Tuesday, June 29, 2010

Re-Cap of my Run

I few people have been asking me how the my run went. Well here is my new running blog.  Click Here

Monday, June 28, 2010

New Video

Don't forget to mute music on the blog first down on the right hand side.

Friday, June 25, 2010


I am so pleased to announce that mere hours before the 2010 Seattle Rock n Roll Marathon, I reached my fundraising goal!!!!!  I am so touched.  Every donation that came in is so emotional.  Each time I literally choke up, throw my hand over my mouth and weep in amazement.   I know it sounds corny but it is so wonderful!  So far with the Austin Marathon and now this marathon, my total is 3,650.00.  It may seem small but it just feels huge to me.  It feels huge because this amount came from my family and friends.  I know things have been interesting for everyone lately in this economy.  So like my fundraising page says, I know its huge when people donate.   Alright, can you believe its almost midnight and I have to be up by 4am to be down in Seattle.  Thanks again to everyone for donating.  Thank you for all your encouraging words.  I appreciate it to the moon and back. I will post pictures later tomorrow afternoon.  Also, I know I exceeded my goal but feel free to donate anyway. ; )

Thursday, June 24, 2010

New Donation Photo

I put up a new photo for Gary's fund raising page and shared it on facebook.   So I thought I would share it here as well.
Click on picture to donate!

This time last year

I have been thinking lately about his time last year.  This time one year ago we were in the hospital for a week because of an unknown infection.  Yesterday, he played all day.  He ran.   He jumped.  He swam.   He ate and drank. And at days end,  slept so good.  This time last year I had to wake up frequently to help him turn in bed to find a comfortable position. I had to wake up to mess with his feeding pump that was hooked up to his NG tube.  In once a week for infusions.  I have not stopped to put my gratitude in print.  What an amazing journey it has been.  I want to thank Seattle's Children Hospital for all there amazing work.  Thank you to Rheumatology who as been there every step of the way.  Thank you to the nurses who speak with me frequently about the big and little things.  Sure I have minor complaints throughout my blog, but hey, its my job.  I am so thankful we were able to get him back.  There was a day that wasn't possible yet.  And it wasn't very long ago.  So thank you Father God  for your healing and your protection over this family.  I humbly recognized all that has been done.  I know the fight will be life long.  I will still worry.  I will still rant.  I will always be thankful.  I have him to love and enjoy with his brother and sister.  That is past the stars wonderful.  Thank you for each day God.

I love you all for the encouragement and support.  

Thursday, June 17, 2010

Almost Run Time!

I had started a Run Blog so I didn't over "run" Gary's blog with running stuff.  It's not ready yet.  But in the name of raising awareness my next marathon is coming up.  I decided to stick with the 1/2 Marathon.  June 26th Seattle Rock n Roll Marathon.   I am so excited!  Did I mention I was excited.  I am running with my good friend Michelle Pritchow.  We have a few on our team, that has been lovingly been named TEAM GARY by another team member Becky Kinney.   I haven't really pushed for donation this time because this race is more about raising awareness.  Of course, I am happy over the moon if someone donates towards the cause of finding a cure for jm, but everyone was so generous with the Austin marathon.   So we are raising awareness. I feel this is just has important.  My friend Heather (Mason's Aunt) found this interesting article:  Click HERE to read.

Raise Awareness!

Our Shirts will catch Bill Gates or Warren Buffets Eye!  Bill, if you are reading this CLICK HERE to make that donation!!!!!!!!
I am hoping for some Seattle sunshine to catch the millions and millions of silver glitter specks I have doused our running shirts in!   I hope to leave a trail of glitter LOL.  Maybe I should put more on?? Picture taken by my 8 year old.


Thank you to my friend Summer who always leaves me a comment.  Not to down play anyone else.  But I just wanted to express my appreciation for her input and love she leaves.  I find it very inspiring especially since she experiences this disease first hand.    Thank you Summer

Wednesday, June 16, 2010

IVIG Infusion Number: Lost Count

We had our monthly infusion today.  Our check in time was 8:15.  We had a great nurse in the infusion clinic.  She was on top of everything.  All went smoothly.  Except for the IV.    The nurse asked me right away if I had put numbing cream on before we came.  I replied, "never have done it that way."   I mean we have used the numbing cream plenty of times but never at home before we leave.  I told her that we would just go ahead and use the J-tip.  The numbing cream irritates him to no end.  His IV's have been put in on the first try lately.  So I put warmers on his hands but it didn't go the way I had hoped.  They tried in his hand.  Then in his arm.  All the veins have been accessed so you can only use them so many times.  So we went for the foot.  I told her don't bother with the J-tip.  It's an extra poke.  There were plenty of juicy, wigglies.  I had faith she would get it on the first try.  He did jump and scream a bit more, but it was in.


In my previous post, labs were important today.   They came back "ok".   They came back "ok" enough to lower his home dose of prednisone from 3ml to 2.5ml.    His AST level is 50.  That is still elevated but could indicate his liver might be irritated.  This level has been up for awhile.  So if it is his liver then going down on the predinose is a good move.  If its the disease, then we will see.


As I mentioned before our nurse was awesome.  She ran the methotrexate and we were out the door.  However, we turned around and went back for some Tylenol.  Gary looked really pale.  He was grabbing at his head crying.  They quickly gave hime Tylenol.  He slept and drooled the whole way home.  It's been a little rough this afternoon.  He is very temperamental.  He is King of the House tonight.   The Red Queen shall bow down.  Just for tonight though Gary.

Monday, June 14, 2010

Checking in Again

Having fun playing around with the new blog format : )

Gary is doing well!   His energy is as always incredible.  He looks pretty good.  He complains about tummy pain but I think I may have an attention issue going on.  He will say my tummy hurts so his Mommie will cover him in smooches.  I love it!    I am really pleased and feel at ease with where he is at right now.  I can't imagine how I will feel when we are tapering off all these medications and still going strong.  It will be like a fog lifting.  He has some small signs that come and go.  Like skin changes but overall, its good.  We have a  clinic appointment tomorrow at one to check-in.  Then on Wednesday we have our IVIG infusion at 8:15am in the infusion center.    So I will report after our visit.

Gary did well with the sun.  I kept the 70 block on the best I could and did the traditional hat, jacket, cover it up.  Seattle has not seen much sun yet this summer.  In fact typing "summer" is confusing because it certainly doesn't feel like summer.  We spent the weekend outdoors however for big brothers baseball games.   It was a lot of fun.  Gary did fall down and scrap a knee up.  He is definitely less tolerable of the sun then your average kid.  And that is from the disease and smear all the medications he takes to that sensitivity and I start fearing I am not being careful enough.    One sunny day we had a couple weeks ago, I did call on my fellow JDM moms because it looked like Gary was about to blister his face was raw red.  I had him covered, and blocked they whole day.  But they talked me down and sure enough the next morning he looked just fine.  Sure I begin to wonder if that exposure will activate the  process of the disease,   muscle weakness, skin rash, ect,.  

My good friends on facebook have been enjoying the fact I shared a little movie trivia with all.  My children watched the new version that is out, "Alice in Wonderland" with their Auntie and Uncle.  Well, they kindly informed me that they both agreed that I was the Red Queen and my sister were the White Queens.  So I YouTubed the Red Queen.  I have only one comment, "Off With Your Head!!!"    : )

Oh bother, I'm a gentle flower petal.   Well, until you walk in dump your backpack at my feet and slip your shoes off without putting them by the door in the basket.   OFF WITH YOUR HEAD

Thursday, June 3, 2010

Checking In

I wanted to do a post just checking in. Gary is doing well. On Tuesday we had our six month eye check up. Everything checked out A-Okay! No signs of damage or deterioration.  I think he may have been a little more sensitive to the drops because it took over 24 hours for them to start working again.  His eyes stayed dilated. Finally this morning they seem to be back to normal.  Gary skin seems to be less active lately which is a good thing.  I did call the nurse before Memorial Day weekend started because his eyes were puffy and bloodshot for the whole week. But they were fine over the weekend.  She said it could be a reaction to the Rituxan.  It could be allergies.  It could be the JDM.  It could be nothing.  It could be mentally draining.  Yesterday he did have a little bit of a rough day.  He woke up complaining of tummy pain.  Visited the potty a couple times.  Threw up dinner in the evening but wasn't showing any other signs of anything.  So I think maybe just a tummy bug or his body is starting to react to some of the medications?  Here is what I do.  If he doesn't have a fever, is not bleeding from anywhere, is eating, is going potty, is up and around, then he is OK.  Always watching.  You just know.

Before the tummy pains started he was had a big appetite.  These pictures were taken at 10:30pm.  He was eating a  peanut butter n jelly.