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