Saturday

I had a very productive day today. In physical therapy i did some weight bearing excercises. It was extremely difficult but i know its necessary. I felt good afterwards because i feel like im working hard. The physical therapist i saw today said i have a lot of potential but need a lot of therapy. Im up to the challenge. As much as it stinks to be in a hospital over break, i dont mind too much. I know that being here is what i really need.
       my grandparents surprise visited me today. It was definately a highlight since i often get lonley. My grandy made me laugh when she pointed out that we are the opposite of the rest of the visitors. The visitors were grandchildren visiting their grandparent while in my case it was the grandparents visiting the grandkid. Its pretty funny. Tomorrow is the day where there is no therapy...i have no idea what im gonna do all day. Thank god there is cable here :P. 

Busy day at rehab

I had a very eventful day at rehab today. I started treatment in physical and occupational therapy and had a speech therapy eval. I worked really hard today.im so sore. The best part of today was this evening. My twin sister came to visit me and she surprised me by signing me out for an hour and takin me for icecream. I have the best sister ever. Im so tired now though. See you later!

Rehab finally

I finally got out of jersey shore today. Now im rehabin it up at meridian rehabilitation. I didnt start any therapy today since it was the first day. I look forward to doing the therapy because i need it very much. It is going to be a lot of work, but its worth the benefit in the end. Anything in life worth getting takes hard work :-) . The harder the work the more rewarding the end result.

Waitin on rehab...

I am still in the hospital for starters...the docs say i should be sent to rehabilitation. I am really looking forward to going despite the fact id rather be home.im looking forward to going because i can get some intensive therapy and hopefully get my leg braced.my physical therapist says that the brace will help me immensley.i feel kinda homesick though. The hospital is extremely lonley. I wish i was at the shore instead of jersey shore hospital. However, i know that right now the hospital is where i should be. I find out tomorrow or monday which rehab ill be admitted to..either kessler or meridian. Ill keep you updated when i know more.

june 19th

I feel like writing an update yet im not really sure what to say. lets see where this goes...For a start, i am still in the hospital. still having trouble swallowing. it is so boring here. the room here reminds me of something out of a movie, its so dreary. I guess ive been too accustomed to the childrens hospitals. i have no idea when ill be out of here but i hope its soon. i want to enjoy some of my summer. 
my grandparents have been keeping me company while im here. they are the best and i am so greatful to have them. they live over an hour from the hospital and still come to visit everyday while my mom is at work. after work my mom comes to the hospital to visit. im so lucky to have such a loving family.
i know i dont mention it as much as i should but i am so greatful for my sisters. they give up so much so i can get the support i need. the main thing they give up is normalcy. they sacrifice so much and hardly complain.i couldnt have better sisters. i cant wait until i can come home and spend some time with them.

frustrated

its day 13 of no swallowing and i can not begin to voice the amount of frustration i feel. 13 days of no swallowing means 13 days of no eating. the doctors say encouraging me to eat could be helpful. thats all fine  and dandy but i think my starving stomach has the encouragement under control. i am genuinly worried about loosing too much weight. i reallly  hope they find some way to get food into me.

NG tube

im finally getting the nutrition i need. yesterday the doctors put in an NG tube. getting the   tube in was so painful. having it in is just slightly more comfortable. i hope they can get me to swallow again.

hospital again

I am once again admitted to the hospital. it is because of the swallowing problem. i feel really frustrated because im so hungry and cant swallow. i really hope they can help me. my  family and friends are the most amazing people ever. they are helping me keep my spirits up.its so nice to have a good support network.

Still not swallowing

Four days after my reaction and I still cant swallow. It  is so obnoxious because im friggin starving. I havent eaten much more than a little bit of baby food and soggy mashed potatoes. Im obviously dehydrated because Im ¨pale and dry¨ according to the pediatrician I saw. She recommends I go back to the hospital so I can be treated there. I am unsure whether I want to go or not. Everytime I go to the hospital its so aggravating.
 Despite this I attended a physical therapy session today. It was a good session, I worked hard leaving my muscles sore. We did e stim (electrical stimulation) today on my right leg to see if we could get the muscle to react a bit. It will take a while before we know if anything improves from the e stim.

Long day

Yesterday started like every other friday. Fridays are when I get my IVIG treatment. I was upset about it because treatments take a huge toll on my body but I wasnt worried. The treatment began as usual. Start with a dose of anti nausea medication, then a shot of steroid and then the IVIG starts to be infused. This is when things were not so normal. My nurse asked me if I was feeling ok. I looked at him and told him I felt kinda funny in my throat and my face. He told me to tell him if I feel anything else unusual. The treatment continued on and moments later my face swelled up and my throat was more swollen. The treatment was stopped and I was administered IV benadryl. Next thing I knew I could barely breathe at all. I was really scared. The nurse then gave me an epi shot and 911 was called. My body was beginning to turn blue. When the Emergency squad arrived they put on an oxygen face mask and I was off to the hospital.
I was in the hospital about 10 hours. While at the hospital I kept getting shots of benadryl and a steroid drip trying to keep my airway open. The doctors diagnosed it as Anaphylaxis.