makes!

Moving Theo to a big boy bed was an emotional milestone for me.  I was honestly choked up by it.  We had planned to wait to move Theo into a big bed until he was done with overnight feeds through his feeding tube, which in September still felt like it was years away.  For whatever reason, we decided to try a few nights without feeding him 500 calories overnight, and his appetite during the day noticeably improved.  We have not run any feeds for months now, and while he's not gaining weight, he's not losing it, either.  (He hadn't gained weight with the overnight feeds, either.)  Around the same time as moving to only oral feeds, he decided that he wanted to take all of his medications by mouth, by himself.  Now, he gives himself the syringes of medication twice a day, calling one, "ice cream, one "banana," one "rocket cracker," or whatever else suits his fancy at the time.  He's a champ, and knows he takes his medications to "keep Dubya happy," still.

Growth is still a challenge, with no weight gain recorded since he turned two.  (He's actually lost weight this year, and only gained a little height.)  We're awaiting insurance approval to begin growth hormone, which we hope will help.  I'm hoping he will adapt to daily shots as easily as he has adapted to taking his meds by mouth.

Theo's kidney, Dubya, is still happy and doing great.  She certainly gives him a ton of energy.  Theo's labs have all been stable over the last few months, so it's been nice to have fewer lab and clinic visits.  He recently had an echocardiogram and a kidney ultrasound, and all checks out.  From a personality stand point, Theo still loves cars and anything with wheels, and his obsession with ceiling fans has not waned.  His favorite thing to watch on youtube now is random video of ceiling fans being turned on and off.  What, that's not what you do in your free time?

Theo and Nora's relationship continues to develop.  They are buddies!  Yesterday morning, Theo went into Nora's room while we were all waking up, and Nick and I laid in bed listening to the two of them interact.  It's so fun to hear Theo talking to her, and hear her laugh and clap with him.  I'm excited to see them grow up together.  I think they are both pretty special.

Nora is amazing.  She is still such a happy girl, and so easy going.  She's already pulling up on anything that she can, and we're told by her daycare teachers that she'll be walking in no time.  She weighs slightly over 20 lbs now, still at the top of the charts for height and weight.  We've been asked a couple of times over the past few months if Theo and Nora are twins.  (I'm not kidding.)

I thought I'd include my favorite comment from Theo over the last couple of months.  It occurred when he saw me wearing black tights for the first time this winter.  He said, "Oh mommy, I love your legs!" I laughed and thanked him, and then he asked, "Did you paint them?"

In closing, I thought I'd share my thoughts on joy.  The message at church today was about how joy is not a feeling, but a divine dimension experienced only by being close to God.  I couldn't agree more with this, and believe that joy can be experienced in any circumstance (rich, poor, healthy, unhealthy, etc) as long as we are walking with God.  For us, while we certainly wish for Theo's sake that he had been born with functioning kidneys, the life we are leading and experiencing as a result is pretty amazing.  I think we appreciate a lot of little things more than I ever would have if Theo's development had always been considered typical.  We've really learned to trust, and not just know, that God is in control.  We've been able to support and encourage other families who are dealing with similar medical problems.  We've become involved in different organizations that support the hospital, and have developed real, raw relationships with hospital staff.  In short, we've experienced joy in deeper ways than we ever had before.  My hope for everyone at Christmas this year is that, no matter your circumstances, you would experience true joy.

Merry Christmas!

1 comment:

  1. I love reading the updates - so glad you still do them! Ashley