Monday, March 19, 2012

Stephen Update

Here's the latest update on Stephen. I'm so happy he'll be getting to spend his last days at home before going HOME. Sweet, sweet little boy. He looks so exhausted. He has put up SUCH a good fight. He is my little hero. :)

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Getting out!
I added a picture to yesterday's post. It is Stephen just a month or so before he was diagnosed. The picture on today's post is from 3 days ago. It shows what the last 5 months has done to him.

Stephen slept most of the day yesterday so I was determined to get him up and out today. At noon I was finally able to get him out of bed. I tried to get him down to the art room or over to the zoo but he wasn't interested. I finally decided to ask if he wanted to go spend his money. That did it. We got ready and went to Target. He got a Spongebob Lego set. I was able to keep him awake for about 4 hours. After a nap on the couch I was able to get him up again. I tried to get some food in him today but I didn't have much luck.

He started to work on his Lego set when he woke up. It was so sad to watch him attempt to build it. I remember how he used to sit for hours and follow the directions and build a huge Lego set all on his own. Today he struggled just to understand what the pictures were showing him. He fussed and cried about it for an hour. I helped him along the way but found that I was just rebuilding everything he had done because it was wrong. After the hour was up, he was so frustrated I told him to take a break. I put it away. He had only managed to get about 20 small pieces put together. He was frustrated because he knew that this was something he used to be able to do. He kept saying, I do these all the time, I don't need a break. I can do it by myself! I felt so bad for him. I don't know exactly why he is struggling so much. He shouldn't be having radiation effects this early. Maybe it is the drugs or just a lack of using his brain lately. It makes me sad.

I also figured out today that Stephen has lost 7 pounds since we arrived mid February. We have been back for 5 weeks today. That is more than a pound a week. He looks like a skeleton. His hip bones are poking out and his ribs are showing. He loses a little more weight every day. I do everything I can to get calories in him but I am lucky if I get in 800 calories. Most of the days, when he is being sedated for radiation, I get about 300-500 calories in him. He isn't allowed to eat before sedation and then sleeps for hours after. I am usually trying to get as much in him as I can between the hours of 5 and 8pm. He drinks well but won't eat. I am trying to make sure that everything he drinks has calories in it.

My sister Gaylynn is coming on Tuesday to stay with us. I am looking forward to spending time with her. I feel like I haven't really seen anyone in so long. We will be able to catch up again like Libby and I did. It has been nice to not have to be here alone for long periods of time.

Brent and the kids fought really bad wind the whole day but arrived at home safely to a dog that ran around like a crazed lunatic while she cried. It makes me feel so bad when she cries like that. She has been so lonely. I know she will love having me and Stephen home. The cat doesn't have much use for me, but I know my puppy loves me!

I am really hoping that this week goes smoothly with no surprises. I just want to get Stephen home safe and sound. Now that it is so close, I feel nervous. I want to give him that time at home. I hope we can make that happen for him.


2 people leaving some love!:

The Cottage Market {Andrea} ♥ said...

i so wish i had the right words to heart aches as i read this story...i so wish for a miracle for this special little boy -- how blessed he is to have you and your family. i mean this from the bottom of my heart -- if there is ANYthing -- ANYTHING at al i can do for you please let me know. you have my thoughts and prayers...what a special little boy...hugs...

vailie said...

Lovely and heroic family...I'm watching the huge attempt of your little heart's broken to all that pain that hide behind your words...
I have three little daughters (5,5years-4 years & 22 months).
I can feel every single word of yours right through my soul...
I pray for little Stephen to our Lord! I wish everything goes fine at the end!
A little thought,a little pray and a warm hug from an also heroic fighting country...Greece!