Monday, January 28, 2013

Jan 28, Day 223, Monday

Been sitting here for a while trying to come up with something.  More of the usual. Monday is blood draw and dressing change, but nothing to report there.  All stable there, that's good!  Meghan Cleary was here today. She had tests here at Stanford, then spent the day helping Stacy with the kids. She was very helpful and we really appreciate her efforts to be here.

 Last night and tonight Stacy and I have had some good visits with our kids. Believe it or not, some (all) of our kids are getting tired of being here (in the hospital). Tired of always coming to Lindsey room, "When can we get out of here", even some tears shed over it. Lindsey is tired of being left alone (which isn't much, but it does happen). When Lindsey has those alone times she starts to get down on herself. Feelings of worthlessness and hopelessness and loneliness. Everyone is trying to keep her spirits up, and frankly, we are all surprised she is doing as well she is. To be stuck in this situation month after month after month with no end it sight has to be tough. The boys are good, just all the energy in the world. Thank goodness Hunter has all-day school.  Stacy and I are making it work, but it going to get tough as I get into tax season.

On Wednesday, they (social workers, therapists, nurses, and doctors) have invited us to a 'Care Conference' for Lindsey. This is not a negative thing. They can see the struggles we often have and want to get together to see what can be done to improve Lindsey's overall well being and quality of life. They have said this many times, they are good at taking care of  'sick' kids, but still learning how to take care of 'health' kids (like Lindsey). With the Berlin life support system, Lindsey acts and feels 'healthy', so what can they do to improve her quality of life. I hope it is a positive experience.

Understand, we are all doing well. Kids are active in school, keeping up on their homework, have good friends and leaders, and seem to be making good choices.   Lindsey brightens the day for many patients and nurses.  Dina looks forward every night to Lindsey's visit and little jokes. Leif tagged along with her to the CVICU for her rounds.  Each night Stacy and I thank our Heavenly Father for the blessing in our lives, and pray for the strength we need to keep her spirits up.   Each night I look on Facebook and see friends and family living 'normal' lives.  Our 'normal' life is unique, someday we will have a new 'normal' (without this ugly chin hair), but not yet.

6 comments:

Karen and Pam said...

Hello. Please know what an example of faith and fortitude you are to all of us praying for you and reading the blog! I showed Cara the video yesterday and later she was "playing Lidsey and had two brothers, Hunter and Gage". Made me take a video of her! anyway, we love you and are all wanting for this to have a happy outcome for your family!

Anonymous said...

Hoping that during Lindsey's Care Conference the doctor's and nurses could work together to make some changes happen for Lindsey.... more outings with different scenery. Any further with going to the Sobrato Rm? Jason every time we are blessed with an opportunity to do something (normal daily activities) I lift up a prayer for the Bingham Seven knowing that these are the activities that you all enjoy and that soon you'll be able to do again as a family. I feel more blessed by knowing that these moments are precious. Wow, I also think about how busy Lindsey will keep each of you when she is blessed with her perfect heart and busts out of the hospital. She will probably be in awe by just being able to completely use all of her senses. This day will come until then we will focus on praying for strength, hope, peace of mind, for the donor family, and for the doctors, nurses, and each of you. Hang in there... our love is with you. Loves, hugs, and many prayers xoxoxoxo

Sherrie said...

I have been following your blog for months now. You faith is such an insperation to me. I know our Heavenly Father is blessing you all.

Sandy Cummings said...

Thinking of you guys -- hang in there, Lindsey! You're one day closer to getting a heart and heading home. Here's a silly joke for you in the meantime, since I know you like to dance:
- What do you call a dance on a trampoline?
- Hip Hop!

Hope to see y'all soon.

Anonymous said...

There are some amazing things in store for Lindsey in her life. She is a great blessing to those she visits on her 'rounds'. Your family is the example for us all.

We enjoyed your fun little video.

Hang in there, You can do this.

Love from the Thompsons

Anonymous said...

Great post! Our prayers are continually with all of you and think of all you are and are not doing and how that affects all of you. Definetely a difficult thing for all 7 of you and how impressive all your little loves are. Your family is truly an inspiration to all who hear your story and see your faith. I look forward to your new normal! love all of you lots!!! J,E,K,A,L,B
(can you guess who we are)