Saturday, April 07, 2007

Saturday, April 7th

Good morning. I can't sleep again even though I am tired. I thought that I should write about Alex for this post. To begin, Alex is such an amazing kid, a realtrooper, and my hero. If you don't know him, you should know that his smile lights up the room and no one can resist smiling back at him when they see it. It has always, always been that way since the day he was born. I remember parents and strangers commenting to us how amazingly infectious Alex's constant smile is. He is very smart and nothing gets by him. He sleeps with Steve and me alot lately and recently will grab one of our arm's and put it over him. He loves to snuggle and this past week wants me "to sit with him" more than ever. He loves rainbows and coloring. He is very much into video games (accessed through hospital waiting rooms/infusion room) and has started playing games on Nick.com and NickJr.com at home. He watches a lot of "shows" nowadays. He loves SpongeBob Squarepants, Wow Wow Wubzee (sp?), Fairly OddParents, Foster's Home for Imaginary Friends and Caillou. His favorite restaurant is Macaroni Grill because of the cool cheese grater they use at the table over his Fettucini Alfredo. Besides pasta his other favorite foods are waffles and pancakes with lots of syrup and his favorite beverages are Root Beer and "Spider milk". He loves his sister very much but she can annoy him at times, especially when she is between him and the TV. He loves to blow bubbles, shoot bubbles, BUBBLES! He is an incredible batter and loves to play Tball as well as hit my and Steve's pitches. (Truly he is amazing at this.) He enjoys lying in the hammock under the tree outside on nice days. He prefers button down shirts nowadays. SpiderMan is his absolute favorite super hero and for the last three days "shit" has slipped out of his mouth on more than one occasion!

This past week has been very hard on him. When I was talking to my sister on the phone, she said "well, you know not being able to predict what is happening, is the scariest thing to a child." That makes a lot of sense and I believe it is true in our case as well. He exhibits a lot of anxiety during the initial event i.e. first time nurse flushed his line at home, first sponge bath. But each and every time after that he gets more used to it and yesterday, he even said in a very matter-of-fact tone something about his line needing flushed. He truly hated the sponge bath Thursday night. If anyone has a space heater they can loan us, we'd appreciate it. Steve went to several "home" stores and could not find one the other night. We'll keep looking.

Last night we went out to dinner with Alex's best friend's family. They are such a wonderful family and it is always so easy to be around them. The dinner was good and Alex ate his cheesy, buttered noodles very well (steroids have made a world of difference in his abiltity to eat and drink). Zoe started running a fever and was pretty miserable. On the way home, Alex said "Mommy, I'm scared". In response, I talked about how scary the last week has been since everything is so different. We listed everything that is different: hospital, doctors, new line, flushing, baths, medicine and that it is all because we have to fight the new bump with radiation. I know he hears that, but like the rest of us, really can't comprehend what is coming.

When we got home, Steve checked the messages and then went to the porch. He brought in a box of chemo drugs and in the box is an "Emergency Spill Kit"! I can't tell you how uncomfortable I am with having chemo drugs in the house and the prospect of administering them myself. I found out that the chemo has to be administered one to four hours prior to radiation and since Alex will be under anaesthesia for radiation he gets "dibs" on the machine, so his appointments are at 8:30am. (Alex can't eat or drink until after the chemo/radiation is complete). A nurse is coming by Monday morning at 6:30am to teach us how to do the chemo. Then we'll head out to radiation and then go to see Dr. Foreman for an exam. I have said that Monday will be a day from hell. I need to change my thinking and know that it is the beginning of Alex's wellness and wholeness.

Well, today will be full of errands, egg decorating and hopefully "The Ten Commandments" will be on this evening. I remember watching that movie every night prior to Easter when I was a kid. I really love it. I have never seen it for rent. I'll have to check on that. It is a classic though, don't you think?

Sunday we will visit friends for brunch. Their kids get along well with Alex and it will be a real treat for us all.

I just want to say thanks to everyone for their offers of help and support. I have two families offering to walk Roxie and play dates set up for Zoe. Yesterday, Annie called and told me that the old school will allow her to give her kids' "spots" for summer school to Alex and Zoe. So it looks like Zoe will be back at school soon. I am so excited for her. She is just going to love it and blossom there. This is a wish come true for her/me. In addition, a wonderful woman and former coworker of Steve's, contacted me yesterday and wants to have a benefit for us. This is truly an amazing offer and I can't wait to meet her. Thank you all for your kind words and good thoughts. Let's just keep thinking positively and praying!

Love and God bless, Happy Easter!
G


6 comments:

Anonymous said...

Good morning. Your strength continues to amaze me. I know that it comes from the love that you have for your family and that you may not see it or feel it, but it is amazing.

Drop me a line with who's organizing the fund raiser. Melinda and I would to help.

Thanks

Anonymous said...

Gwen,

Even through these extremely hard times, Alex and Zoe are still such happy little kiddos... a result of what an amazing job you are doing as parents. Monday is an unknown..continue reaching out to us all..and let us know how we can continue to help. I keep forgetting to mention it..but we can help with walking Roxy. Let's discuss how next time we talk.

Happy Easter.
Crissy, Ben, Esther, and Wylie

Anonymous said...

I am sending my prayers for your day to go smoothly.I am sending love for all of you!

Tina

Anonymous said...

I hope Easter was good egg finding fun for your family. You are in my thoughts today, and everyday.

Hugs from a stranger
Shantell Gutierrez

Anonymous said...

Good luck on this first day--the sun is shining, and we're thinking of you all.
~Tunheim Family

Anonymous said...

Thinking of you all today..all my love,

Susan A.