Jayden after surgery.

Jayden was a little loopy but was still a happy boy!

We're going to miss you Abbie!!!

Dr. Abbie Collins has been Jayden's neurologist for over a year now. She is AWESOME! She has decided to go to New York and study movement disorders. We are excited that she is going to study disorders like Jayden's Chorea movement but are extremly sad to see her go. She has gone above and beyond her duty as a doctor. Everytime I have needed her to call a Pharmacy, CCS, or anything else concerning Jayden's needs she always got on it right away. Abbie loves a challenge and boy has Jayden given her one. If it weren't for her he couldn't have come as far as he has. A few weeks after I met Abbie,she and I made a deal. She said if she fixed Jayden that I had to go back to school to become a RN. Well obviously she hasn't held up her end (I love to tease her). Abbie, I just can't thank you enough from the bottem of my heart for all of your efforts. No one will ever be able to fill your shoes here so hurry back! You have become a great friend and I am grateful to you for all you have done with Jayden. Good luck in New York they are lucky to have you. Keep in touch, I am sure Jayden will come up in your studies there. Love ya, Brandy and Jayden

Jayden's successful surgery!

Hello everyone! I am glad to report that Jayden's surgery was very successful. He has been doing extremely well. Surgery lasted around 2 hours and Jayden was up and smiling right afterward. He was admitted to the hospital at UCSF so that I could learn to access his port. The nurses there were very confident that I could do the job. I practiced with the nurses first and then with Jayden. He wasn't very happy with me because he was still sore, but I did it successfully. From now on when I have to call 911 I will be able to establish IV access for the hospital so that they can load Jayden with a medicine to help stop the seizure. Special thanks to Dr. Harrison, 6 & 7 Long nurses, and of course our favorite Neurologist Dr. Abbie Collins. Thanks for believing in my ability to take care of Jayden and fighting for everyone of his needs! Thanks to everyone who kept us in your prayers. We have a long battle ahead of us. But I am confident that a miracle is around the corner. That's what it will take to make this baby well. Love, Brandy

We're Off To UCSF

Jayden and I are off to UCSF Wednesday afternoon. We are going to go see Dr. Harrison so that he can explain what is going to happen during surgery Thursday morning. Jayden will be getting a PORT in his chest. I am so relieved. I really believe this will be a blessing. The PORT will help us be able to stop his seizures alot quicker. I will still give him the meds I give him but won't have to worry about an ER not being to establish IV access. I will do it for them and all they have to do is provide the meds. No more ouchies!!! Drawing blood will be a snap! This device will be placed under the skin and can stay in for years. Please keep Jayden in your prayers that everything will go smoothly. And that we will be home soon. Love, Brandy

Jayden's busy weekend!!!

Last Friday night Jayden had seizure that lasted 1& 1/2 hours. I called 911, they ER had to poke him more than 20 times to get an IV to load him with meds to stop the seizure and give him brain a rest. When they finally got the IV it only lasted long enough to load one med and the vein blew. We went home about 4 hours later only to get home and call 911 again! He had a fever of 104 and went into a full blown massive seizure. I had already given him so much meds that night I couldn't help him. Within a couple of hours we were being shipped off to UCSF. They poked him 7 more times and still couldn't get an IV so were forced to put a GI tube through his nose to hydrate him because he wasn't coordinated enough to drink a bottle. He had a rough weekend and has a long road ahead of him. This morning he was put on the schedule for surgery to have a PORT put in. Hopefully this will happen really soon. A port is a device that they will surgically put in his chest. You won't be able to see it but it's purpose is to make sure that we will be able to give him the meds he needs ( like IV Meds) and draw blood without causing him any pain. You put numbing cream on the surface of the skin and I will learn to access it. I will be supplied with everything I need so that all the hospital has to do is supply the meds. This will make things a little less scary. It's hard to watch your baby seiz out of control and you can't help him. The reason they can't get IV access anymore is because his veins are scarred because of everything he has been through. The good things that came out of all this is that despite everything we still got to see Jacy, JOdy, and Jay Simmer. They came to the hospital to visit us. Jacy is the cutest thing. She just waved and smiled at Jayden while he slept in his crib at the hospital. He was to drugged up to even notice she was there. I know things happen for a reason, one of the best things that came of all this is the friendship we have established with the Simmer's. It's really nice to have friends to talk to that understand what your going through. I don't know how I would've got through the last year without her. Thanks JOdy, Love ya! Thanks to everyone who has kept up with Jayden's progress and continues to pray for our family. xoxoxo Brandy

Happy Mother's Day !!!!

Happy Mother's Day everyone! This weekend is especially special for us because we get to see Jayden's "girlfriend" Jacy Dawn Simmer! Yippeeeeee! We are so excited that they will be flying out tonight and tomorrow we will be headed to San Francisco to see Jody, Jay, and Jacy. We haven't seen them in over a year. For those of you who don't know, Jacy was born the day we arrived at SF last March. She is from Arizona and was part of a special program at UCSF. She was born with Spina Bifida and actually had surgery before she was born to cover the whole in her back. To everyone's amazement she is doing great! The doctors told Jody and Jay she would never be able to stand or crawl or anything else involving her legs. But they set out to prove everyone wrong. Jacy is now crawling around and getting into everything. Jody and I became good friends in SF and were each others comfort during tough times and continue to be. Jayden and Jacy have alot of catching up to do! We can't wait to see you guys!!! Here is what Jacy and Jayden looked like the last time they saw each other.

Jayden's family get together

Jayden and cousin Gabe

Jayden had a great weekend visiting with his cousin Gabe who came all the way from Missouri to meet him. The two played together and took lots of pictures. Gabe has down syndrome and takes depakote to successfully control his infantile spasms (seizures). He is an amazing little guy just like Jayden. His Mom Alicia is doing a great job! We got to visit with family we hadn't seen in awhile and just had a great time. Gabe and Jayden both made some gains over the weekend. Gabe learned to pull off his socks and put his feet in his mouth. Jayden learned that he could shake his head "yes" as well as "no". It's too bad we didn't live closer to each other.