Thursday, December 12, 2013

It has almost been 2 months since I have updated.  I can't say that life has been perfect by any means, but we seem to have a lot less going on that seems news worthy.  Halloween, Thanksgiving, and Christmas are not what they used to be.  No matter how much I try to move on, I find myself reliving memories of the worst years of my life.  Halloween was when it all started.  Her first 2 Thanksgivings we spent inpatient.  Her first Christmas we were getting a central line put in and her first New Year's Eve I laid awake in a fold out couch thinking about the decision I had just made to put poison in her body that I didn't even think would work.  Last Christmas I was frantically booking flights and getting us packed to travel to Maryland for a clinical trial I had 3 days to prepare for that didn't work.

This Christmas seems to be a little less frantic.  Just to keep life interesting, I have procrastinated Christmas shopping like I do every year.  Kendall seems to want every toy she sees on tv, whether it is for a boy or a girl or if it is an infomercial.  She wants it "RIGHT NOW".  It is her world and we are just here to serve her needs.  It's exhausting but I challenge anyone else to discipline a child that is in constant pain and at a moments notice can go off into an hour long tantrum because she has a nail that is rough or her 10 month old brother is looking at her funny.

Ive increased her methadone 2 times in the past month.  It probably needs to be done again.  The girl is on enough pain and nerve medication to knock out an elephant, yet she functions.  It just goes to show how much her body needs just to cope with life.  I thank God everyday that we have such an awesome group of NP's and doc's on her palliative care team.

I gave up on the clinical trial that she has to swallow a pill for.  Then I noticed on a FB group that I'm on that there is a waiting list a mile long for kids to be on it.  Well, human want what everyone else we are back on for trying.  Unfortunately for Kendall it will be hell for her because I'm just going to have to do the caveman approach and force her to swallow it.  Screw the fluff of making her happy.  It's do or die now.  She doesn't have a choice.  Hopefully it's worth it.  I'm fully expecting it to set us back on any progression we have made in oral feeding but considering that is none, we don't have too far back to go.

Kendall is still loving school so much.  It breaks my heart after I pick her up at lunch time.  I think she holds it together so long at school and just crashes as soon as we get in the car.  It's meltdown mode until she goes down for a nap.  From what her teachers tell me, she rarely complains of pain while she is there.  Once we get home and I turn on her shows, it is nonstop back scratching, leg rubbing, and changing positions.  Some days she doesn't even want to sit up in her hippo chair that has always kept her comfortable.  I'm just glad she can function at school and is making friends with her classmates.  Lately, she has been coming out holding hands with one of the little boys everyday.  Cutest thing EVER.

As for the rest of us, we are doing well.  Braden is busy playing mind craft and going to basketball practice.  Tanner is a handful.  Braden was such a good baby, never got into anything.  Tanner just looks for trouble and loves to laugh when I tell him no.  By the 3rd, they are a little less stressful.  Maybe Kendall has taught me to be more laid back but I'm constantly thinking, "will it kill him?"  If the answer is no, then he's good.  He's already taking steps and crawls fast.  Here is what I had to buy Kendall to keep her safe.
Tanner doesn't realize that he is the one that is free.  He just holds on to the side and cries the entire time she is in it.  

Here are a few pictures from Halloween.  Kendall's costume ended up working out at the very last minute, thanks to some help from her speech and feeding teacher.

Hoping everyone has a safe and merry Christmas.  Thanks for all of the prayers.