School begins!!!

August 8, 2011 we entered CES for another year praying for a better year! Rylee was beyond excited to see her friends and teachers.





At school she can be a kid, just an 8 year old in class with her friends but then the reality of not being able to run and play hit and surprisingly my big girl is handling it well. It is very difficult to tell a child not to run and play at recess and trust that she is listening. We were faced with keep her in or let her go outside with limitations and watchful eyes. We opted for sunshine and eyes! She is well aware of her spleen and understands completely. She has been listening to those doctors and everyone talk when we thought she wasn't paying attention! She has a lot of catching up to do this year learning things she wasn't able to be in class to learn last year and we are pushing her really hard. We are very lucky to have yet another wonderful loving teacher. We know we will have more challenges ahead and we will face them together. Praying really hard that her body heals itself!
She had her first project due for school and it was amazing to watch her do it herself, without moms help. Very hard for me, but amazing at the same time. I have been having a hard time with my maw maw's passing and I guess my maw maw knows that. Rylee had to do a timeline of major events in her life and she chose maw maw passing as her final event. She told me when she was explaining her the event on her timeline that "it makes me sad..but I have to be strong for you mom because you miss her a lot too!" Makes me smile that she was able to bond with her great grandmother. My maw maw loved Rylee so much. It was hard on my grandmother to watch Rylee's conditions at birth and then her latest medical diagnosis. But my maw maw was strong for me! rylee was suppose to end her project with a picture of herself entering second grade, but she didn't have room and didn't want to take my maw maw's event out. I told her it was ok, whatever grade she received was fine because A is for Angel and maw maw gives her a A! I sure do think she is smiling in heaven and I hope she keeps her arms around me and Rylee! I still need her very much!





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Rylee's 5th Scope

Rylee had her 5th scope this morning. We were admitted at 6:30, did the normal labs to check her current platelet level and other blood work and normal vitals. The dr came in and told us her platelets were at 50 so they decided to do platelet transfusion during scope surgery. They took her in at 9:00 am and after transfusion they began scope. Low and behold after sitting in the waiting area for 15-20 minutes Dr. Monagus walked in to talk to us. He said they took a look around from top to bottom like normal. She has one scar from a previous banding but that is not abnormal. She also has one very small varice at the very bottom of her esophagus that they did not band because it is too small. We do not have to have another scope for 3 months!! The better news is that her spleen has moved a significant amount upward more under her rib cage. The shocking news is he said he also noticed that in her stomach he can see veins that appears to be possible evidence that her body is shunting itself. If this is the case and it continues to present itself they would want to perform a test on her to see if it is and if so surgery may not be needed. But...this is all just speculative at the moment so we will just have to pray he is right. As far as her spleen, she would definitely have to have at least a partial removal. Regardless.
So we go back for blood work in one month, follow up in two and scope again in three! Great news for my baby today! I don't know who had the most shocked look on their face, me, my dad or my mom...Danny is always cool as a cucumber!!! None of this is definite and we never know what can happen, but we will run with what we received today and enjoy it for a while. We were discharged and are home. Danny talked Poppy into cooking steaks tonight, so off we go later to nana and Poppy's. As for me, I feel blessed today. I feel my maw maw with me and Rylee and I'm so comforted. We slept at her house last night and rylee and I fell asleep on her couch. Rylee wanted to sit where maw maw used to, so why move her. It was bittersweet. I miss her so much and I think about her constantly, but I know no matter what she is still by my side. Just like always..me and my maw maw!

As always, thanks for continuous prayers and support. Keep them coming!

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Day before Scope Anxiety!!

Rylee's 5th scope surgery is set for tomorrow morning. I normally always get anxiety starting a few days before which progressively gets worse the day before and finally nauseated the day of the scope. Dr. Monagus' nurse, Carrie, called Monday and advised that Dr. Morales (Hematologist) will not be admitting her tonight (like the usual) for scope in the morning. Normally, we are admitted the night before in the late evening to the hematology floor to have her platelets administered for the scope the next morning. We have to be at Children's for 6:30 a.m tomorrow morning. We will go to the procedure floor(2nd floor) and they will administer her platelets before the scope. They initially scheduled the scope for 8:30 a.m. but even Carrie said that it will probably not happen until later in the morning or early afternoon due to having to do lab work, check levels, order platelet, the administering of tylenol and benadryl before platelets and then the actual transfusion. We are going to be in for a long day tomorrow. We have opted to stay at my Maw Maw's house tonight due to the time we need to be at the hospital. Bittersweet for me. I wish she was going to be there physically, but instead I will just have to be comforted knowing she will be with me in spirit. Sure do wish I could get my hugs and hear her voice right now. This is the first surgery that I will have to endure without my maw maw. I would call her immediately before and after. She was so worried about Rylee. On another note, Rylee is really excited because her cousins are right next door. She has been talking about moving in with Uncle Keith and her cousins so that she never has to stop playing with Christian. I told her that Uncle Keith really does not have the room for a 7th child in his house and she said "it's okay, I can sleep with Christian." Those two are something else and I love every minute of it! My maw maw thoroughly enjoyed watching those two play, laugh, and get into mischief! This takes her mind off of the actual reason we are going to spend the night. I will update and post the outcome of her scope tomorrow. As always, keep those prayers coming for my little angel and on a personal note....Maw Maw be with your mini moo and wrap your arms around us tomorrow and always as we travel this long road!