Not much change.

Things are staying about the same for me this week. I'm still having
good days and bad. The bad days that I refer to are still good
compared to before steriods. A good day now consist of 30 or fewer
spasms and a bad day about 60. I'm still learning news things. I
learned to take toys out of a bucket and how to put them back in. I'm chewing my food much better. I'm
very happy and alert. I'm having more seizures than my family wants
but we are satisfied with the amount of progress I'm making so
quickly. Its still too early to say if the new medicine is working.
All it's doing right now is making my mom a nervous wreck. She said
when my brother burned his hands there was a little girl in the
hospital room next to him who had gotten burned from taking lamictal.
So she has seen what this medicine can do. Please pray that I continue
to make progress and that my seizures don't increase. My brain needs
for these to stop.

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Neuro appointment

We had a great appointment with our neurologist today. We are going to make several changes in the next month. The first thing we are going to do is lower my banzel medicine. The last couple of times we increased the dose, it didn't help the spasms. We are going to decrease it to a more reasonable dose for my weight and age. She said that alot of these drugs reach their maximum potential and do not work past that. Basically we are going back to the banzels maximum potential. We are also starting a new medicine called lamictal. It will take 2 months to get on the appropriate dose of lamictal. We decided not to go with zonegran since it is in the same family as topamax. Topamax did not help me so we decided lamictal. The main side effect of lamictal is a rash. If I get a rash and continue to take the lamictal it could burn my skin. So we have to be very carefully with this new medicine. Since I get rashes very easily, we are asking everyone to not wear perfume and make sure you wash your clothes with all free and clear if you are going to be around me. This is only for about a month or two until we know I'm not going to get a rash. No we aren't being overly protective, we have to make sure the rash is due to the medicine and not perfume. We are going back to see my neurologist in another month. At that point we will see how I'm doing. We will then start to wean vimpat since it hasn't helped much. We will also decide if we are going to do a round of high dose IV steroids. If we do this, I will be in the hospital for 5 days. My neurologist was impressed with how much the prednisolone helped this round. You see that was the first medicine that we tried and it didn't touch the spasms the first round. She also said it is a very low dose of steroid compared to the ACTH that I had in the beginning. In all reality it shouldn't have helped as much as it did and it helped tremendously. So she is thinking that we might can knock these spasms out with a high dose of IV steroids. She wants to give my body time to recover from prednisolone before we give more steroids. She said the reason I can't stay on steroids for a long period of time is due to all the side effects. Just a few are shrinking of the brain, fluid in the brain, diabetes, high blood pressure, wiping out your immune system, and bone weakness. As you can see we spent a long time discussing our new plan. I'm very satisfied with the new plan. We just have to wait and see now. Overall she was very impressed with how well I'm doing. I say it all the time but its totally amazing what I"m doing compared to all the seizures that I have on a daily basis. Notice my shirt in the picture. I will definitely stay strong, I will fight, and I will win!!! Thanks for praying for me. Your prayers are helping me become a miracle.

The steriod wean has begun.

We have started to decrease my steriods. I'm only getting them 3 times
a day right now. Tomorrow we wean to 2 times a day. My spasms have not
increased any. I'm having about 30-40 a day. They are not very
intense. So the steroids have helped me alot. My therapist have even
noticed how much stronger I'm getting. I haven't had any side effects
either. My blood pressure has been fine, I haven't gained any weight,
and I'm definitely not irritable. In fact I'm much happier. We don't
know what the plan is from here. I go see my neurologist Monday so we
will see what she says. Please pray that we will find the right
medicine to stop these things with few side effects. I have shown so
much potential these last 3 weeks. It's so sad that we can't stop
these and allow my brain to work correctly. Keep praying everyone.
Your prayers are working. I'm doing much more than expected.
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The start of week two on steriods.

I slept all night last night. Yes all night!!!! I'm having anywhere
from 40-60 spasms a day. Still way to many:( I'm doing several new
things though. I'm saying ma not mama but ma. Mommy said that's good
enough for her. I'm also saying hey. We were eating at a restaurant
today and someone walked through the door. I immediately said hey. I
leave the y sound off but its still great news that I'm learning new
words. I've definitely perfected da da and bye bye. I say those
several times a day :) If you ask me where is Mickey mouse, I look at
the tv and laugh. I've learned to push myself to the sitting postion
from my tummy. So we really aren't where we want to be with seizure
control but we are very excited about the new things I'm doing. Please
pray that we can get better control. We have cut these spasms in half
with this steriod and look at the new things I'm doing. Mommy says she
can't tell you how frustrating it is to know the potential your child
has and to have to watch the seizure monster take that away. We just
have to be thankful that I'm developing, even if it is slow. We also
have to believe that one day we will get control of these. I'm a
fighter and I will win in the end.
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Stronger

This is a picture of me digging in the wishing well with my brother. I
stood there and played for a very long time. Some of the side effects
to steriod are weaker muscles strength and irritability. Well i'm
stronger, happier, and sleeping better. Yes I know it sounds crazy but
we are asuming the steriods are decreasing the seizure activity so
much that my brain can focus better and rest. I'm having about 50
spasms a day but they are mainly when I first wake up and then a few
here and there. I look so much better. Everybody that sees me says how
good I look. We are still praying that the spasms continue to
decrease. Please continue to pray for me!!!

Steriod update

Day 2 of steriods and I'm already doing much better. I'm still having
seizures, they just aren't as many or as intense. I woke up 1 time
last night and had about 30 spasms. We have noticed its not really
the amount of seizures that I have but the intensity of them. I can
have 60 not intense spasms and I do well. It's when I have 60 intense
ones when I have more trouble. So anyway, so far so good. We pray that
I will continue to keep getting better. I really want all the intense
ones to go away. Thanks for praying for me!!!! Mommy says she has her
happy baby back that's not getting attacked by seizures all day and
all night. She said not to worry, her and daddy will continue to do
everything possible to get these seizures to leave me alone.

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Here we go again

To all of my prayer warriors. I really need your prayers. My doctor is
putting me on prednisolone steriod again. I will be on this steriod
for 2 months. Please pray that this will work this time. I really need
a break. My seizures are keeping me up throughout the night and I'm
having them throughout the day. So please pray that these seizures
will go away. We know that our God can heal me and we know that
starting these steriods are in his plan. Now we have to patiently
wait while we follow his plan for my life. Please take the time to say
the prayer below.

Dear God,
We know that you have a plan for Jadon. We pray that the steriods
will give him relief. We pray that he will have few side effects and
that he will not get too agitated. Lord we know that you are healer
and we pray for healing for sweet Jadon. Amen

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