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…

Light Cirrohsis and Mild Rejection

Light Cirrohsis and Mild Rejection

Yesterday I received a phone call from Pittsburgh. I had just picked up Jarod from school as he was staying late. I was debating answering but thought “this could be Pittsburgh” … We commenced with a little bit of chit-chat and then the news came:Pittsburgh’s pathologist reviewed the information from the biopsy done when Lennon had is surgery and the results are that he has a mild case of cirrhosis and a mild case of rejection. I don’t even know what to say other than that he doesn’t even look like anything’s wrong. His lab numbers have been normal and close enough to perfect. I am grateful for having done the biopsy while he was getting his muscle closed but wasn’t, of course, hoping for this…

The kid’s tough!

The kid’s tough!

It’s been just over a month since Lennon’s surgery and he looks fabulous. It’s like he actually has a 6-pack.. but seriously he has a stomach and not some bulge anymore. His scar is healing nicely – well it is healed at this point. There is some bruising on top that may be from some fluid that shouldn’t be there and it’s just being “watched” at this point. We did notice a decline in Lennon’s appetite, which is also supported by the weight loss. He’s at 55/56 lbs and really should be 60/62 lbs. The discussion is, of course, to give him an appetite enhancer although I am not sure that increasing his appetite is really the problem. I am noticing that he wants something…

Consult with the Surgeon

Consult with the Surgeon

Lennon’s g-tube track will not heal on its own. Since the removal of his g-tube in November – the hole still exists with some drainage every now and again and some soreness, redness and even bleeding (he can’t help but pick at it.. sigh) – so we had a consult with the surgeon. The plan will be to fix it by via surgery that’s going to give him another 4-inch scar – he will be admitted for an overnight stay to ensure that his medication regimen isn’t going haywire and that he’s stable after the recover. But wait that’s not all … …there is a possibility that during the summer at some point Lennon will face his hopefully last big surgery EVER! The current debate…

ADHD vs. OCD

ADHD vs. OCD

What a battle it is to have Attention deficit hyperactivity disorder but to also have obsessive-compulsive disorder. I knew that Lennon had both for a long time and we have always treated the attention deficit issues as that seemed to be the most important to address. However, the healthier Lennon has gotten and the older he has gotten his OCD issues have definitely come to the forefront. But what does a 9-year old obsess over? His Birthday.Legos.Books (as long as it has to do with Legos anyways). Not so bad right? Well, I was thinking that until it becomes apparent that he cannot follow directions or listen/hear what is being said to him (and yes I keep his partial deafness in mind). His sole focus…

Sometimes the memories are not old enough

Sometimes the memories are not old enough

I think at some point we are supposed to be at ease and stop with the BIG worries and just continue with the little worries that come with having a kid who has received a few livers in his lifetime. As I was helping Lennon in the shower I couldn’t help but notice his veins that are still so darn noticeable. I was holding my breath for a moment wondering if they remained the same as if they have changed and I was upset with myself for not knowing the answer to the question. It made me look at his belly to see if it is more extended or if it’s normal – well normal for him. I questioned myself if I was missing anything…

Hanging in … Hanging On

Hanging in … Hanging On

This week Lennon’s points on the transplant list should go up.. in the meantime… Lennon’s progressing to be a little bit sicker. Sick to the point that we now decided to restrict any extra extraneous activity such as physical education in school and try to keep a very active 7 years old mellow/non-active. I have no idea how this should or would work… because it isn’t right now.. well I can control P.E. and Recess by not having him in school… I can’t control him not running from one end to the house to the other.. ugh… There is conversation about whether or not he will require supplemental oxygen.. and that can be tricky… in some folk oxygen makes them loopy, changes their personality.. in…