Drama at the Eye Doctor

Drama at the Eye Doctor

Lennon has been complaining about headaches for a few weeks and I made him a long overdue eye appointment. If you have been following his story, you may remember that immediately following the urea cycle disorder diagnosis, Lennon went blind for about 6 months or so, if not that’s okay! Anyway, the appointment was at 2:30 and we got in, registered and after 15 minutes or more waiting, we were called in a room for an eye test. Lennon was engaging, fascinated and super excited – silly boy actually WANTS glasses. Well, we went through it and back into the waiting room we went.And about 4:30 we FINALLY saw the doctor who reviewed his history, asked me a bunch of questions and ordered two more…

Final Results on the Biopsy

Final Results on the Biopsy

After meeting with our local doctor on the 25th, they explained it was inflammation in the liver. Pittsburgh called today and stated that there was no change since the results in January and he continues to be in mild rejection. The good news is there is NO change …the other news is ..there is no change There will be a medication change as they will add another anti-rejection medication. It is a bit concerning as this specific medication was stopped for his rising EBV levels.. but they told me that they will keep a good eye on it. Of course, my concern now is the increased immune suppression Lennon has to handle and with fall around the corner and with a school in session…well it worries…

A morning of follow-ups

A morning of follow-ups

Today Lennon had to have labs, ultrasound, follow up with the kidney specialist and his gastro/transplant person. He was also supposed to see the surgeon again but he was busy helping some little dude and we opted to not wait around and just touch base with them another time. Labs look good – like really good with what came back thus far. Still waiting on a few other results that take a little longer. His spleen is a bit enlarged due to some minor blockage of the sort related to the portal vein but NOTHING like before but it is something that will be kept an eye on. As of right now we do nothing but some ballooning of the area may be needed in…

Is this a dream?

Is this a dream?

“Is this a dream?”, the boy asked his mother as they stood in the hallway waiting for the elevator. “What do you mean bu this is a dream?”, his mother asked curiously. “Is this a dream that I am going home? Can you pinch me? The boy replied The mother pinched him ever so gently with a slight tear in her eye realizing the impact of this little conversation. This was the conversation Lennon and I had Wednesday of last week as Lennon was going home. He had minor surgery the day before to fix his gastrocutaneous fistula, in other words, fix the hole in his stomach. And he handled everything like a champ. The waiting in the pre-op lounge was a breeze as he…