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!

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.

Jayden's new gate trainer

Last Friday, Jayden finally got his equipment that we have been waiting for since January. He now has a gate trainer. The gate trainer is going to help Jayden learn to walk. It gives him lots of support and teaches him how to hold himself up correctly (balancing on both legs equally). He can only be in as long as he is willing to work. Once he starts to get tired or lazy I have to take him out. He absolutely loves it. He is able to take a few steps correctly and the rest are scooting forward using both legs. He also has a brand new bath chair. Since Jayden can't sit up by himself completly the bath chairs allows him to sit up and feel secure in the bath tub. He loves taking a bath with Jojo. The last thing he received was his customized stroller. This piece is important because it constricts him in his chair and doesn't allow him to side sit. He has to sit up straight which is really good for his back and trunk control. Lastly, Jayden has learn something new. He knows how to tell me no by shaking his head back and forth. He does it at such appropriate times that I have to turn away so he won't see me laughing. I give him his meds he tells me no no no. I try to feed him food, no no no. But I can't wait until we go to UC San Francisco so he can tell Abbie (Dr. Collins) no no no when she tells us what the next yucky med is going to be. Love, Brandy

Welcome to Jayden's Special Page

Hello Everyone! Thanks to our friends the Simmer's, Jayden now has his very own special page! As you probably already read Jayden had a really hard night last night. But I am happy to report that he is recovering quite well. He gave us a scare last night when he had a reaction to the Diastat (med I use to stop seiz). But today he was able to drink his bottle and even eat dinner. He is still really loopy but it hasn't affected his smile. Dr. Collins (neurology UCSF) called today and we discussed different options regarding Jayden's meds. For now we are going to start giving his meds 3x's a day instead of 2. And we are also going up on his Keppra. We are both concerned about his reaction to Diastat. Jayden's seizure are getting longer and requiring more diastat. This is a major concern for us becausDiastat is the only way I can stop a seizure, if I didn't have it we would be calling 911 all the time. The only thing we can do now is work on meds and try to control the seizures as best we can. There is always a concern when seizures are as prolonged as Jayden's are. It can be very dangerous. Thank you for your prayers and kind words. Until next time.....Love and prayers, The Correa's