Saturday, March 27, 2010

Well it is that time of year again.  The icky ol sun is back to reek havoc in our lives again.  I sorta wish I wasn't a sun worshiper but I am.  It would make things easier if I weren't.  Big brother had baseball practice this morning.  We covered up hat, sunglasses, ect,.  After about an hour in the early morning sun Gary's fingers began to swell. Then his lips.   We had to abandon practice to get to him safely indoors.  Things will be ok. We just have to find a way to make it so he can be outside.  He can it just is a risk.  

Thursday, March 25, 2010


Gary has been selected to Make A Wish!   Well selected or rather approved to make a wish thru the Make A Wish Foundation.  I emailed them because Gary loves being outdoors and in the the sun.  Our backyard is not shaded so I feel like he can't be out there safely.  So if Mommie could wish for Gary, it would be to wish for some sort of sun protected yard or area he could play in.  However, I know it doesn't work like that.  It is what Gary wants.  Well, he wants to live outside so, you know.  Our backyard is a little bumpy as well.  We have tried to flatten it out but the previous owners kind of had some stuff they put back there so a lot things sank into the ground, making it very treacherous to walk around, let alone play.   We removed all the trash and debris.  We have worked on it the best we could but ya know.  So thank you Make a Wish for considering my special boy.
Make-A-Wish Foundation

Birthday Recap

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.


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.

Monday, March 15, 2010


Happy 8th Birthday Elexis! We love you!

A Letter

Hi Erika,

It was so nice to spend time chatting with you yesterday after the IEP
meeting. You, Gary, and your family have been on my heart even more since
our conversation.

Today during speech, McGuire came in super excited to share something with
the group on Youtube. He showed us the video montage you made of Gary. 
After we watched, I asked Mcguire if it would be ok if the girls asked any
questions they had about his brother (since he was so excited to share and
the girls curious about why he was in the hospital). It was a great time
of sharing.

The video you made is so beautiful. Afterward, I spent a quick moment on
your blog (since I'm working I didn't want to linger too long!) and your
entry about your marathon brought me to tears. I wanted to thank you for
spending time yesteday sharing about Gary, his illness, and the journey
your family is on. I look forward to spending more time reading your
blog. I believe that your words and the process of sharing your journey
will bless people beyond measure. Your family will be in my family's

Can you imagine how this made me feel?  Thank you for blessing me back.  Thank you for your words.  These words if only for a moment put it all in prospective.  A prospective of encouragement.  This encourages me to keep doing the best that I can.  Keep working, fighting, living, and loving. These words are a huge hug from God, thru you.  Thank you for taking the time write this and brighten my life.  

Thursday, March 11, 2010


Gary is doing really good.  His energy is that of a normal almost three year old.  He has been playing hard.  The only thing I noticed were stairs are hard for him again.  He may be starting to run out of steroid juice.  We go in and fill our tank on the 19th.  It is our overnight stay for Cytoxan.  Everything is so gradual.  Ever so slowly starts to slow down, so its barely noticeable.  That is wear it really hit us.  I didn't notice before because it is just small things.   The question that is asked, "does he ever stop, slow down, and rest?" .  My Dad use to ask us that when McGuire was like that.  McGuire's energy was endless.  He would even jump in front of the TV to interact with the action that was going on.  When Gary was pulsed a couple weeks ago, he was running and jumping.  For a moment I thought he might run right up onto the wall.  I love it.  I hate it in the same breath.  He needs steroids to have energy to be a normal kid.  No need to dwell.  But acknowledge it in my thoughts.  I have also noticed a change in his gestures when he swallows food.  We are no stranger to what is called dysphagia.   Difficulty swallowing.  No choking though like before.  Just something only I would notice because I am his Mom.  So here is what I suspect:  If this was a "flair" or his disease trying to kick it up a notch, it started the way it did when he was first diagnosed.  Started with a rash or in this case an ulceration and signs of deterioration of the skin.  When he was first diagnosed, the muscle weakness didn't hit until then end of May, so weeks later.  Despite heavy doses of everything, he still had the muscle weakness hit and hit hard.  So the small difficulty he is having swallowing and stepping up and down steps may so right along how it works.

Prayer Request:
Mason is in the hospital with an infection of some kind.  He is feeling better.  Praying for the Smedleys.

Wednesday, March 3, 2010

Long Infusion Day

We had our infusion day yesterday.  It was so long.  Seemed like it took forever.  Gary is doing good.  He looked terrible when we got home last night at around 830pm.  He was really pale, hungry and tired.  He wanted to play Wii.  He tried so hard to get out of his druggish stupor.  We all had to be patient.  He ok We ate about 1000 goldfish.  He had the steroid munchies, mine was lack of control.  Least it wasn't M and M's this time.  I will refrain from complaining that we were scheduled for a 1215 so I didn't get around to ordering him lunch until 130.  We were busy doing IV stuff, getting things going.  I asked, I need to order him something for lunch.  He can't have an empty stomach with all these drugs, and steroids going in.  Sorry they said, they stop taking orders at 1:00.  Here is where I struggle with myself.  I say "Oh" politely but on the inside it's not ok.  I know there is a way to go about getting things done.  The discomfort sometimes for me is more than I can handle or at least choose to.  I find this a rediculous quality about myself.  I can't leave him to go the cafeteria to get him something.  I asked can I take him there (just wheel his IV pole on down, grab a cheeseburger and be back in 10).  They said no.  They have crackers and milk and things of that nature, but that only goes so far.

To eat all the crackers and make them sorry for not considering we were their ALL day.  Gary ate about 20 packs of Goldfish.  I put back about 20 as well (meaning we ate them).  We were making headway when the person who stalks the drawers came along.  The drawer was full again.  I was so discouraged.  I am the typical spoiled American.  Not only should I be thankful we have crackers, but we are able to receive healthcare.  Didn't I start this by saying I will refrain from complaining.  I have learned my lesson.  The infusion clinic stops serving after 1pm.

Gary's armpit is looking good.  It will be awhile before it heals.  Remembering back to when he was first diagnosed, he had the same start of an ulceration right about his belly button.  It was small but took forever to heal.  He now has a little scar there that looks like a hole.  I suspect this one under his arm will do the same thing.

I love the picture.  It says, pale and crazy, don't mess.