Yes Im back again and your not going to believe all this...

So yes Im back and although we are not great were not bad either, We have been through some crazy stuff though. Blue for a while was on track of being for the most part seizure free but whenever she popped a tooth or sick and especially when she was sick she would always have more seizures. Im not gonna lie and act like this is easy for me. I couldnt help but read a few of my old posts and immediately the emotions of everything we have been through rush into my head. I click off of it fast as if it was a horror movie with bloody gruesome images. Sometime I think it would be easier to see that than to have to relive the saddness that is sealed inside this blog. I hope it can inspire others or teach them something but for me it is all mistakes and learning from them and some I just cant even think about. my biggest regret will always be freaking out over that stupid little eye flutter. No one would believe me that it was seizure related. I was so sure I needed to prove it to them and when I finally did they drugged her so bad she ended up in a coma and her life was changed forever. I wish more than anything I had the knowledge then to never put her on those terrible drugs. From now on I will be following my instincts and I accept her for her seizures and all. I might jump around a little until we are all caught up but for now I wanted to get her new seizure videos up so we could start our new story. The one that Blue is leading us all through. lets start out with some happy news. Baybeblue had her Make a Wish. When we decided to start Blues Make A Wish process It was following the sad passing of Blues little boyfriends Ryan and Carter. Sammi had passed a while before but the thought of something happening to Blue before she had a chance to experience this was too much so we contacted them and it went really fast from there. They told me I would need to pick 2 possible wishes for Blue. I was overwhelmed by the pressure of having to make this decision for her. This was a once in a lifetime opportunity literally and Blue cannot speak so it would be completely up to us to decide what would make her happiest. Blue gets stressed in too chaotic environments so we knew Disneyland or traveling too far was out of the question. Also Blue wasnt doing very well and barely ever woke up so the decision proved harder than I thought. I started researching online previous wishes that kids had done before to get ideas and I ran across the video of an amazing little girl with a brain tumor. It had already taken her ability to walk and was close to taking her voice too but she wished to sing a cover to Katie Perrys Roar. They used auto tune and made her sound like an absolute angel. https://www.youtube.com/watch?v=m_An8xNwupo
Her story just touched my heart so deeply, Olivia Wise passed away after making this video and the fact that her mother will always be able to watch this and see her and feel her voice just filled me with emotion and I knew instantly that If something happened to my princess I would give anyting to have something like this forever. Here is more of her story, she is so beautiful.  https://www.youtube.com/watch?v=fG5N1Qm3twI
So the process started. Since Blue cannot sing but she is gorgeous so I decided she should star in her own music video.   We chose a roadtrip with the family in an RV for her comfort was our second choice if the music video idea wasnt approved.  On Our visit with Make a Wish they let us know that the music video was approved and they were very excited about it.  The next step was chosing who would sing her song. Our first choice was Katie Perry. Blue and I love to lay in bed and watch youtube videos of people singing so we took to youtube to find our winner. Immediately Blue lit up when we played Katie Perry Roar, that was her favorite song so we brought the idea to Make a wish. They let us know that it was a possibility but it would be years that we had to be on a waiting list for any celebrity and probably longer for the popular choice Katie Perry. We thought long and hard about it and with how bad Blue was doing we decided we were gonna find someone else. We started searching through tons of videos and came across a Girl named Candice Russell who did a spot on Cover of Katie Perry and Blue loved it! Her face lit up like i hadn't seen before and instantly I knew she was the one. I read a little bit about her and turns out she is an American Idol finalist and lives in Oregon! I emailed the Make A Wish People and told them the name and information on Candice and they said they would contact her people and see what they could do. At the next meeting with Make a Wish we met with the production company that would be shooting the video and they were just amazing! Jonathon and James from http://www.visualaidinc.com/  were Blues guys and would be working with us through the whole process. They said they were unable to contact Candice;s people but luckily I had decided to try messaging Candice on Facebook and she had already messaged back and was totally excited to do it! I passed along her contact info and next it was time to have a meeting with Candice too to brainstorm ideas. They were really wanting to incorporate the whole family into the wish process so they suggested that we all be in the video with Blue. I was pretty nervous at the thought but agreed. I went home and couldn't stop picturing us trying to do a dance number or something and then it came to me. We tell the story of her Make a Wish. Each scene can be with each member of the family doing something with Blue that they love to do and leading up to meeting Candice. James and Jonathon loved the idea so they took it and wrote the whole video. It took us the whole summer to shoot at different locations but each one turned into a special memory as it played out. We made some great new friends along the way too. Candice's family is just the best. Her brother and her parents were in on the process and I just fell in love with all of them. I asked to end Blues video with a tribute to her guardian angels Sammi, Ryan, and Carter. So without further ado.. Here it is Blue's Make-A-Wish Music Video  You can check out more on Candice Russell at http://www.candicerussell.com/

LEGACY EMANUEL HOSPITAL LIES!!!!!!

I am writing this passage to ammend this blogs info and to explain to the world what really happened to Baybeblue. Until now for the last four years I have had 2 different attourneys working on my case against LEGACY EMANUEL HOSPITAL, because of the lawyers and the thought of future trial I left there name out of everything as to not hinder the trial. Now I recieve a letter from my lawyer saying he gives up and by the way the statute of limitations runs out soon so you better hurry if you want to do something... I am devastated. I took my daughter Baybeblue for an EEG to checkout her seizures, a new tiny only noticable by me eye flutter had shown up. Other than that we were working on physical therapy and she was walking around in a walker holding her head up, sitting in a high chair eating food on her own, eating baby food off a spoon, and holding her own bottle and drinking it which was her life, her bottle was her passion!! After the EEG the Dr Pohowalla told us he saw something on her eeg and we needed to go to legacy and be admitted right away... I didnt see why but I trusted them. On admission Baybeblue was given several new seizure medications and with this all being new, I again trusted them and let them do what they wanted to my Baybe. They put her to bed on a med pump which there is a picture of at the beginning of this blog. About 30 min or so after I fell asleep next to her I woke to strange noises and saw her wrenching and gasping for air. I called the nurses and they called respitory help and they had to revive her and help her breath she was ok and breathing but never woke up through all of it.... The next morning I waited for her to wake up with still NO EXPLANATION offered as to what happened and she never woke up. I tried everything and she was unresponsive. I demanded to see her records to see what they had given her and the doctor told me no, I was refused her medical records for four days while she stayed in a coma ( still with no explanation) I was even told that she may never wake up. I brought her there for an eye flutter and now she could die?? I was hysterical and confused and not one person knew what they were talking about. One night of her coma, I was laying in the bed with her and she started shaking violently but it wasnt a seizure, it was like she was freezing. I called the docs again and they were totally clueless running around like a bunch of hamsters and still no explanation. FInally on day 4 my little girl opened her eyes and although barely and she was still limp but she was waking up, I was happy and angry at the same time. One this day a "social worker" came in our room and said we are sorry no one should have ever kept your daughters medical records from you so here they are we can look at them together. I had 3 witnesses plus me and the caseworker. I looked through the file skipping over erelavent garbage until I found the page from that night. I read down the list of meds and when I got to the one they put her to bed on (phenobarbitol) the dosage amount was scribbled out with no anitials or explanation for why it was scribbled out of an official document. They slammed the file shut and said they would get to the bottom of it. I NEVER SAW THAT PAGE AGAIN!!!! WHen Baybeblue woke all the way she was very weak and they took her for testing. It was then I got struck with the first most painful blow, they said she lost her swallow and her gag reflex so we must now shove a tube down her nose so she can eat. I wish I would have known that before that night it would have been the last bottle I would ever watch her cute little butt chug down and passout with milk all over her face :(( They said no more intake by mouth period. I was so angry and non trusting that I took the first opportunity to be transfered with her by amulance to OHSU Doernbecher childrens hospital. Before we left we asked that her records be sent with us and they said of course.... when we arrived to OHSU and Baybe was crying in horrible pain because they put the nose tube in wrong at legacy which ended up leaving an open wound across her face. The second thing I did was grab the medical files and searched though hundreds of pages of non sense and i got done looking through all the pages and it wasnt there, the only page I wanted, the only proof, was gone. The hospital tried multiple times to request the paper with no responce. I demanded to speak to the nurse that scribbled it out and what a coincidence the hospital said she got called away on a family emergency out of town and was unable to be contacted!!! CAN YOU SAY COVER UP????? I waited as long as I could before they finally told me she wasnt regaining any of her skills and she would need surgery to put in a more perminant feeding tube directly into her belly (g-tube) I cant even put into words how hard that day was for me. My little girl they took so much from her and because I had retained a lawyer, ohsu stopped discussing anything that happened prior to her arriving there (because the hospitals have a rub eachothers back policy) We stayed for the next year and a half trying to figure out what else they did to her. SHe had fevers every night, was on oxygen to help her breath, she had horribly increased seizures up to 80 or more a day. She kept getting hypothermia and at one point her organs released all there fluid into her body so she swelled up like a balloon and was covered in a bright red rash and couldnt breath, they had to rush her to ICU for a blood transfusion?!? STILL NO EXPLANATION for any of it, they had no idea the entire time why all this stuff was happening. I kept my mouth shut and only talked to my lawyer and he promised he would help. What he did was hold my case and do nothing until the statute of limitations almost ran out and then dumped me. We just had another swallow study a month ago, I was so hopeful for any better news. She asperated on the first bite and at 5 years old is still not allowed to enjoy the one thing in life she loved so much FOOD!!! My baybeblue never learned how to hold anything again let alone her bottle and still cannot bear any weight on her legs. I can except that god gave me a child with special needs but that child could eat on her own and walk around and made tons of baby talk and now she cant do any of that, they stole that from her, they took what is most valuable, quality of life. I will keep fighting and I will make people aware, I have no lawyer now and I have nothing to loose. I will be blasting my story and Legacies mistakes every where I can until they get so sick of hearing about it they are forced to listen to me. They do not save lives they do the bare minimum. ANd Im definetly not the only Mom I know that wants to throw up when I see you ridiculous commercials saying how wonderful you are. LEGACY EMANUEL HOSPITAL you are the worst place I have ever been and you killed a part of my child and covered it up to protect yourself, you are selfish and unorganized and uncaring and made it so I will never trust another doctor again. Heres baby before the "incident" shes never held another thing since this time.

More Picture from Baybeblue's Bday Bash fundraiser for UCP

We ended making aprox 400 dollars that went directly to United Cerebral Palsy of Oregon and SW Washington. I recieved a thank you and also was told by the chuckie cheese manager that we did better than most sports teams, schools, and churches do at raising money :)) cant wait til next year.

Baybeblue's Bday 2012 beginning....

Im very surprised but this years event went exactly according to plan...almost! The cake showed up and it was amazing, I almost cried instead I took a crap load of pics of it because it was the most beautiful cake I have ever seen. Ill add the link below of the cake maker. The best part was that you would think that these amazing cake designers spend all there effort on making it look cool, but the entire party was shocked, amazed, and delighted by the fact that it was the best cake they ever tasted!! we actually had requests to take some home which was fine cause it was huge and gorgious. All of our family and a few amazing friends showed up and I will never forget that!!! Darline, Carl, Sam , Lexi, Chris, Josh and his family, the UCP ladies Jan and Susan, Annielaurie, and everyone else you really just will never understand how much you being there meant to me. We had a candy buffet and Sam and Lexi rocked the face painting and everyone had a great time. I love my family whos always there and kevins family who just add to my life, it was a total success. Not to mention that we quadrupled our proceeds from last year and United Cerebral Palsy UCP will be getting a nice size check from chuck e cheese. We also had a donation bucket and made 200 torwards getting Baybeblue her Ipad that has hundreds of apps to help disabled kids just like Baybeblue be able to communicate and play like other kids. Thank you so much to everyone that was there, I love you all!!! Darline: Harveys next week for real!!!

Im sorry this is the only pic I have so far but someone decided to steal my cell phone at the end of the night with all the pics so anyone wanting to help find them let me know. I WILL find them!!