Perseverance

Perseverance

Lennon is the definition of perseverance if you have followed his incredible story you, of course, know this already 🙂Let me tell you, at the beginning of summer, Lennon hated the idea of camp and leaving his comfort of watching YouTube videos and playing video games. During the first week, he shared with me that he actually likes summer camp and is happy that he is able to go and participate.While those are his own little changes of attitude, it is not what I wanted to share. What is so incredible about this is that two weeks ago, Lennon was pretty scared of the water other than his regular bath of course. Even though water has always been his calm, as he got older and…

Most dreaded day of the year

Most dreaded day of the year

IEP meetings are sometimes a curse and a blessing. One one side they tell you how much progress your child has made… and yes Lennon has made a tremendous amount of progress in all areas. One the other side, he is still so very much behind on everything.. reading on a third-grade level (he’s in 4th grade) ..math he’s still quite behind.. and handwriting, and processing and expressing. Socially at times still awkward, he is quite affluent in getting along with his peers, he’s surrounded by peers during lunch and learning how to maneuver the social how to hold a conversation and be interested in other people and not just talking about his own interests. You learn that Occupational Therapy, Speech Therapy, and Physical Therapy…

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…

Merry Christmas

Merry Christmas

It is amazing to me that we have managed another Christmas at home considering we have been waiting on a new liver for almost 5 months now. It’s one of those we wish it would have happened already but glad we were home moments.  Lennon appears ok probably to people looking at him, but I notice the changes. I noticed the blue-ish tinted toes, the bruises because is coagulation is off.. the labored breathing when he gets too excited…and yet knowing that he’s sick or getting sicker he still manages to make me and everyone around him smile. Santa got him a cleaning trolley with his own broom, mop, bucket, dustpan, spray bottle an a Diego Rescue Center. He loves both of them very much……