8th scope

Rylee had her 8th scope today. We made it through the bad weather to Children's right on time. Her platelets were at 54, not the highest and also not the lowest. They decided to put her IV and administer platelets in the procedure room and we opted for no varcet this go round. She was in a terrific mood! She was making what she calls Uncle CC crazy faces while waiting to be picked up by Ms. Tammy the GI procedure nurse. Dr. Monagus came in about 11:45 to examine her and talk with us about surgery. He examined her and said her spleen shrunk just slightly just by his finger measurements. Yes, he can do that, not always accurate, but his best estimation. Thank goodness Nana and Poppy were there to listen because I'm still not sure I have my facts straight. Dr. Monagus indicated that after speaking with her hematologist and discussing her case for the third time with other dr's and surgeon they think removing her spleen is the best option. She was rolled to procedure room at 1:00 and at 1:50 Dr Monagus was sitting next to us showing us the pictures and explaining. They banded one varice and not two as expected. Since she only had one, there was no need to be admitted for the night. She was wide awake in recovery which has not been the case the last two times so that made me smile! She was very upset that she cannot eat though, so that makes for a very cranky 9 year old, but hey with good comes the not so good. She was so alert we were able to deliver her donated Girl Scout cookies to the nurses and dr.'s! My goodness did we make their day! We delivered to Dr. Monagus last and he hugged us both tight and said "thank you so much!" I couldn't ask for a better day. As I drove home the sun was shining in my eyes and I looked to it and said "I love you too Maw Maw". Her birthday is tomorrow and last year I couldn't spend her last birthday with her because we were in the hospital. I think she wanted me to know she was with us today, like everyday, but she wanted to give me a bit of good news as her birthday present! So on that note, I will sleep well tonight. I hope to see my Maw Maw in my dreams and enjoy the laughter of my wonderful husband and beautiful baby girl in the other room. Thank you all so much for your thoughts, prayers and support for our family! Love you all!

Love,
Brandi



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1 year Anniversary of Diagnosis

Rylee March 2011


So today makes one year that we were in Children's getting the news of Rylee's diagnosis'. It has been a very hard, long and stressful year with highs, lows, positives, negatives, smiles, tears, hugs and triumph. She will have her 8th scope on Thursday, March 22 and hopefully the surgeon will talk to us about surgery. I never thought I would ever say that. Danny, Rylee and I are ready to get back to normal. I think we have somewhat forgotten what normal is at this point. I am so proud of her for all she has endured and all that she is still enduring. It is hard to go from being an active child who loves to run and play to a child whose steps are closely watched and monitored. She has not run, played, jumped, kicked a ball with friends in over a year. Though I am scared of the surgery options and the surgery, I have to have faith and believe that God will give me strength. In this year we have learned to not take things for granted, to trust, open our hearts and to not judge anyone. On top of the medical issues we lost our Rocky dog, my MeMe and my Maw Maw all within months of each other. A lot of sadness and heartache, but much needed time close with our Durbin and Collins families, who are a true blessing. God gave me this large crazy, fun loving family for a reason. On the positive, we have a new baby and two weddings to look forward too. Rylee's Uncle Chris and Aunt Amy will give her a beautiful baby girl cousin named Lily and she will be flower girl in her Aunt Ashley's wedding. I truly believe my grandmother's had a pow wow with God when they arrived!

So we will enter the hospital on Thursday anxious, nervous, scared but thankful for the continuous prayers and outpouring of love you have all given us. Please pray for us and especially Rylee.

Love Brandi



Rylee March 2012


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