Final Preparation for Team Theo! This Saturday!

This Saturday is the big day for Team Theo! We'll take the National Kidney Foundation (NKF) Charlotte Kidney Walk by storm, and it should be a really fun time. Here are the details:

• If you haven't yet registered to walk with our team, please do so at www.walkwiththeo.com. This will make sure you're in the NKF system, and you'll get a free shirt!
• We'll plan to meet at 8:00 AM at Gateway Village in Uptown Charlotte
• We're providing donuts and mimosas (yum) for those who want to enjoy
• Opening ceremonies are at 8:30, and the walk will begin at 8:45
• After the walk, School of Rock will be performing, so stick around and enjoy!
• NKF is also offering a kidney screening, and they're hoping to get 100 people checked
• Don't expect a high intensity event. It should be a really fun morning

Thanks for being a part of our efforts to support NKF. Theo is excited to see you!

 

An Update on Theo and a Great Opportunity!

Natalie and I wanted to provide an update on Theo, and invite you to be a part of something happening in Charlotte in June (www.walkwiththeo.com).

First, the update:

On April 25, Dubya (Theo's certified pre-owned kidney) will celebrate his third anniversary in Theo's belly. I've taken some time over the past few days to reflect on the changes that Dubya has brought, and the progress that Theo has made, over the past 36 months.

To be sure, 18 month olds and 4 year olds tend to have little in common with one another. In Theo's case, I think these distinctions are amplified. Dubya brought Theo energy, an appetite, an ability to grow, and a zest for life that we had only dreamed of seeing at this point in his life. In fact, his swim and soccer coaches probably wish that we could tone down the energy level for his classes, as he (like his father did at the same age) seems unable to stop having fun long enough to pay attention to what they say.

Watching his little sister grow (Nora is now 2!) gave us a new perspective, as the thought of our beautiful girl going in for major surgery at 18 months was unfathomable. With Theo, we marched right on, knowing it was the best thing for him.

Theo showed Nora around the hospital. 

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!

August update

Too much time has elapsed since I posted an update.  I had planned to post immediately following Theo’s 1 year kidneyversary, but other items on my “to-do” list won out until now.  It’s amazing how little free time I have now between raising two kids, working, and all the other things we’re committed to.  So, please forgive me for the delay in providing you all with an update!  I’ll try to concisely recap the last 4 months:

·         Kidneyversary: Theo and his new kidney, Dubya, celebrated their one year Kidneyversary on April 25^th.  While we were sorry that we couldn’t spend it with Cool Aunt Whit, Dubya’s previous caretaker, we were honored to be surrounded by some of our closest friends and Theo’s biggest cheerleaders (including a couple of his NICU nurses and our genetic counselor) one year after transplant.  It’s incredible to think how much has changed in our lives since Theo got Dubya.  We’re hoping that this is the first of many kidneyversaries for Theo and Dubya.  

Theo with two of his NICU nurses and his former nanny at his Kidneyversary party

Welcome to the world, Nora!

The Foy family has grown by one since our last post!  On April 2nd, Nora Whitney Foy was born, causing our hearts to grow even more full with love as soon as we met her.  She's been home with us for two weeks now, and we all love being a family of four.

Life with a soon-to-be 2 year old

Smiles in the sand!

In just a few short weeks, Theo will turn two.  What a two years it has been!  You know how there are certain times in your life where you feel like SO MUCH life happened, that it couldn’t possibly have been only 2 years?  We feel that way.  Not only has Theo brought us immense joy, but we’ve been able to witness first hand, and in a big way, how big and good God really is.  So, we approach Theo’s birthday, which happens to fall on Thanksgiving this year, with overwhelming thanksgiving for the boy he is, the lessons we’ve learned, and all that God continues to do in him, through him, and through all of the people who have prayed for, cried for, and supported him (and us) along the way.

Milestones!

August turned out to be a splendid month.  After a successful and uneventful procedure to remove Theo's dialysis catheter, we are happy to share that Theo's labs have been stable, he is full of energy, and he has reached new milestones on the development front.

Some of the highlights from the past month, in picture form:

Theo took his first bath.  It's safe to say that he loves being in the water.

August 5th update

Our new home!

It’s been a busy month for the Foys, so forgive me for letting so much time pass without posting an update.  We just moved into our new house, which we LOVE, we have been without internet for a period of time and we are just plain busy. 

Theo is great.  I love him to pieces.  He is such a good kid, with big smiles and an easy laugh.  He’s loving all the extra space that our new house affords; apparently I was not the only one who had outgrown our apartment.  Medically, he is still doing well (yay for no dialysis!), though we continue to pray for continued improvement in his kidney function and a stable Prograf (immunosuppressant) level.  Until then, he’ll continue with labs twice a week at the hospital. 

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.

Tuesday Update - May 28th - Homecoming for T

Natalie and I are happy to share that Theo was discharged today, and is now comfortably sleeping in his own crib for the first time since April 23rd.

Theo knew it was time to leave.  Goodbye, leads!

We are so thankful to have him here, and are overwhelmed with pride for the way our son handled the events of the past few weeks. We're not out of the woods yet; not by a longshot. Dubya is still taking her sweet time to wake up, and the process to ween him off of his sedation meds is somewhat cumbersome. But, by the grace of God, he has survived this ordeal.

Monday update - May 27th

Theo rolls in style

Discharge is still tentatively scheduled for tomorrow.  Theo will likely get another round of dialysis (after having the day off today), and if labs look ok and we are able to get the equipment and medications we need, we'll have our family under one roof tomorrow night.

Honestly, I am feeling really sad tonight.  I'm disappointed that, after five weeks in the hospital, we are bringing Theo home without a functioning kidney and in worse shape than when he left.  When I told my dad that, he reminded me that we're bringing Theo home with so much potential.  We're going to continue to pray for that potential to be realized.

Sunday update - May 26th

Theo has had a big weekend, and we have much to report.

First, we're happy to report that Theo was moved out of the PICU yesterday, and now calls a lavish suite on the 8th floor home. It's great to get a change of scenery, and we've even got a great view of Myers Park.

Daily dialysis has continued, and we continue to anxiously await Dubya's resurrection. He's been tired during the day, likely due, at least in part, to the dialysis which is known to make patients feel lethargic.

We got a positive test result from the renogram on Friday, showing that Dubya is taking in fluid. She's not yet spitting out much urine, but the team was pleased and thinks she is poised to recover at any time.

And, today, we got to take Theo outside.

Theo's first trip outside in over a month!

Friday update - May 24th

Happy Memorial Day weekend!

Theo, Aunt Hil, Grandpa and Harold the helicopter

Theo's had a good few days.  He is doing really well off the ventilator, he is more active and awake, and his belly looks much better.  As icing on the cake, he's been spoiled by my twin sister for three full days of loving, and he is still enjoying quality time with my Dad.

It's been fun to watch Theo get interested in toys and books again.  Hilary, my twin, brought him a toy helicopter named Harold, and he is enamored with it.  He finally moved both hands from under his head on Wednesday and held Harold in one hand while he used the other one to spin the blades.  When I tried to take it away from him at almost midnight, he cried.  He's ended up cuddling with Harold since then.

Wednesday update - May 22nd

Theo has had a great couple of days, but there is still work to be done.

On Tuesday, he was extubated and is no longer on the ventilator (again). His bowels started moving in a big way, and he is much more comfortable (again).

Mom and Baby T

He spent most of Wednesday awake, and continued to recover. Mom even got to hold him (again).

Now, we continue to wait for Dubya to recover fully. We are hopeful that it happens soon, but it could take days or weeks to get back into working order. In the meantime, Theo continues to receive a few hours of dialysis, and at this point the plan is to move him out of the ICU by Friday.

Our prayer is that we can bring home a boy who has a beautiful, new, functional kidney.

We continue to be amazed by the prayers and support we have received. As of now, Cool Aunt Whit is in 1st place(!) for the SF Kidney Walk. Your generosity has left us speechless. If you're interested in supporting her cause, you can find details at the link here.

We look forward to some smiles from Theo tomorrow, and many more to come. This journey has been breathtaking, painful, joyful, and overwhelming at times. We're thankful for God's provision, and for the opportunity to be a part of something we never expected to experience.

"Worry is not believing God will get it right, and bitterness is believing God got it wrong." -Tim Keller