October 7th Rylee had her GI follow up with Dr. Monagus. He ordered blood work and believe it or not she went in the room by herself and gave the blood! So proud of her for being so brave! Her platelets remain at 50 and Dr. Monagus would like her to lay off of the snacks and try to exercise more. Danny and I both are slightly confused as to how to approach this due to her spleen. He said walking would help. He is also going to look into a spleen guard for her to help let her be more active at home and at school. He has decided to have her undergo the MRA before her scope on November 21st. This is just like an MRI, but it will show her vein function in the portal vein and how things are flowing. This will also shed some light as to if she will need Rex Shunt surgery. He will confer with a specialist at Tulane to look at the results and decide on the surgery and spleen surgery. I will of course know more on that after the results come in. Her endocrinologist is going to put her on a 3 month dose of the new medication, so that will help with the amount of injections she receives. I need to schedule a follow up with him around the time of her scope just to see how she is reacting and check her symptoms. Rylee is still smiling and making us smile. Nothing matters but my child to be happy!!!!
I have no idea what we would do without Nana and Poppy. From her stoke to the new medical issues, no matter what we need, what Rylee needs, anytime of day or night they are there!!!! My mom goes to lunch recess everyday so that Rylee can go outside, they bring her to dr appts, are at the hospital for every scope and are our support and her biggest fan! They are my strength when Danny is at work, my rescue when I feel like I'm going to fall to pieces and all through losing both of their mothers within two months of each other. They are AMAZING parents and grandparents! I love you mom and dad more than you know!
As always keep praying! November scope is a big one for her!
Brandi
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