The Clip From Fox 40 News

THANKS FOX 40 NEWS

As most of you already know, on May 18th Jayden was on the Fox 40 news. It was such a nice story about Jayden; done by Roweena Shaddox. The response to the story was absolutely wonderful :) I received a call from Chris of Triad Investment Group, he and his partners Matt and Tony were very anxious to help us out. We are very excited to see what happens. They are going make our lives alot easier.

And to whom do I owe this privledge? My wonderful friend Jody Simmer from Arizona. Yes, she's all the way in AZ and has helped us tremendously. She is amazing! As soon as she heard about Jayden's Infantile Spasms she told me we had to put his story out there. She jumped on the computer and did her magic. She wrote letters to everyone she could think of, including Fox 40. They responded right away and the next thing I know they were at my house interviewing me. Thanks Jody, I don't know how I would have gotten through these past couple of years without you.

As soon as I know exactly what is going on I will let you all know. Jayden is doing pretty well right now. He has been rolling around alot which is an improvement. We have set a date for our benefit dinner/dance which is Sept 16th so save the date! We want all of our friends and family there with us. That's all for now.

Love you all,

Brandy

FRUSTRATED!

Frustrated doesn't even begin to describe what I am feeling right now. So much for the saying, "What you don't know won't hurt you". That is not true is Jayden's case. We left for SF at 5:45am on Wed, fought the traffic and arrived close to 10. We were set up in our room and waited for the docs to come in and talk to us about the ACTH that we were sent there for. Well that was a joke. An attending whom I have never met came in with her crew and told me how against the ACTH she was because of all of the horrible side effects. That was the only thing the two of us agreed upon. She went on to tell me that it didn't matter whether or not we stopped the infantile spasms or not. They were not the reason Jayden was regressing, the underlying cause (whatever is wrong with him) is the reason. It was a very tense room when she had the nerve to tell me that UCSF had exhausted all tests possible and have not found what is wrong with Jayden. He is the only child with the symptoms he has and has yet to be diagnosed with any real thing. Basically she said that they had given up on him and there was nothing left for them to do. Keep in mind that I have never talked to this woman EVER! It was all I could do not to throw her out of our room. I told them I was leaving if that was how they felt because I was going to get another opinion. It's not that there aren't any more things to test him for it's that she is not willing to test anymore. So I left that afternoon. After a very emotional day and after talking to the Neurologists that I deal with daily we concluded that she was full of %^&%/! Dr. Hutch and Dr. Armstrong/Wells will stand by Jayden and our decision to go somewhere else. That woman had no right to talk to me the way she did, especially without the backing of the whole Neurology team. I'll deal with her later. Right now we are focusing on getting paperwork ready so we can go on a roadtrip. After talking to lots of people and searching the Web I think that at this time our best shot is UCLA. Will insurance pay for it? I don't know. But what I do know is that we have had such wonderful support from all of you and prayers too! Where there is a will there is a way and we aren't going to let money get in our way. I am bound and determined to give this kid the best shot at life no matter what. Jose and I have been discussing different ideas to raise money. As soon as I have more info I will let you know what we plan on doing. Doctors don't know everything I would love more than anything to prove SF wrong! So please continue to pray for us. Right now Jayden is doing ok. I am going slowly back up on his Tranxene and I guess we will have to wait and see what happens. He is still having pretty bad spasms but he is still in a great mood. He gives me strength to keep fighting because he hasn't given up yet. We'll never give up on him! Love, Brandy & Jose

Back to San Francisco

Well tomorrow morning bright and early we are off to San Francisco. I spoke with Jayden's doctor yesterday afternoon and wasn't able to get too much more info. They are stumped and can't believe this is happening. I have asked that they put their heads together and think about where they can refer him for another opinion. UCSF considers themselves the highest level of care and often don't refer patients out. But in Jayden's case she said that they were all for sending him to the best of the best. The next thing we have to worry about his how are we going to get there and is insurance going to pay for it. I don't care how we get there or how much it costs as long as I am giving Jayden the best shot I possibly can.

Thank you everyone for all of your kind words and especially your prayers. It's ultimately in God's hands, but we must continue to pray that God will give these docs the wisdom they need to find out what is wrong with Jayden so they find the appropriate treatment. We as a family are hanging in there but keep the comments coming because it helps me to know that others are praying for him. I will keep you posted as we go along. Both yesterday and today I saw Jayden choke on his own saliva, this is not a good sign :( We need answers and we need them fast! My poor baby, it just breaks my heart that he is going through all of this. No time to cry now, only time to fight!

Love,

Brandy