Avacado Salad

By Stephanie

Okay, I saw this on pinterest.  I have tried some things on pinterest that are NOT so yummy.  But this one is!! Oh my, it is SUPER yummy.  I have been trying to do low carb, Amy will tell you, I have no will power.  I really can’t do low carb.  But some days I try.  This was one of those days.  I had left over chicken that my mom had made (mom’s fried chicken…YUMMO) that I chopped up.  Then I chopped an avacado and tomato.  Added pine nuts and feta and holy cow delic!!  Super easy.  Super yummy.  And seriously no dressing needed.  I did have some lettuce that I finely shredded and added to the bottom, but really it didn’t need it.  But you can.  And I am not posting a recipe, but I just added “some” of each.  Make it the way you like it. 

 

Busy, busy, busy

By Stephanie

 

   I have been super busy.  Partly because my mom was here and was lending an extra hand.  I wore us both out.  She went home yesterday.  I am in withdrawals.

   Avery has been busy…eating.  Kind of.  My mom bribed her with money, $1 a bite.  She earned a LOT of money this last week.  I am okay with it since it was getting her to eat.  Even if it was only a few bites at a time. 

   Every night we are hooking her TPN up.  Here is what it looks like when I lay everything out.  It takes about 30 minutes to add the vitamin, zantac and get the pump ready for her. 

Then it goes in this briefcase like backpack until 12 hours later when it’s done.  You can kind of see the tube going under her shirt into her port on her left side.

 

I KNOW this is a crappy pic, but here is the little bit left in the bag in the morning.

 

All done.  She is being fed!  Plus with her eating we are looking at switching over to the NG tube (up her nose).  It will be better because it goes into her stomach. 

They have delayed her next chemo, she was suppose to start last Wed (Aug 22) but we had to delay.  We will see when we can get the next round going. 

Also they started school!!  YAY!  She even got the “GO'” from her doctor to go her first day.  She ate a chip, yep just one, for lunch.  But she went.  She loved it.  And she came home exhausted!!  All my kids are in school.  For at least an hour I am alone.   Hallie is in pm kindergarten and Nathan gets home at 2:20pm.  So it’s not much alone time, but some.  I’ll take it. 

Let the Sunshine in…

By Stephanie

Avery is doing the same.  Her stomach hurts which leads me to believe this has been a virus on top of her not eating.  Glad she had another bag of TPN last night!  We will get her taken care of.

So in between doctor visits I have done a bit of sewing.  I made these curtains for $20!!  I took two white panels from Wal-Mart (15$) and paired them with this one green panel I found at Ross ($5).  And that cute black and brown hutch I found at the restore for $25!  Inside I have the mail, phones and chargers.  On the bottom I am storing my ridiculous amount of cookbooks.  The arrangement on top needs some plants or something.  I’ll get to it…someday.

If you look close you will see Hallie eating breakfast and a few boxes in that corner. 

And here is one set of panels in the girls room.  I would have the other set done, but I miscalculated on the ric rak.  I need 10 more yards!  Sheesh.  That is a LOT of ric rak.  I already bought 14 yards.  I will get it done….sometime.  And yes I moved stuff out of the way so it looks clean and organized in that room.   It’s so NOT. 

 

Food in a Bag

By Stephanie

Avery is doing MUCH better today.  For the first time in almost two months she is NOT loosing weight...wish I was.  And she was "chatty Kathy" at the doctors.  He noticed right away how much better she seemed.
It's thanks to TPN.  Total Parenteral Nutrition.  It looks like a bag of milk she gets through her IV.  A nurse came to our house last night to show me how to hook her up (through her port).  It runs for 12 hours so I had to unhook her solo.  We did fine.  Tonight another nurse is going to come watch me to make sure I am doing it right and answer questions.  We are going to be doing this every night until at least Monday.  They will then reassess her and see if we can stop and do the NG tube.  She did throw up this morning again, but she was able to keep her meds down (Thank heavens!).  She also got up to pee five times last night.  HOORAY!  That means she is getting enough fluids.
It's just been a bit more difficult this time around.  Having a new doctor that doesn't know you or your kid takes some time.  But we are getting there.

See the prayers are working already (as if they ever stopped).

Stephanie

On the Go....

By Stephanie

Okay, so here it is...

She is not eating.  She has not been eating or eaten a "real meal" in SEVEN weeks.  Not kidding.  We have been discussing this at the doctors.  We have been giving her fluids and watching her.  We have been worried.  (She is now down to pre-steroid weight.  It should have taken 7 months for that, not 7 weeks).

She had platelets and red blood cells last week.  And again yesterday.  That is another contributing factor to why she feels so crappy.  But I CAN'T get her to eat.

Then Monday night she started throwing up.  A lot.  All the time.  All night, all day. How can someone that doesn't eat throw up...good question.  I don't have the answer.

So NOW we get to go to the doctor every day this week.  They are trying to set us up with an at home something to give her "food" through her IV.  That sounds fun...and expensive.  I think we could make another house payment with all our out of pocket co-pays and meds this month.  Because of course we have tried three different new meds for nausea.  All of which don't work.

Yep, I am tired.
Yep, I am frustrated.
Yep, we will figure this out....eventually.

Oh and for all those that your kids are already in school.....LUCKY!!

I was going to post pics of my cute curtains.  But they...along with the rest of my life, will just have to wait.

Oh and if you want...you can contribute to our medical fund.  We are thankful for all of your prayers, support and love.  It helps me be not so crazy....mostly.

Decor help

By Stephanie

So I talked my two youngest into sharing a room. It is by far the biggest room in the house.  Like 24x11big. One we have ten foot ceilings. That room feels massive.
    In order for Payton to agree to share I said I would decorate it first.  The rediculous amount of blank white wall overwhelmed me. And she insisted on bunking the beds...more space. Of course I have been looking through pinterest for ideas. But if any of you talented gals could offer advise, I would love some.

I would post pics, but my Internet on my desk top stil
 Isn't there...ggggrrrr.

We r still here...

By stephanie

    We are still here...
  No really.
      I only get Internet on my I pad...I so need a real keyboard.  I am working on it.
    I love our new house.   It has a lot of room. Tons of decor possibilities.  A few areas with challenges to work on.  But it comes with SUNSHINE.   I have tan lines.   Oh the vitamin D bliss.  I do miss the great ladies in WA.  And our Dr.s.  Not the Rain.
     Avery.......oh my Avery. Ok now we get to see how lucky we were on steroids. She eats nothing.   Literally.  Eating three crackers and two capri suns a day is big for her.   This is going on for FIVE weeks!   She's already had fluids...twice. I think wednesday she will need more.  And in two weeks she has her diet restrictions.  I have NO idea what we will do then.