Wednesday, June 6, 2012

An Update for May

Theo with his dad at Wild Dunes
Since I last wrote, life has been a bit crazy.  But crazy has been good.

Several things have not changed:

1) Theo still has the best dad in the world.
2) We still love Theo's nurses who come during the week.
3) Theo's been showered with love from lots of family visitors.
4) We continue to believe that Theo is an absolute miracle, and that God is working in his life.
5) He keeps growing like a champ, and is still exceeding our expectations in nearly every way.

A few things have changed:

1) As of a little over a week ago, Theo has now spent more days at home than he has in the hospital.  Hooray!
2) Theo rolled over (numerous times!) a few weeks ago.

Rolling over!  He hasn't figured out what to do once he is on his tummy
3) We had a lovely family vacation at Wild Dunes in Isles of Palms over Memorial Day, where Nick officiated a wedding for some friends.  (Talk about a beautiful bride and handsome groom!)  It was a spectacular weekend for us.

Medically, Theo is still doing great.  Dialysis has been working like a charm, with only minor setbacks.  His growth has been great.  Before he was born, I was told to expect that he may never be on the growth charts.  We have Theo's 6-month appointment on Friday, and, weighing in at 17 lbs now, I'm confident that he will measure near the 50th percentile for height and weight.  We've changed his medications slightly based on lab results (stopped giving a supplement, re-started his 3x per week shot).  All in all, though, there are no notable updates on the kidney front.

Our biggest challenge right now is dealing with Theo's reflux.  He's always thrown up more than your average baby, but his reflux has intensified in the last few weeks, to the point where he is clearly in pain throughout much of the day.  As a result, for over a full week, he refused to eat during the day.  (I've said it several times before, but the g-tube is one of the best inventions for Theo.)  Nick and I have definitely been stressed about the eating.  It is very difficult to try to comfort Theo when he is both very hungry and in a lot of pain.  So, last week our nephrology team referred Theo to a GI specialist to help.  We're on step 1 of a multi-step approach to dealing with his reflux, and I am hopeful that Theo will be back to eating like "normal" again.  (I am still not entirely convinced that Theo wasn't acting up in order to get us to take him back to the hospital, where he loves to wiggle on the paper on the examination table.  He's a pretty ingenuous kid.)

We are loving life, and settling in to our routine.  Earlier this week, I re-read some of the emails I had sent to friends and family last summer when we first found out about Theo's kidney issues in utero.  All I can say is: WOW.  God has answered some big prayers.  I'm amazed that we have a son as healthy, active, and happy as Theo.  Thank you all for your continued thoughts and prayers!

A few more pictures from the last couple of weeks:

Theo loved getting his feet wet!

A tuckered out beach boy
So much fun with Grandpa this morning!

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