Jayden had so much fun watching his cousins play softball. He's all smiles :)

Praise God Jose got a job. Thanks to Mike Fetherlin who referred him. Jose is now helping do electrical here in town. It's not permanent but it works for now. He hadn't worked since April so this was truly a blessing. I am very excited because since he started a week ago he is like a new man. He's even talking about going to church! Now if that isn't a miracle I don't know what is. We are proud of him. God willing, Jose is going to take some classes at Delta this fall. His ultimate goal is to get on with the Union for electricians and go from there. He's really smart and he has a passion for his work. Jojo has decided that he wants to make some money too! He makes his Dad's lunch every night and puts it in the fridge, with my supervision ofcourse. But the other night I wasn't here and Daddy was supposed to supervise but got lazy. Jojo couldn't find the sandwich bags so he just put the sandwich in the paper bag and didn't say anything. Let's just say Daddy's sandwich the next day was a little toasty! :) Well, that's all for now. I just wanted to let you know how well things are going around here and to thank you for your prayers. God bless, Brandy

It's Been Awhile.....

It's been awhile since I have updated you on Jayden's progress. We have been overjoyed by all of his lastest accomplishments. I have had so much fun playing with him lately, we all have. Jayden is so much more aware of his surroundings these days. I can get him to do more things on command. For example, If I tell him to kick his feet he does it. He also gives us hugs and kisses now. I ask him to give me "love" and he will put his arm around my neck. But you have to be careful with those kisses......the other day bite my cheek. Yes he has finally figured out what those chompers are for :) Meal time is no longer a huge battle, he'll eat just about anything as long as I mash it up for him. He's learning to drink from a sippy cup. I still can't really get him to hold the bottle or cup but he'll drink from either one. His favorite thing to do these days is pull Mommy's hair. He continues to get lots of therapy and has an appointment for Stanford in September with Dr. Sanger her specializes in movement disorders. I can't wait to see what he has to say about Jayden. Next week we will meet our new Neurologist Dr. Jennifer Armstrong-Wells @ UCSF. She'll be taking the place of Abbie Collins and those are some pretty hard shoes to fill. We miss you Abbie!

Jayden Is Doing Well

Jayden had a seizure last Saturday that lasted 10 minutes. I decided to take him in the backyard and get in our small pool with him. The water was warm enough so we went for it. He was only in for about 10 minutes when it started. I am so grateful that it was that short. I didn't have to call for assistance and that is a blessing. Infact, a couple of hours afterward he was already sitting up by himself and playing. That never happens. Jayden is doing great! He is reaching for things and has longer eye contact. He loves his baby doll "Larry", he likes to grab him and bite him. He is sitting up for longer periods of time and playing with toys. He likes to grab his Dad's face and slober on his cheek (Jayden kisses). He is just understanding so much more these days and is interacting with us. We are really staying busy with all of the therapy that Jayden is getting. He has some kind of appointment each day and he smiles through it all. The therapists love working with him because he is so compliant. He needs all the help he can get so he can squeeze Jacy next time he see's her :) Love and prayers, Brandy

Jayden Is Home!

We're home! And no MRI :( The MRI scanner they need to use to get the picture they want is in the hospital. Which means you have to be inpatient to get it. We stayed there as long as we could but they were unable to schedule one for him. The Neuro Team is split in their thoughts of whether or not doing a MRI at this point will show them anything. I want it done now. They have told me that the fact that the seizures are getting longer and harder to control is not a good thing.(It doesn't take a genius to figure that one out) All I can do is come home and pray that God will protect him. He is such a strong boy! That last seizure was so scary and I was so overwhelmed with emotion when I saw him shaking his head no to me. It was my little sign that he was ok. He has bounced back incredibly well. He is almost to baseline(himself) and is full of smiles for us all. This last year as been extremely difficult for me and my family. And I just want to thank you all from the bottem of my heart for all of your kind words and prayer. Not a day goes by that I don't thank God for giving this special boy to me. For trusting in me that I would be strong enough to deal with the constant battles I face everyday. We just take one day at a time in this house and cherrish every moment. Sometimes we just need to slow down and be thankful for what we have. Jayden encourages me to get up each morning and fight just like he does. I hope he encourages you as well. Love, Brandy

Still at UCSF

We are still at UCSF, but we have moved from the PICU to 6 Long which is the regular Ped floor. Jayden is doing really well. He doesn't want to suck on his bottle but will drink whatever I give him through a syringe. They put us in a private floor while they checked to make sure he didn't have a respitory infection. But....now that they know he's ok we have a roommate. This roommate is really really special. He has been Jayden' roommate before. A year ago when Jayden spent 6 wks in the ICN here at UCSF "Larry" was the kid next to him. Larry had a pretty and colorful mobile on his crib and Jayden didn't have anything so they shared. I recognized Larry the minute I saw him. HE's HUGE! HE's only a couple of months younger than Jayden and is at UCSF even more frequently than we are. My prayers to him and his family. As for Jayden, we expect to come home Tuesday afternoon. Right now the team is busy trying to schedule a MRI for Jayden in hopes that they may see something that is causing the seizures and be able to remove. It would be a miracle if they found something operable. I just keep praying for a miracle that they can fix him. Stop the seizures or at least slow them down. I can't wait to get out of here. I talked to JOJO today and he misses me and wants me home. It's so hard! I'll have more updates soon. Love, Brandy

Jayden And Mommy Ride In A Helicopter

Sounds fun right? Wrong. This morning at 3 a.m. Jayden had a massive seizure involving his whole body that lasted for 1 hr and 55 minutes. He was loaded with numerous meds that didn't seem to help. At last we were mediflighted out to UCSF where he is currently in the PICU (Pediatric Intensive Care Unit) Right now he is stable and all signs of seizure have ceased. But what a scare. His seizures aren't usually this involved and I was really scared. He was blue and really struggling. I anticipate to be here until at least Tuesday afternoon, hopefully getting a couple of tests done (MRI). He just can't keep seizing in such a manner it is not safe. Please keep him in your prayers. Gotta get back to the room. Love, Brandy

Jayden and Mamaw

Mamaw (my Mom Carla) has had 3 sets of Chemo so far and is doing great! She struggles with nausea for the first 3 to 5 days after chemo but has yet to loose any weight. I happy to report that her tumor is has shrunk significantly. In fact the lump that was under her arm is completly gone! She still has a long road ahead of her. Whether or not they can feel the lump at the end of chemo she will still have to have her left breast removed probably in early October, 6wks of radiation, and a shot once a week for a year. She is one tough lady! She has the best attitude. She's says we're going to take one day at a time. And tells us not to treat her like she is sick or we will make her mad! That sounds just like her huh? Mamaw says Jayden inspires her to be strong. If he can go through everything and still smile she can too! Just a reminder, my friend Jody Simmer in Arizona is still looking for donations for her Breast Cancer\Spina Bifida walk coming up in November. She is walking in honor of my Mom and her daughter Jacy (Jayden's girlfriend) who has spina bifida. If you would like to make donations you can contact me via email. Thanks. Love, Brandy

24 DAYS SEIZURE FREE!

Jayden went 24 days without a seizure. BUT.... Monday night ended that record. Jayden's seizure lasted 19 minutes and I successfully accessed Jayden's port. This was the day I was dreading. I just knew that everyone was going to give me a hard time regarding his port here at the local hospital. But to my suprise.....the paramedic came right in the house saw that he had a line and grabbed him before the anyone else got up to the door. We call 911 so often that usually there is at least one person who knows Jayden. They walked up and asked," How much diastat did you give him this time Mom?" When we got to the ER everyone who saw him said the same thing,"Awww...he's back!" and "Hooray! He has a port!" They drew labs from his port right away and started giving him IV fluids. This is the first time in MONTHS that Jayden stopped seizing with 60 mg of diastat and also the first time the seizure has been that short. They were getting scary for awhile sometimes lasting an hour. Special thanks to UCSF nurses and Abbie who believed in me enough to teach me how to access his port. I did it! Jose says I need to go Nursing school. No problem, just stop the seizures!!!! They had never taught a parent before! YOu guys did a great job!