Checking in and update

It has been a very busy few weeks. Mother's Day, end of school year, graduations, baby shower #1 and baby shower #2 planning! On the medical front, Danny and Rylee went to hematologist in early May. He released her until further notice meaning if her platelets drop extremely low (20k) or if she has to have a surgery. Her GI dr sends all of counts to the hematologist so he is updated on her counts. I'm slightly anxious about her counts right now. We are 3 weeks out until next scope and her platelet level about a month ago was 51. Though this is within her normal range, it seems slightly low to me this far out. She always has platelet transfusion before scope to boost her up, but it may take 2 units instead of one this go round. I know the signs to look for when we are in danger, so I just keep monitoring. She has started more activities since the surgeon went over activities with us. It is slightly difficult for mommy to not be nervous though. She is working out with Danny and I at the YMCA and has been swimming sometimes twice a day since school let out. She loves swimming and that is the BEST activity for her spleen enlargement. Next scope June 21st!!!
As most of you know we are awaiting the arrival of a new baby. My first niece and godchild is due to make her arrival in mid July. Her first baby shower was May 20th. It was beautiful and mommy, daddy and Lily received a lot of love! We had second shower on June 2 with family and friends. Had a fun time!






Mommy looks absolutely beautiful and all is well! I love being a mother, but being a Nanan is a def second! Lily Reese is one loved little girl to have 2 Godmothers. I will share the honor with Amy's wonderful sister Melanie. Rylee has practiced changing diapers, but only #1! She said no way to No. #2! Lol. Tomorrow is the couples shower for Chris and Amy. I can't wait to see family and host a shower for my Lily bug! I'll share pictures from the shower tomorrow!




As always, keep Rylee in your prayers!!! Love, Brandi
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Meeting with Surgeon

 Friday, April 27, 2012

On Thursday, April 26 we went to Children's to meet with Dr. H. Bob Saggi, Liver transplant specialist at Tulane. Dr. Saggi is a very accredited surgeon from Children's Texas. I may have not explained to all I you earlier that in patients with portal hypertension they watch the liver closely and since the portal vein affects the liver, a liver transplant surgeon is always consulted. Dr. Saggi informed us that he has been following Rylee's case with Dr. Monagus. He has studied her CT scans, MRI films and GI chart (including scope surgeries). He talked to Rylee about the activities she likes to do and how she feels and then he began his findings. He drew a picture for us like the one above. He explained to her that when she was a baby, in order to keep her alive,the doctors had to put a cord in her belly and he showed us where the cord was places. The portal vein. Due to that cord, as she got older she developed a blood clot which leads us to where we are now. Yes, tears filled my eyes. I've known that but when Dr. Saggi explained it in his gentle way to my 9 year old, it hit me hard. Dr. Saggi told us that there are very many risk factors in removing Rylee's spleen at this time. If we remove it at her age he has a very great risk of getting sepsis. Not only that but because of the damage to her portal vein from the clot, if he had to go back and perform a shunt it would be very risky because of developing clots due to the spleen being removed already. The spleen filters blood and without it and having to perform a shunt, it would be very dangerous. In turn it could possibly lead to damage to other organs and we would be looking at transplant. Her liver is functioning and is not cirrotic which is the case in most portal hypertension patients. If that wasn't enough, he also told us that performing a shunt on her could work because she is old enough to have it done and the placement is there, but that is absolute last result and it can cause neurological issues. Most of the time a shunt is performed if a esophical varice bleeds internally or if there is any type of gastro bleed. He did say that as she gets older her spleen will grow with her, not shrink, but conform to her body. We asked if there was a possibility that her spleen could regress and shrink and he said "not likely at all". Dr. Saggi praised Dr. Monagus for his care of her GI varices. Now, Dr. Saggi did say that if rylee has a bleed any time in the future he would want to perform surgery because a bleed is very serious. Dr. Monagus, Danny and myself asked many question regarding activity and possibilities of shrinking her spleen as well. We cannot shrink her spleen due to the area of damage on the portal vein and we were all surprised about the activities. He indicated that she could play soccer, ball, dance, etc but if course she is still limited in her activities. When rylee told him she loves to swim his face lit up like a light! That is the best activity for her and she can even go on a waterside as long as it isn't a "crazy" one as he put it. So here we are. As Dr. Monagus said we must "adapt". Danny and I are still trying to cope with the news. We can't decide in our mind if it is good or bad and we can't decide in our hearts either. There is nothing more agonizing than living in constant worry of her spleen, her well being, her emotional state from all of this but at the same time what is best for her is our main concern. She will continue to have scopes but Ty may space apart greatly. She will also have to continue to be monitored by her hematologist for her platelets. As crazy as it sounds, I am finally admitting and realizing that my child has a chronic illness. I have not been able to say those words for over a year now. So here we are. We must try to resume a normal life and I will try and slowly start peeling the bubble wrap away. God show me the way, keep her safe and give me strength!

On another note Grandparents day was at school today.  She has been talking about it and practicing ALL week.  She woke up this morning signing and smiling!  I hope Nana and Poppy loved every minute of it!  They definitely deserve more than just one day at school to honor all that they do.  Rylee adores them and how beautiful it is to watch!!!

First Holy Communion is tomorrow morning!! What a very special day for my baby!  She is so excited to wear her beautiful white dress, shoes and veil, but more excited to see her Nanan, Uncle CC, Aunt Amy, Nana and Poppy!  Hoping Uncle Cam and Andrus can meet us there!

How blessed we are to have the most amazing, supportive, loving and uplifting family all of who go out of there way to put a smile on Rylee's face!  You have no idea how much we love you and how much we appreciate you being such a special part of our lives but most importantly being there for Rylee and all that she is enduring!

Brandi

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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