Tuesday night when the kids went to bed, I explained to Gage that he couldn't eat anything after midnight and he could only have clear liquids until 6 in the morning. At 12:30 AM, I felt a repetitive tap on my shoulder and startledly woke to a cute little chipmunk face right next to mine. After jumping, Gage, in his cute little voice asks, "Mom, didn't you say after midnight I could drink clear liquids?" Thinking of how grumpy he was going to be if he didn't drink something, I was thinking a Powerade was a great idea. So, he excitedly got the 986 mL Powerade and I opened it with the explanation that he could only have slow sips and not drink the whole thing. He consented to the instructions and went to bed. When I woke up that morning at around 5:30 AM, I looked over and there sitting by his bed was an EMPTY bottle of Powerade. I was shocked, here everyday for 512 days I begged him to drink that much in a day. Now, I have to hide the drinks and tell him to slow down, since he is now on a fluid restriction. It's a great irony. He is eating very well and is ALWAYS hungry. A nice change for once.
On to the frustrating part, Sierra received another 1B. This is NOT like a 0. She keeps having these 1B's (grrrrr). Her last biopsy was a 1A, but the 3-4 before that were 1B's. So, she will be seen in clinic in 2 weeks and repeat biopsy in a month...again. The good news is her coronary arteries look pristine. Her poor neck is thick with scar tissue from so many biopsies and they are getting more and more painful as they have to push through the scar tissue to do the biopsies. My heart just aches for Sierra. When will her break come? She is constantly struggling with different aspects of her life and her heart always has to be one of those. School doesn't come easy for her, she always wishes she had guys ask her out on dates, not to mention the younger sister that is right there shining in everything she touches (not that we aren't proud of Megan). Sierra is such a kind hearted soul and mature beyond her years. I just wish she could catch a break for once. You wouldn't know any of this is going on in her life looking at her. She is always positive and just acts like life is great.
News like this is always a little bit of a blow, as we find ourselves getting excited to FINALLY be able to go home. Then this happens and I feel like, "Man are we ever going to return to our life in Oregon, and if so, for how long?" Three kids with heart transplants, the odds are not in our favor. It will happen some day, and when it does, we will treasure every moment we have for as long (or short) as it lasts.
Ready for biopsy!
Trying a new distraction technique in the biopsy room. Virtual reality movies. Worked great until he was turning around backwards in the bed to see what was playing.
Below, biopsies are all done.
Gage played his first baseball game today without his backpack. He was really excited to play the last few games of the season.
Pack Meeting tonight. Gage received his wolf and Hunter his Webelos badge and Arrow of Light. Way to go boys, really proud of you. Thank you den leaders for all your work and effort in helping them get there.
Gage's cute chubby cheeks at Sierra's last band concert of the year.
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6 comments:
Just gonna keep praying, focusing on Sierra now. What a beautiful human being. Thanks for the updates and even tho the sun might be shining in California, I wish you could be in Eastern Oregon to smell the fresh air and enjoy home. Hugs from High Valley.
I'm glad that Gage is doing so well! Poor Sierra having a 1B and dealing with painful biopsies. I hope her next biopsy is 0 or 1a. *hugs*
You guys are inspiring! We drive my in laws around town today, and as we passed the RMH I was telling them about your story. I'm truly inspired by how much courage and resilience and love you all have! Holding goid thoughts for the biopsies!
My prayers go out to you and your family..May God be with you this day ..and always.
Gage looks so good (even with his chipmunk cheeks) He had to be so thrilled to get rid of the feeding tube. It was wonderful to see pics of him playing baseball and attending scouts. My heart breaks for Sierra, she's got to be so frustrated with her 1B and 1A's, saying lots of prayers that doc's know what meds to tweek and get the next one to be a zero. I think Sierra's doing a wonderful job with her schooling and stuff, you need to remember Sierra has not had the same process as Megan. She's had two transplants and all that goes along with them...illness, hospital, biopsies, appointments, etc. that definitely impacts schooling...sounds like she's doing a great job to me. Tell her to keep working hard, she'll be fine. Tell her to check with her school counselor for scholarships for college many have you apply junior year.
Prayers for sweet Sierra!! Thank you for updates so we can keep you ALL in our prayers. 🌺🌸🌺🌸🌺
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