JAYDEN IS BACK!

Jayden's personality is back! Let me explain.....over the past few weeks we have noticed that Jayden hasn't been himself. He quit making eye contact and was having an extremly hard time doing any kind of physical activity. It was as if he had no opinion about anything. Last Thursday I took Jayden to see Dr. Jen (pic of her and Jayden) to have his VNS (Vagus Nerve Stimulator) turned up. It hadn't been adjusted since he came home from having the surgery back in August. Literally within minutes Jayden came back to life!

He is doing awesome! He is even trying to push weight through his arms to get in the crawling position, with minimal help from me ofcourse. But the fact that he tollerates that position is huge. Now Jayden can look right at me and smile. He is much more aware of his surroundings and I can't tell you how happy we are. I went to bed crying every night during those horrible weeks because I was afraid my lil guy was gone. But he just needed to get his VNS ramped up. We are going to start ramping it up once a month from now on until we hit a desired mark.

Another part of the problem is that Jayden is getting to be a big boy! He's gained 4 lbs (weighing in at 30lb 4oz) since surgery and his head is bigger too! Now he just needs to adjust to his size and hopefully we will see even more improvements. Jayden has also started taking Juice Plus, thanks to the Donlin Family. Juice plus is a suppliment that lets Jayden get lots of nutrition even though his eating isn't very well. He still is unable to chew food but eats 3 meals a day, always things that are smashed up. Now I don't have to worry because he is getting his fruits and veggies in and he likes it!

We hope you are all doing well. Thanks for keeping up with us.

Love,

Brandy

~~MERRY CHRISTMAS FROM THE CORREA'S~~

From our Family to yours have a Merry Christmas. As this year comes to an end I can really say that our family has been truley blessed. It's been a long year but we're all doing fine. This year my Mom was diagnosed with breast cancer, went through 6 months of chemo, had major surgery, and is beginning radiation. Jayden was having out of control seizures lasting up to two hours, 3 helicopter rides to UCSF, 2 surgeries one for a port the other for his Vagus Nerve Stimulator, and more ER visits than I want to count. But now since the VNS is making slow gains and his seizures are manageable at home. I've become his personal nurse. My husband has worked 7 days a week for almost two years now. Andres and Jeana stayed busy with football and cheerleading. Andres' team actually won the Superbowl! And Jojo has been learning at an awesome speed. I guess that has summed up this past year, the good the bad and the ugly. We are looking forward to 2007. So we wish you health and happiness in the new year. We couldn't have got through it without all of you.

Jayden & Jojo, what a pair! Jojo is really good with his baby brother. He still thinks Jayden is a baby and doesn't question why he doesn't crawl yet. He seems to be protective of him and likes to sing to Jayden. Jayden follows Jojo with his eyes all day long. Trust me, Jojo makes his presence known wherever he is.

Jayden 15 Days Without A Seizure!

Christmas Greetings to everyone. I hope you are all taking in the true spirit of Christmas and not getting too caught up in the hustle and bustle. Jayden went a whole 15 days without a seizure, this is wonderful news. This morning he had a 10 minute seizure that required a little bit of medicine. But he is recovering nicely, a little tired and wiggly but still smiling. He hasn't gone that long without a seizure in a very long time. Jayden continues to have therapy every week. Right now he is in desperate need of Speech therapy to help him learn to chew. He eats 3 meals a day all consisting of foods that are smashed up because he doesn't chew. I worry about him not getting the nutrients he needs because of what he eats. His Pediasure is no longer being paid for and I can tell he's thinning out a little. You would think getting the services Jayden obviously needs would be simple. But for some reason everything seems to be a battle. Good thing for Jayden I'm not afraid a little combat. I'll take on anything for this little guy to assure he has the best shot at life possible even if it means fighting every step of the way.

Crazy Blogger

Well incase you haven't figured it out I am notorious for publishing my blogs out of order. I try to sit down and write my lil blog in peace and quiet without any interuptions. Yeah right, not in this house. So please forgive me if they are a little hard to follow. Thanks for keeping of with the Correa Clan. I hope you all sit back this week and think about all you have to be thankful for this year. I do this on a daily basis. My Mom is doing well, Jayden is stable, and the rest of my family is healthy and happy. What more could I ask for? Have a Happy Thanksgiving. Love you all, Brandy

Doesn't Jayden make a cute Eeyore? Unfortunately Jayden had a seizure at the hotel on Saturday morning. I had to give him meds this time to stop it and it made him sleepy for the rest of the day. The good news is he perked up for his birthday. He spent most of the day in the car but he didn't mind. What a trooper!

There was alot for Jayden to look at, the entire park was decorated for Christmas. It was such a beautiful sight. Jayden even got to go on some rides. Pirates of the Carribean, Snowhite, Pinnochio, and It's A Small World to name a few. He seemed to enjoy every minute of it. He was content to look around and take in all of sights. He even got a kiss from Minnie Mouse!

~The Correa's Take On Disneyland~

Andres, Jojo, and Jeana Last Thursday this family set out on an adventure. Thanks to Grandpa Joe we were able to take a family vacation to Disneyland. We drove...with 4 kids......all the way to LA.....am I crazy or what?This picture was obviously taken at the beginning of our drive there. As you can see they are smiling but after a few hours the smiles turned into, " Your touching me stop touching me! Are we there yet? Where are we now? Tell Jojo to stop doing that!. My sister Lori was gracious enough to go with me while Jose stayed home to work. She had no idea what she was getting herself in to. This is one rowdy bunch!

I'm A Big Kid Now

Jayden is a big boy now! Yesterday was Jayden's 2nd birthday. Jojo told him that now he has to crawl! And I agree! 2 whole years, I can't believe it. It has gone by so fast and we've been through so much. All I can say is that I am grateful for all of you who have kept him in your prayers, thank you so much. There have been so many people in and out his this lil guys life and I am thankful to have met such wonderful people who always had kind words and lots of encouragement and advice. I look forward to another year of learning and goals met.

This is Jayden wearing his very special birthday hat from Disneyland. When we got there he got a pin that said, "Happy Birthday Jayden". As we were walking all around Disneyland people were wishing him a happy day. I thought that was pretty special.

~With God All Things Are Possible~

As most of you already know, it has been a very difficult year around the Correa household. Jayden has had frequent hospital visits with two surgeries. And last March my Mom was diagnosed with breast cancer. When she was first diagnosed she was already at stage 3. Our whole family was devistated when we heard the news, afterall it's only been 5 years since we lost our Dad to colon cancer. We knew we had a long road ahead of us. She began chemo treatments last April to shrink the tumor before they could operate. She lost her hair, she was tired, food didn't taste the same but she never complained. Infact she worked FULL TIME through out this whole ordeal. Last Wednesday she had a mastectomy. We have been waiting for almost a week for the pathology report to come back. This morning my Mom went to the Dr. to have her drainage tube removed and we got the results........ NO CANCER WAS FOUND!!! Praise God! Just when I thought my world was crashing down around me I hear the most wonderful news in the world. My Mom is at this moment cancer free! Thank you so much for all of your prayers. She is the strongest lady I know! Thank God she's my Mommy.

Isn't Jojo a cute owl? He was running wild through the entire pumpkim patch. He really liked feeding the animals. Jeana and Andres had fun too. Here they are on a couple of "Hay Horses".

Our First Trip To The Pumpkin Patch

Yesterday Jayden took his first trip to the Pumpkin Patch. My cousin Stephanie has a home daycare and we decided to be adventurous and take a whole bunch of kids on a little field trip. The weather was nice and the kids really enjoyed themselves. They each picked out a pumpkin to take home.

Here is Jojo dressed in Andres' Trojan uniform, he's a Trojan in training. Jayden will be turning two very soon can you guess what he likes? Yup you guessed right, ELMO. Jayden loved sitting in this elmo chair. I think it's on his wish list haha. Look out Jojo, Jayden is almost as big as you!

Go North West Trojans!

We have been going to Andres and Jeana's football games every weekend. Jayden absolutely loves to be outside. Game days are very long days but he loves every minute of it. Jose is usually working so my Mom goes with me. We are so proud of Jeana and Andres. Not only are they staying busy with football and cheerleading but they are getting wonderful grades too! Keep up the hard work kids! Go Trojans!

VNS is AWESOME!!!

Hello everyone! We have prayed and prayed for God to send a miracle to help Jayden gain better seizure control. On August 15, 2006 God answered our prayers. This small device called a Vagus Nerve Stimulator has proven so far to be our lil miracle. Jayden had a seizure this past Tuesday that was 4 minutes long and developed a small cough which is probably why he also had a seizure this past Thursday. Hang on to your seats.... this last seizure was only 2 MINUTES LONG!!!!!! Yup, that's a record for Jayden. No meds!!!! Just his handy-dandy magnet (my new best friend) From what I have read and what people have told me, Jayden is having an exception reaction to the VNS. Most people don't see any kind of results for up to 6 months or a even a year. I saw results as soon as they turned the VNS on. Since then he has been more alert and making small gains all the time. He's a very very happy boy! A big boy too, as of last Tuesday he weighs 29lbs 9oz and 36 inches.

~The Sky Is Falling!~

Isn't that what Chicken Little said? Well check out the new Chicken Little. Isn't he cute? Hi everyone! I just wanted to let all of you know about Jayden's progress. He is doing great! Jayden's last seizure was a week ago and stopped without any meds!!!!! YIPPEEEEE! We are so excited because he's never had a seizure that stopped on it's own. This seizure lasted about 7 minutes and all I had to do with swipe the magnet to his VNS and he came out. His seizures are still about a week apart or so but are much shorter than they use to be thanks to the VNS. Jayden continues to shock us all. He is now getting his butt in the air and bearing weight on his elbows and rocking. We are on our way to crawling!!!! He makes great eye contact with everyone who talks to him. He is desperately trying to talk to us and make his presence known. He likes to listen to music and tries to sing along. He is taking steps in his gate trainer without us having to coax him along. And what a great eater!!! I am so happy with his progress and am certain that he will continue to make gains slowly but surely. Every little thing he does his huge to us. Thanks everyone for keeping him in your prayers. We love you all! Brandy

Daddy let Jayden where his hat! This was just before surgery and he was still smiling :)

This is our favorite nurse this time around Kali. She was so good at making me feel comfortable enough to leave Jayden alone with them. Thanks for everything Kali!!

There are so many people to thank. Nina Anne, Honey, and Teacher Becky thanks for coming up there and praying for me. And thanks for the goodies too! Pastor Mike your a trooper thanks for the visit. I wish I had taken a picture of it. Stacey our child life specialist your awesome I love the scrapbook. Winnie Jayden must of liked you best since he performed for you each time he saw you LOL. Dr. Perry and the rest of the team, your the best. Abbie thanks for listening to me and giving me advice. HUTCH you are AWESOME! Thanks Little Wishes for the Radio Flyer, that program is wonderful for the kids. Thanks Simmer family for visiting and being there for me. Thanks Erica and Moe you got lost but you made it! Thanks Grandpa Joe, Renee, Mamaw, Aunt Lori and everyone else who helped with JOJO and the rest of the gang. Thank you Tessa for playing BINGO for Jayden. Brittany you are a soldier as well, hang in there I am sure we will meet up again. Jamie Severson you really go above and beyond, thanks for thinking of us. Barbara Case you were always thinking of us and helping things go smoothe. Social workers are AWESOME! Aunt Linda and Uncle Gary you have lifted a weight off my shoulders thank you.

Mamaw and Aunt Linda came to visit me!

Most of all thanks Jen so much for taking Jayden on. I know he will be one kid you'll never forget. We appreciate you! And everyone else I didn't mention. Thanks so much for all of your prayers and phone calls. I couldn't have made through without you. Jayden is my Lil Soldier (thanks Brittany) he is stronger than anyone person I know. He pushes us through each day and I thank God everyday for trusting in me enough to give me this special lil guy.

Love,

The Correa Family

While we were at UCSF we had a very special visitor. Jayden's girlfriend Jacy came all the way from Arizona just to visit him. We have yet to get a picture of these two while Jayden is actually awake. Jody, Jacy's Mom was a life saver. She came straight the hospital and brought snacks and caffiene. She also treated me to a massage at a salon in SF. Thanks Jody your the best!

This is Jayden with his crazy hair and his favorite doll named "Larry". He is named after his real lil buddy Larry C. who has been his roommate more than once at SF.

Check out those cheeks! What a cutie pie!

When Jayden first got to the PICU at UCSF he was intibated. Jayden got to ride in yet another helicopter while Mommy drove like a crazy woman to meet him there. By the time I got there he looked really puffy. I was really scared because I had never seen him like this and I hope I never do again. Thankfully he was extabated about 12 hours later. Trust me it was a long 12 hours. And when he woke up and was able to sit up in his chair I was soooo excited! The next night day was Jojo's 5th birthday party and I was so bummed not being able to be there. But thanks to all of you his birthday wasn't ruined. Thanks so much for helping out. The Neuro team headed by Dr. Jen Armstrong-Wells and Dr. Hutchinson (Hutch) got the ball rolling quickly and came up with the plan to go forward with the VNS surgery. They fell in love with this kid, what's not to love? Hutch made sure to come by and show love everyday and Jen bought him some new Pj's for the long hospital stay. The first test they did was an EEG. An EEG is where they placed leads on his head and monitor his brain waves. When they place the leads they use this gel which leaves his hair sticky. Mommy got bored and decided to give Jayden a new hairdo. I thought it was cute. What do you think?

JAYDEN AND HIS VNS

Jayden has been home for a little over a week now. Despite having 3 relatively short seizures since his surgery, nearly 2 weeks ago, he is doing great! This is the toughest kid I know! For those of you who don't know the whole story........ Jayden was flown to UCSF on July 29th after having a seizure that lasted 2 hours. He was admitted in to the Pediatric Intensive Care Unit and remained there for a total of 3 weeks. It was very clear to the Pediatric Neurology Team that Jayden was running out of options as far as medicines go so they decided that surgery was the next step. Jayden had surgery on August 15th to have a Vagus Nerve Stimulator placed. The goal of this treatment is to decrease the number and severity of seizures while minimizing the drug side effects to increase the quality of life for Jayden. How does it work? The Pulse Generator (battery) delivers small amounts of electrical current to the Vagus nerve intermittently (30 seconds on 5 minutes off) Jayden doesn't feel a thing. This goes on 24 hours a day 7 days a week. We don't expect to see results right away. Infact, the VNS tends to work better the longer it is in. So a year from now is when we should start seeing our best results. As far as I am concerned it is already helping. I can't even remember the last time Jayden has a 5 minute seizure. Even if the seizure don't go away completly (I don't expect them to) I will be happy if they are controlled enough for me to take care of Jayden at home:) Dr. Perry was the Neurogsurgeon who took such great care of Jayden. Thanks Dr. Perry and Caroline and the rest of the team for taking such great care of Jayden. He's healing nicely.

3 In 1

That's 3 seizures in 1 week. Last Saturday while we were visiting with family Jayden had a 22 minute seizure. He had a 20 minute seizure yesterday and a 5 minute seizure today. He's kind of had a small cold that started on Monday which may or may not have triggered them. Luckily for us I didn't have to call an ambulance but was able to control them at home. Nonetheless 3 in 1 week is alot. I have to take him for his labs Friday morning and expect for the Dr. to call me sometime tomorrow to let me know if they feel I should go up on any of his 3 meds daily that he is already taking. On a lighter note, yesterday before the seizure I was working with Jayden trying to get him in a crawling position with his butt in the air. He actually pushed up with his arms!!!! He didn't hold the position for more than a couple of secnds but that was a HUGE accomplishment for him. I am really determined that he is going to crawl one way or another. He really gets mad at me when I work with him but I try not to work him too much at one time. I don't want to discourage him. I still pray everyday that God will heal him and take away those nasty seizures. It's hard not to get discouraged. I can't imagine this little innocent child having to go through this his entire life. But he's strong and he'll be fine! Thanks for your thoughts and prayers. Love, Brandy

Another Trip To The ER

Last night Jayden had a seizure requiring me to call 911. Fortunately it only lasted 20 minutes and stopped shortly after arrival. Jayden is doing well and recovering quite quickly. Today we took a trip to San Francisco to meet our new neurologist Dr. Jennifer Armstrong-Wells. She has some huge shoes to fill but it's still early. We discussed Jayden's care and how things have been going. She will be working on scheduling a MRI soon. We may or may not see anything yet (a cortical malformation that is causing the seizures) but I think it's worth a try. My Mom had her 5th set of chemo today. I was actually suprised they went ahead with the treatment considering how low her blood count was. She's doing well just a bit tired. Her tumor has shrunk rapidly. We are very pleased with her progress. I will personally talk to her doctor tomorrow morning and update everyone. That's all for now. I hope everyone had a blessed 4th of July! Love, Brandy

***Happy 4th Of July***

I hope everyone is enjoying 4th of July. It's a time when we can get together with family friends and discuss many things thanks to the soldiers who fight for our country! Let's all celebrate! Jayden and I will be celebrating with a BBQ at Tia Rosa's and Uncle Jim's house. The kids are really excited about the fireworks. I can't wait to see what Jaydent thinks. I am not sure he will be thrilled about the noise. Saturday Jayden had another seizure but praise God it was only 10 minutes long and we didn't have to call 911. That is a true blessing. He has already recovered from it. Our friend Becky Mizner and her husband Jim have been really busy these days. She recently met with President Bush who thanked her for all of their efforts with "Packed with Pride". They,along with volunteers, pack boxes and send them to the soldiers who are fighting for our country. This great effort is all done in honor of their son Jesse Mizner who died in this war. In just a few months they have the honor of going to Kuwait to visit the soldiers there. When I asked her if she was nervous to go she said, "No way. I am excited! I can't wait to see how many soldiers I can hug and tell thank you." Isn't that awesome! They are sending her there so the soldiers can thank her but she can't wait to thank them. Becky is one Mom I really look up to. Thanks for supporting our troops and thanks to the Mizners. God bless everyone. If you would like to make donations to packed with pride please visit the website at http://packedwithpride.com/ Brandy

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.