July 5th update

I hope you all had a fabulous 4^th of July.  4^th of July is one of my favorite (if not my favorite) holidays.  Our day consisted of enjoying a breakfast of waffles with strawberries, blueberries, and bananas before taking part in the neighborhood parade, where Theo practiced his walking while holding onto just one of our hands.  To end the day, we hung out on the rooftop of our apartment building before calling it a night ahead of the fireworks.  A lot of family time, a lot of smiles, a lot of love for our country… hard to beat.

Theo is doing really well.  He’s a ham.  And he thinks everything we do is hilarious.  (Nick’s ego is enjoying that!)  We sometimes hear him laughing in his crib.  We don’t know what he is laughing at, but it’s impossible for us not to laugh too when we hear his giggles coming over the monitor.  Even at 5 am.

Saturday update - June 22nd

Pushing his feeding pump around

Just a very quick post tonight: Theo's labs on Thursday were unchanged from Wednesday, which was not bad news or great news.  He was given Friday off from labs (a very welcome day without a trip to the hospital for us), and then went back this morning for another lab draw.

We're happy to report that Theo's creatinine has trended down slightly since Thursday.  It's not as big of an improvement as we'd like (his creatinine is 0.72), but it is headed in the right direction, and it is MUCH better than the 1.2 level earlier in the week.  I'm pretty sure that 0.72 is the best level that he has had since the hematoma caused the acute kidney failure on May 15th.

We're thankful.  We're hopeful.  We love Theo so much, and are having a great time with him at home (teething and all).

Next labs will be Monday morning.  We hope to have nothing but good news to report from this point on.

Hope you all are having a wonderful weekend!  Thanks for loving Theo!

Wednesday, June 19th - back to hoping

Finally sleeping in the hospital

For those of you that are tired of hearing about Theo's ups and downs: Trust me, I am right there with you.  We are drained, and ready for the light at the end of the tunnel.

Theo's labs on Tuesday didn't get worse, but they didn't get better.  Instead of electing to do a kidney biopsy right away, the nephrologists opted to readmit Theo to the hospital and pump him full of IV fluids for a day to see if his kidney was simply dehydrated.  So, he spent all day yesterday and last night in the hospital getting fluids, and then labs were drawn again this morning.  We were excited to hear that his creatinine came back down to 0.85 this morning.  It's still not a great level, but it's much better than 1.2.

Monday, June 17th - A bit dejected

Theo spent most of last week on cruise control. His energy was up, his numbers were improving, and his spirits were high. Then, on Friday, things took a turn for the worse.

Initially, we thought it was simply a bad case of teething (which still might prove to be true). Theo has been sleepy, irritable, fussy, and generally un-Theo like over the past three days. Then, this morning's blood test showed that his kidney numbers had deteriorated rather significantly.  His creatinine when from an acceptable 0.80 on Friday to a slightly less acceptable 1.20. We weren't expecting a move in the wrong direction, and this one was rather dramatic. Kidney function shouldn't move that much that way over a weekend.

Monday, June 10th

Dubya, Theo's transplanted kidney, seems to be WORKING.  Seriously, praise God... for all of the answered prayers, for getting Theo (and us) to this point, and for reminding us that it is an absolute miracle that Theo may be able to live a more full life with Cool Aunt Whit's kidney.

We were encouraged first on Friday, when Theo's labs started to look a little bit better.  Still, there were some conflicting signs (his creatine was down while his BUN was up, when typically they move in the same direction), so we were anxiously awaiting Theo's lab results this morning.  While his numbers are still not perfect, his creatinine has dropped to 0.85 (a normal adult level, but a little bit high for a kid), and his BUN also dropped.  I can't explain how thrilled, or how overwhelmed, we feel.  We've been patiently waiting for this day for several weeks, and we are so thankful to get to it without another setback.

Tuesday, June 4th

We had a busy weekend at home with Theo.  Busy, of course, means we had a picnic in the park....

Home!

 Hugs for Curious George!

We've seen a pretty amazing transformation over the last two days.  Theo has gone from lying on his back, sleeping all day and not smiling to smiling non-stop, laughing, and being very vocal.  It's like he couldn't dream of a happier place.  And we are LOVING it.  It makes all of the recent challenges worth it.

Theo has some work to do in the physical training department.  I doubt he'll be ready for the 2014 Olympics.  What's pretty cool is that Theo has been working with a wonderful physical therapist named Dianne since he was discharged from the NICU.  She came to visit him twice while he was in the PICU, and as soon as Nick called her on Wednesday and said, "We need help," she came right over to work with Theo.  And honestly, he's already getting stronger in the two days he's been home.  I know that sounds crazy, but we've both noticed that he's better at holding his head up now when we hold him, and he's rolled over a few times.  I think being home is where he needed to be.