Summer on the 7th floor!

     This past week has been an absolute whirlwind! As of right now I still can't comprehend everything that has happened! For all of you that don't know, I've been in the hospital this week. In my last post I told you all that I haven't been feeling well...well that hadn't gotten any better. I had actually had a very weird sinus infection that had spread to the lymph nodes in my neck. This was the reason that I was hospitalized. During the week while I was there, the infection had gone into my ears; I really haven't been in so much pain in my life. The thing is...I really don't believe that was the reason I was there. Ironically, my blood counts had been dropping and everything that was happening at home that the doctors never saw...happened at the hospital. The doctors finally experienced the side of me they have never seen...the very sick side. I really count this as a blessing from heavenly father, because now the doctors kind of know that my diseases are continually getting worse and now we can get on the right path to treat my Hemoc and Immunilogical issues. Also,  while I was there, I had my Bone Marrow Biopsy, my IVIG, and because my hemoglobin level was half of what it should be... I had my very first blood transfusion. Also while there, my Hemoc doctor that sent us to Cincinnati, got word that the ADA levels that they were testing were elevated(1.31 which is very high...and the Gene RPL11 has a mutation...so this confirms that I have Diamond- Blackfan Anemia.
     
     I really don't think that being in the hospital this week was a coincidence. I got answers from doctors and the help I needed that I may have not gotten if I was at home. If I was at home, we wouldn't of known that my Hemoglobin was low, so I could of potentially become very, very sick. So, that was a blessing in itself. I want to thank everyone who sent me cards, sent my mom e-mails, facebook messages, or texts, and came to visit me...and those of you who gave me the wonderful gifts. I love cards and gifts! Haha!               P.S. sorry to those who asked my mom if they could come to visit me and we said no. It was a hard week for me, and I just needed alone time. But, I love you all so much!

A very long journey

This past month has been a fun but difficult one. Everything that is going on, hasn't completely sunk in yet. I've been back and forth to different doctors trying a different sport...diving, and just praying that my medical mysteries can be over! Through going to different doctors, I've found out some sad news. I really don't like being sad for myself, but I really am. My doctor's told me that I won't be able to return to gymnastics because of my arm and for my physical well being. I loved gymnastics so much, like after a long day I could look forward to going to see my coaches and friends at gym. It was a refuge for me. But... since I can't do gymnastics any more, I've decided to try diving. It's been a blast, and I love it! Also, this past month I've been to my Hemoc doctor a few times. My blood counts have continually been dropping, so they are thinking of another possible bone marrow biopsy right before school! That really overwhelmed me. That is like in four weeks!( I really can't believe how fast this summer has gone by!) Even though I've had the biopsy before, it's still a very scary thing to me!
This past week has also been very hard. I've been sick for the whole week! I don't even have the strength to get up to get a drink of water or to go swimming in my own back yard!I'm so ready for all of this to end. I guess all that I can do is make the best of my situations, and keep moving forward with all of this. Life is short, and whenever we have the opportunity to change someone's life, we should take all of those opportunities!

Disney World

Aren't these so cute! Man.....Disney can do really cute and inspirational things can't they! I didn't even know they could actually write things on these hats, I thought they could just write names! This is my favorite saying....and I can have it on a cute Disney hat! Best of both worlds! ( Ceci....this was for you!) The Minnie Mouse was just soooo cute I couldn't resist buying it! My Disney World trip has been so fun! It's nice not having to worry about doctors appointments for a whole week and a half! Well it's getting late here, so I got to go.....Bye!

Schools out!!!!!!!!!!

Hey everyone! Guess what.... I only have about nine more days of school! Whoooooooo! My end of the year was ruined though, because we have finals the last week! What kind of "have fun" last week is that? Ha ha. Anyway, I'm so glad its almost summer. This year has been a tough one. Going through everything has just been really hard on me and effecting my school work! I haven't exactly been able to enjoy being a "7vy"! I don't even know how many days I've missed! Oh well... right!?
Guess whattttttt............................... I'm going to DISNEY WORLD! Whoooooooo! I'm going the last week of school after finals! I guess that makes the last week a lot better! I'm so excited. I think I really need this trip, to forget everything I've been through and just have a blast with my fam. Unlike going to Cincinnati, I actually get to enjoy this trip without any needles involved... that is unless I get sick! I'm kind of angry though, my mom said I might need to get a wheel chair or a moving chair to get around in Disney World because of my health and joint pain! Ummm, absolutely not....I'll look like an old lady!
OK..enough with school! since I've last wrote my blog, I've started my new IVIG treatment. It went, surprisingly really well! There was hardly any pain! That was really nice, especially because the Subq infusions were the most painful things I have ever been through! And with the IV, I only have to do it once a month instead of every week! That makes it even better! Next week is my next IVIG infusion.

Soul Surfer

Yesterday was an amazing day and a very inspiring day. My mom took me to go and see the new movie Soul Surfer. It was seriously the most amazing movie I have EVER seen! The movie was about a girl named Bethany, she loved to surf and she grew up in Hawaii. One day she went out to the ocean getting ready for a huge surfing competition when suddenly her arm was bitten by a shark. It was totally ripped off and her arm was gone. As the weeks and years went on she had a tough time trying to find her place in the world and trying to learn things with out arm. She was very sad, because she thought she would never be able to surf again. She always questioned and got upset that she was the way she was. But, one day she decided she would make herself surf again, and guess what, she did. Ya it was a challenge for her but she did it and she have faith and courage. The whole thing left me in tears, and it reminded me that I just have to move on, and I have to have faith and just believe I can do anything. Even if it's hard, we have to be strong and we have to "keep on climbing". I encourage anyone who is reading this to go and see this movie. I know all of you will love it as much as I did. And I know it will inspire you to have faith in anything and know that anything and everything is possible.

Just to let all of you know, I received (well my mom received) a call from Cincinnati Children's. They got the blood results back, and I have what is called Diamond- Blackfan Anemia. This is an abnormality in the bone marrow or a(Bone Marrow Failure) and red blood cells. I am thrilled they have a diagnosis. Let's just have faith this is finally it! Also, on Friday I go to the Hemoc doctor for further testing and the Orthopedist for my arm. Then on Monday I go to the Reumatologist for my joint pain. I am also starting the IVIG instead of the Subq infusions soon. Please keep me in your prayers and seriously, go see that movie! I'm thankful for all of you!

Sick once again

     Hi everyone! Guess what..... I'm sick once again. I was so hopeful that I could maybe, just maybe, get through a whole week of school. Ummm.... ya that didn't happen! This is how it goes, one week I have a great week, I feel great and I think the next week is going to be even better, but then I get sick and I can't go to school for even three days! It stinks. My goal though is to get through at least a whole week of school in this quarter, let's cross our fingers. Hey, I'm hopeful and I believe I can do it!

     On top of being sick, I've had a lot on my mind. It's just been really hard for me to know they(the doctors) haven't diagnosed me with something, and we're still playing the waiting game. People have asked me questions, like "so what did the doctors find out?" I haven't really been able to tell them because we haven't found out any answers yet, all I've been trying to tell them is that we're waiting on labs and test results to come back. That is really what's happening at this point and no one is able to really understand that.(except for my family, of course!) I don't really know how to put what I just said into better words. It has just been really, really hard on me, and I can't get over the fact that the doctors haven't diagnosed me with anything, so it's like we're starting from step 1 all over again.

A bad day yet still hopeful

It feels like ages since I have written on my blog. Just to keep all of you updated, I arrived home from Cincinnati last night. I`m leaving very unsettled about the whole trip. It`s been very difficult for me to take in such a great deal of information in such a short amount of time. I`m leaving Ohio with no answers instead of more answers. That's the part that is really weighing on me. I was so hopeful in finding more things out. Although one thing is for sure, I don`t have mds. That is one thing I am more than grateful for.
We got a call from my Immunologist in Arizona. He wants me to try the IV form of IVIG. This is something that has been on my mind for a while. My Immunologist said that people can have different reactions to different things, so instead of doing the at home treatments, I would do The IV form of the Vivaglobin or Hizentra.  That is what he wants me to try to see if it has a different effect on me. Or in other words make me feel better. This is a feeling that both me and my mom have been feeling, to try this form of Vivaglobin. One thing I did learn from this trip is that I have to follow my heart and listen to the feelings I`m feeling.
Even though things didn't turn out how they planned, I am still very, very faithful and hopeful that something will show up in at least my bloodwork, or that later on the doctors will be able to finally be able to diagnose me with something then be able to treat it. I am prepared for ANYTHING that shows up, as long as it's an answer I'll be beyond happy!