Yesterday was bittersweet. 

In the morning, we attended the funeral for Jodi's grandmother.  She was 95.  At the service, Uncle Ray spoke of her legacy, of her family.  The room was full of the expressions of her love, in all ages, shapes and sizes.

Back in Pennsylvania, JT didn't understand when we told him that we'd be gone for much of the day, that our St. Nicholas Day party had to be cancelled.  We were all disappointed and sad on several levels.

But we hadn't counted on grace.  When we called home between the funeral and luncheon, JT was beside himself with excitement, shouting into the phone that he'd received a balloon bouquet in the mail, a huge cluster of helium balloons with a candy basket for ballast.  (Thank you to the Fritz family - you can't imagine how your kindness saved the day.  Really.)  &l ...

Hi Everyone.  Too much time has passed since our last blog entry - sorry about that!  I was just reading what the last update I posted said and feeling very thankful for where we are today.  For starters, today marks the 2nd year anniversary of Jacob's transplant.  To be completely honest, we were hoping to be in a little different place than we are, but having said that, we're thrilled that Jacob is thriving and still fighting the good, brave fight!  We are so grateful to our donor who so selflessly sacrificed to give our child life.  I'm also so happy to share that this was the first week since May that we did NOT have to travel to Cincinnati.  I didn't really want to write it until it actually happened and it did!  Jacob's skin continues to soften and Dr. Filipovich felt it was ok to move to Photopheresis treatments 2 days a week, every other week.  What a wonderful change this is for our entire family on so many leve ...

Well...we survived!  There were definitely a few bumps, but overall a good trip.  The first hiccup was that the childlife center (playroom) was closed both days we were at the hospital for special cleaning.  In all the time we've been at the hospital we never knew they did that.  Jacob and I had been telling Justy all about how much fun it is and how they bring you toys to the room and then when you're done playing with those they bring you more.  Thankfully our wonderful childlife specialist, Amy, had pulled a few toys aside for us and we managed just fine.

Second hiccup was that at 7:00pm on our first day at the hospital Jacob accidentally pulled his line out.  Now in the back of my mind I thought that perhaps this might happen, I just thought that it would be Justy that did it.  Jacob was getting his second infusion when it happened and it wasn't quite finished yet so they had to re-access his port ...

Hi Everyone.  Sorry for the lapse in time since the last blog.  I've been enjoying the time at home with Brian and the boys and have gotten caught up in day to day living - yeah! 

Jacob has been good since the last hospitalization.  He still has a little residual cough that the doctors told us could last for some time.  Brian did catch a mild version of the virus too, but is doing ok now.  We've been having lots of fun taking in the last of the Fall beauty with lots of hikes and caches.  It's strange not taking the boys to preschool.  They miss it.  Just the other day we were in the car and Jacob said, "Mommy, I wish I could go to preschool.  I miss going there."  And then Justy pipes in, "Me too.  Are we still taking a break from that Mommy?"  Ugh. The preschool class has been wonderful though, sending e-mails and pictur ...

This morning we all woke up in the same house.  Very sweet.

Jodi and JT limped home Wednesday night and Jodi was in bad shape.  After some real sleep at home and some homemade food (thank you to those who have fed us recently!) she seems to be getting back onto her feet.  JT still has a nasty cough, esp. at night, and we nearly had a temperature situation this morning, but we're hoping to spend the weekend together for once.  We all need it.

Pre-school will have to wait until a later time.  We're disappointed because both boys were learning so much and enjoying the company of other kids but our doctor agreed wholeheartedly - it's simply too much risk at this point.  Spending so much time in the hospital is regress, not progress.  Hopefully we can try again in the spring after the cold/flu season; by that time, perhaps JT will be off the huge doses of ster ...

Brian here in Cincinnati.  Here's the scoop:

JT is a whole lot better than when I left here last Monday.  He's breathing okay and he's been fever-free for 48 hours so the doctor discontinued antibiotics this morning.  The allergic reaction he experienced yesterday (presumably from the IVIG infusion) has abated.   His white blood cell count jumped way up after the GCF infusion.  He's tolerating his feeds well but still experiencing D when he sits down on the toilet.  The next time he goes they want a culture.  His coughing fits are troubling and they're violent when he's in the midst of one.  The doctor told me today that the cough would linger after the other symptoms have subsided. 

Jodi has been feeling terrible.  She headed off to the Hannaford Suites last night after I arrived and I hoped that she would feel much better after a night ...

For the first time in several days JT woke me up by saying, "Good morning mommy."  He had gotten unhooked from the IV pole for the first time since he arrived and had come to sleep next to me on the pull out couch.  He hopped out of bed and acted a little crazy and was seeming his old self.  But a half hour later he started really complaining that his throat hurt him.  I gave him some tylenol and benedryl and he's a little more comfortable now.  He still has coughing fits about every half hour, which can't help his throat.

We just finished rounds with the team and the plan at this point is for a Sunday discharge.  Clinically Jacob's doing better, but his white blood count dropped to 1.0 this morning.  They are going to give him a drug to help stimulate his WBC count today.  His blood cultures remain negative so that is good.  He's tolerating his feeds as well.  Brian is comi ...

Sorry I didn't update yesterday, but the news would have changed today anyway.  Yesterday Jacob improved greatly.  We were up playing games, building blocks and watching shows.  He had been fever free and his cultures were still negative so they stopped the antibiotics and had us set to head home on Friday.

Well, last night that all changed.  At around 4am he woke me saying he was going to throw up.  When I felt him he was burning up with a fever of 38.7 c.  We immediately gave tylenol, redrew cultures and restarted the antibiotics.  No more discharge for us on Friday.

On top of all this I think I have what Jacob has.  The plan is for Brian to releive me tomorrow evening so I can head home for a day of rest.

Jacob is still sleeping.  He feels really crappy.  Please keep us in your prayers.  Thanks.

Well, shortly after my last blog update I talked to Brian again and Jacob had taken a turn for the worse.  His fever came back and his oxygen levels dropped again, requiring blow-by oxygen to be restarted.  Brian wanted to prepare me for what I would find when I got to Cicny and told me that this was the sickest he's seen our son since the actual transplant days.

When I arrived Jacob couldn't talk, only mouth words.  He had a piercing bark like cough and seemed to struggle with each breath he took.  His heart rate was racing at 150-160.  His oxygen level was still only 94%, despite the added oxygen.  His face winced with each cough and swallow.  It was a pathetic sight.  Brian had just found out that Jacob tested positive for the parainfluenza virus and that he had croup.  They had ordered a CAT scan of his lungs as well because they were concerned  ...

Just wanted to let everyone know that Brian and JT made it safely to Cincinnati last night.  It was a long night in the ER and then they finally got admitted to the BMT unit about 6am.  They drew all kinds of blood and did a chest x-ray, which came back clear.  Jacob had a fever through the night but is fever free this morning.  He's been sleeping ever since they got to the room.  His heart rate has been elevated, reflecting infection and his white blood cell count jumped from 3.5 last Thursday to 13.5 yesterday, which also reflects that he is fighting some type of infection.  We're not sure yet if it is bacterial or viral.  If it is viral it will take him a lot longer than a child with a working immune system to kick it.  Either way, Jacob is stable - not requiring oxygen- and for that we are thankful.  When I spoke with Brian the doctors had not yet rounded on Jacob so we don't know the plan yet.  Otherwise, J ...