Devistating News!

Yesterday was a bad day. I took Jayden to UCSF for an extended EEG. It's kind of a long story but let me back track so you will fully understand. A couple of months ago I started noticing that Jayden was doing something new. Every so often he would put his head down, throw his arms out and stiffen up. This would only last for second or two and at first would happen maybe once a day. But as time went on these "shocks" as I call them began to come more often. I also noticed that the "shocks"didn't occur until the first time the VNS was adjusted after surgery. At first I thought it might have something to with the VNS. After ruling that out I was completly stumped. I let the docs know and it didn't seem to concern them at the time. So as usual time went on and the "shocks" became more often. Until two weeks ago today I decided to count them, 30 times I counted on that particular day. I started to become more and more concerned. Well my worst fear was confirmed yesterday. Jayden has developed Infantile Spasms. These spasms always occur in an infant (less than one yr old) but ofcourse Jayden doesn't do anything textbook and these docs are even more stumped now than they were before, if that's even possible. There is nothing good about the prognosis. These spasms cause severe brain damage. Those of you who see Jayden know that over the last 6 months he has lost many skills. He is no longer able to sit, hold his head up, roll over, and I fear the worse is yet to come. If he deteriorated this fast in the past 6 months what do we have to look forward to? I am really having a hard time right now and I would really appreciate prayer for my little Angel. Each day that I have him is a gift from God. I am desperately trying to keep my head up and think positive but it is very difficult. Jayden will be admitted next Wed to UCSF so we can start giving him ACTH (steroid) which I will learn to give him injections daily. As if this poor kid hasn't gone through enough:( We hope and pray that this injection will stop these little seizures that he has having every single day. The docs said they have never seen this happen before, a kid this age developing spasms like this. Especially after having such an extreme seizure history.The VNS is still working to hold of those long seizures but now we have something new to worry about. Please keep us in prayer.

Brandy

Jayden and Jacy Andres and Jacy Our future is so bright we gotta wear shades!!!

Jayden & Jacy

Aren't they adorable? This past weekend our favorite little girl turned 2! And we were there to see it! We drove all the way to Arizona for a short 2 day visit. It was worth every minute we spent in that car. My Mom, Andres, Jojo, Jayden and I set off on an adventure. Jeana decided that 12 hours in the backseat with Jojo was little more than she could handle. Everyone there was so excited to meet us and had already heard alot about Jayden. Jacy was so cute! She called Andres "boy", Jojo was "Jojo", and Jayden was "My Baby". She kept giving Jayden kisses every chance she got. Her smile was so bright and her personality was sweet as can be. Every time she would walk past Jayden she would acknowledge him in some way, either with a kiss or by talking to him or touching him.

This trip was very special because it was the first time the Simmer's have seen Jayden out of the hospital and awake. We have tried to meet up before but Jayden ended up back at the hospital knocked on with lots of meds. This trip was wonderful because he was his perfect little self. NO SEIZURES! WE can't wait to go again. Thanks Jody, Jay, and Jacy for being such wonderful hosts.

Epilepsy Conference 2007

Last week Jayden and I were invited to the Epilepsy Conference at UCSF. His Neurologist Jen Armstrong-Wells asked me to speak on Jayden's behalf. The topic was VNS ( Vagus Nerve STimulator). Jayden had the VNS placed last August and it has truley increased his quality of life. Basically I talked about how much shorter the seizures are now that he has it, quicker recovery time after seizure, no more frequent ER visits, and NO MORE DIASTAT! UCSF has a very small population of VNS patients. The reason for this is because the Neurologist are skeptical because there is no proof of how this thing works. We don't know why it works but it works. I am very excited because Jen emailed me to let me know that we made BELIEVERS out of them!!! YIPPPEEE!!! This procedure should've been done alot sooner. Jayden seized out of control for over 8 months, trip after trip to the ER. Since the VNS was placed we have only called 911 three times. Two of those were because he had a high fever. I can only hope that the VNS will be used more often now at UCSF. Thanks Jen for asking us to come and be part of the conference.

We Have New Friends

This past summer when I took Jayden to Stanford for a second opinion on his movement disorder we met some special friends. I was sitting in the waiting room when Kerry approached me and asked me about Jayden. She has a daughter named Maddy who has a metabolic disorder. We exchanged emails and just recently got in contact with each other. Kerry and Maddy live in Manteca which is the next town just south of us. When I make my way to Manteca for doctor appointments we always have lunch. I think this is the beginning of a wonderful friendship :)

Fighting Phnemonia

MUAH! Love that boy! Last week Jayden had 3 seizures on Tuesday and we ended up calling 911. After blood work and x-rays we found out Jayden had phnemonia. He spiked a fever of 102.5, never good news for a kid with epilepsy. After lots of antibiotics and breathing treatments Jayden is recovering quite well. He had the chills so bad it scared us because he was screaming and crying. Jayden NEVER cries. But as you can tell Jayden gets lots of sympathy here. He is still wheezing a little bit but no complaining. That's my boy!

The Correa Bunch

This is my family...Jeana 13, Andres 12, Jojo 5 and Jayden 2. Aren't they cute? It's not often that I can get this whole bunch together and smiling at the same time. These kids have become experts on Epilepsy. You can ask Jojo what to do when Jayden has a seizure and he can tell you step by step. He even knows how to call 911 and what to tell them about his brother. Pretty good for a five year old. When they first saw the seizures they would cry and get upset. Now they bust into action. While one of them is running to get the oxygen the other is looking at the clock and observing the details. They know that I write down all of Jayden's seizures and they make sure I get it right.

Swallow Evaluation Today

Today I took Jayden to San Joaquin County General to have a speech therapist watch Jayden eat and drink. The point of the visit was to determine whether or not Jayden would need therapy to help him learn to chew. Jayden did AWESOME! She was very impressed with him. He ate his yogurt like a pro! But when it came to drinking his milk from his bottle he coughed a little too much. This is concerning because we don't want Jayden to asperate. He had a good strong cough and was able to clear his air way. Jayden needs to drink things that are thicker than normal. Milk by itself with nothing in it is a challenge at times. Water is really difficult too. The therapist said she has high hopes for him that we can teach him to drink from a sippy cup! We are ready and willing to work really hard to achieve this goal. I am so excited! He is getting a little BIG to be drinking from a bottle. So now the waiting game begins. She writes recommendations, insurance reviews it, APPROVES it, and then we can start working toward our goal.

On A Mission To Find Jayden

The past couple of months have been really tough. Jayden who 6 months ago could sit on his own for up to 5 minutes has lost that skill. Six months ago he had great head control but doesn' t now. I have the video to prove it! I have been racking my brain trying to figure out what I can do to help him. He has the most caring therapists who continue to work with him even though it must be frustrating to see him regress. When I approached his doctors with my concerns they assured me that since he had grown so much since his VNS surgery he was probably having a hard time adjusting to his size. Well another month has gone by and really there aren't any changes. I have been so frustrated! Going to therapy nearly brings me to tears because I know he is capable of doing so much more. Last Friday I took Jayden to UCSF to talk about adjusting his VNS. We thought he might be having some side effects. Jayden's VNS is now programmed to stimulate his brain every 3 minutes instead of 5 minutes. After talking to Hutch we decided to start taking him off some of his meds. Before he was taking such a high dose of his tranxene he was doing much better with his motor skills. I am both scared and excited at the same time to see what happens. I am hopefull that the VNS will do it's job and we can get rid of these meds that are drugging my little boy and making him loose his cute personality. I am so sick of hearing people tell me how tired he looks. He's not tired! He's drugged! Today was his last day on Ativan YIPPEEEE!!!! My goal is for Jayden to only have to take his Keppra! The best thing about that is Keppra has the least amount of side effects in comparison with meds he has been on in the past. So keep your fingers crossed and say an extra prayers for my little man. We couldn't have made it through the last two years without all of your prayers and support. Thank you from the bottem of our hearts.

love,

Brandy

My Heart Belongs To Jayden

Taking pictures with this kid is beginning to be a challenge. More so for me than him. I have to explain that he can't sit up and pose the way they want him too. The photographer looks at me like I am crazy. I have to make sure I have lots of patients and remember that before I had a child with special needs I would've looked at this precious baby boy and wondered what was wrong. I need to get rid of that chip on my shoulder that I sometimes carry. Jayden holds the key to my heart!

Breast Cancer Survivor!

As most of you know my Mom has been battling breast cancer this past year. She just finished Radiation and is offically a survivor! Praise God! She has been so strong through this whole thing. Never complaining, saying if Jayden didn't complain she couldn't either. She worked full time the entire time. The hardest part for her was right here near the end when she suffered from a blister that popped under her arm from the Radiation. Mom we love you and we're so glad your a survivor!

Our First Hockey Game

Andres, Jojo, Jayden, and I went to our first hockey game together. It was a special occasion, my nephew lil Paul's birthday. We had alot of fun. Jayden was very interested in all the noise and lights.

Jayden's First Haircut

Jayden is 26 months old and got his very first haircut. Look how handsome he is! He was very patient. Special thanks to Kim for letting us come to her house instead of the salon. My baby is becoming a big boy .

Mommy Flushes My Port

Jayden has had a port that is placed under the skin since last May. When he first got the port his seizures were totally out of control and it needed to be accessed at least once a week. UCSF trained me to access Jayden's port as needed to give the hospital IV access for meds to help stop seizures. Since his VNS we haven't had to use the port as often. But boy are we all glad he has it. Today marks the 4th time I have had to flush it at home. Every 30 days, if the port hasn't been accessed at all, I have to flush it with heprin. This keeps the blood from clotting. This pictures shows Jayden with the needle in patiently waiting for me to finish. He's a good sport! Big sister Jeana helped me by holding his arms down. And don't worry, it doesn't hurt because Mommy puts numbing creme on it first. Isn't it amazing how we as parents do what we have to do to help our children? I never would've thought that I would be doing all these things.

Back But Not For Long

The first couple of days after Jayden's VNS was turned up were AWESOME! But this picture shows you what Jayden's favorite position is these days. I know he is capable of doing many things but I can't decide if he's being lazy or just can't do the physical things because of his size. He's grown quite a bit in a short period of time. I have been working him extra hard these days trying to get him to have better head control. I am confident that when I take him in February to have his VNS turned up again we will see more progress. Meanwhile I will enjoy all the cuddling I can.

- Add a Note - Get Your Own

- Get Your Own

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