Tuesday, February 11, 2014

One Month In

Stephen's now one month into daycare/preschool and I'm sure some of you have been wondering how it's going (especially since I haven't posted anything…sorry!).  Well….it's not a whole lot different today than it was the first day Stephen went to school.  He hates being dropped off at school.  It's so sad because once he's there, he usually has a good day and tells us at night all about the things he did at school and talks about all his little friends at school and how much he likes his teachers.  But as soon as he wakes up in the morning and the whole time we're getting him ready and the car ride over to school, there are tears and constant whining, "I don't want to go to school." So it's a little frustrating to have the child that cries every time you drop them off at school, but it's comforting to know that once he's there he has a pretty good day and always takes a nap; which is awesome.  And, best of all, his teachers are doing his g-tube feed once a day during nap time, and there haven't been any glitches with that yet.  

Aside from going to school though, our greatest challenge right now has been the "terrible 3's!"  It's hit us like a HUGE wrecking ball!!  Between the tantrums and the "no's" and the defiance and being unable to share with other kids his age (oh and let's not forget the little baby he refused to share with at the library yesterday which resulted in a giant tantrum…that wasn't embarrassing at all), we've had some challenging moments to say the least.  But I guess all we can do it stay consistent with discipline and hope this faze is over quick!!  One of things that has reared it's ugly head since school started (I think) is Stephen having feelings of being abandoned and almost high anxiety in certain situations.  We'll be out running errands or trying to grab a quick bit to eat, or even last week at the Natural History Museum in the butterfly garden, and he'll instantly start saying, "I want to go home." On repeat, over and over and over.  And if we don't go, you can see the anxiety starting to build up and panic setting in.  It's one of those weird things that you think only your child does and then you start to worry that it will never get better and "oh my god, what do we do?" kind of thing.  And does this stem from all the traumatic stuff he's been through?  And what's going to happen when he goes to kindergarten and has to ride the school bus?  I'm just hoping this doesn't last more than a few months, because I might just go insane!!  

But aside from the "terrible 3's" challenges, his health has been fantastic!  The viral studies that came back from our most recent trip to CHOP, indicate that Stephen is now negative for the BK virus.  If you remember, Stephen became positive for BK virus, a virus that attacks the kidney, back in June, prompting him to be admitted back to CHOP and a biopsy done to check for rejection.  Thankfully, there was no rejection, but he had to be taken off of one of his immunosuppressant drugs, CellCept, and put on a different cocktail of drugs to help combat the virus.  It's taken all these months, but he's now negative!  So at the end of this week, we'll stop one drug (leflunomide) and re-start the CellCept.  I'm a little nervous, because he also had a some serious issues with keeping his white blood cell count up while on the CellCept, but CellCept provides much better protection against things like germs at school than the leflunomide.  Plus, the leflunomide doesn't come in liquid form, so we've been crushing pills this whole time, which is kind of a pain in the butt.  I'm happy to be switching back to something in liquid form!

And Stephen is continuing to grow!  Still no need for growth hormone (hooray!) because he was up in both his height and weight.  I can't remember exactly, but I think he's about 2'11."  I can't keep track of the numbers, but I know he's continuing to grow out of his pants (length-wise) and his shoes.  We've gone through something like 5 pairs of shoes since transplant! Amazing!!!!

Also, just wanted to quickly point out that Valentine's Day, February 14th, is National Organ Donor Day!!!  A big shout out to Kristin, Stephen's amazing kidney donor, and everyone else who has donated or who has had a loved one (living or deceased) that has donated.  There's no better gift than saving a life!!  

Here are a few pictures from our adventures over the past couple of weeks.  I hope everyone stays warm and dry. We're gearing up for more playtime in the snow with dumpy!!


  1. Let him tell you 2 things he doesn't like about school, and then he has to end off with one thing he does like.

  2. Hi Lindsey,
    We've been so busy clearing snow that I haven't had time to write. Stephen's separation tears remind me of Kyle when he was Stephens age. Uncle Tom and Aunt Brenda would bring him to our house for a weekend and before they would leave he'd have some tears. The very minute they left he would turn around dry eyed and say "lets go fly". He would be fine the rest of the weekend. We could never figure it out other than he wanted Dad and Mom to feel guilty. Who knows what goes around in those little heads. I am sure it is just a phase and he will out grow it real soon. We loved the pictures!! Hope you all are having a great time in the snow....
    Love and Hugs,
    Aunt LuAnn and Uncle Dick