Transplant Anniversary

Lennon is still on IV medication to bring down the EBV (Eppstein Bar Virus) levels in his system. His ammonia has been maintaining at 75, which in terms of Lennon is probably normal. All but one test has returned from the mayo clinic and they all are negative..so still waiting on one more result and well then what? I don’t think anyone knows. I know there is talk about doing another biopsy in a few weeks to see how the liver is looking than now that he’s been changed to IV meds. In addition, they are going to have to think/talk about taking the pic line out. I remember the last one he had and despite stitches.. well it just fell out…not exactly something I…

So we have been home since Monday and I’m super busy catching up on things and getting organized (again). Lennon is doing really well. He had a dr. the appointment yesterday and his labs came back ok except for the EBV (Eppstein Bar Virus) that went from 1300 to 2300. There is still concern that Lennon may still have PTLD (as mentioned in a previous post), but they don’t know for sure yet. His other numbers look better though indicated still some amount of “injury” to the liver but again we are also still waiting on test results from the mayo clinic. Lennon’s ammonia is a steady 75, which is better than 100 but still above normal…but then again this could potentially be normal for…

We all acknowledge that our children have milestones at certain ages. When they start to crawl, walk, talk, switch from the bottle to the sippy cup. Lennon has reached most of these..well he still drinks out of a sippy cup for travel reasons though he’s capable of drinking out of a regular cup. Lennon is not fully potty trained and it has been a battle I have chosen not to fight until Lennon was ready. With all the medical issues there was no sense or need to push it. We also didn’t know if he could tell when he had to go or not. Sometimes he could and would while most times he wouldn’t. It’s one of those milestones I didn’t think I would ever…

I can give you a million reasons why use of the R-Word needs to stop but I’ll start with one for right now. And his name is Lennon. You see in addition to being born with a rare genetic disorder he is also autistic which comes with a learning disability and borderline intellectually disabled. And while he may have a few extra challenges to maneuver the world, I can tell you that he’s in some ways smarter and filled with more wisdom than you could imagine. And you may think I am bias – and I probably am – but you can ask those that have met him that his matter of fact unfiltered ways and ability to talk in meme’s is anything but a…

So these docs are figuring out his feeds, nutrition needs and what speech can do. They are working on getting him off TPN/Lipids fluid combination, but with that said, according to the doc, this won’t stop Lennon from coming home. I think he really just wants to make sure that he can hold his feeds without vomiting. Lennon is still positive with C.diff, but they are communicating with the infectious disease to see what they can do to get rid of it. This may mean more antibiotics and maybe some other med to add good bacteria into his stomach/intestines. Yesterday he had a day of vomiting, which I think happened for two reasons a) his clonidine patch fell off and b) one of the big…