Days 178- 183

Molly and K's hands

Thank goodness this round of steroids is done.  This week was just awful and roid rage was extreme.  It was difficult to leave the house without Kennedy having a meltdown backed by extreme frustration and spotty pain.  Leaving for work or anywhere was a challenge.  We noticed that she was easily distracted from the crabbiness and the pain by playing so we used it to our advantage.  Thanks to some last minute help on Tuesday and Wednesday, we all survived the week.

Tuesday morning, I texted Molly and she thankfully came over to play with Kennedy.  The 20 calls I received on Monday were reduced to about 10 on Tuesday.  Wednesday, Stephanie came over with all of the kids and Kennedy spent the afternoon painting everyone’s faces.   I am so thankful to both Molly and Steph, I’m not sure we would have made it through the week with the help!

K painting Kaitlyn's face

Thursday was clinic and her counts were through the roof due to the steroids (something like 16,000).  Dad took both kids to clinic because Maddox wanted to go and he thought it would be good to keep K distracted.  This clinic visit was not the best.  The nurses had to access her port twice, the first poke didn’t result in a blood draw and after trying to move the needle around a bit, they de-accessed and re-accessed her.  There was a lot of screaming and Kennedy was extremely upset.  It is not fair that Kennedy and all of the kids at clinic need to go through so much, so young.  Gene was emotionally drained by the end of yesterday, obviously traumatized by dual poke and Kennedy’s extreme mood swings.

Maddox and K at clinic

Maddox wanted to dictate a portion of the blog regarding clinic, so here it is…. “First we got there, then Kennedy was sitting in the big chair.  Then, we got a little hungry when we got into the new room and daddy gave us some chips.  Then we watched Home Alone and then she got the needle stuck into her chest two times.” 

K - today...happy, finally!

Today I put up the backyard water park and Steph came over with the kids again and they all played.  Kennedy is still extremely emotional but I can tell it’s already getting better by the smiles. 

Tomorrow is Kennedy’s Bear Necessities “Bear Hug”.  We are all headed to the Big Time Rush concert and Kennedy gets to meet the band.  She is very excited. 

We meet with the school next week to discuss Kennedy’s kindergarten special-needs.  So far the school has been extremely receptive and I really like the new principal.   A letter will be sent out to Kennedy’s class at the start of the school year to hopefully help incoming students understand why K is bald and the need for all of the sanitizer.