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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Rylee's 7th Scope

Dr. Patches the faithful dog.
Rylee waiting to be admitted for scope.

Rylee had her 7th scope procedure yesterday. They did not have to band any varices yesterday, but she does have two that are popping up and will need to be banded in 4-6 weeks. The next visit we will have to stay over night. Her body is no longer showing signs of healing itself as it was doing in November. The surgeon is consulting with other dr's regarding the best surgery option for Rylee. The news was not great but it was not bad. We just want what is the best option for Rylee. She did not do well with the anesthia yesterday. Very difficult to wake her up and she was extremely agitated. It was a very difficult day yesterday on all of us. My parents are as always an amazing help. She is one very lucky little girl to have the best Nana and Poppy! We are praying for God to lead us in the right direction and to give us continued strength and carry us through all of this. It will make exactly one year since her diagnosis next month. I have scheduled her 8th scope almost to the exact day of her first one. Many people have asked and are wondering what is taking so long regarding surgery. Dr. Monagus told us yesterday that they are delaying because her body was showing signs of improvement and they want to explore every option possible before deciding on the risky surgery. For that we are grateful, but we are hoping to come to a resolution by this summer so that Rylee can get back to being the active, spunky child she was a year ago. As always, thank you for your thoughts and especially the prayers! We need them!



Brandi, Danny and Rylee

Playing Catch Up

It has been a very busy few months on our end. Rylee had her follow up with Dr. Monagus a few weeks ago and her next scope is set for February 7, 2012. He did have her MRI and MRA films in hand, but he is not a surgeon, so he could not give us any information. He is meeting with the surgeon tomorrow regarding Rylee. We should have an answer between now and then. If we do not hear from them, we will discuss at the scope. It seems like the affects from her stroke are rearing its ugly head. Meaning the damage to her left frontal lobe is affecting her performance in school. We will get through it, but it sure is frustrating. It is more frustrating for her than it is for us as the parents and I can only imagine what she is going through herself. I just keep thinking there will be a light at the end of the tunnel somewhere. We are going to try a diet and some supplements to see if we can handle it naturally.

On a much lighter note, she is very excited about becoming a big cousin!!! Maybe not as excited as I am about becoming an AUNTIE!!! I am thrilled that my little brother and the beautiful Amy Seal will be welcoming my niece or nephew into the world in July. We will find out the gender of the baby March 2nd! This might be the first time I don't have a definite feeling about the gender, but either way I am already completely in love with this child!!! This child has given his/her aunt a lot to look forward too and has kept my mind off of all the things going on with Rylee.

She is enjoying cookie sales for her Brownie troop and sold a lot of boxes. She has collected a numerous amount to be donated to Children's Hospital. So proud of her decision.

As always, keep her in your prayers and we thank you!

Brandi

Rylee' 6th scope

Rylee had her 6th scope Thursday, December 8th. It was a tough day for her, us and my parents. We watched her shed plenty of tears, scream "I can't do this anymore" while they tried for 35 minutes to get her IV in her arms. As always her daddy got her through it, much like he got me through labor, and good old Patches the dog, who she has had since she was a year old given to her by her godfather, Uncle Chris. He is one amazing daddy and Patches is one heck of a pup! The procedure was two hours late but only lasted about half hour. She had one varice banded and we have a follow up in January with a scope in February. My wonderful sorority sister Stephanie Seal took care of her once again in recovery. I am so thankful to her for keeping a close eye on my baby. We were allowed to leave, but didn't arrive home until 9:45. Rylee was pretty knocked out this go round! She is scheduled for her MRA and MRI on December 30 to see if maybe her body is healing itself of the portal hypertension. We are anxious and hopeful. That is my Christmas wish!

On another note, I always think about those sweet children at that hospital who cannot leave and have issues that may be more serious than mine. I say constant prayers for them, every visit when I enter, when I walk around, when I leave and when I am able to enter my home from a procedure. Please remember all those sweet babies in your prayers when you pray for my baby! Much love to all of you!

Merry Christmas and be thankful for your blessings!

Love,
Danny, Brandi & Rylee


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October update

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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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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