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. Birthday RECAP
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.
THE BEACH
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.
Happy Birthday Gary! What a cute pic of him giving you smooches! This post brought tears to my eyes! You are just an amazing mother and he is an amazing little boy and his strength makes me fight even harder each day! I laughed right out loud at your pun and girl I snort too! Haha!! Wow he got some cute gifts....love the power wheel! Glad his levels are cooporating....mine are now, but my muscle weakness went all wacky and they had to steroid pulse me....now I am feeling better and they are tapering again and my joints and muscles are starting to flare uggggg.....
ReplyDeleteI feel ya on the SPF I wear like 70 and a hat too! Glad he had such a great b-day! He is a cutie patootie...
I agree with you I for some reason think that alot of sun exposure triggers the disease too....along with stress and chemical factors etc., I think it is a learning game with the docs since this is so rare and that my friend is so frustrating isn't it!
xoxo
Summer :0)
Oh Erika you have had fun it sounds like. If he wants wind have him come visit us. We have three wind farms within 60 miles of our home and a 4th going in soon. We drive by one every day. We can fly kites everyday all day! Not really unless they are really tough some days because of to much wind. I remember growing up we flew kites all of the time.
ReplyDeleteTell the little man Happy Birthday from us!!!
FYI - the sun does have a huge affect on them. The doctors have all told us that and I can tell in Kya. We have a no outside between 10 and 4 rule at our house. The doctors have all really set those hours for us. We try to follow them, but it doesn't always happen.
It is really hard on Kya also because she loves to be outdoors. We are currently trying to figure out how much it will cost to close in our 3 car garage and make a big indoor play room for Kya with no windows. I know it is not the same as outside, but the Oklahoma sun is brutal! I am so excited about your make a wish! Keep me informed. We are praying for you guys!