Wednesday, July 4, 2012

July 4, One step forward

10:43 pm, Well it took most afternoon, but we got Lindsey standing up, took a step, and sat in the chair.  That was a big deal.  She didn't want to do it and was scared most of the time.  It's amazing how weak she is.  It reminds me of how weak Sierra was post transplant.  Eye's sunk in and very thin. While she was sitting up the nurse took out the IV in her neck. It was a large IV with 3 ports.  That IV is why you see her kinked neck to her left side.  It had been sewed into her neck. It came out, but now without a lot theatrical display from our Princess. She has now decided that was OK to take out.  She ate 3-4 bits of a cheese pizza and a few grapes.  That is the first bites since last Thursday.  I'll take that. Tonight they are doing a full dressing change on her chest, around the Berlin, and her other 4 IV's.  It's a big deal.  2 nurses and my wife have been in there for about a hour.

Mike Wright, a member of the local ward, came by for a quick visit.  He called ahead and we ordered Root Beer for Gage and I, M&M's and Andie's Chocolates for Lindsey, and Junior Mints for Stacy.  It was very kind of him to come by.

Gage still makes the comment, 'My tummy hurts'.  I am beginning to really hate that phrase.  The pain seems to be localized around the incision.  He took a few more steps tonight.   He had about half of a cheese burger.  Now we are talking. I think tomorrow he will be on the up and up.  They are still being very aggressive on his heart med's.  They are going up daily on his Enalipril, and will start the beta blocker soon.  Knowing the path of Sierra and Lindsey, they are trying to postpone Gage's heart failure as long as possible.

Attached is a picture of a pacemaker similar to Gage's pacemaker.  The only difference is that Gage's has 3 ports off the top not 2.  Gage's has one to the top of the heart and 2 wires to the bottom of the heart.

Wish we could have been to our Bingham reunion. Sounds like they had a lot of fun.

Stacy and I have heard of the incredible generosity from our community. We are humbled by the kindness of so many people.

Pacemaker. Gage's has 3 leads rather than 2. 

Matching kids with their cute scares.


 




  

8 comments:

Anonymous said...

So happy to hear about the small improvements. Its even better hearing Lindsey is requesting food! Keep on trucking along kiddos, you are both amazing and so strong (must get that from your awesome loving parents :) )!!!! prayers and loves-- the nedrow's

Anonymous said...

Even small improvements are welcome. Sweet to hear about a good response to fundraising efforts and it's hopefully just the beginning. I just love that picture of Gage and Stacy sleeping. You're the best parents in the world! Love Judy and Phil

The Lewis Family said...

While I was over at my parents today Unle Allen called from the auction to tell my dad what was going on and let him hear the bidding. I could hear from clear across the room all the commotion and my dad would repeat everything Allen would say. Our hearts were full and so impressed with the outcome from "little" Haines Oregon. We love you all and are grateful to be part of this journey.

Anonymous said...

Yahoo! Little gains are HUGE! What a great 4th you had, so many 'happy' things happened! Thank you, Lord!

Kay Patterson said...

lLove the picture of those two beautiful kids. So glad to hear they are becoming more mobile, just sorry it has to hurt. Thanks again Jason and Stacy for keeping us updated everyday. We are thinking of all of you consantly and it means a lot. Love ya, Kay

Anonymous said...

So glad to hear about the small improvements. I love the picture of Gage and Lindsey together. Knowing that they have each other, will let them know they are not going through this alone. Stay strong Jason and Stacy. I Will continue to check the updates and pray for your family.

Sarah Johnson and family

Anonymous said...

We are praying for your family! We were at the Haine's rodeo yesterday and it was amazing to see how much money was donated! We hope for the best for your little kids and will keep you in our prayers!

Melissa Kirkland said...

Having 4 kids of my own, I can't even begin to imagine what your family is going through!! I'm not a very religious person, but because this has touched my heart so much, I will pray hard everyday for your kids & family..