Tyler's numbers dipped way too low over the weekend. So, for at least a week, they need to put his treatments on hold. Please pray that his numbers would come back up and that he would re-gain strength.
He still has not been able to have any food or drink. He is supposed to go for an upper GI and lower GI today to see if he can get that drink. They are worried with his numbers being so low that there may be risk for infection, and therefore delay this test. Delaying the test, delays the drink. So, we're hoping he can get the tests done, get his drink and not get an infection!
I don't want to be a downer, but I think maybe some of my posts create
an inaccurate picture of the situation...like he's all cheery and
running down the hallway during physical therapy. Tyler is so very sick. He
can't get up without assistance. When he does his physical therapy it is work and he perseveres and shows his strength. But, he's mostly sleeping in his bed. I
think he does spend some time awake, but they are moments that are few
and far between, as far as I can tell. He's not crazy about having visitors and people seeing
him like this. In fact, I think he gets sick of us being there sometimes. He has
lost all privacy and probably a lot of dignity that comes along with
that. A lot of times he'll put the blanket over his head if he wants to
be left alone, or has a crazy headache. He'll sometimes apologize to his mom or to us...like we're inconvenienced by being there. This weighs on me because I want to respect him, but I also want him to know that he is worth our time and prayers, no matter the condition he is in!
I read this blog called Kisses from Katie.
She's a young woman who has devoted herself to orphans and widows in
Uganda. Her story is beautiful and her heart for our Savior is even more beautiful. She posted the other day about a woman
that she is caring for that has AIDS. The post is here
if you want to read the whole thing. So much of what she was saying
stuck with me and put words to my feelings for Tyler and watching him
in this time of great suffering. When I sit in the room and I sometimes have to fight tears back the entire time, while watching him lay in that bed. When I try to smile and laugh and even if Tyler doesn't even know I was there to see him that day..I'm reaching out to him in my heart to let him know he is worth it!
"It's His [Jesus'] message to us on the cross and it is His message to
the woman with the issue of blood (Matthew 9:20-22) as He stoops down to look into her eyes, to speak
to her, to meet her need: “You are worth it.” And I want it to be my message to
these hurting that He brings into our lives: You, you are worth it. We are for you. He is for you." - Katie Davis
I don't think Tyler will ever read this blog, so he may never see these words. But, I pray that our visits with him, and Michelle, show them just how worth it they are to us, and to God! I hope my words are an encouragement to you all and that you realize how much we are blessed that you have joined us in prayers, gifts, cards, etc...to show Tyler that he is worth it!