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November 18th, 2020 is the day that it's been 12 years and counting since his original liver transplant and that changed so many things. There isn't a day that doesn't go by where I am not in awe of medical technology and advances that have been achieved that allow me...
We celebrated Christmas with anxiety and success but every year it's the same! Lennon gets anxious about what he will receive. In the past, Christmas was met with shutting down and tantrums. The challenge we face every year is that he has expectations because that is...
We've been going to therapy to gain skills to feel more confident and less anxious and learning how to ask for help through practice. His anxiety can potentially stop him from doing things, like leave the house. What his anxiety does is that he struggles to ask for...
If you have been hanging around my world, you may know that Lennon is doing incredibly well healthwise. We've not had any setbacks since 2014 or any other complications. What has happened however is that at the beginning of this year (2019) he was officially diagnosed...
This last week has been a tough one when it comes to discussing Lennon's progress and the lack thereof - all at the same time. Last week, we had his annual IEP meeting and discussed where he has made progress and yes there have been some. He's done with physical...
6 years ago in the early morning, my phone rang with a call I didn't expect so soon. It had only been three weeks since he was listed on the transplant list. Transplant Coordinator: We have a potential liver. I am checking on how Lennon is feeling and letting you know...
I recently had a parent-teacher conference for Lennon and I tread them every single time because I tend to already know how it will go and reminding us where he struggles the most. And yet at the same time, it will give us insight on what specifically we may need to...
It's been good - even when it has been challenging. The other day Lennon "lost" his hearing aid because he took it out and instead of putting it into its container - well he can't remember where he put it. Lennon has some short term memory issues that are creeping up...
Out of all the work and jobs, I have done, parenting is by far the toughest I have encountered. You hope and pray that you are doing a great job raising well-rounded children - but the *something* happens and you are questioning your parenting skills repeatedly. When...
Lennon comes around the corner an hour after his bedtime Lennon: Mom, I need some encouraging Me: For what? Lennon: to help me stop reading at bedtime and go to sleep Me (trying to keep a straight face): oh so you were reading when you were supposed to sleep? Lennon:...
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...
Being a Parent is such a tricky journey. You teach through role modeling and lectures. You love through facial expressions and gestures. You want to connect with them. You hope that your instinct is guiding you to help shape your child's life, not only so they become...