Saturday, August 7, 2010

Aug. 10th is next infusion

We have settled in to the 1 ml steroid dose.  How's he doing?  Good.  On my scale of:

Not Good

I will be able to report that there has been some slow down and minor changes.  Last month when we were in I was practically doing back flips in clinic so happy with what I was feeling and what I was seeing.  He has slowed down a little bit.  I noticed changes in some muscle strength.  When I put him into his car seat yesterday, I noticed that reflex that went missing from before is trying to come back.  Same with lifting him onto the potty.  I also noticed he was drinking something and it took a few swallows to clear.  But that was one time.  Even I get that from time to time.  He has asked me to carry him quite a bit.  He wasn't doing that before.  But we have been walking quite far so I don't know.  I don't like to "I don't know" myself.  I did all last year.  Until they started the Rituxan, and all that went away, it confirmed I did know!  It wasn't just being a three year old or my imagination or a fluke thing.  So we will see on Tuesday how his labs are and what they say.  

Where did it go?
Summer is almost gone.  The kids go back to school on Aug. 30th.  I can't believe it.  It just went away.  I hope in the next couple weeks we can get a camping trip in.  I have to get the kids back to there regular sleeping patterns.  Right now they are waaaayyyyy off.  Going to bed really late, and waking up really late.  I am going to try and get all the school business done like supplies and clothes.  That way they can focus on what summer they have left.  One of our new favorite things to do is go down to the river and take a dip.  Ever dipped in a river on a hot summer evening.  MUST TRY.  It is fabulous.  Sure it hurts at first because its really cold.  But when you get out of the water!   And its all over with!  AAAhhhhhhh.  Your body tenses, then lets go when its all over with.  Plus, your cooled down.  The kids love it.  I did it after a  5 mile run.  Really really nice!

We are still in the running for the $250,000 grant if you haven't heard.  Please Vote. Thank you to all my friends and family who have faithfully voted thru the month of July.  I appreciate it so much.  VOTE
The Cure JM concert is also coming up quickly!  I am really excited.  It is September 11th, 2010 in Hillsboro, OR.  Features Blake Lewis and Jessica Lerner.  We had a wonderful time last year.  Email me at if you think you want to come.  We have a few families that are thinking about it.  I will let you know what our plans are, when I know what they are : )  The link to the concert is on the right>>>>

We have a jammed packed weekend in store.  Today the boys are going to the Seahawks training camp.  Why do we get such a wonderful opportunity?  We are blessed with loving, caring, not to be taken advantage of FRIENDS.  Thank you K. Patterson for the tickets.  I am staying back to let all the boys in the family go.  Want to know why?  Because tomorrow I have tickets to the hydros.  I won them on facebook.  I made up a poem, in seconds mind you.  It sounded like something a first grader would right but HEY I won :).  I have never been so that is what I wanted to do.  Yesterday was a free day so I took the kids down at the end of the day.  It was very cool!  I will post pictures later.

This week a friend lost her sister.  I use to work for the family at there restaurant.  The news was shocking.  I would often see them in the restaurant with her Dad having dinner or lunch.  I offer my condolences to the Potts family.  In loving memory of Therese.  It really wakes you up.  Makes you want to live life to the fullest. EVERYDAY.  

My brother-in-law is home and being watch close.  So is our house guests.  My regards to Whitney the baby basset hound.  That's it.  She only get my regards.  LOL   

1 comment:

  1. The taper is never a fun one!! I pray hard that ya'll can still keep tapering down! Your in my prayers today while getting Infusion....sorry I didn't comment earlier I haven't been feeling well!

    I see that JM is #6 ranking for Pepsi Refresh wooo hooo that is awesome hope they can make it to #2!! I will pray for your frien who lost her sister.....that is so sad

    I'm with you chicka where did the Summer go? By to fast if you ask me!!
    Oh Summer I'm right here LOL I am such a dork sorry had to say that hahahah

    Hope your hospital visit goes easy peasy and the nurses know what they are doing today :0)

    love ya