Rylee's Update for September

We decided to let Rylee have an early birthday this year due to her medical issues. With her spleen being so large the only "safe" play she can have with her friends is in a pool. My Aunt Sandy let us use her beautiful home and pool to host. She was so excited to be able to actually PLAY with her friends. Always makes my heart happy when she smiles.
She has her follow up with Dr. Monagus on October 7. Her blood work for September was ok, except her platelets are already at 50,000. Her next scope is not scheduled until November 21. This is a big scope for her! She started her new medicine that the Endocrinologist decided to put her on last week she will have a shot every 4 weeks in her thigh . Danny will not be here for the next shot, so wish me luck. Daddy is the needle comforter!! Well, really he is the "safe zone" PERIOD! Please continue praying for her to heal and continued strength for my family.

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Endocrinologist results

I received a telephone call from Dr. Vargas, the Endocrinologist, on Friday regarding Rylee's stimulation test results. He said that the test was normal, which we are very thankful for, but that she will need to be started on medication due to her "other" areas of development. They are attributing this to her stroke. Hopefully this will help with the"teenage" attitude, etc. He will see her again in November for follow up.

She is looking forward to her birthday party Saturday. So very thankful to have such an amazing, supportive family to help! Since she cannot do activity with her friends besides swim, we want to say a very special thank you to Aunt Sandy for letting us use her pool and house!!! With everything my baby is dealing with she deserves to have a great time and party! She is still smiling, but is really tired of her "conditions"! She is definitly our little "Soul Surfer"!

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!

Bay St. Louis/Andrus Mac is 2

We went to the Cantrelle family Coast house this past weekend to spend time with family, celebrate Andrus' birthday and have a mini vacation. We arrived Friday afternoon and Uncle Matt took Rylee, Danny, Shannon and Andrus on a long boat ride in the Bay. Rylee was beyond excited and Danny and I knew we had to be very cautious with what she did and how she did it with her spleen and low platelets. I tried to remind myself that she is only 8 and just wants to be a kid!!! She fished, swam and jumped into the bay, played on the waterslide and had a BLAST! We had a birthday cake for Danny and Uncle Matt with Andrus and family Friday night. She jumped up Saturday morning at 7:30 to get on the boat and go fishing with Uncle Matt and Danny. The birthday party started at 11:00 and some rain moved in so we all moved into the house but that didn't stop the fun! Between breaks we jumped in the bay and laughed and talked and enjoyed our surroundings.


She loved it when Celia showed up and they were like two peas in a pod together. They stayed up night fishing until about 1:00. She even enjoyed her Uncle C.C.'s girlfriend Amy. She has advised us that she still has to adjust to her, but all in all she gives her two thumbs up. She is very possessive of her godfather and thinks the world of him! Sunday was terrific as well. We watched the soccer game, jumped into the bay like the kids, ate crabs and shrimp and Shannon and I had the beat tear jerking laughs ever. It was bittersweet to leave! Can't wait to do it again. Rylee did get a few bruises due to her very low platelets, but it was worth it just to see her smile and be a kid!!!




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GI follow up appt

Met with Dr. Monagus today so he could check Rylee since her last scope on June 9th. We were greeted by a student Dr. Who just so loved Rylee's Team Jacob shirt!!! She went over how Rylee has been doing and her blood work and then we waited for good ole Dr. Monagus. Rylee loves him! He was not very pleased with her platelet level. It is at 51,000 and has dropped from 82,000 since June 9. He gets worrisome when it starts getting back into the 40,000 range. He is going to pass along the lab work to the hematologist Dr. Morales and see if another lab needs to be done before her next scope on August 4. Normally we do labs upon admit the night before. Danny and I both think he will discuss proceeding with the IVIG procedure that was originally scheduled May 30 but never went forward. I talked to him about surgery and what we are doing to get that rolling and he is looking into it for us as well. We also discussed her stimulation testing and her weight and height. My little girl is eating too many cookies at Nana's and with Daddy. I'm sure this won't go over very well. Since she can not be very active with her spleen it makes it difficult for her to exercise her cookies off. He said he spleen shifted up again so it is more underneath her rib cage which is great but it is still very very large.

On another note we are looking so forward to spending time with our family at her nanan and uncle cam's coast house on the bay in Bay St. Louis. We will celebrate Andrus Mac's(my peanut) birthday, swim, lounge, boat and fish all weekend. We so need this getaway and I'm thankful to Shannon and Cam for letting us come stay with them. Nothing betterhanging with my family on the water!!! Dr. Monagus told us to have fun, be careful and watch out for fish hooks while fishing! Danny bought her a wet suit, life jacket, fishing hat and she is determined to have Uncle Matt take her to get a pole! Can't wait til Friday!
My baby deserves some fun!!!

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