"But he looks fine!"

The title of this blog says everything I hate to hear!!  There are times I am talking to people about Jacob and they tell me..but he looks fine...or he doesnt look sick...or he doesnt look like he has Autism/Mito.  And to that...I just want to say AHHH!!! Those people are not home with him when he is crashing because he had fun with his friends or he had a fun time at the park...his body runs out of energy when he plays and gets hyper.  But he cant stop himself from having fun...and we dont want him to!  He needs to be a kid.  We just really wish that he didnt have to go through all he does after he has fun.

If you were to look inside his body, you would see that is IS sick!  He is so constipated that anyone else would be in bed screaming and crying.  He takes so much laxative that in a normal person would have them in the bathroom 24/7.  But for Jacob...it does nothing!  He goes 2-3 days without pooping sometimes.

His bones constantly ache and hurt.  He is always saying that his feet and his legs and his arms and everything else hurts.  We just get told...ohh its growing pains...he will get over it soon.  But its not.    And no, he never gets over it.

His muscles ache and get tired so fast.  He woke me up the other night just bawling harder than ive ever seen him cry.  He told me that he had such a bad nightmare.  When I asked him what it was about (thinking it was some kind of scary monster under his bed eating him and his family or something) he told me that he was dreaming that him and I were in a hotel.  And he was on the 7th floor and I was on the first floor.  He had to come down to me so he went to take the elevator and it was broken.  So he had to go down the stairs and THAT was his nightmare!!  Can you believe that a child is having nightmares about WALKING?!?  That just isnt right.  Anyone who has walked with Jacob lately without his wheelchair knows that he gets tired so easy now.  When he walks more than 10 feet at a time he starts to feel sick and will start limping because his feet and legs hurt and his muscles are tired.

He is tired all day long!  He will run around and play but then he gets so exhausted after 20 min of playing and has to go lay back down on the couch and most times will fall asleep.

He now has a gtube for many reasons.  One reason is so we can keep his sugars up.  No, he does not have diabetes ..but he has a form of it.  If he goes 2 hours or more without eating his body thinks its starving.  Its like us going 8-10 hours without eating.  But for him its only 2 hours!  Can you imagine not eating for 2 hours and feeling like you havent ate all day?  So he has to eat every 1 1/2 hours to 2 hours to keep his behaviors and his eating down.

Another reason is because he gets dehydrated so fast and so easy.  He will drink 90 oz or so a day and it looks like he didnt drink at all.  So now we give him electrolytes and its making him not get so dehydrated.

Those are just SOME of his issues.  I could go on and on and on about many things...and I have, ive just deleted most of it.  But these reasons and more are the reasons WHY we need a service dog!  It has come to the point where we NEED one now.  I dont know what his future is going to look like in the next 6 months or a year or 2...and I am scared to know.

We are still really trying hard to get some fundraisers started for the service dog.  We have been blessed with some great people in our lives that have helped out and we appreciate everything!  However, this dog is pretty expensive and there is still A LOT we need to raise.  We really want to get the word out to everyone, Jacob's facebook page (https://www.facebook.com/pages/Jacobs-journey-in-getting-a-service-dog/406117766151811) and share it to everyone they know!  Someone out there will read Jacob's story and want to help.  Donations or helping with fundraising.  We need all the help we can get!!