Under the Weather

Well I guess we weren't destined to escape the winter without an illness this year. Boo! Stephen has had a fever since Tuesday morning with no end in sight and the poor little guy is completely miserable (although I do like the extra cuddles). I'll be taking him back to his pediatrician tomorrow morning to see if there's anything else we can do; aside from taking him to the ER for blood work, cultures and IV fluids. And we are obviously desperately trying to avoid that scene! It started Tuesday morning with a low-grade fever and has morphed into a full-blown fever hovering between 103 and 104 for the past 48 hours. 

I got smacked with the stomach flu on Monday, so Bill took him to the doctor on Tuesday with Nannie and the doctor basically said we had to ride it out, but now that it's almost three days later and he's gotten worse, I'm pretty worried. And this will actually be our third visit to the pediatrician in a week and  a half. Last Tuesday he was at the doctors for being sent home from daycare with tummy issues! When it rains, it sure does pour! And we'll be heading to Philly on Monday for transplant clinic at CHOP. Doctors, doctors, doctors.

So if you wouldn't mind, please send some positive vibes and prayers to Stephen that he can kick this "bugs" butt and stay out of the hospital! Hopefully this is just a normal "sick kid" thing and nothing kidney/transplant related.

On a positive note though, Bill and I spent a few days last week in sunny California while Stephen had an epic sleepover at Nannie and Papa's :) Bill received a sales award for work and we were treated to a few days in Palm Springs. It was pure heaven!! We went the past three years to this event, but this was truly the first time we actually really relaxed and completely enjoyed ourselves without the constant worry of illnesses, infections, dialysis and transplant. Even with the stomach but hitting me like a freight train on the flight home, it was a totally awesome trip! 

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!!

Birthday Pictures

Stephen's birthday was a good time had by all!  We celebrated his actual birthday on the 4th with cake and pizza with Nonnie and Papa (Billy's parent's) and then had a fire truck birthday party on Saturday with lots of family and friends and all of Stephen's buddies.  Despite the miserable weather, it was a really nice day and the best part of all…the local fire station came by with a fire truck for the kids to see!!!  They were all so excited and it was definitely the highlight of the day!!  That and the cool F-150 power wheels truck Stephen got for his birthday from Nonnie and Poppa!

First Day of School

Today marks another big milestone for Stephen; his first day of school!!!  Stephen started daycare/preschool for the very first time!  It's been quite a challenge getting to this day, and I'm still a bit nervous about the whole g-tube feeding thing is going to work at school, but the hardest part is over with....the drop-off.  And I think it went really well (minus the fact our garage door was frozen shut this morning)!

We've been talking about going to school for weeks, and we visited a few times, so Stephen was well aware he was going today and that he would be there all day.  But of course, on the morning of the big day, someone woke up on the wrong side of the bed and didn't want to go.  As I pulled him out of his car seat at school he even said, "Mommy, I don't want to get out of the car."  Ugh.  That's like a dagger straight through the chest!  But once we got inside and everyone asked him if he wanted to go play, he walked down the hall and into his classroom.

Once we got into his class, he became pretty hesitant and wanted me to pick him up, but his teacher came right over, scooped him up, I hung up his bookbag and coat, gave him a hug and kiss and Bill ushered me out the door.  Thankfully, he waved to us and said, "Bye Mommy and Daddy" with a big smile, so I felt good about our chances for no tears.

It's now 11:40 AM and I haven't gotten a phone call, so I'm assuming all is good!  I do have to go back shortly and give him his tube feed, so I'll be able to check on him, but honestly, I think he'd do better if I didn't go.  But, he needs those fluids to keep his kidney happy, so I don't really have a choice.  I'm hoping that once he gets acclimated to school and napping at school and his teachers feel comfortable enough, they'll be able to give him his feed during nap time.  Or even better, he starts eating and drinking more and there will be no need for the stinkin' g-tube at all!

For the first two weeks, Stephen will be at school every day, all day, and then after that we'll taper down to either two or three full days (depending on my work schedule and how he does).  But all-in-all it's just awesome knowing Stephen's healthy enough and so far beyond all of his delays that plagued him for over two years that he can be at school with the other kids his age!!
 

  

3 years old!!!!!

So Lindsey and I were just sitting here, on the eve of Stephen's 3rd birthday, discussing what we were doing 3 yrs ago today.    Ironically enough we were set to meet with our OB the next day (jan 4 2011) and we had decided to tell her one way or the other this baby needs to come out.   We needed to know one way or the other what was going to happen.  We were so scared, so unsure of what was ahead of us.    So Lindsey and I are talking about this tonight, and as we are talking, Stephen came flying around the corner chasing our dog Mabel with his dump truck (a hourly occurrence in our house), and the last 3 years came rushing back to me all at once.  We live this journey with our son, and I sometimes find myself having to be reminded of things that happened, almost as if I had only read about them and not actually lived them   It was as if everything Stephen went through, everything we went through, everything our friends and family went through was just a dream.  As if this perfectly "normal" 3 yr old was never sick...  Well, unfortunately we all know it wasn't a dream, and he was sick, and he did go through a lot, but everything he went through, everything we went through is all worth it when he goes flying by with his dump truck, trying to run over the dog.    Everything he went through and we went through is worth it when he stands at the window waiting for me to come home from work, then waives at me to "come in da house daddy".  Everything he went through and everything we went through is worth it, when I see the joy in his grandparents eyes when he runs and gives them each a hug and kiss, and makes them feel like they are the most wonderful people he has ever met.  Everything he went through and everything we went through is worth it when you see him chasing after his two beautiful little cousins (Norah and Chloe).   Everything he went through and everything we went through is worth it when, this past weekend he played all day with his buddies "baby g" , caroline, and charlie. (Greg and Ashley Callen's kids) in the park , and not once was looking over his shoulder for mom and dad.  Everything is worth it when, as I am typing this I look over and Stephen and Linds are chilling on the couch watching tv together.   

I need to clarify that when I say "we" I am of course describing Lindsey and myself, but in reality I am describing everyone in our lives who have lived through his journey with us.   We are extremely fortunate people, who have had unbelievable kindness shown to our family.    I would invite everyone who has followed along with Stephen's Journey to wish him a very happy and healthy birthday tomorrow, and also take a second to toast yourself as well, as you are all part of this special boy's journey.

Lastly I need to make special mention to Stephen's angel on earth, the wonderful and beautiful Kristin Freeman, and her wonderful and supportive family (Matty, Cameryn, Cailyn ,Cassidy).   Without her, and her family's love and support, I don't know where we would be.  I won't go on and on about Kristin because I know she hates the attention, but we are kissing our little boy tonight in large part due to her and as we celebrate his birthday, we celebrate you and the gift you gave us.

Happy Birthday Little Man

Love Daddy

Merry Christmas! Ho Ho Ho!

From our family to yours, we'd like to wish you and your family a very Merry Christmas and a wonderful Holiday Season filled with tons of laughter, joy, and happiness!  We sincerely appreciate all of the love and support over the past three years and hope you'll continue to follow Stephen through this incredible journey over the next year.  God only knows what's in store for our brave little Superman, but if I were a betting woman, I'd bet that's it's something pretty spectacular!

December Clinic Visit and Weekend Fun

We had a whirlwind of a weekend this past (actually last weekend, 12/15...took me a week to get this posted) weekend full of lots of fun, all capped off with a super awesome visit to the transplant clinic at CHOP!  Bill got back into town late Friday night from a business trip in Miami (yeah, I feel really bad for him too) and Saturday morning we started our fun adventure here in Virginia by taking Stephen to see Sesame Street Live at the Patriot Center (at George Mason).  This was the first time we attempted a "big" show since the time we attempted the circus when we was about 9 months old.  The circus was a bit overwhelming, so it didn't go so well, but thankfully, Elmo was a BIG hit!  It was so fun watching Stephen get excited each time all the characters came on stage to dance and sing and watch him groove along with the music.  I originally cringed when I saw what they were charging for tickets, but in the end, it was worth every penny to watch his little face and see his eyes light up with excitement!

Then it was back home to quickly pack up for a trip to Pennsylvania and to try to beat the snow.  We left at just the right time, because by the time we made it the two hours to York, the roads were completely covered with snow.  They ended up getting about 6 inches that evening, which made our special train ride the next day, that much prettier.  My parent's wanted to take all the grandkids on a special Christmas steam engine ride through the southern part of York county.  While Stephen was a bit apprehensive at first, once the train started moving, he got excited and had a fun time with his cousins.  Half-way through the train ride, we picked up a very special visitor all the way from the North Pole and Stephen got to see Santa for the first time this Holiday season, which made the ride even more fun.

And bright and early (6am) Monday morning, the three of us , Bill, Stephen, and I, made the trek to Philadelphia for Stephen's monthly transplant clinic visit.  It was so nice having Bill along with us this time and it definitely made the trip easier.  Plus, Stephen got to sit on Daddy's lap this time while getting his blood drawn, and I think that made it easier too.  I'm happy to report that all of Stephen's numbers were perfect this time! His BK virus levels are at an all-time low and his white blood cell count and ANC levels are at an all-time high; and everything else, his creatinite, BUN, and prograf levels are all stable.  These were the best results we've had since May/June!  And as a special treat and because Bill was along with us, we went to lunch at our favorite deli in Philadelphia after we were finished at CHOP.  Bill's parent's would bring us take-out from the Famous 4th Street Deli while Stephen was in the hospital and we fell in love with their decadent treats and awesome sandwiches.  If you're ever in Philly and want a great place to grab a bite to eat, breakfast or lunch, the 4th Street Deli definitely won't disappoint!

So all-in-all it was a great weekend full of fun, laughter, and totally awesome kidney numbers! And now we're just looking ahead to Christmas, followed by a special day on January 4th; Stephen's 3rd birthday!!

Stephen is in a Sesmae Street Live trance!