My emotions have been all over the place this last week ... and please excuse this post, it will probably be long and filled with many random thoughts and feelings. We are all slowly adjusting to being home again as a family. One part feels so incredible that I cannot even begin to describe, and the other part leaves me full of sadness and worry. It is amazing to wake up together, make breakfast and get the little ladies off to school, spend the afternoons playing outside or just snuggling up on the couch, having dinner together, doing bedtime rituals together ... it is so great! I tear up half the time just doing this "normal" things because it feels so surreal. Amora (our youngest, and I think the one affected by this the most) thanks me everyday for being home. It is like she cannot believe its true that we are here. The hard part is leaving the safety of the Ronald McDonald House and our trusted team of doctors that were just within walking distance away. It is also hard on your heart to leave behind the many families that turned in to our "temporary" families. I feel bad that we were able to leave and that they are still there fighting the monster. The day we were packing our room and leaving, Penelope - an adorable, too smart for her own good, four year old girl said ... "You are part of our family now!" It was the sweetest thing and honestly, I can hear her saying that in my mind daily. There are too many families and children that we met at the house to mention them all, but I truly loved each and everyone of them. The support and comfort we felt was something I never experienced before (especially when you add on they were all strangers). Brianna had her first check-up at the Albany Med on Monday. Her counts were great and the doctor said she looked fabulous. We will return to NYC this coming Tuesday (6/18) for a more thorough exam from our team of doctors. Since we have been home Brianna has been sleeping a LOT, when I say a lot ... I would say she is awake only 5-6 hours a day at most. She has also been nauseous daily and needing medication, which is a bit out of the ordinary for her. She also vomited (just once) ... but was the first time in months. I am hoping it is just the adjustment of being back home, and nothing else. I can admit that my worst fear, that is on my mind constantly, is what happens if she gets sick again? I cannot leave my family again, I cannot stand to know the heartbreak that my little girls, Gavin, Brianna and my husband would feel if we have to do this all over again. I am scared. Truly scared. All I can do is continue to pray and thank God for the amazing steps we have already taken. Due to the transplant, Brianna is not allowed outside in the sun. We were hoping to be able to visit our local lake (and beach) this summer, maybe go to the zoo, or local theme parks ... but because of her sensitivity (even the smallest sun burn could cause Host vs. Graft disease) we will not be able to do those things. We have decided to have a yard sale this weekend, and will put all the profits towards so much needed things so that we can ENJOY the summer together as a family, here in our own yard. We would like to get a pool, so that the children can go outside and play and keep cool. We also need to get some sort of gazebo that has SPF so Brianna can sit outside with us all. The other two things she needs is a SPF shirt and special SPF hat to be outside. Hopefully with our yard sale, and I also posted a wish for these items on Wish Upon A Hero, we can make this happen for our family. Thank you for taking the time to read my post, and please know we think of you all often, and thank you for caring so much about our family.
Posted on: Thu, 13 Jun 2013 12:39:49 +0000
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