Pediatric stroke awareness

Many people do not know or do not believe that Rylee had a stroke in utero. People look shocked and their response is mainly "only old people have strokes!". Well, NO that is not the case. No one knows why it happens, in my case I do not know when or why or how, but i do know that it is not as uncommon as i thought. 10 years ago I was not aware of Facebook nor did I know there were other parents out there dealing with my same situation. She is one of many children who have suffered a stroke. There are so many different affects from a stroke and each child is different. It all depends on the part of the brain affected among many other things. These children all have one common bond...they are survivors and fighters! Rylee's stay in NICU for her stroke is related to her new medical diagnosis that I have been blogging about. Her "belly cord" caused a clot in her portal vein. We went from the doctors telling us she wouldn't make it to 10 years of accomplishments doing things they never thought she would ever do. Her smile has always made my heart skip a beat and when she does something they never thought she would it makes it that much sweeter. We have been through a lot and Rylee has been through way too much at only 10, but we take each day one day at a time. We hug a lot, kiss a lot, pray a lot and laugh a lot. She is surrounded and supported by the most amazing, crazy and HUGE, family I could have ever asked to be blessed with. We have never treated Rylee any different than any other child and we don't expect her to act any different. But we do know there are some things she cannot control and with each day comes a new one. The stroke does not define her, it is just something that happened. I am the proud parent of a beautiful, brave stroke survivor and she is my hero! So show your support for the month of May, wear purple, tell people you know...kids have strokes too and think about Rylee!








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Rylee's 11th Scope

It was another long day for us at the hospital. The last few times we were in and out quickly, but you can never predict what Will happen when you arrive. Our arrival was set for 7:00 am. We woke at 4:00, left at 5:35 and signed in at exactly 7:00 am. We were admitted to short stay and blood labs were drawn, normal checks on blood pressure and temp were taken, all bracelets put on and then the wait began. Platelets were at 44,000 and hemoc a orders said she was not to go into procedure unless platelets were at 75,000. This has not happened since this all began 2 years ago. Everyone was confused and it delayed the procedure time. Once all the kinks were worked out she was taken in at 11:10 am.




She walked into the procedure room with one arm around Dr. Monagus and one around Patches. After about 15 minutes in the waiting area Dr. Monagus was out talking to us about the results with a big smile in his face. Rylee had no varices to be banded. Her esophagus looked like a normal one and he is very pleased. He does not want to see us for 6 months!! Big milestone. Of course we have to watch for all the normal signs and symptoms but all in all GREAT!
I did ask Dr. Monagus about the Rex Shunt surgery regarding Rylee's case. This is the risky surgery that was recommended in the beginning stages of this illness. He stated that he would strongly not recommend this surgery for her because her body is shunting itself and she has improved every scope. Meaning, Rylee had a clot that dissolved, her veins rerouted themselves allowing blood flow to get to her liver (shunting itself) and the main issue is her spleen size and platelets at this point. This will never go away and we do not know what the future will bring. If she has more varices and she has a bleed, then we will be looking at this option possibly. Also, if for some reason she has other issues, by doing this surgery it would compromise future surgeries if needed. He did tell us that her spleen HAS SHRUNK. It moves as she grows, but it has shrunk. Her platelets are a constant issue. Danny and I are still trying to wrap our heads around all of this and process the information, but we take everything day by day and enjoy the good news when we receive it. Today was a good day all in all!




Rylee was in great spirits. She even completed one of the activity worksheets from the hospital that had us saying awe one minute and cracking up the next. She is a trooper and I am so proud of her for being so strong and brave!




Keep praying for continued improvement and healing! Thanks everyone!
Love,
Brandi
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GI follow for January 2013

Rylee had a really busy week the week of January 13. Her Nanan bought her tickets to see Justin Bieber Tuesday night, Wednesday she had her appt with Dr. Monagus and wedding rehearsal for the big wedding which was Last Friday. My little flower girl was excited!




Nothing major to report right now which is a good thing. Dr. Monagus asked her the normal questions about how she feels and if any bleeding has occurred. He felt her belly and indicated that her spleen felt better than it did in October. Which could mean that it moved up more under her ribs. Dr. Monagus has been with Rylee since she was 7 almost 8 and has watched her grow. He made the comment "I can't believe how much my little girl is growing up." He is a wonderful caring, compassionate doctor. Rylee adores him and I think the feeling is mutual.
On another note I have not posted in a while because
We have been busy bees since Christmas. My cousin on my moms side got married January 5 and now my cousin on my dads side got married January 18. Lots of fun for Rylee and I to be a part of each wedding. Both of my cousins were in my wedding and watching them grow into beautiful, strong, loving women is such a blessing! They each hold a special place in my heart!




Melissa, Desi and I before Melissa's wedding.




The ring bearer and flower girl for Ashley's wedding.
Thank you for your continued prayers! We feel them and always appreciate them. Keep them coming especially for her next scope on February 28th
Love,
Brandi
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10th Scope

Arrived at the hospital for 6:30 am
Check in and as you can see in a great mood!




All blood work was done immediately, anesthesia papers and consult done, Dr. Monagus came in to discuss and check her over and platelets ordered. Platelet count was her normal 47,000 which was good considering they haven't been checked in 4 months. Rylee was a little hesitant to enter procedure due to Nana and Poppy not there to kiss her before she went in. They got stuck in Causeway traffic. They administered her platelets and put her IV in in the procedure room. It only took about 20 minutes and Dr. Monagus came to talk to us about his findings. He was very, very pleased. He found one varice forming but not bulging to band and her spleen has moved up again!!!! He seemed more happy about that than anything else! He said that it appears as she is growing it is moving with her growth but also that her veins are not obstructing its movement which is a big plus! We do not have to see him for follow up until January! Yes, FOLLOW UP until January!!!! This is exciting news. We had blood work done for endocrinologist as well, but must wait on those results. We were called to recovery really quick and she was sitting up awake and alert, which has never been the case. Her first words were "where are Nana and Poppy?" The nurse was nice enough to stop and get them to accompany us to the elevator since Rylee was so concerned about seeing them. Big smiles from then on until she got hungry. She is a bear like her godfather when she is hungry! Danny and I are so happy and thankful for these results! What a great early birthday present for our baby girl! Thanks for all the prayers!




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Update

We have had a busy summer! Birth of a brand new angel, trip to Shannon and Cam's coast house in Mississippi, flower girl shopping, camping with Granny and Poppa, swim team, camps, trips with Nana and Poppy and back to school shopping. I would say it was a successful summer! Yesterday was Rylee's follow up with Dr. Monagas. This was
Her post scope follow up before next scope. He did not do blood labs on her this time, because he knew her platelets would be low regardless. We just have to keep watching for signs of them dropping extremely low. He felt her belly and it appears her spleen has shifted a little more under her ribs, which is what we expect with her growing taller. She will have another scope in mid October which I will be scheduling shortly. She has a endocrinology appointment on Monday which she is not happy about, but we must do what needs to be done for her health and well being.




School started Monday and so far she loves her teachers and is very excited about being back. She has a little more freedom as of right now. She is allowed to participate in P.E. and recess without a parent. She just cannot participate in contact sports, but this is a leap forward for her
and for us. Danny and Nana have been attending recess with her for 2 years. Rylee knows if she participates in activities or plays on equipment she is not suppose to, her freedom will be taken away. Hopefully she will not get caught up in the moment because she REALLY enjoys not having them there eyeballing her! It is very hard not worry, but I'm trying to pop holes in the bubble wrap I've had around her for 2 years. We are praying that her school year is a successful, non stressful academic year and hoping she enjoys her last year at CES!
As always, keep those prayers coming for my baby!
Brandi
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9th scope

Woke up at 3:30 am to be at hospital for 6:30 admit. On time but nothing else was. Her platelets were at 52,000 and they started ore platelet meds and we walked her down to procedure room at 10:00 am. She was administered platelets and given her IV at that time as well. Dr. Monagas was out talking with his at 10:40 am. The scope itself went well. No visible varice to band though he did barely see one forming. Her stomach is really, really red though which could be from her portal hypertension. Danny and I have not done anything different diet wise besides exercise and supplements. We have stopped the supplement to see if that is the culprit. He gave her another medicine to take and increased her nexium to 2x per day instead of one. Her hematologist wanted her to have an additional unit of platelets so those were administered. She was not a happy patient and would not allow them to take her labs so we are not sure what her platelet count is right now. She has follow up with her GI in 8 weeks and her 10th scope 8 weeks after that. This is the longest we have gone and I'm thankful for that but it makes me somewhat nervous at the same time. Praying for no bleeds, steady platelet counts and safety!

We are getting really excited about my Godchild/niece making her grand entrance into the world! Amy went to the dr last Friday and he indicated that he thinks sometime in the next two weeks (including this week)!! CAN'T WAIT!!!!! We all guessed a day....I say July 6, Rylee July 8 and Danny said "next week"! We are all super excited and looking forward to the new addition to our family!

As always keep praying for Rylee!

Love,
Brandi


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Wow!

So I received a call from the hematologist at 4:30 Monday afternoon. He told me the IVIG did not work. I know it was a trial and error procedure, but 10 hr transfusion, migraine headaches and hardly any sleep! He told me that sometimes it doesn't work in some cases and since her bad antibodies (ITP) was very, very mild he was not going to try anything else right now. Her platelets have stayed in a range he is comfortable with for over a year. He wants to leave her alone and monitor her for now. She will have to have platelet transfusions for her scopes as always and like the surgeon advised, he would try another procedure if or when she needed a surgery because she will need high platelets. He said her spleen is the main issue with her platelet level. So I decided to ask him his opinion on her spleen
Considering he is the dr that her GI refers to when we ask questions about her spleen. He went over the surgeons recommendation with me and he concurred. He said that if she ever had a bleed from a varice they will need her spleen to do surgery. Since he is in the mild range with her platelets her condition is not altering her life at this point and hopefully they won't in the future. Of course there are many things that can happen and right now leaving her alone and being treated and monitored in case something happens is the best option. She has her scope this Thursday at 8:00 am.
Praying really hard that the scope goes well.

Please say extra prayers for my cousin in law's, Jenny, dad, Mr. Dennis Schaff. He is fighting in ICU and has been since last Wednesday. He is a part of my extended family and we all love him! Jenny needs him, so please while you are praying for my child say an extra prayer for Mr. Dennis!
Love,
Brandi
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