Jacob's story

Jacob was born a healthy baby boy one day before his due date on Aug 28th.  Being first time parents, we were so excited for this little boy.  He was perfect to us!!  We moved when Jacob was 7 months old, from Arizona to Texas.  When we were there I started to see a little bit of odd things that Jacob did.  He never looked us in the eyes or never responded to his name.  We would call his name and he would ignore us.  We thought that maybe he had hearing problems.  But they ruled that out with some testing.  When we would go to playdates, Jacob would spend the whole time running around the house touching EVERYTHING!  He would never really play with the other kids.  I kept redirecting him to the other kids but he would go right back to circling the house or the room he was in.  He also never started talking with the other kids his age did.  I was fluent in sign language and so when he was about 9 months old I started teaching him signs.  When he didnt talk at 2, I thought it was my fault because he was using sign language instead of talking.  So I stopped using signs, but he still didnt talk.  We moved back to Arizona when Jacob was almost 3.  When we came back I was talking to my sister about Jacob not talking.  She told me that there was a preschool in the school district that I could send him to and they would work on his speech.  So 6 months later I got him enrolled in that.  As soon as he started the school he started to talk!  He finally said his first word when he was 3 1/2.  He went to 2 years of preschool and when it was time for him to go to Kindergarten his teacher took me aside and said that we needed to get him evaluated for ADHD because there is no way he would be able to function in Kindergarten if we did not do something about it.  So a few months later we had an appt with a developmental pediatric specialist and she evaluated him and said that he has Autism.  I was not prepared for that!  I went in thinking he had ADHD, not autism!  Then we went back a few months later and he got the official diagnosis of Autism, ADHD, hypotonia (low muscle tone) and developmental delays.  He then went to kindergarten for a few weeks and it was evident that it would not work for him.  So we enrolled him at a school for kids with autism and he did great!  When he was 8 we decided to take him out of school and homeschool him.  And we have been doing that ever since, and it has been wonderful for him.  When he was 9 we decided to take him to an allergist because he was complaining a lot of stomach aches.  He got allergy testing about a year before and it was shown that he was allergic to every single thing they tested him for.  So we thought we would get food allergy testing done because he was showing signs of a food allergy.  When we went to the allergist he told us that he thought we should see a GI doctor first.  So we went and he did an exam and told us that Jacob was very constipated.  When we did the at home clean out that night we went back the next day and the doctor did an xray on Jacob and it showed he was severely constipated.  So he admitted us for a clean out.  After that we had gone every 7 months or so until the last year...we have had to go every 2 months for that same clean out.  At one of the hospital visits they told us that they thought he needed to see a neurologist because he was having passing out spells and headaches.  When we went the doc told us that he thought Jacob had something called Mitochondrial disease... specifically Kearns Sayre Syndrome.  What is funny about that is, the morning before, Jacob was at the eye doctor because he just had surgery on his eye lids.  They were really droopy so the eye doctor went in and lifted them up.  This was his 2nd surgery for the same thing.  That eye doctor had also told me he suspected Kearns Sayre Syndrome.  It is a VERY rare syndrome and to have 2 doctors tell us back to back, it was amazing.  So we did lots of testing and a muscle biopsy and through all of that it was determined that Jacob was in fact diagnosed with Kearns Sayre Syndrome which is part of the mitochondrial diseases.  In the past 6 months, Jacob has gotten significantly worse.  HIs muscles are very weak and he has a hard time doing much of anything without being tired.  This dog would mean the world to him!  He would finally be able to get some life back.  It also gives him a friend...something he has never had before.   

"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!!

Sickness!!

Well Jacob finally got his first real sickness in a LONG time!  Normally he gets a little cold or stuffy nose...but never really gets sick.  That is until Thursday   He was so sick and had such a high fever. I took him to the doctor and it turns out he has strep.  I am so glad that I took him to the doctor because I probably wouldn't of done that.

He got sick right after his last surgery and his doctor gave him a TON of antibiotics.  So I still had some left over.  As soon as I noticed him getting sick, I started giving him some meds.  So now the next day, after being so sick, he is doing good.  He is acting completely fine!  I told him to be sick!!  Lay down and get some good rest in.  But that's not for him.  He is wild and crazy and a little strep throat is nothing!

Being sick he just looked so sick and miserable.  I am so glad he is feeling better.  However, it would of been nice to have a few more days of quiet Jake...haha.

We have a paypal account ready for Jacobs service dog.  If anyone would like to donate towards his service dog, we would appriciate any donation...big or small!  Click here to donate

Make A Wish

When Jacob was diagnosed with Mitochondrial Disease, we were talking to a doctor and he was joking around saying "Well good news is, now you can qualify for Make a Wish!"  I didnt even think that we would qualify but when he said that, I thought...hmm thats a good idea!  After all he has been through in his short life, I thought it would be amazing to be able to do something fun and not have to worry about medical issues.  I went on the website and saw that I could recommend him myself, so thats what I did.  About a week later, I had a call from Make a Wish (MAW) and she just got all his info and doctors info and said that she would contact me again when she hears from the doctor.  I actually had completely forgotten that I had put in info to have a wish.  So I was surprised when they called a few weeks later to say that Jacob was qualified and that he would be getting a wish!!  She told me that they will have a volunteer call me within 6 weeks to schedule a time to meet.  The wish granter finally called about 4 weeks later and we had an appointment to meet 2 weeks later.

When he called, he wanted to introduce himself, and his partner to us.  They were actually friends who work at the same place and they both had gone to volunteer for MAW at the same time, but had no idea they were both doing the wishes until they had seen each other there.  So they decided to go in together and grant a wish...and that just happened to be Jacob!!  Our wish granters names are Jamie and Nicole.  I am so grateful for their willingness to do a wish for our boy!  So they wanted to come over and talk to Jacob about his wish and what they can do to make his wish come true.  They were so sweet and wanted to bring over dinner when they came so of course, they brought Panda!  If you know my boys, you know how much they LOVE panda!!

So Tom and I wanted to talk to Jake quite a bit about his wish to make sure that he would make a wish that was appropriate.  Jacob LOVES music and I know that he would love to meet someone weird haha.  So we totally were trying to get him to NOT pick something like that.  When we would ask him what he wanted his wish to be he kept saying things that Tom or Tyler would like...but this is ALL about Jacob.  So we needed to find out what HE wanted.  So I was showing him some stories and videos on the MAW website and he saw people going to Florida and going to Disney World and stuff so once I heard that, I knew that would be awesome!!  He went to YouTube and found lots of fun videos of going on rides.  So he was so excited.  So when his wish granters came to talk to him, he was ready!  He told them right away that he wanted to go to Florida.  I put in some dates and then we found out that we get to go April 20th!  YAY!!  It is coming up in a month and we are so excited!  I will post more details about it once we know more. But all we know is when we are going and coming back and that we get to go to all the parks.  Oh, and we are staying on Disney property somewhere.

Surgery 2/13

After our doc appt with the surgeon...we talked and talked and talked about what we think the best tube would be for Jake. We decided that we would go ahead and go with the gtube. It just seemed like the best option for us right now.

They scheduled the surgery for Feb 5th. I was not expecting it to be that late. I thought for sure it would be in late december or even early January. But because of the holidays all falling on Monday and tuesdays, the schedule for surgery was really packed.

It was frustrating for us because Jake needed a clean out so bad!! He has needed one since he went to the hospital last time, in October. But they kept telling us that we needed to hold off until this surgery because insurance would not approve it when it was so close to the clean out date. So we really hoped the surgery would be sooner rather than later. Well that didnt happen. So hes still in a ton of pain, and needs a clean out. And the pain meds they will give him after his surgery will make him even more constipated. So I know we are going to be even more full after this. So I expect a clean out in the very near future. Then after this last clean out it should be our last one for a long while.

So the surgery was set for Feb 5th. About a week before that, I get a call saying that the doc had to reschedule the surgery because he had something else come up and needed to push it back a week. So we did. The new surgery time is Feb 12th. Well they caled me a few days later and said that we could move the surgery back to the 5th because what the doc needed to do, it wasnt going to happen. Well we had already switched everything around and so we just said we would stick with the 12th.

Well today is the 10th so in a few days we will be getting the surgery done. We are getting admitted tomorrow to have glucose in the IV because he can not fast. So we need to make sure that he has sugar in his body before he goes and fasts for his surgery.

I will update more when we are done with the surgery and through out our time at the hospital.

Scary episode

Feb 11, 2013 12:40am

Last monday Jacob was acting a little off all day. He has lots of days like this so I didnt really think of anything. He layed around and just complained he was sick. I normally leave him to go pick up Tyler from school and so that day was no exception. I looked over at him and he was just laying there starring at the tv. So I said to him "im going to get Tyler, I will be back in a few min" and then I left. I didnt hear anything from him, but that was the normal for the way he was feeling. I just took off to get Tyler. When I got back I found him on the ground not moving. I called to him and he didnt say anything or move. I went to him and tried to turn him over and he just moaned. I got him up to the couch and he was trying to talk to me but could not get words to form. He was almost paralyzed. He could not move his body or get words to form. It took him a few hours to get back to where he could talk and walk again.

After he could talk again, I asked him about what happened. He told me that he could not move at all and his brain was all weird feeling. And that in his mouth it was like water kept coming out and he could not control it. So I called the neurologist and he said it sounds like his body just ran out of energy. But after asking friends, they all think it sounds like a seizure. So I am going to be talking to another neurologist and see what they think. Hopefully something like this doesnt happen again. It was so scary!!

Doc appt after hospital 11/12

So they tell us that we need to see the ped after our hospital visits. Sometimes I do, sometimes I dont. We are there so often that I dont go a whole lot when we should. This time I decided to make an appt with him because Jake had been having peeing issues again! So we go in his office and talk to him about it. I just thought he would give us a referal to urology and to get it seen by them. But he felt his belly and thought that he felt poop again. So he sent us right away to get an xray. A few hours later he called me saying that it came back that Jake was full...AGAIN!! So a few weeks after the hospital visit and hes back to being full. I just KNEW he was not clear. So he told us to call GI and see what they wanted to do. We put in a call to GI and nurse vickie called us back. I told her all about what happened at the hospital and she was angry! She said that she looked at the xray and it said that there was a change in the xray. Thats it! And the hospital doc said that he was fine to go?!? Both of us were livid! I told them that I want to start seeing GI every time we go now because I want them to sign off on Jake getting released from the hospital. I want them to look at the xray and make sure that Jake is all clear. Because if he is not 100% clear...then he gets right back up full again. The nurse calls me back a few hours later. She said that she had talked to the GI doc and that she said that she wants to think about maybe putting a Gtube in Jake for these clean outs. Also she wanted to do a rectal biopsy. But the GI docs dont do it. He would need to go to the general ped surgeon. So GI doc was going to email the surgeon and let me know what he says. On Monday I got a call from the nurse saying that doc mendez got an email from the surgeon saying that he agreed with what Doc Mendez said about Jake and that he is willing to do the surgeries. So today we get a call from the surgeon office and he said that the doctor wants to take 45 min to talk to us about Jake and his issues and what is going on. he also wanted to require Tom and I both to be there so that he could talk to both of us. I am a little worried about the appt but thank goodness its not for another month! So I will put the update on here once we go to the doc office.