Hi Everyone.  Lot’s happening here.  The boys returned to preschool this week.  It has been awesome!  They both love it.  JT went on Monday for the first time back and just when we were pulling into the college he said out loud, “Thank you, thank you, thank you Jesus!”   It was really cute.  When his teacher opened the door to let the class in, JT threw his arms around her and gave her a great big hug.  Then he went right in and seemed to remember most of the routines.  All the kids were so excited in welcoming him back.  It was fun to watch.  Cubby was particularly happy to be there as well and was not as happy when it was time for us to leave.  I had to keep telling him that he would be going to preschool the next day (JT goes M-W-F and Justy goes T-TH.)  When we went back to pick JT up after class Justy told me in the car that I could just leave him at preschool.  Mrs. Patterson said JT did well his first day back and only showed a little restlessness towards the end.

It was a Cincinnati week so our good friend Jack watched Justy on Tuesday and got to take him back to preschool for the first time.  I was bummed to miss it, but actually got to take Justy to preschool for the first time ever today.  A few of the other parents told me Justy was so cute and so excited his first day back.  Justy has a special friend named Jacob that he was thrilled to see and I guess gave him the biggest hug you ever saw.  Both boys are so happy to be back at preschool.  We are so grateful for the wonderful program, the excellent teachers and the kind students and their families.

The boys are also still taking swim lessons at our YMCA and LOVING them.  They’ve both just blossomed in the last few weeks with going under to fetch the sinking squids, jumping off the starting blocks in the deep end and actually doing some real swimming.  They both ask me everyday if they can go swimming.  Brian and I have been trying to get them up to the pool for an open swim at least once a week too. 

Now on to the medical stuff…Last week when the home health nurse came JT only had to get his 15 minute steroid IV.  It was wonderful not having to also have the 2 hour ambisome infusion as well.  The nurse has started to teach me about accessing JT’s port.  It seems like he’s going to be needing this IV for some time yet and it doesn’t really make much sense to have the home health nurse drive over an hour to give a 15 minute infusion.  I had been really against accessing JT’s port, but he’s gotten so used to it that I think we’ll be fine.  I don’t know.  I mentioned it to him about me accessing him and he said, “I think we’ll wait until I get a little older Mommy.” 

JT and I left for Cincinnati around 4:30pm on Monday.  We didn’t get to the hotel until around 11:00pm and we were both pooped.  When the wake up call came the next morning I just remember crawling over JT and grabbing the phone to make that annoying sound stop.  Next thing JT wakes me up and says, “Aren’t we supposed to be at the hospital?”  Ugh!  We were an hour and a half late for our appointment.  In the end it didn’t matter that much anyway because JT ended up not getting a photopheresis treatment that day.  Long story short…JT’s hematocrit level was low again and they had to give him a blood transfusion.  Well, after he received that his blood pressures dropped and his heart rate became elevated.  They gave him a large bolus of IV fluids to see if it would help, but it didn’t.  After what happened a few months back they’re very cautious about monitoring these things and decided it would not be safe to do the photo treatment.  So we spent from 8:30am-4:30pm and JT only got a blood transfusion.  It makes me most sad for JT because he really isn’t liking being in the hospital that much anymore.  So we were looking forward to getting to the hospital early the next morning and being done with his photo treatment by noon and getting on the road to go home.  That didn’t prove to be the way it played out. 

Just being on the cautious side they wanted to do a CBC to check his hematocrit level before they started.  Sure enough it came back low and JT needed to get another blood transfusion before they would feel comfortable doing photo.  Now we’ve waited an hour for the CBC results, next it would be an hour for the blood product to arrive, next it would take two hours for the blood to infuse and lastly they would have to put TPA in his line and let it sit for a half hour to make sure the blood didn’t clot his line.  Well, we started photo around noon (our original departure time.)  We flew through photo in record time – done by 3:15pm, but we hadn’t seen Dr. Filipovich yet.  Wednesdays are a really, really busy day for her.  Finally around 5pm we saw her.  She thinks JT’s skin continues to look great.  This time she suggested we cut the photo treatments back to two consecutive days of treatment every three weeks!  Every three weeks!!!!!  Yeah!  We’ll start this schedule after we get through March.    During our next visit to Cincy JT is scheduled to see the eye doctor to just make sure there’s no GVH in his eyes. 

This last trip to Cincy was rather rough on JT and me, but that makes coming home so much sweeter.  The thought of only traveling to Cincinnati every three weeks is exhilarating, especially with the summer coming up.  Thanks for checking in on us.  Things continue to look up.