Hi Everyone.  We received really good news while we were in Cincinnati last week.  Jacob’s immune system function studies came back in the normal ranges.  Based on these studies Dr. Filipovich has given us the green light to put the boys back in preschool at the beginning of March.  I’ll have to be honest here.  I’m being cautiously optimistic about this.   Last August his immune studies looked great too, but we ended up having to pull the boys out of preschool because of sickness.  It’s such a balancing act.  We feel that both boys benefit so much from preschool, but being separated because JT has to be in the hospital because he caught something isn’t so great.  So, we’re praying for wisdom and hoping for the best.

Dr. Filipovich still doesn’t know why JT is getting the frequent fevers, but agreed to try not giving one of his IV meds to see if this might possibly be the culprit??  She seemed a bit skeptical that it would make a difference.  I don’t know if it will, but at least it’s one less IV infusion.  Jacob also gets a 2 hours infusion of a medicine called Ambisome that is a preventative med for fungal infections.  He used to take an oral medicine for this but it was causing some increased liver numbers and they switched him to this IV med to give his liver a break.  Well, after some time you can reintroduce a medicine and it may not cause the same side effects.  So the good news is that if JT’s liver numbers continue to look good next week, they plan to give one more IV dose of Ambisome and then switch him back to the oral medication.  This would mean our 2 hour infusion would be gone and we’d be left with just his steroid infusion which is only 15 minutes to a half hour.  Hooray. 

JT’s skin continues to look better and better each week.  There was even a brief discussion about what the next cut-back in photopheresis treatments would look like.  I’m not even going to go there until it happens, but it was exciting.  Dr. Filipovich is keeping his steroids the same.  She wants to take it really, really slow to taper these down to help prevent the GVHD from coming back.  We certainly understand that and support it 100%, but look forward to the day when the steroids will start coming down too and hopefully some of the “steroid” behaviors along with it.

This morning I signed the papers to start the process of enrolling JT in Kindergarten.  It’s hard to believe.  We are hoping and praying that his immune system will be ready for this new adventure.  We’re also hoping and praying that his social skills will be ready for this new stage as well.  Jacob has had such a restricted life from other children and just plain has not had a chance to learn how to interact with them.  This is really hard for Brian and me.  After everything our son has had to endure in his life, it stinks that he has to deal with this socialization hurdle too.  Not to mention that he looks a little different and everything we hear is that kids can be cruel. Ugh!  This parenting thing is really difficult.  I’m ok with being in the hospital with my son, holding his hand as he gets a needle stuck into his chest, but it’s going to be a lot harder for me to let go of his hand as he starts school. 

Thanks so much for checking in on us.  We are all doing well and grateful for your continued prayers.