Sunday, September 16, 2012

Transitioning from Baby to Boy

Our little Theo continues his transition from baby to boy.  It's pretty incredible to look back at old pictures and videos and see how much he has developed and progressed.  We're pretty proud of him.  

Once again, I have allowed too much time to lapse between updates.  Life never slows down, does it?  It feels like last week that I was writing an update, when it has been almost two months.  Long story short, Theo is making progress and doing great, but there is still more progress to be made.  Nick and I are still doing really well, too.  We added some new excitement to our lives recently; we closed on a lot in a nearby neighborhood, and will be building a home.  So, we have a lot on our minds right now!

Turning to more important things, which of course means Theo.  First, a medical update:
We started the initial transplant talk back in August, but opted to wait a few more months to start the process in earnest because Theo's growth has tailed off a bit.  Don't get me wrong; he is certainly not withering away.  But, he has dropped from about the 50% for weight to about the 25%, and we know that transplant surgery is a bit easier with a bigger child.  The good news about the weight drop is that Theo is active.  He rolls everywhere, and has started to "moon crawl," as Nick puts it, which just means that Theo ends up moving backwards in a crawling motion.  (Theo's physical therapist would not be pleased; she wants us to help him figure out that he needs to move forward.)  The bad news about the weight drop is that Theo is still having a hard time keeping any food down.

In a lot of ways, Nick and I have just become accustomed to the throwing up.  Case in point: we drove to Richmond last weekend to see my grandparents, and I commented to Nick once we got home that it was the easiest car ride that we have had so far.   He reminded me that we still did three outfit changes, soaked through two beach towels and a blanket with throw-up, and had to stop to change a blow-out diaper in the course of the 4.5 hr car ride.  But, it felt a lot easier to me than past car trips.  :)

Before we move forward with all the evaluations Theo needs to have done to be recommended for transplant, the nephrology team wants to have the vomiting under control.  If it is not under control prior to transplant, it will be very difficult to know how much of the anti-rejection medications Theo is keeping down post-transplant.  So, over the next few months I imagine that the GI team will play an even more prominent role in Theo's care.

We're also working on eating more baby food and solids.  Nick and I had our hands slapped at Theo's 9 month check-up a couple of weeks ago, because we have not been feeding him enough "real" food.  We're working on it now, but it is a challenge.  Theo eats baby food pretty well, but the second something other than pureed food hits his mouth, it causes the entire contents of his stomach to empty.  We are going to work with a speech therapist soon to figure out what we can do to teach him to eat.  All I can say is, I continue to be amazed at how important the kidneys are, and how much having non-functioning kidneys impacts the rest of development.

Now, to the more fun stuff:
Bluffton, SC with the Huxters and Pyles
Theo has a fabulous personality.  He is so much fun.  He rarely cries.  He laughs a lot.  He is incredibly observant.  Some of the highlights from the last two months:
- Theo has a cool trick: he can rock himself in his car seat.  He's earned a lot of admirers as a result.  In fact, one woman told us that "he must be the easiest baby ever," while the manager of a Panera in Richmond comped our lunch one day because he was so impressed with Theo's feat.
- Theo can sit up for long periods of time by himself.  He's pretty proud.  He hasn't learned to fall gracefully yet, though.
- Theo has learned to LOVE the park, particularly the swing.
- First hair cut!  Since his haircut, I am happy to report, I have not been asked, "How old is she?" or "What is her name?"  Nick took a video of the entire thing.  Check it out:
- Theo loves to wrestle on the bed with his dad.
- He loves when I sing "La, la, la, la, la, la, la..." to him, and he has has started to sing back.  (Yes, it may be a desperate attempt by me to get him to say something other than "da da.")
- We visited friends in Bluffton, SC, and family in Richmond, VA.  He even got to see the Spiders beat up on Gardner Webb.  (2 serious football powerhouses!)
- Theo is now attending a Music class and readings at the library with his nanny.  Such a big boy!

Theo was enamored with his Harley-riding Great Pa

Go Spiders!

A note about faith:
Nick and I recently started a new small group with an great group of people from our church. Tonight, we started a study called "Circle Maker."  I was convicted that I have not been praying boldly enough for Theo.  I've been praying, "God, please do what you want in Theo's life."  My dad has often told me that he is praying for Theo's kidneys to be healed.  That amazes me.  I know a lot of you have been praying that, too.  I can't decide if I haven't been praying that because I'm afraid I'd be disappointed if God did not heal his kidneys, or if I just fully trust that Theo was meant to have end-stage renal disease, and God was going to work through that.  Regardless, as of tonight, Nick and I have decided to pray for healing for him for the next three weeks.  We are going to boldly ask for healing of his vomiting, healing of his eating, and healing of his kidneys.  Our nephrologist told us this week that Theo "will always be either a dialysis patient or a transplant patient."  I know God can do more than that.  So, we are going to pray that God gives him a third option.  If you have been praying for Theo, please join us for the next three weeks as we pray for God to do big things.

We hope you all are doing well!  Earlier today, I was going through clothes and other things that I could contribute to a woman who is about to have a baby boy.  Her husband has been deployed to Iraq for 10 months, and she has very little support at home.  As I sifted through clothes, bibs, toys, etc., I was blown away by how much of this stuff that I had received from people who have been praying for Theo.  I haven't even met all of you!  Please know that we are fully aware that Theo's progress has been a result of your prayers and faith.  We feel so fortunate to have you along for the ride with us.

Natalie, Nick and Theo

1 comment:

  1. Aww-this post brought tears to my eyes. So much much has happened in a year already. Knowing AND believing God will do even more, exceedingly more for his little boy, Theo, in the days, weeks, months and years ahead. He's done it already and will continue to. Praying for all of the above with you.