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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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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Rylee's stimulation test

Rylee had her stimulation test yesterday to check how her brain is producing hormone levels. They put numbing cream on her veins to help with the IV pain and it seemed to help with the pain but not the anxiety of it. Danny once again had no sleep from coming straight off of duty, but he was able to take her mind off of it by making shapes in the numbing cream on her opposite arm while nurse Lori inserted the IV. They gave her a shot of medicine to stimulate her hormones. She had blood drawn every half hour to check the levels of FSH and LH her brain was producing. If her brain is producing way too much then she is progressing rather quickly for her age and she will have to receive medication to stop it. We are pretty prepared for the outcome of the tests, but are still rather nervous. We left the hospital around 12:30. They told us that results will not be in for about 3 weeks and that will determine what steps need to be taken next and how quickly the steps need to be taken. This could be a culprit of her stroke, something other than stroke, or it could just be the normal which seems to be seen a lot in girls and boys in this generation. They do not attribute this to milk, chicken, etc which I know a lot of people are thinking. They do not know a cause, but Danny is blaming it on Madonna! Lol that made the Dr.'s crack up!!!! She has her follow up GI appt tomorrow so we hope or good blood results!!!!

Everyone has been asking about my sweet Maw Maw. She is home, comfortable and surrounded by great care, family and all the seasons of Everybody Loves Raymond. She was very happy to see all three of us yesterday and wanted us to stay longer but she wanted me to go home and take care of Rylee and Danny. I will be visiting her again tomorrow. I'm soaking up the smiles and the I love you's!
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Dear God....

Dear God....Our lives have been a very windy roller coaster ride since the beginning of this year. Rylee's medical conditions were diagnosed on March 20th and we are still undergoing testing and have many more paths to take, I lost my maternal grandmother to Alzheimer's on May 15th and my beloved old Rocky dog on March 13. Now I am faced with the news of my Maw Maw's(paternal grandmother) liver cancer diagnosis. She decided not to treat it aggressively and the doctors are predicting 4-5 month but it is progressing fast. My heart is very heavy and I am determined to focus on the time I left with her by making more memories, talking about the old ones and just plain soaking up her love. My Maw Maw has been my security blanket, my care taker, my personal chef, my bo bo kisser and all the wonderful things a grandmother is when you are younger. As I got older she became my confidant, my shoulder to cry on, my strength and most importantly my friend. I still cry for my maw maw when things go wrong or bad for me. I remember when Rylee was first diagnosed I told my Aunt Peggy "I sure do wish I could crawl up my Maw Maw's lap and she would make it better like she used too!" I will journal the days with my Maw Maw and the times Rylee and I spend with her for myself and for the future. It is times like these that you realize what you need in your life and what you can do without, who you choose to surround yourself with to give you strength and support when you are weak. You have to choose to focus on the things and people that are important, make every minute count, and block out the things that aren't worth it. My family is the answer to all of those. My daddy is the most amazing man and has been handling so much with his strong faith and his devotion to his family. I thank God for the man he chose to be my father and the people I call Aunts, Uncles and cousins and especially my Maw Maw. Not everyone is blessed to have a family like mine, so I count my blessings, journal to vent and pray to find comfort. That is the first memory of my childhood as a Collins....learning how to pray!





On another note we will be going to Childrens tomorrow for Rylee's stimulation test to check her hormones. She will be hooked up to an IV for approximately 4 hours and have blood drawn continuously. I report findings, but we expect to have to undergo an MRI before any diagnosis is made. As always, prayers for my baby!





God please give us strength, carry us through these troubled times and wipe away our tears to find comfort and peace knowing you will hear us... Amen.


"when you go through deep waters, I will be with you..." Isaiah 43:2.
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Father's Day

Two Peas in a Pod!!!!






We had a great Father's Day.Rylee made Danny breakfast in bed complete with the newspaper and presents. She was so excited to take care of her Daddy. Danny and Rylee went and visited Poppa who had a cold. Rylee came home and said "poor poppa is sick....I love him but I hope I don't get it!". Poor Poppa. I hope he had a great day despite his cold! When they returned home we went to my parents house. Dad was doing what he loves most drinking a beer, watching the car race and lighting his BBQ pit! We all sat outside had some great laughs and went swimming. Nothing makes me happier than to be with the men who are carrying me through these rough times. They are truly amazing and Rylee smiles whenever she is with them.






Uncle CC came and joined in the fun with us and my dad was so happy to have all of us together at one time... which is so difficult!!!!





It was nice to just see pure joy in the faces of the two most important men in my life and the princess they make so happy. We ended the day with Rylee giving us an outdoor concert at home!!!! She put on a show for her daddy and I even joined in for a few songs.





We had a great time and lots of fun and for one day we were able to let go of our fears, worry and just enjoy eachother!






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Ultrasound

Rylee had her Ultrasound today which was ordered by her endocrinologist Dr. Vargas. We arrived at 1:30 as ordered and I gave her lots of tea to fill that bladder for the ultrasound at 2:00. Low and behold her bladder still was not full enough. We had to wait an extra 30 minutes and drink more to fill it up. Around 2:45 the ultrasound was underway. Her bladder still was not completely full, but the radiologist approved the images taken. All of this makes me extremely nervous, but I just pray through it and as seen below...Rylee sleeps through it. When all was done she finally had to relieve her bladder. Go figure. We do not have any results as of yet. She has already had 3 out of the 5 tests that need to be done. As always keep those prayers coming for her!!! She is dealing with so much already!





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4th EGD

June 9, 2011

We were admitted June 8th at 5:30 p.m. for Rylee's 4th EGD procedure. Her blood labs were drawn and we bowled on the Wii, played in the playroom and took walks while we waited for her counts to come back. It takes an hour for blood results to come back and then the IV is started, which is her absolute worst favorite part of this process. Her platelet count dropped slightly from May 30th from 75,000 to 65,000. Her IV was started around 9:00 p.m. and platelet transfusion got under way. She only received one unit of platelets this time as opposed to the normal 2 units. Labs were drawn again around 5:00 a.m. to make sure her level was high enough to procedure with scope. She went into the scope at 8:30 a.m. with her platelet count at 85,000. Even though this was the 4th go round and Danny and I are well aware of the routine, it is never easy to watch my baby have to go through all of this. I cry every time but try to make the most of it. My parents arrived around 7:30 a.m. and Rylee was so very excited to see them. We walked her down to procedure room at 8:45 and left her at 9:00 a.m. for the scope to begin. By 10:00 a.m Dr. Monagus came out to give us the results. The top of her esophagus looks great. She had to have two varices banded at the bottom (by her stomach). She had some visual signs of infection in her esophagus which could have been from the virus she had a few weeks ago, but they are not concerned about bleeding and will heal. So from GI stand point, she has done very well, exceeded there expectations and her body has been very resilient to these varices. So what started with varices lining her esophagus from top to bottom, the 4th scope is showing great improvement with the top looking like brand new and only two varices at the bottom. She will need to have another scope, but the best news is that it won't take place until August!!! That is 2 months!!!! We started with every 2 to 3 weeks! She had a very loose tooth before the procedure and Dr. Monagus called in the dentist at Children's to pull her tooth while we were there so that in case it was to bleed a lot we were in the best place for that to happen. If you ask me, she looks quite adorable with a missing front tooth. Dr. Monagus came out with her tooth for us and the wonderful Dr. pulled out money to give us to put under her pillow. I teared up and told him he better put his money away because he has done quite enough for my daughter the last few months and will continue to do so. When she woke up she kept feeling with her tongue and had this look on her face like she knew something was missing. She woke up a short while later to ask where Nana and Poppy were and asked about her tooth and then she went back to sleep for a while. They were getting a little concerned about her blood pressure because it was really low. After a while of waking up and moving around it was back to normal.
Dr. Monagus gave us the okay to take her to the dentist for her check up and cleaning since we have not been able to do so with the risk of bleeding and platelet counts. She is going this morning at 11:00 a.m. Thanks to my Aunt Rosana and Uncle Dennis for fitting her in immediately. Uncle Dennis is so busy and is booked up, and this means for him to do this for us!!! Dr. Morales, her hematologist, allowed us to leave last night because her platelets are better. We left the hospital late yesterday evening and arrived home last night. We are all very exhausted but very glad to be in our own beds!

On another note though she does have some other issues arising. We are seeing an endocrinologist now due to some female issues where the stroke is a possible culprit! Please pray that the stroke is all that has caused this and nothing else!!!!! I am in the process of scheduling pelvic ultrasound and testing to take place in the next two weeks. Dr. Vargas seems to be wonderful and Rylee took to him very well. She has not been interacting with the doctors very well now lately due to what she has been going through, but he was wonderful with her and she actually engaged in conversation with him. Besides Dr. Monagus, he might be her new favorite! We are in the process of ordering records, gathering information and setting up consults for surgery. We are getting a second opinion and looking at options, but she will need a surgery. When I receive more information on this I will share.

Everyone has been asking not only about Rylee but about Danny and I. We are doing as best as can be expected. We are trying to maintain our normal lives with work, home, bills, etc. like everyone else, just with added stress! Danny is running around like a crazy person back and forth from work, home, hospital and working on no sleep at times. I am trying to deal with all the emotions of having a sick child with so many different medical issues, the fears, the nerves, the worry, her mental state and all the other motherly emotions. I just can not tell you how lucky Rylee and I are to have Danny. He is our rock. He will drive straight from work off shift to the hospital just to be there to hold her hand while she has blood work drawn or for a procedure. He has been dealing with my crying, my nervousness, my worries and fears and he is handling all of this the way he handles everything.......WONDERFUL! He is there for every procedure, every prick, stick, meltdown, breakdown and all with trying to deal with his own emotions. He puts us first and himself last. What would I do without my wonderful husband who is the most amazing father. We are trying our hardest to stay focused and grounded and keep things stable for her. She can not do much due to her enlarged spleen so we are trying to focus on the things that she can do. Which is swim, swim, swim. Thanks to my wonderful Aunt Sandy, she can go swim whenever she wants at her house, which she LOVES!!! We are going camping July 4th weekend (which we are surprising her) and we are going to her Nanan and Uncle Cam's Coast house in Bay St. Louis July 15th weekend to celebrate her little cousin Andrus' birthday. We are going to try and fit in some little fun things here and there and just enjoy fun time!

In the meantime, please continue to pray for her, because that is what she needs the most!!! Love to you all!

Monday, May 30...IVIG

We were scheduled for IVIG procedure at 9:30 am. We had our normal blood labs drawn and had an ultrasound to check the actual size of her spleen since everyone has been saying it shrunk. To our surprise her spleen has not shrunk in size at all since her diagnosis. It is the same exact large size. Danny and I were very shocked and so were the doctors. It appears that her spleen has just shifted so to speak. We are definitely looking at surgery in the next month. Her platelet count did go up to the highest it has been on its own since February. It was at 75 on Monday and the week before it was at 48 (which is her normal). After waiting for 7 hours for a room to begin the IVIG with an anxious child and a husband working on no sleep for 24 hours we opted to reschedule the procedure since it was not mandatory at ths point in time. On Wednesday we received a call from my mom stating that Rylee had some blood in a bowel movement, which is something we have to be very cautious about due to a varice bleeding. We went to the hospital and had her checked out and a sample was taken. The sample did show evidence of blood but her blood work (HgB) level was not showing an internal bleed. We monitored her at home and took a sample the very next day. Luckily her sample did not show any evidence of blood but we are on guard and are having to invade her privacy to check. She is being very good about all of this and taking it in stride right now. Her next scope is set for this upcoming Thursday, June 9. We will also be talking to the doctors in more depth about her spleen and the surgery. We would like to have it done before school but we will just have to see about scheduling, recoup time, etc. Of course I am very very nervous about this risky surgery and I am not really discussing it in front of Rylee to protect her from stressing. I will post about her scope next week. We will be admitted on Wednesday, June 8th for her platelet transfusion and scope at 8:30 am Thursday morning. I just want to say thanks to my parents for dealing with sample taking and running around like crazy people to help me and Danny so that we can still work and get things done around our house to keep our lives as normal as possible. They are absolutely wonderful and I could not ask for more devoted parents/grandparents. I love them so much!!!

3rd EGD

May 3, 2011

We were admitted to the hospital on Monday evening following our GI appointment and lab work. We stayed on the 5th floor this time due to overcrowding on the Hematology floor (4th floor). The nurses were slightly confused as to what, who and when. Rylee was in a GREAT mood Monday night. She walked across the parking lot to watch girls practice softball and even retrieved a few balls for them. A little while later I spotted her and Danny walking further away from the hospital grounds and followed them only to notice that he was taking her to the Audubon Tennis Court. The court was of course locked, so he searched the grounds for tennis balls and we all played ball for a while. We tried to keep her away from the room as much as possible just to help her anxiety and anticipation. It seemed to help a lot considering the laughter and mood she was exhibiting. That soon came to end when the nurses had an extremely hard time getting her IV in her arm. They tried several times, it was the 4th try that seemed to work, but they could not draw blood. Lab had to come draw blood and I thought she might jump out the bed and run, but Leroy from the lab was WONDERFUL. He talked to her, made her laugh and he even put the tennis balls in her shirt (the price he had to pay for sticking her again) and did a jig! Boy did she laugh and so did Danny and I. She finally went to sleep at around midnight and was given platelets at 5:00 a.m. Danny and I questioned the nurses a lot due to the confusion when we were admitted to the floor and our gut feeling was confirmed at 8:00 a.m. The day shift nurse informed us that the night shift nurse was suppose to give her 2 units of platelets and only gave her 1. That is what Danny and I kept questioning but were informed she was receiving 2 units. I thought Danny's head was going to explode when the day shift nurse told him! It delayed her scope only by half hour but she did need to receive the rest of her platelets during the procedure and have another IV put in her other hand. Poor thing had two IV's and couldn't move either arm. She walked her down to the procedure room at 10:00 and at 10:25 Drs. Monagus and Noel came to talk to us about the findings. They did not have to band any varices this time!!! They did see a small varices but it was way too small to band. She will have to have another scope in 5 weeks. They did find a small ulcer and did a biopsy to see if antibiotic treatment is necessary. She will be on Zantac now for the ulcer but the good news is that she can now swallow pills. Which she seems to enjoy much better than liquid! Her esophagus looks like a normal esophagus at this point as well. Her spleen has not gone down since the last scope which is not great news. If it does not go down, we are definitely looking at surgery in the summer. She needs to have IVIG procedure before her next scope as well. Her hematologist seems to think that she has some antibodies in her blood that are eating up all of her platelets. This will be done in the next few weeks before the next scope. It is a two day procedure where she will be hooked up to an IV for 8 hours each day. We will have to spend one night in the hospital and then go home after the second 8 hour treatment. Hopefully this works to raise her platelet level.

Rylee is trying her hardest to hold up. She is starting to have a really hard time dealing with all of her medical issues, being in the hospital, school work, being away from her friends, etc. She does not understand why she has to go through all of these things. She hasn't complained and just goes with the flow, but Danny and I have noticed she is not herself. Danny and I are trying to keep things together the best we can for her and dealing with this ourselves. She is struggling but still smiling! The doctors said that this is all way too much for an 8 year old to handle but she is one of the most courageous, brave and strong little girls they have ever treated! I thought I was suppose to teach my child about life, but she is definitely teaching me more than she will ever know! We could not be anymore proud of her! Just keep praying for her!

Dr. Morales Appointment

April 28, 2011

Rylee had her hematology appointment today at 1:30 p.m. with Dr. Morales. Danny took her and had her blood work drawn before the appointment to check her levels and had additional blood work drawn for her scope procedure on May 3rd. Her platelets are still ranging at 47,000-48,000. Dr. Morales wants to do a IVIG on her sometime after this scope and before the next scope. She will have to be hospitalized for the treatment. She will be hooked up to an IV for 8 hours a day for two days. Once she has the treatment she can go home. He seems to think that she has some antibodies floating around that are eating up all of her platelets. Unfortunately, it seems this is the only way to find out and treat the issue. Her spleen has gone down which is the good news but her platelets are still low.

Rylee is trying her hardest to handle all of this well. She is starting to become very irritated with her medical problems. She does not quite understand why she must continue to go to the hospital and see the doctors when she does not feel bad. This is way too much for an 8 year old to handle when all she wants to do is run and play. We are trying to find ways to help her cope. I am trying to find fun things for her to do in her condition (enlarged spleen). All she wants to do is be normal and not have me harping over the things she can not do. I am really praying that we get some good news after her next scope next week.

Abadie Family Easter at Abita Campground

April 23, 2011

We spent the day celebrating Easter with the Abadie family. We had a great time at the campground with Granny and Poppa. Fishing, swimming, weenie roast and smores! Rylee loves the campground atmosphere and so does her Daddy. She caught a fish, saw a momma duck hiding eggs, watched the Geese and their babies and was scared of the alligator we spotted near the fishing lake. Needless to say it was adventurous but relaxing and FUN!!!

One thing we love about spending time with Granny and Poppa is there is always something spontaneous that pops up and makes us laugh! We sit around the motorhome, relax, talk, watch the girls fish and fight (LOL) and just enjoy! Watching Poppa and his two girls makes my heart smile.....after having two boys, it is wonderful to see his granddaughters melt when they see him! Now Granny on the other hand has her hands full with two girls....they are the spitting image of their dads......yep.....she is a saint! She wouldn't trade it for one minute!

I feel lots of camping for this family in the near future....wonder if the bunny will bring me a camper!

Collins Good Friday Boil

April 22, 2011

This is my favorite day of the year! Family tradition, old and new! My uncles have kept my grandfathers boiling recipe going for 30 years and with each new birth and wedding the sacks may grow, but the boiling continues. We normally have a space walk for the youngest Collins cousins, but this year my aunts and uncles were nice enough to 86 it and opted for crafts due to Rylee's condition. We had a great time, young and old!!! We added egg toss to the mix and that was probably if not the greatest new tradition, but the funniest!!!!

For those of you who do not know, I have an ENORMOUS FAMILY! My dad is the oldest with eight brothers and sisters. I am the oldest grandchild of 20 and Rylee is the one and only great grandchild. I grew up with my aunts and uncles and we started this tradition when I was very young. I remember going crabbing with my aunts and uncles in the early morning hours just to go back to my grandparents and boil and hide eggs. I was the only grandchild until my brother came along when I was 5 1/2. Needless to say I received a lot of attention and love. Not to say that I don't now, but I share a lot of memories with my aunts, uncles and grandparents that my little cousins did not have the privilege of sharing. My Paw Paw Harry passed soon after my brother was born, so I was the only grandchild that was lucky enough to know him. I have one picture of him and I together that I cherish and ironically enough there is a boiling pot and crab nets in the background of that picture. I loved to sit in his lap and have fond memories of his Dixie beer, Church on Sunday, chicken cooking in the kitchen, family dinners and most of all the SAINTS!! I am definitely a Maw Maw's girl and love that my youngest cousins have her living next door so that they can make some wonderful memories of their own with her! Boy is she special! My aunts and uncles were raised in strong catholic faith, tradition, giving and service. Each and every one of them have instilled that in all of us and I am very blessed to be a part of this family.... I am proud to be a Collins!!!

EGD

April 13, 2011 Rylee scope procedure was at 1:45 p.m. Dr. Noel informed us that she would probably have to have bands. He said that it is very uncommon on a 2nd scope to not have bands. The procedure took about 45 minutes. They banded only 3 varices and her spleen has shrunk!!! Yes, great news. He said that they really did not even have to band but decided to do so because one of the varices was a little "suspicious" to bleed if they waited. Rylee did not handle the prep for the procedure well this time. She knew what to expect and she is very tired of it all already. She fought me and the nurses on everything!!! Of course things got better once her daddy arrived! We stayed in ICU for the night and she has done so well that they are releasing us straight from here today. Her next scope will be in 3 weeks with her follow up with GI and Hematologist in two weeks. Keep the prayers coming!!!

EGD Procedure Prep

April 12, 2011

Started off the morning by sending Rylee off to school. I left work half day in order to pick her up and pack for our prep at the hospital for her EGD scope tomorrow afternoon. She came home with the sweetest notes from her friend Victoria Crouchet and some friends. My child has the sweetest, most considerate friends and their parents amazingly surpass their kids! I have to mention that since the day we knew some "things" were happening with Rylee...the teachers, the administration, the support staff, students, parents......they all have been praying, supporting and have just been amazing. They want her to come back to school full time and are willing to do whatever it takes to get her back there! Covington Elementary is the best school for a reason!!!

We arrived at Children's a little after 8:00 p.m. to be admitted. We did not get to her room until 9:00 p.m. We are still waiting for the resident Dr. to check her out, her IV, her labs and her platelet transfusions to begin. I let her eat a Rice Krispie Treat just now due to her no eating after midnight rule. She is trying her hardest to keep her eyes open, but is slowly drifting. This is not going to be fun when it is time to put in the IV and she is fast asleep! The nerves are starting to kick in for me slightly. Any time your child has to be put under for a procedure it is scary and in her case there are risks for bleeding on top of low platelets. Wondering how many bands will be needed tomorrow and hoping that they are not worse.

I will post an update sometime tomorrow when I have time. It is slightly cramped in ICU room, so depending on the amount of room and outlets I have, I may not be able to post from my laptop.

I know you all will be praying for her! :)

Sunday Funday

April 10, 2011

We had a great family day! Rylee decided to paint her toes for the hospital this week and then immediately after......she played quarterback with her dad. No touch family football for now....she can only quarterback.

We decided to go check out Bogue Chitto Park in Franklinton, La. It is very close to the house. It is very nice with a splash park, play equipment, fishing/picnic areas, kayacking, canoeing, tubing, cabins, RV campsites and a BEACH!!! We walked the beach completely unprepared, but Rylee and Danny got their toes wet and talked about all the things we will do after her next procedure on Wednesday.

She is starting to get a little frustrated with not being able to do her normal activities, so we are looking for things that she can do that are still fun and something she would enjoy.

Looks like we will be spending some time fishing and swimming in the upcoming future!

I also found a wonderful Portal Vein Hypertension group on Facebook. It is nice to find other moms, grandmothers, families that are dealing with the same issues. They have provided more information and insight into Rylee's new diagnosis. I will definitely be taking their advise and researching.

hi, it's me!!!

this is rylee. i am feeling good thank you for the prayers. love you all love rylee rae.

Mommy has to miss the Field Trip...BOOOO

April 7, 2011

Today was the Zoo field trip. The field trip I have waited for and I had to miss it! BOOOOOO

Due to the time away from work in the last few weeks, I figured I should let Nana attend and make up some work. It was a very hard decision for me because who likes to miss out on fun with their child especially with all that Rylee is enduring lately.

We have passed the Zoo a gazillion times in the past two months and you can actually see the Giraffes feeding on leaves from the trees from the 6th floor playroom of the hospital. I must thank Dr. Firestone for that tidbit of information.

My best friend Ashley was nice enough to take a bunch of pictures for me and they turned out great. Rylee got to pet an elephant, watch a Giraffe potty while walking (the highlight of her day...GEEZ) and a bear snuggled in a tree.

The best part of her day was sharing it all with her best friends laughing, smiling and hugging, which is what she has missed so much the last few weeks.

Rylee Goes Back to School

April 6, 2011

Today was Rylee's first day back to school. We have opted to do only half days at this point in time especially since her next scope procedure is next week.

She was so very excited to return to school and you would have thought that my child was a movie star!! Lots of kids, teachers, administrators welcoming her back with sheer excitement and hugs! I was so happy for her and she had the biggest smile on her face all day!

Thank you to all the parents, teachers, administrators at Covington Elementary School for your pure love, concern and support for Rylee and our family!

Follow Up Visits

Hematology and GI Follow Ups April 5, 2011

Today is the day we find out the bone marrow biopsy results and schedule Rylee's next EDG with Dr. Noel. It was a very hectic day that was suppose to start with our first appointment at 11:45 but turned into our first appointment at 2:15....yes.......TORCHER for the nerves! Hematologist, Dr. Morales, said that her bone marrow biopsy was fine. He will monitor her platelets and he may want to look in to immune issues later, but we need to get through the GI issues first. He said that this was a big puzzle...but the more pieces we put together...the more it made sense and each piece fit. The blood clot is from her tube/cord in NICU after her stroke. It is an unfortunate side effect. Her spleen enlarged from this because the blood is backing up in there from her liver and the damage the clot caused in her portal vein. The esophagal varices are also putting pressure on her spleen and anything viral that she has had is adding to enlargement as well. Her low platelets are due not only to the clot damage but the spleen is what holds platelets and her spleen is so big that it is swallowing her platelets. WOW!!! GI doctors scheduled her next EDG scope for Wednesday, April 13, 2011 at 12:30 p.m. We will be admitted to Dr. Morales (Hematologist) floor for the platelet transfusions and blood labs. They will band more varices if need be and then we will have to do again. They are going to have more surgeons come and talk to us about the Rex Shunt surgery they want to perform on her during the summer. Danny and I are researching, as is my uncle her pediatrician. We are very comfortable with her GI team at Children's. They want to get Rylee back to her normal, active, spunky self and they were very disappointed that she hadn't returned to school before today!!! :)

I have attached a picture so that maybe it will give a better mental picture of what we are looking at. The dark lines represent the damage to her portal vein. They want to take a vein from her neck and bypass from there to liver. This is the Rex Shunt surgery.

So off to talk to teachers/administration we will go!!! So basically the one "thing" that was placed in my child to save her is the one "thing" that has come back to harm her! Ironic how life works isn't it......

THE DAY OUR WORLD CHANGED....AGAIN

MARCH 20, 2011

Yes, I am back tracking a bit. On Sunday, March 20, 2011, what was suppose to be a fun day with my huge family boiling crawfish, laughing and screaming at kids, turned into a very terrifying experience. Rylee was admitted to Children's Hospital with a tremendously enlarged spleen, low platelet count and strep throat. Now most of you know that we were dealing with low platelets for approximately a month before being admitted. The doctors took enormous amounts of blood to test for virals which could contribute to the enlargement of her spleen, as well as performing CT scan, Chest X-Ray and Ultrasound.

On the morning of March 22, 2011, we were told that they found evidence of a clot in the portal vein of her liver with damage to the veins (varices) in her esophagus. All of the doctors did ask several questions about her stay in NICU and if she had tube/cord in her "belly". Of course since her birth is somewhat of a blur to me due to the stroke, Danny replied right away that she indeed did have a cord in her belly. The doctors were beginning to put the puzzle together day by day. Gastrointestinal doctors were very adamant about performing a EDG (scope) on her immediately to check for possible bleeding in her esophagus, etc. due to the varices. They would need to check her liver counts and urine. Somehow it seems that the although she did have a clot in the main vein between her liver and her spleen, her body somehow found a way to go around that clot and keep a flow to her liver. Danny and I realized that we were dealing with something more serious than what we expected and as I started to have panic attacks, he stayed strong and focused. With so many things being thrown in our direction and still no definitive answers for what is happening to our child, it became a guessing game and if the puzzles pieces would ever fit together or were there more to add? Does this all stem from her stroke in utero or is this a new develepment?

On March 24, 2011 our 10 year wedding anniversary, the doctors received most of the viral labs back and they were negative. They decided to let us go home and return for a bone marrow biopsy to rule out any other factors and to perform her first EDG to repair some of the varices by banding. We returned home, but were very fearful of what was coming......bone marrow biopsy and Rylee's first EDG procedure. We left the hospital worrisome, or at least I did, but we also left thankful that this was found. We do not know how long ago the clot happened. It could have happened when she was 3,4,5,6,7. We are lucky her veins decided to re route around the clot to keep her liver functioning. There seems to be a reason that we were sent for blood work in February for one minor thing that at the time seemed huge. Mommies instinct is NEVER EVER EVER wrong and this time Danny can not deny that!!!! :)

On March 27, 2011 we were admitted to the hematology floor where blood labs were drawn and Rylee received her first platelet transfusion. Her platelets need to be over 100,000 in order to undergo the EDG. Rylee's platelets have been ranging from 36,000 to 62,000. A normal person has a platelet count of 150,000-300,000.

On March 28, 2011 Rylee underwent her first EDG. I was a mess. It is very scary for me to trust these doctors with my most precious gift. I was scared for her, scared of the procedure and just plain out worried. She had the bone marrow biopsy first then she was flipped over and they did the EDG. They did find varices, that were in fact worse than what they thought. They banded them and we were told this would be done every few weeks until we could get the varices under control. We were also told that since her spleen is the largest they have seen at Children's Hospital, it is more than definite that she will have to have surgery. We stayed the night in PICU then were transferred to a regular room before we were released on March 30, 2011. We were so overwhelmed by the outpour of prayers, love and concern for Rylee and for us! The prayers are keeping us going!

Rylee has been so cooperative, very patient, compliant and of course spunky. She had me laughing in the PICU so much that I think they were ready to kick us out. There is something about a 8 year old calling the nurses station herself saying "I really gotta pee in here bad!!!" They came after that call!

These were the days our world changed......again......first her birth and now this!