Monday, August 25, 2014

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 25th.  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

·         Settling into life as a family of four: Nora is the perfect addition to our family.  She is now 4 ½ months old, and an absolute gem.  Her smile is infectious, and, much to my delight, she does not use it sparingly.  She is an amazingly happy baby, and she really seems to admire her big brother.  She lights up when she sees and hears him.  And the feeling is mutual; Theo loves to kiss her and gets overjoyed when she is brought into the room.  I’m convinced that God knew exactly what kind of sister he wanted Theo to have.  I can’t wait to see these two grow up together.  Theo is constantly looking out for her and wants to have her around.  He assures me frequently when she is sleeping that, “Nora is ready to get up.” J
·         Family trips: We’ve been busy with visitors and traveling!  In May, we traveled to California for Cool Aunt Whit’s wedding to Brett.  Since I was still on maternity leave, we were able to spend 10 full days with family.  It was really special to get to spend so much quality time with family and to introduce them all to Nora.  Whitney and Brett’s wedding was beautiful, and we are so happy to make Brett an official member of the Sylvester clan.  Nora and her cousin, Anna, wore adorable dresses, and Theo, George and Anna were tasked with looking cute and walking down the aisle.  I was a bit nervous about how Theo would perform, and my worries were well founded as he cried most of the way down the aisle.  As soon as he saw his dad, though, who was officiating the wedding, Theo ran into his arms and a meltdown was averted.  Uncle Luke was then able to keep Theo occupied throughout the ceremony with a pack of M&Ms. 

In August, we flew to Seattle for Nick’s family reunion, which was a blast.  Nora got to meet her other two cousins, and it was a treat to get to know Nick’s cousins.  We were able to spend two nights with my aunt and uncle, who also live in Seattle, which extended the trip and made it feel like a nice vacation.  Seattle is gorgeous in August!    
·         Theo started “big boy school”: We made the decision to move Theo from his nanny-share, with his great buddy Bobby, into daycare.  We’re very fortunate that we could use a nanny while Theo was newly transplanted and just getting used to Dubya.  But, we felt like it was time for him to be around a larger group of kids his age, and in a setting where he would have more structure.  So far, we are loving it! And he is, too.  I can’t tell you how satisfying it is to hear him talk about playing with Levi and Charlotte and Spencer, to name a few.  Developmentally, he’s growing by leaps and bounds, with his vocabulary noticeably increasing and his ability to play in a group improving dramatically.  Another positive: he gets to see Nora throughout the day.  Nora’s teacher told me yesterday that it is so fun to watch Theo, because he’ll run around on the playground, then come over and give Nora a kiss, then go run around the playground some more before coming back to check in on her.  That makes me happy.
Theo still loves cars. All cars. All day. Any day.
·         Bye bye, physical therapy and feeding therapy! Right before Theo started big boy school, he was officially discharged from physical therapy and feeding therapy.  While we were sad to say goodbye to Theo’s physical therapist, Diane, we’re excited that he’s now considered within the “normal” range for his age.  Theo still sees a speech therapist, but will probably be officially discharged from that in a few more sessions. 
·         Overall health: Before Theo’s transplant, I was reminded that transplant is not a cure, but a treatment.  With transplant, you trade one set of challenges for another.  This is definitely an accurate way to think about it.  While we don’t have to do dialysis, or clean up buckets full of throw up each day, we do have to remember to give medications at the exact same time twice each day, manage Theo’s fluid intake pretty closely, and deal with the side effects of having an immunosuppressed child.  Fortunately, Theo has been mostly healthy post transplant.  This summer, though, he’s had to face two bouts of long illnesses.  What would probably be a one or two-day bug in a healthy child turned into 12 and 14-day bugs for Theo.  As a result of nausea and severe diarrhea, Theo experienced pretty rapid weight loss during these stretches.  While we were able to keep him out of the hospital, thanks to being able to keep him hydrated through his g-tube, he did have countless labs and doctors visits.  (Side note: both of these illnesses occurred BEFORE he started full-time daycare.)    
·         Stats:
·         Theo: Almost 3 yrs old (33 months old) and full of energy! Weighs 25 lbs 12 ounces, and 33.5 inches tall.  He’s <5% on the weight and height charts currently.  We’re hoping for a period of rapid growth for him, both in height and weight.  (He’s never weighed more than 26 lbs.  At his 2 yr appointment, he weighted 26 lbs, but with several bouts of illness in the last year, he’s ranged from 23-26 lbs.)  Realistically, he may always be tiny, and the next major growth spurt is not likely to take place until puberty.  We’re going to discuss starting him on human growth hormone at his clinic visit in September, but that would come with its own set of challenges.
·         Nora: 4.5 months old and cute as a button.  At her 4 month visit, she weighed 14 lbs and 14 ounces and was 26 inches tall.  That puts her in the 70% weight and 95% height bucket.  I don’t think that I could have two more different experiences with newborns when it comes to feeding.  I understand now why not every baby needs a g-tube.  J
·         Funny tidbit: 2.5 years is such a fun age.  Theo says some of the funniest things, things that you could not make up.  My grandma tells me I need to write them down, and I think she is right.  I thought I’d share one of his funny comments, in the hopes that you’ll get more of a glimpse into his personality.  Last week, I took Theo in for labs.  Unbeknownst to me, they needed a urine sample.  Typically, this is something I’d collect at home, so I wasn’t sure what was going to happen.  I took Theo into the restroom, took down his diaper (I know, I know… still not potty-trained), and asked him to pee in the cup for Ms. Brenda.  (He loves Ms. Brenda, who is magical when it comes to drawing his blood.)  Theo did it without any problem while I held the cup, and told me, “Pee cup, Ms. Brenda.”  I was quite proud, and said, “Good job, Theo!” His reply, which was so sincere, was, “Good catch, Mommy!”

The last thing I wanted to share was a comment that has stuck with me since I read it earlier this year.  It was one of many comments on a Wall Street Journal editorial that suggested that a market be created for organ transplants.  (For the record, I still don't know where I stand on the issue.)  This comment to me embodies what Whitney's act of donating her kidney means to me and our family.

The author, a medical student at the time, writes:

"When I assisted in my first kidney transplant as a student, many moons ago, the surgeons were testing my knowledge of anatomy. The fellow quizzed me on this or that blood vessel, nerve and muscle. Finally, the kidney donated by a loving sister was brought into the room. The attending surgeon, a pioneer in renal transplant, held up the kidney for me and asked "what is this?"

I hesitated because the answer was so obvious. Finally I said "It is a kidney, sir." He said "No, it is love. Never forget that."

I never did and never will."

And neither will we.  
Dubya's caretakers.  The epitome of love.

Theo, Cool Aunt Whit, Anna, Nora, Uncle Brett and George preparing for the wedding day!

Great PawPaw: 88 years old, just finished riding his motorcycle from Virginia to Alaska, and making four of his great grandkids quite happy

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