Wednesday, October 22, 2008

Catch 22

Yes, Rebecca, Lindsay received your package. The lamb is just darling and she loves to snuggle with it. It has actually been the magic ticket on getting her calmed down and to sleep the last two days. Just so soft against her face makes her relax. And the bow........so sweet. You spoil her for sure! Thank you!!! Thank you!!!


The meeting went fine but we have a change in events. Apparently our little princess is doing so well that she is not a transplant candidate at this time. When we had the discussion with the transplant team last week, they never expected for her do be doing this well as far as weening off the drugs and eating, let alone from a bottle! So, in other words, she is too healthy right now to be listed as a transplant recipient. So, again the goal is to get her well enough to go home and hope for the hemi again in a few months from now. They will be keeping an eye on her daily for a few weeks when we finally get home. A series of "chemo" treatments would have to be done to get rid of the antibodies that she has already accumulated in order to get ready for a transplant. So, that still might take place in a few weeks but she needs to heal a little longer before that takes place. The antibodies are good for her right now, but not for a transplant. That mixed with tricuspid regurge and just "ok" function is just not a good mix. So, we will go down that road if she starts to show signs of trouble in a short time from now.
JR and I are headed home tomorrow morning to get some things at home taken care of since we will be here for another couple of weeks probably. Meaning taking home the capris and shorts and exchange them with winter jackets and blue jeans!!! Man, has it gotten cold!! Hopefully I will have time to make some home made goodies to bring back for lunches.
OK, now for those of you attending Friday nights football game. Keep in mind JR's suggestion was never intended to be followed through with so PLEASE take lots of pictures!! All of you are so wonderful. I tear up every time I think about what you are doing for us. It is AMAZING!! "Friends are God's way of taking care of us."
You all are truly our gifts from God!
Love always,
Suzie and JR

10 comments:

Elaine said...

Wow...I am the first post!! Now, Jr...you had to know this was gonna happen...of course we will all have pink bows on our heads! I am just so glad you still have a sense of humor...amazing in itself... because you made us all laugh and kicked us into high gear (I was trying to figure out how to make bows in Chicago when I don't know where the fabric stores are...luckily, the girls here did it)...in turn, I am sure we made you laugh! Laughter really helps stress...so it's good for all of us.

I am glad Lindsay is doing so well and confounding the doctors...that's our princess! It must be hard for you guys though, when you think you know what the plan is and then it changes. You are doing so well rolling with the punches, so I think I will pray tonight for continued peace of mind for you and for the doctors who have to make these complicated decisions...and then explain them to you! You are constantly in our hearts,

Love, Elaine

aimee gillespie said...

What a sweet picture with her and her new "friend". It's wonderful to see that she's doing so well and eating like a champ again.

As far as Friday's game... while he may not have intended for us to follow through on the bows, we can't very well support Lindsay if we're under dressed! We promise pictures if you promise to control your giggling when you look at them! Have a safe trip back tomorrow.

Aimee

jessica jenkins said...

what an amazing child, you are truley blessed!

Maggie Geiger said...

Looking like a sleepy little princess!
As for Friday, We will be sporting the hair bows with pride! Who wouldn't want to look like Princess Lindsay??

Love,
Maggie

Stephanie Winter said...

Lindsay,
Can you please talk to Maggie Sue about keeping the bows in her hair? Thank you!
Love,
Steph

Anonymous said...

she looks so precious and healthy, how exciting!!!!!
YEAH!!!

oh yeah... just so you know, I WILL NOT be one of the ones wearing the big fat pink bow in my hair(hopefully) on Friday ha ha!
take care, I just wanna squeeze that little baby!
Tiffany

Shannon Poortenga said...

She just looks so beautiful!!! And we are all VERY excited to have our Lindsay bows in our hair tomorrow night. Funny thing though.....all of our 'guy' helpers bailed on us when they heard about this requirement :-) (just kidding).
We're just so happy that she's doing well, and we'll remain here on the homefront to help in anyway that we can.
Love to you all. And lets hope for a promising game this Saturday.

Shannon

The Butcher Family said...

The tears are flowing...I am so honored and humbled and blessed to see your beautiful little girl so perfect and content with Annabelle's favorite friend! (I still sleep with hers on occasion and love on it for her. Lindsay is the only one that I've been able to purchase another lovie for.)
Praying...and thanking God for the angel I just had the pleasure of laying my eyes upon!
Love to you~ Rebecca

PS- it's chilly in SC, too! Bundle up!

Amanda Groulx said...

We are all so glad that she is continuing to improve. One day you'll tell her how she changed the plan because she surpassed everyone's expectations. Its wonderful! We're praying for more good days hope you all get to go home soon.

Love,
Amanda, Ryan, Sonora, Maizy, and Owen

Amanda-The Family News! said...

What a sweet picture... And how sweet of Rebecca to send the lamb and bow to Lindsay!! She is one of my fave people!!! I am praying for Lindsay and am glad to hear that she is doing so well...I know you are ready to take her home!!!
Amanda-SC