A few great days in the books. In physical therapy she was doing squats with 10 lb weight, and we did two 50 minute walks today. We go all over the place here and on the Stanford side. The only real issues they are watching is the occasional irregular heart beats and her eating. She is eating okay, not great, but they catch her up over night with the feeding tube. They asked her today if she whats them to remove the tube and she said, "No way!". Really, she is in great condition for the transplant.
However, sometimes she gets down and depressed. As she is feeling better and acting like her self, she is also getting tired of being in here. It's the same story you have heard for months, but now she is saying it. We all get to leave, go to school and church, go for a ride in a vehicle, ride off on our bikes, see something new or different and she is stuck here. She is really getting tired of the Berlin, she can't take a shower, she can't jump or run, she can't go up or down stairs, she can't ride a horse or 4-wheeler, she can't jump on the trampoline or swing in a swing, that dang pump follows here everywhere. She is tired of having food forced at her, and people poking and checking her. She is tired of the monitors and alarms. This stuff never goes away. She misses her cousins and friends and just wants to leave. We all get to leave and have a break but she is always here.
Don't get her wrong. She is not complaining (maybe a little bit), but she understands what is going on, it just seems to her like this will never end. 99 days on the Berlin seems like a life time to her. Especially as she is feeling better, or feeling great, and wanting to get out she feels locked in here. As the support and cheerleaders, we are trying our best, everyone is trying to help her. We go on longer walks on the Stanford side and down different halls just to look for something new. The nurses are trying there best to keep her spirits up. 95% of her day her spirits are up, but I am sharing that 5% of the time when she gets down.
Honestly, I am surprised she isn't down more often. Most of the time, you would have no idea she has these feelings. It is wonderful to have her feeling this 'good' to be wanting to get out and do and see more. On the walks, she likes to walk through the CVICU on the 2nd floor and see Tristen and othe Berlin buddies, she also wants to know if they have a room for her when she gets the transplant. After seeing how sick some of those kids are, she is grateful to be up and walking the halls of 3 West. Some of those kids are in pretty rough shape.
They say as healthy as she is, once the transplant happens, she could be OUT of the hospital back to the RMH within a week. Lindsey holds to that pretty tightly.
It has been nice having ReNae Coleman, Stacy's Mom, here. She has been a big help, especially on Sierra's biopsy day and allowing me to work. (By the way, we are still excited about Sierra's zero).
Enjoyed my cousin, Kristen's comment on Facebook about needing a 'Change of Heart'.
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By the way...
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........ I hate it when the Aggies lose to BYU!!!
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It just burns my hide!!
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8 comments:
Funny (not really) I had an idea as to how it might be for Lindsey but to really know is heartbreaking for me...that little girl is so wonderful! Not much I can do but pray for her so I do. God bless and hear the prayers......M.
am so glad that she is doing so well and that she is so strong. Today is a perfect day for a transplant!!! Tell Sierra we did a zero dance for her here in UT. We love u guys and continue to pray for you everyday!!! GO COUGS!!!!
Truthfully, 99 days seems like a lifetime to me too--here's hoping things change for the better soon!
Is there any way she could take a trip in a car? It is a pain to be stuck there every day.
We are praying for a heart. I sure hope she gets one soon.
NovaLee says she would take her place for a day if she could she misses her so much, she asks every day if there is any exsiting news today and when we say not today she says well then we keep praying and it will happen. She wants to bring heart cupcakes to school when she gets her new heart. Congrats to sierra on the ZERO thats great. The Shoemakers
Thanks for the updates! I love to read them! I can't imagine how long this must be for you as a family and lindsey! We listened to conference today, I thought about you all a lot. We sure love you a lot and can't wait to see you!!! And as far as the aggie deal. me too! love you all! Love Uncle Seth and Aunt G
Lindsey Lou definitely has every right to be sick and tired of that hospital and should be able to let everyone know her battles. I always thought, "wow, what a rough road," but until I actually was there and felt the highs and lows it put things into a whole new meaning. It is so easy for us to think "man, today sucks," but really NO day of every day living is anything compared to that of the shoes Lindsey is walking in or for that matter many of the other kiddos and their families. Spending time with Lindsey and walking the halls seeing or "living" what challenges kiddos and families are facing is simply incredible. My heart goes out to each of them, and I try to live each day with being more thankful and greatful for all the blesssings I have been gifted. Life is incredible and precious and knowing that Lindsey is missing out on the outside world is saddening, and it's easy to say that she will soon be outside living it is also tough because its not happening today. We continue to pray for her and for more blessings, may the Heavenly Father watch over her and her donor family. loves, hugs, and prayers to each of you xoxoxoxo Hang in there guys...He is with you each step of the way.
Lindsey, WOW you are doing amazing!! I can't believe you are doing that long of walks and now working with 10lb weights. You keep it up my little one. God is with you each step of the way. Love and miss you all.
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