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!!!