Jayden's First Lightning Football Game

A man name Armando Moreno read Jayden's story in the Stockton Record a few months ago and it touched his heart. He contacted the reporter who put us in contact with each other. Armando said he felt compelled to do something nice for our family. He asked me if Jayden liked sports. I told him he sure did. So Armando contacted Mr. Arnaiz who's company has season tickets in a suite at the Stockton Arena. He offered our entire family tickets for their suite to the opening night of the Stockton Lightning Arena Football team. With Jayden in a wheelchair and growing bigger everyday it is getting harder for us to take him to certain events without making special arrangements. We had a great view of the field and the big screen was right in front of Jayden. He was very alert and looking around up until the last period when he fell asleep. How he could fall asleep with all that noise is beyond me. My kids were especially excited because they got to bring their cousins with them. Everyone had a great time. It was a special night and we are extremely grateful. Thanks Arnaiz Company and Armando for making it happen.

Jojo my little baseball player

Jojo is my little athlete. He just finished basketball, now we're starting baseball, and we already signed him up for football which starts in June. He wasn't looking forward to baseball this year because he thought he was going to have to hit the ball off a tee. That was no fun. He was too advanced for that and last year he was bored. But when he found out that they had an actual pitcher and you could strike out or hit the ball and get a double; he was very excited. If my Dad was here he would be so proud that his grandson is the starting shortstop and lead off hitter for the Stockton Pony Giants. Jose doesn't have the patients to teach him all the fundamentals so he put me in charge. To my surprise Jojo actually listens to me. I was practicing with him before the first game and he got a basehit. He's still learning though. He doesn't always cover 2nd base when he is supposed to, and he learned the hard way what "rounding first base" meant. But other than that he's having a blast. He plays 2 games a week. I even got a Giants shirt and hat for Jayden to wear to the games. Unfortunately it has been either too cold or too windy for him to go to the park. Jeana and Andres take care of him at home. They are a great help.

So Proud Of My Husband

Since Jayden was 2 months

I have always been the one who took care of all of his special needs. I gave him his medicine, his bottle, his food, his baths, and did my best to control his seizures. And although Jose may never be able to ALL of these things we have found something he can do. Since Jayden got his g-tube Jose has learned to how to feed him. He is very interested in all of Jayden's meds and how much he gets and how often. He knows how to prime the tubing, set up the pump, and even draw up his meds. Jose was nervous the first time but now he can just jump right in and take over. It's been really nice because Jose is very confident at taking care of Jayden while I go to school or go study with my friends. It used to be that I couldn't even go to the grocery store all by myself. Now I am able to do so many more things.

With the economy the way it is Jose hasn't worked very much in the last 4 months. This has actually been a blessing in disguise. Because he has been home more he has been there both Jayden and I while Jayden was sick and in the hospital. He was there when Jayden has his surgery at UCSF. For the first time he got to see the whole process. He has been so much more involved than I could ever imagine. I am so proud of him and how far he has come. And with perfect timing next week Jose is starting back to work. The jobs have picked up and he is more than ready. He's been a little restless at home. God has a way of working things out. We are grateful to Him for all of our blessings. I am especially thankful for my husband and all his love and willingness to learn.

Learning About The G-tube

Learning about the g-tube is simple in some ways and more difficult in others. I was a little nervous at first because I knew that touching the g-tube would hurt because it was so new. They literally poked a hole in his stomach. That's got to hurt! But after Jayden's nurse took the time to teach me how to take care of it and how to push meds through I felt very confident. My Mom and my niece Erica came to visit Jayden at UCSF. Erica took pictures of the nurse giving me instructions.

The small clear thing in the middle of his stomach is the g-tube. To use the g-tube I attach a piece of tubing to it which allows me to either feed him his pediasure via a pump or use a syringe to give him medicine or water. Every child is different and can tolerate the feeds at different rates. We are still playing with Jayden's feeds. Ultimately it is up to me to figure out how much and how fast Jayden can tolerate the feed. It's a work in progress. The coolest moment was when the nurse gave his meds through the tube for the first time. He didn't have to taste that yucky stuff and that was awesome!

We are home!

This is Jayden when we first arrived at UCSF before they started messing with him. He had a sleep study done there and luckily all is well and he no longer needs to be on the concentrator at night. What a relief! That's just one less piece of equipment around here. I am running out of room! I was very suprised to see all of the stuff a sleep study entailed. He actually slept really well considering all of the things he was hooked up to. Before his surgery his Neurologist Dr. Sullivan stopped by to say hi and see how Jayden was doing. His seizures have been the same for awhile now. Nothing was new to report to him.

A representative from Child Life at UCSF came to visit Jayden and see if there was anything they could do to entertain Jayden. They typically brings toys or books to the kids and help them understand procedures that they are about to go through. Jayden got a bubble machine that he could control with a switch. That was pretty fun! The bubbles were everywhere! Jose showed up bright and early Friday morning and brought Jayden's doll Larry. Jojo sent it with Jose so that Jayden wouldn't have to go to surgery alone. The nurse was even nice enough to give Larry a name tag so he could be there with Jayden. I thought that was really sweet. Dr. Ree, Jayden's GI, was very nice and explained the procedure in detail to us. Although I was apprehensive I knew that Jayden was in good hands. Jayden did very well in surgery. Everything went as planned and the g-tube was placed high enough as not to affect him wearing really cute clothes. You know that is really important. LOL. Jayden stayed in recovery for a couple of hours while he woke up on his own. But the minute we went back to his room I knew something was wrong. He spiked a 103 fever and got really bad chills. He was screaming and was in lots of pain. They gave him morphene and tylenol right away. Then decided that he needed to have an x-ray of his stomach to make sure that everything was in it's place. This was just a precaution, they were concerned about the fever. The x-ray came back normal and they just decided to hold off his feeds for a little bit longer. By Saturday afternoon we began to give Jayden 1 ounce of pedialyte per hour. He tolerated this well and we were on to pediasure. By Sunday he had tollerated 2 feeds of pediasure and everyone felt confidant that I could take him home and take care of him. I wanted to get home as quickly as possible, afraid that the longer he was there the more at risk he was for getting sick by someone else. We are home now, adjusting to a new way of life. The feeds are taking longer than I expected. But I am told that as he gets used to it the time will decrease. He is still in pain, a little whinny from time to time. But that is to be expected. He is my little trooper! It amazes me how fast he is able to bounce back. We are just going to take this adjustment one day at a time. God is good, He made Jayden well enough for this surgery and brought him home safely. I am grateful.