Thursday, February 14, 2013

Oh, yeah. The blog!

The blog kinda got away from me again, so I'm going to do some recapping of the last week.

Last Friday just happened to be a snow day, so I was able to go w/ Shel and Amie to the hospital to help, and to see what it looked like to film the Make a Wish video.  We got to meet with a bunch of other kids who are in treatment, and chatted for a bit with Lloyd Carr, former coach at U-M.

The small world thing is that he used to teach at Belleville High School, and was a coach there back in the beginning of his career.  I mentioned my connection to belleville and he was eager to chat about the new school, and his desire to see the new facilities.

The video shoot went well, and I picked up competing arm bands for the spirit of it all.  My heart is still with MSU, due to going to school there, but Mott and U-M have done soooooo much for us thus far that I have to give them serious cred in my loyalties.

I included the above two pictures just to show y'all how much hair she's lost thus far.  She definitely has the mad scientist look going on most days.  She reminds me of people with bad comb-overs who just need to shave their heads.  Not nice, I know, but my truth.  :)

It just boggles my mind how good of a sport Amie is with getting her port accessed.  Can you even imagine having a needle semi-permanently sticking into a part of your body, and being alright with that?  As you can see by the redness, the tape is far more of an annoyance.  They tape it all up to keep it as germ free as possible.

We are so gansta, so thug.

When Amie went to the video shoot, they gave her a gift of dress up shoes, jewelry and a purse.  She had no real desire to put on the earrings, but Anya did.  Why do earrings make kids look so much more grown up?

A big shout out to Aidan and Sophie Delfuoco for giving Anya (and eventually Amie) a GIANT popup book from Richard Scarry.  His Busytown stuff is a massive favorite of Anya.  As you can see on her face, she was exploding with happiness to check it out, and spent several hours with it thus far.

Are you on Pinterest?  If not, why not?

You could be doing someone's hair in these amazing heart shapes!  
Stop doing other things, and start pinning!

I'm not sure what it is about this picture, but it doubles Anya's age.

So today was SUPPOSED to be our MRI.  They have been doing a series of tests to make sure that Amie's body is ready for the rigor of the stem cell rescue that is coming.  They did a kidney test last week.  Today was the echo cardiogram to look at her heart.  Amie handled it about 90% awesome.  The 10% sucked was when we had to hold her down at this really awkward angle so that they could see where the port accessed a major artery in her chest, to make sure there was no damage.  That was fun!

We went up to the infusion clinic to get her blood numbers, and found that she's holding her own at the moment, and didn't need any blood.  They de-accessed her so she could take a bath tonight, and sent us home.  As we were walking out the door, they told us to stop by the family center because there were some friends there.

Amie was TERRIFIED...and warmed up a bit before we left.  She had no real interest in touching them, and wouldn't even high five them...but she wanted to watch them for quite a bit.

So that's the very logistical rundown of our last week.  We were supposed to be marching towards round 6 and the stem cell rescue, but we're currently in limbo.  We have an appointment with Dr. Yanik on Tuesday, and should know more then.

Tonight?  What are we doing for Valentines Day?  

We are getting an impromptu Date courtesy of Mr. and Mrs. Adler.  I'm writing this from a place in Ferndale while Shelley shops.  We just had an amazing Thai lunch/dinner, and we are going to catch one of the last movies for the Oscars that we haven't seen yet, Beasts of the Southern Wild.  Looking forward to it big time!

Hope all is well with each of you!