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…

With the good, there comes struggle

With the good, there comes struggle

Summer Camp has been an amazing experience from a mother’s point a view – from a counselors point of view and well from Lennon’s point of view. He has inspired me every day pushing through his fears. As it stands with all things there are also some challenges and I see his social delays – so significantly by 2 years. Now it does not face him one-bit mind you – he is who he is and he’s so totally cool with that (me too by the way). And yet I can’t help see that he is unable to connect with kids his age, that he has meltdowns because his feelings got hurt and he can’t manage them, or lunch is not looking good at all….

The Boy is full of Poo

The Boy is full of Poo

No really – he’s full! During this last month, Lennon has had some mysterious vomiting spells and stomach hurting like ..well a lot. And then he developed some “accidents”, I thought were kinda over considering he was quite late potty training. We thought he was maybe eating the wrong food to cause his belly to hurt.Or may he was eating too much to the point of vomiting. Nope. Took him to the doctor and did an X-Ray and literally the boy is stopped up with poo! And they don’t make he’s eyes turn brown – they are naturally that way 😉So over the upcoming weekend, we will empty the boy out from his poo and hopefully, he can return to some kind of normal. Curious…

Ask about feelings and you get too much

Ask about feelings and you get too much

I think this morning I realized that sometimes we ask of him some of the things we cannot do ourselves. Describe how you feel… It has got to be the toughest question then add a mix of mood swings and being a kid and trying to fit in and to want to be good and not annoy everyone with the sky lander you want but you just have to share because if you don’t… Well, you just might explode. Yea that was a complete run-on sentence with a purpose… Now imagine being 10 years old with ADHD and OCD ..and trying to control your emotions because that is what is expected of you .. To be normal to behave in a way that society deems…

Time for that Hearing Aid

Time for that Hearing Aid

We recently had a consult with the Audiologist. The same one that six months ago said, she did not think a hearing aid would be a good idea. Lennon had a one-on-one aide in school that would direct/redirect Lennon as needed. However, the reality is that he will not always have an aide. At some point he will need to work more independently – its what we working towards. She agreed that a hearing aid would be the way to go and so Lennon while he played had his ear molded  He wants a green hearing aid if he could choose his colors but he may be stuck with getting a blue one – he didn’t seem to dislike that too much. So in about…

Transplant Anniversary

Transplant Anniversary

He loves Felix the Cat and Sonic – but this changes from day-to-day. He loves video games and wishes he was old enough to play Halo. He wants to be like Caillou and has a cat named Gilbert. He loves his dog Sgt. Pepper and playing with Lego’s is his favorite past time. He loves to dance – wild and crazy and snuggle with his mom. He loves going to school and loves the weekends just the same. He talks about his best friend and how he wishes they had more time. He draws pictures anytime he can. It’s Lennon’s 2 year transplant anniversary from his last transplant. All the things above I wouldn’t be able to share with you, had he not received this…

Technical Issues and a long overdue Update!

Technical Issues and a long overdue Update!

Alright, here’s the gist of it… shortly after returning home from Pittsburgh – the company I was using to host the original website went kaputt. I have saved a backup but I am unable to restore this backup (if you know how to do it – sent me the info).. and have been trying on and off since that time…. leaving the pages of the blog blank.. well no more.. so much has happened (all good) and so much is still happening for Lennon that I must continue to write (right?)! So let’s start with the fact that Lennon is AMAZING! His liver is beautifully working in his little body. His labs continue to be stable with no concern. Lennon is fully functioning in school…

Just wants to fit in

Just wants to fit in

Lennon has had his struggles as many of you know.. from late diagnosis of a potentially deadly genetic disorder and complications after a few of his transplants. Lennon strives to be normal and in the many years he has HAD to have special transportation – we have never encountered an issue. If anything we LOVED his drivers that would make sure he got to school and home safely. Lennon wants to take the bus but there’s still a question that he can maintain safe due to his sometimes (or often) impulse behaviors. So he takes the county car! Lennon talks about how to mean the other kid (which is older and in two grades above him) is to him. I have heard from others how…