Friday, June 12, 2009

Home sweet home

I love being home. Yesterday went just fine. No surprise stresses. Gary did great with his IV. He stills crys but is crying less. We arrived at eight am. Traffic was ok. I was a little worried but we gave ourselves plenty of time. As we headed out just after dawn, Gary spotted CJ's bakery and pointed his chubby little finger at it before we even drove by. What a perfect day for a cake donut. I don't think he ended eating very much of it but its all about the experience. Speaking of donuts, Gary weighed in at 38.5 pounds. He has gained six pounds since May 9th. He still feels much heavier than that. Just another effect of steroids. Please Lord I never want to have to take steroids myself. Hairy foreheads and weight gain. That is just not a good combo. Only Gary sports it well though. Only my beautiful blonde two year old could pull that off. video
Here he is rocken out to a playlist Mommie created especially for him on her ipod!
During the infusion I noticed that his forearms swelled quit a bit. They were so tight. The nurse said we would keep an eye on but the fingers were getting good circulation. I then remembered when I had the kids my feet and legs would swell like that. The IV fluid and drugs have to go somewhere. Gary's blood pressure is 144/79. That is his normal "steroid" pressure. He got very restless after lunch. The nurse brought in a board to put at the bottom of his IV pole. It looks like a giant lily pad. It is a great concept but as soon as I went to have him sit down on it he would only last seconds. Sure enough after two minutes his head and back began to slouch. Then his head rested against the pole. It looked as if someone was piling wet towels on top of him. You could tell the muscles in his neck and back are just not working the way they should. His swollen fingers started to do all the work to hang on. He looked terribly uncomfortable so I took him off and just carried him. I don't think the nurse quit understood but just went with it. They did not take labs this week. I suppose that is because they just took them on Friday. They also gave him his methotrexate. I think that is our 5 maybe 6 dose. The only side effect Gary has had from that is he gets sleepy. The doctors said though after his six dose we will see the methotrexate work. I sure hope so. His rash is gone, only once in awhile we flare. His weakness is still at a ten though. With all the medicines yesterday in his IV, there is no diaper who can hold up to the challenge. I changed him a lot yesterday. But at about four oclock he fell asleep on my lap as they were finishing up. Suddenly, my lap was warm, then really wet. He soaked me! Don't worry, it started to dry on the way out to the car. Eeewwwy I know. I have a new slogan, "Finding Nemo, Don't leave home without it."

A got a wonderful gift from my Uncle Jon! It is a single cup coffee maker. So perfect. I am only a one cupper usually so my Uncle definetly blessed me. Wooo whooo! Thank you Uncle Jon!

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