It has took me a few days to get caught up on things. Gary's birthday was great. He got lots of nice presents. He is feeling pretty good these days. The Cytoxan, IVIG, and steriods helped out tremendously. His levels are good. One is still hanging out elevated but his skin is quieting down nicely. The plan is to do one more intravenous dose of Cytoxan next month, then re-evaluate from there. For this hospital stay I brought along my sign "IMMUNE COMPROMISED PATIENT". Just a gentle reminder to our nurses not to put us with anyone coughing, sneezen or wheezen please. They were very understanding about it. We also were told that rheumatology is going to do there best to keep us seeing just one doctor on a more consistent basis. I am not sure what sparked this but it is a good idea! We will being doing labs this month on the 10th, 14th, and 21st days after the Cytoxan. (Sometimes I write this useless information down for myself so thank you for being patient with that, ha ha patient get it snort......alright dumb pun : ( ).
We were in a double room but it was pretty quiet there on Friday night so we had no roommates. As usual I always feel like I got hit by a train when we get out of there. I got the pleasure of chatting with a view rheumatologist who came to check on him. I always try and ask questions that are on my mind. What I forget is that no one has the right answer, not even me. I asked if sun exposure triggers muscle weakness. She said that she didn't think so. That was not the impression or what she had observed with the other JDM cases. I don't happen to agree so where do you take that one. Shrugg and giggles. On Saturday we were asked to hang out for just a little bit because Gary was sleepy while the IVIG was running. They hadn't seen him awake so our nurse gotta call asking if we could wait another 30 minutes before discharging, just to make sure. He was really pale. But he usually is during infusions. Stuff makes you feel icky.
So we returned home Saturday evening. Not without a stop a Toyrus however. Gary picked out a mit and baseball, styrofoam airplane, and mini kite. He was very happy to see everyone, including his Grandma from Oregon had come for weekend. I love surrounding him in LOVE. It is the best medicine. It gave me a chance as well to go blow off some steam and do a 4 mile run. Yes, only 4 miles. I fear I have been battling a tight muscle of some sort that is messing around with my knee. I have not been able to get my miles back up there but it will work itself out. I love it because I know I am gonna sleep like a baby after coming home from the hospital but add some a run on top of that and a glass of wine with dinner, oh yeah, coma city sweetheart. That is the best kind of sleep.
The next morning Gary and I woke up early and went to Uncle and Auntie to have a birthday breakfast with Grandma and Grandpa. They were unable to come because of work so we had a birthday breakfast. Gary got his big present from his Uncle Ray. A power wheel! I am so blessed by my family. I am so grateful. Gary loved it very much. Well, at first he was a bit scared but he is now a pro. He has gotten so good on it we were able to hook up the turbo on it. Gary calls it his truck. Grandma and Grandpa then took us to the store and bought Gary Wii Resorts. He pretty much plays it hours on end. I would oppose to this normally but the physical exercise the Wii gives you is a plus. That evening we celebrated with the rest of the family. He got lots of nice clothes. Grandma Bradford got him lots of nice hats to wear! Yay! Gary did well. I was worried he would be a little cranky after all the meds, but he's 3. No one can be cranky when they are getting loads of presents on your third birthday!
Blowing out the candles on his cupcakes that he picked out.
Gary is into kites right now. After his birthday, he has a total of about 8. Yesterday it was a very nice day. So we lathered the little man up in 70 block and headed to the beach down at Ocean Shores. I love our state. In an hour and 30 you can be at the ocean going in one direction. Head the other and you can be in the mountains in the same amount of time. How awesome is that. We spent about 2 hours or so there flying Gary's new kites. It was good to get him out of the house. He had a great time. I was a little freaked out about the sun. But we kept it very limited. Not only is Gary sensitive because of his Juvenile Dermatomyositis, but all the medications he gets, there are a few in there that also make him sensitive to the sun. He still doesn't understand why the kites won't go up here at home. He was yelling at me yesterday, wind! Wind?! What do you want from me kid? So I blew on him. Not a good idea. Even three year old's are in touch with sarcasm. Don't worry, he always wins.
Exchanging smooches on the beach!
Flying a kite by the fire on a early spring day.