Updates and DISNEY!!

So we went to the neurologist last week.  He is such a great doctor.  We really enjoy having him as a doctor.  Not all doctors work for everyone, but for us, he works wonders!  Jacob was finally sorta diagnosed with seizures.  Since Jacob has been having some sort of seizure activity the past few months, it was nice to finally get some sort of relief, and help.  He put Jacob on some medicine and it seems to work good.  He has not had any seizure activity from what I can see, since starting the meds.  So that is a good thing!  However, we know that it is not a cure for seizures, and that he can still have one at any time.  Hence why the dog is so important to us.

We had our first fundraiser for Jacob yesterday.  The only word I have for it was...AMAZING!  We were absolutely blown away by the generosity of humans.  There were so many people who would just walk up and hand us money and walk away.  Or people who would buy stuff and tell us to "keep the change" and the people who would quietly put some money in his donation jar.  I appreciate EVERYONE who helped with it.  In donations of items or money!  And the people who helped with time and helped get the word out by sharing facebook posts and the flier we had going around on facebook.  It was amazing to see how many page visits we had because of the amount of people sharing the flier.  We have been so amazed at the generosity of others...especially those who we have never met, and probably will never meet.  The people who found it in their heart to help us out.  Because of those people, Tom and I have been trying to help out people as well.  We know how it feels to have to ask for donations or have to do fundraisers to get money for your child that is sick.  It is VERY hard...and we hate doing it.  But we are so passionate about this for Jacob.  We love him so much that we have to try everything possible to help him at a chance of a better life.  We will definitely be having more fundraisers in the future so if you are wanting to help, just wait for those details soon.  There are a few AMAZING people who have asked to do fundraisers for him on their own.  I am just blown away, again, at the amazing people who have been put in our lives.  The people who see the potential in Jacob and see what a great kid he is and just want to help.  Those people will never fully understand the gratitude that Tom and I have for them.  

This weekend has been rough for Jacob.  He had so much fun yesterday that it really wore him out.  He was hurting so bad by the end of the night.  Tom and I went out to eat with some friends, afterwards, to celebrate a successful sale.  And when we got home, Jacob was in so much pain he couldn't sleep.  He was so restless and just was not feeling good at all.  He finally went to bed and woke up feeling much better.  Just an example of how it just hurts his body so bad to run out of energy.  He looks so fine on the outside but inside his body, its a mess.  I read something the other day that gave an example of a car.  The car can look in great condition on the outside, but once you open the hood and see the engine you see what a horrible condition the car really is in.  That is how it is with Jacob....and other kids with Mitochondrial Disease.  We went on a walk tonight and tom was talking with the boys.  He told them to squeeze his hand as hard as they could.  They both did it as the same time.  He then told them to do it to me so I could see how different their strength was.  When they started squeezing my hand...I was taken back at the amount of strength Tyler had...and the amount of strength Jacob did not have!  It made me tear up a little bit seeing how bad Jacobs strength really is.

We leave for Disney World in just a few short days!  I can not believe that its almost time!  I remember when we were told that we were accepted into Make a Wish...and that we would be going to Disney World, in April...I thought...wow that is so long.  But now its finally here!!  I am so excited for it to come.  But I am also a little sad.  This trip is going to be the best time of our lives!  We are going to be able to make such great memories with each other and I know that our time at Disney World is going to go by so fast.  I don't ever want that time to be over!  I don't want the trip to come in fear of it being over.  But we will go and make great memories to have with us the rest of our lives.  Hopefully my next blog post will be telling you all about our trip!  I am going to try to blog every day that we are there, but no promises.  I am going to try to have as much fun as we can!