Update on my little mate, Tyler.

This is an update from his mother Holly.  One heck of a strong woman.

My apologies for not posting in a while- here's a long overdue update on what's been happening.

Unfortunately Tyler has been losing weight over the past few months. While it's not surprising given his inability to absorb fat, this downward trend is not good. We are hoping that he can gain some of the weight back but his little body just doesn't absorb like yours and mine does. This is from his liver not working as it should. There is a possibility that he will have to get an NG tube placed, they would like to discuss this at our next clinic visit. I am really hoping he has gained atleast a pound or two back, to avoid having to go this route. Tyler had one of these tubes as a baby and it was not pleasant. 

When the liver transplant coordinator nurse called last week to discuss his weight loss, she mentioned that they got a liver offer for Tyler the week of Christmas. Unfortunately, it wasn't a suitable liver. They have access to the donor labs, cause of death, etc., and based on the factors, it just wasn't a 'good liver'. It gives me a little assurance though that his time is coming, or at least we pray so. 

Today I received another call from his liver transplant nurse. She called to go over his recent blood lab results. His liver enzymes are higher than normal, but nothing alarming. However, the concern at stake now is that the routine lab test that they give every couple of months to screen for cancer, called an Alpha-1-Fetaprotein tumor blood test, came back with an abnormal result. He had a concerning jump in his AFP level. So they would like to do an ultrasound of his liver as soon as they can, to see if there is an abnormality in cells or lesions on his liver.  We won't know anything until the imaging is complete. They are going to schedule this and get back to me as to when it will take place. Until then, I am asking any and all prayer warriors to please keep Tyler close in prayer. I haven't shared any of these lab findings with him, because he has enough on his plate to contend with. 

I will give another update as soon as we get more answers and info.

#TylerStrong

Evening with my son

 So I decided to make up and be a stupid monkey and try and forget about all the crap I've been through. Easier said than done. So this evening I took my son out as he has not spent any time with me for a very long time. He seriously is my mini me. It was a well deserved hangout night. We even went to the movies and watched Fighting with the Family. Great British dialogue.
So now it's time for bed and another day starts. Still got terrible shakes all through my body which gets me down but I am alive.

donate life presentation

https://youtu.be/Nzbz_LejQho

New for 2015

So in July there will be a Dash for Donation http://dashfordonation.org/ at the Arena District in downtown Columbus Ohio. I will be getting a team together in some form or another so either email me, message me on facebook or just plain old talk to me. It's going to be awesome and I will be walking in the 5K, I was thinking that 1K would be about right for me but if I am going to have a goal this year then this is it. Oh and I will also be walking for another dear charity of mine. Project H2O Uganda, so it will be named "Walk for Water". So who's with me?

Mark

Sunday

Hoping that this coming week is full of energy for me. Felt sluggish and yucky today. 

So I am sitting out on my back porch watching the birds catch the last of the bugs as the sun sets at 7.56pm. It's cool, it's pretty awesome because I hear the bugs and frogs and other little creatures calling out their dusk sounds. 

So this weekend has been strange as we as a couple feel like we get judged or we do things that others don't approve of. Myself and Tracey are very hard nosed people and tend to do what we thinks right. I apologize if we offend or have offended anyone before. We don't do things annoy, upset or make arguments, it's just the way we are and I guess that's why we married each other.

On that note, be safe and love one another.