EVENING BABBLE -
LOL i had to put that in since this is not a trip update etc just some random babbling, that way if you are not in the mood to just read someones random babbling about nothing you are forwarned hehehehe
James Remicade was today. Overall it went well, I am NOT happy at how late they started it. How fast they adminstered it. HOw they did not check his BP as often as they are suppose to. and the fact .... GRRR this one gets me the most .... The saline flush at the end was almost 100% non existant. and after treatment finishes they are suppose to keep him for observations for 30 to 45 mins. She was going to release him within 10 mins. Luckily she was sidetracked and he ultimatly stayed the extra 30 anyways but goodness me ( I have other words in mind besides goodness here... but I will keep those to myself !)
If they had administered the treatment a bit more slowly I don;t think james would be so ill tonight. He was acting quite bizarre today during/after treatment mood wise and by time we come home his tummy was upset and he even had a hard time sleeping.
The positives of today is.....
see if i Gripe i really try to see the positives right after so bear with me.
The positives of today was this.
James was very clingy with his sister and he wanted her to come along. By all rights she should have been in class but my heart melted when he begged for his big sis to be with him so I caved. Other than feeling guilty for allowing her to miss a day for this, I beleive it was important to both of them. The bond they share is amazing and who am I to break that? she would not have had the opportunity to concentrate properly after him begging for her anyways. so very bitter sweet moment to me
second positive thats amazing ! James Wish coordinater came and sat with us today which was so nice. She is so awesome you guys you just have no idea. So down to earth, so easy to talk with ask questions to etc. and the idea that someone gave up several hours out of thier own busy schedule to sit with us while he gts treatment was amazing and awww she brought James a magazine, a puzzle magazine and MELT here we go my sappy side i jusssst melted (luckily I hide my emotions well 95% of the time in person) but her daughter put a lollypop bouquet together in a GI-Joe cup for James was tooo cute and sooooooo thoughtful and wallah a rare smile out of james
another positive of the day was A woman in the hospital was going around checking rooms out, a volunteer and she comes in and asks if james might want a small quilt. i went ahead and said sure i beleive he would he was napping at this moment from the benadryl that they give him awww you guys it was soo cute and had a cute notecard attached which said
This Blanket
My heart was thinking of you,
My hands knew what to do.
This blanket grew out of the love
I want to share with you.
I hope it will keep you warm,
and befriend you late at night.
I hope you'll come to love it
and be comforted by it's sight.
Let this blanket wrap you in friendship,
and cover you in love
Because this blanket was thinkng of you,
Long before it was even done.
AWwwwwwwwwwwwwwWWww melt
It's an organization called Projet Linus the tag that they added on inside of blanket has Linus from snoopy sitting holding his blankie sucking his thumb hehehe didnt notice tag until after we got home it's too cute and had a website
www.projectlinus.org
and last awesome thing that happened today was ! we made it home safe an sound. ! ooowee I do have a fear of that darn interstate lol hate to drive it but I will do anything for my kids.. even face one of my greatest fears *sigh*
so that was our day....
Oh and 8 days prior to trip starting and 9 until wishflight itself !




lol lordy i need to work on the chores for before trip LOL time is running out
