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.

Hospital visit 10/12

Oct 24th we went to the ped office because Jake was having a hard time going pee. I was a little worried about him being backed up but not to much. I asked the doctor about it and he said he didnt feel poop, so that was good. He didnt know what was wrong with Jake peeing and sent us on our way. Well a few days later we were at the mall and Jake had to pee. He went to the bathroom and we all went to the bathroom as well. jake is usually the first one done and so when we all got out of the bathroom we saw that jacob was still in there. We sent Tyler into the stall and Tyler said he was going poop. I was happy so we let Jake stay there for a bit to finish. About 2 min later he comes out pretty upset. I asked him if he went poop and he said no. He was trying to go pee. He said that he could not pee and it hurt really bad when he was trying. So we went right home. Again Jake tried to pee and could only go a little bit and it was super painful. I sent him to bed and started asking people about it and if we should take him to the ER. Everyone said to take him to the ER just to check him out so we did! When we saw the PA she said that it sounded like constipation and lets do an xray to see whats going on. Since we had just bee at the peds earlier that week I knew it was not a constipation issue. But when the actual ER doc came in, I knew it was bad. He told me that Jake was severely backed up and that he had a rock of poop that was blocking his bladder and making it so he couldnt pee and we had to admit him for a clean out. I was devastated!!! I was NOT expecting it at all! Jake was upset and so was I. So they say they need to admit us ASAP. we went to the triage room and stayed there until they got us a room. They came back and said that they probably wouldnt have us a room that night and they would have to do his tube in the ER room. Once again, Jake was NOT happy!! It was something different and he did not want to have his tube there. He wanted his tube on the floor like always. But they wanted his tube in ASAP! So after 30 min of convincing him...he got his tube. And OH MY GOSH, he did awesome!!! Every time he gets his tube he crys and throws up or gags..this time he just sat there and let them put it in there. No throwing up or gagging! I was so proud of him. About 10 min after they got the tube in, they came in and said they had a room for us! It was about 10 pm at this time. When we finally got to our room it was about midnight! The doc was on the floor and we needed to talk to the doctor before we could start his meds because she needed to sign off on it. But the thing is, the doc had laryngitis. I didnt have ANY of our stuff with us and I was told that I could not leave until we see the doc. She didnt come until 4 am!! So I wasnt able to leave and get our stuff. So I had to go home a few hours later after Tom and Tyler woke up. This whole visit was a mess. We only saw the doctor one time and she came in at 5 am and didnt even go see Jake. She just stood at the door and talk to me for a few. Later that day, Jake started to get clear. So YAY we were so happy because it was going a lot faster than normal. I usually keep track of every time he poops and normally he goes every 4-5 hours but this time he was going every 1-2 hours! The next morning the doc said she wanted Jake to eat. I thought that was odd because he never is told to eat in the middle of the clean out. So he ate and he still wasnt 100% clear. The doc was going to release us that morning but I demanded an xray. A few hours later the nurse comes in and said that the doc said his xray looked good enough and he needed to eat something else. So again he eats something. During these times his poop is still NOT CLEAR but the doc wanted us out anyways. It was the worst hospital experience we have ever had!

New diagnosis 9/12

We just went and had our neuro appt to discuss the findings from the muscle biopsy. What are the findings? Well the good news is he said that all the mitochondria were functioning at good levels. He said that it may be because where the mitochondria in his body is attacking the upper part of his body, not the lower part where they took the muscle from. However, it showed that there was particles of fat in his biopsy and thats not supposed to be in there. And that is a big sign of mitochondrial disease. So thats why the neuro said that the mitochondria in his lower part of his body could be working fine but that doesnt mean the top part is. So because of this he said that he has officially diagnosed Jake with kearns-sayre syndrome. Here is a little bit about it: Kearns-Sayre syndrome (KSS) is a rare neuromuscular disorder with onset usually before the age of 20 years. It is the result of abnormalities in the DNA of mitochondria - small rod-like structures found in every cell of the body that produce the energy that drives cellular functions. The mitochondrial diseases correlate with specific DNA mutations that cause problems with many of the organs and tissues in the body. KSS is characterized by progressive limitation of eye movements until there is complete immobility, accompanied by eyelid droop. It is also associated with abnormal accumulation of pigmented material on the membrane lining the eyes. Additional symptoms may include mild skeletal muscle weakness, heart block (a cardiac conduction defect), short stature, hearing loss, an inability to coordinate voluntary movements (ataxia), impaired cognitive function, and diabetes. Seizures are infrequent. Several endocrine disorders can be associated with KSS. Thankfully, right now, Jake only has the eye problems. His droopy eye lids and his eye muscles are very weak. But I believe he is on the road to having kidney problems. He is having some kidney issues right now that the docs are having issues figuring out whats going on. So they are putting that to the side for now until something becomes more severe. This new diagnosis is pretty hard on me. I am not quite sure why. I knew going into it that he had mito. But I guess I just kept thinking that maybe the doc was wrong and that it was just a fluke. But when tests start to become abnormal...it scares me! But it FINALLY shows me that we have FINALLY found what we have been looking for, for so long. Jake FINALLY has an answer to everything. But that still doesnt make me feel any better. Mito is a BAD disease!! It is not something we want Jake to have. There is no cure for it. There is nothing we can do to make it better. No diet, no meds, NOTHING. We can change some things to make him comfortable and help the disease not progress as fast...and we will try everything possible for him to feel better. I know that there is not a day that goes by that he is not in pain. And so I am trying so hard to lessen that as much as I can. So I guess until we know more...we just keep on doing what we have been doing!

9/10

When we got home from the hospital on friday Jacob started complaining of a headache. It was more of a "mom my head hurts" and then I would say something like ok go lay down and off he would go and play and act normal. So I didnt think anything of it. And then Tuesday night him and Tyler were laying down in the front room watching tv and I hear him scream and start to cry. I look over and his head is on the ground. So I tell him to walk to me. He did and I asked him what was wrong. he told me that his head hurt so bad. Tom and I thought he was getting a migraine so I told him to go lay down in bed. He went right to bed and layed there for about an hour. Then he was fine after that. An hour later I noticed Tyler was already asleep on the couch and Jacob was on the chair with a blanket covering his body and the pillow over his head. I figure he got another migraine and he was trying to keep the light and sound away. So we woke him up and when we did I asked him if his head still hurt. It did so I gave him some tylenol. He went to bed and didnt wake up all night. In the morning I asked him if his head hurt and he said it did. But then he said "I cant go to school...but I can go to scouts." So I figured he was faking and I sent him off to school. About 9 am I get a phone call from the lady in the front office and she said that Mrs Bergman said that he started to get a headache and he just was not acting like himself. He started to get really pale so she was going to take him across the hall to lay down on the couch. When she was walking him over there he passed out in her arms. So they had to call the fire department to come look him over. I arrived after the fire dept was there and so they were already doing their checks on him and trying to get him to be responsive. Jacob's blood pressure was very low so they had to check his blood pressure standing up. When they had him stand up he passed out again. So they decided that they needed to call the ambulance to take him to the hospital.

So off we went to PCH again. The first doc came in and checked him over. It was just a resident doctor. I have never had good luck with those. Usually they have no idea what they are talking about and is always completely wrong with what they say! He said that since they reported that there was some tenderness in his tummy he would check it out himself. Jacob started laughing and the doc was like oh hes ticklish. I had to tell him no...that's how he says it hurts. Since Jacob doesn't feel pain like we do its hard for him to know whats pain and whats not. And ive seen that when Jacob laughs like that it usually means its painful. Because of our recent history of just being admitted he wanted to get an xray done of his belly and just see whats going on in there. So we went to xray and a few min after we were done he came back and said that from the looks of the xray he has MORE poop in his system than his first xray showed BEFORE we did the clean out. I was actually mad because I had thought they released us without having him all cleaned out. And if they did that, then they were going to have momma bear attack! But he said that he looked at the xray that they took when we left and it showed there was nothing but air in his system. So from Friday until Wednesday some how it all came back! Now im not a doc but that just doesn't seem right. So he wanted to give Jacob an enema but I said NO! He wont tolerate that and if there is poop still in his system he needs to get it out again. So I told him to please call GI and talk to them. So he called and talked to another doc in the practice and they said to admit him. But they have no beds. SO they sent us home and said they would call us when a bed is available. Last time they did this they called us within a few hours. But so far we have waited over 12 hours so far and nothing yet. So hopefully they will call us soon! I assume they are going to have to do another clean out with him. But not only do we need to get that taken care of but now his headaches and what caused him to pass out. And then we have to figure out how and why so much poop came back so fast. I actually got a call from the GI last night around 5 as we were driving home from the ER and they said that we never saw a nutritionist when we were there last time and they were upset over that. We need to see one before we leave the hospital this time. The nurses should of made sure we saw one but they told me that it was not in the hospital orders...when it clearly was. So this time we will also see one of those. Hopefully this hospital visit wont be longer than the last. I was about to claw my way out of there by the 2nd day!

9/10

In July we decided to go see a GI doctor. Jacob had always had some stomach aches and we just wanted to figure out what they were from. We thought it was from an allergy but we went to the allergist and all their tests came back fine. So next step was the GI. They asked his history and after feeling around his stomach they told me its just constipation. So they gave us an order to up his fiber intake to 16 g a day and he should be fine. So we did that and nothing happened. So they told us just in case lets do some work. They sent us for a xray and some blood work. I guess I forgot to send them my new phone number when we moved because when the tests were done they were trying to call me but could never get a hold of me. So they called Tom at work and Tom gave them my new number. So they called me and said there is a significant amount of poop in his colon and he needs to do a clean out. So for 4 days give him 2 caps full of miralax 3 times a day and 2 chocolate xlax bars 2 times a day. So we got all prepared for this massive clean out and started it on a Thursday. That day...nothing happened. No poop...nothing. The 2nd day he only went 2 times. The 3rd day he went 3 times and the 4th day he went once. So I called them after the weekend and told them what had happened and that I didn't think it worked. They told me to try it again the next weekend. So I did. This time, the whole weekend, he only went 3 times! I had an appt with the doc on that Monday. When we talked to him I told him what had happened and he said well this obviously is not working. He started to write something down and then said to me "Go take this paper next door. Get an xray right now. If it shows poop still in there then we will have to admit Jacob and do a clean out in the hospital." So right away we went and took it over there and got the xray. The next day I got a phone call that said there was more poop in there than before and that the hospital would call me with a time to come in to do the clean out. A few hours later we were in the hospital!

When we got to the hospital there was a lot of waiting around. We got to the actual hospital at about 445 and finally got to our room at about 6. Well at 7 is when the nurses do their shift changes so no nurses really wanted to get started on anything because it was about time for them to go home. Then the night nurses came on board and they had to finish with all their patients first before they came to get us started. So finally at about 8pm they get to us. They tell us whats going to be happening with him and what they are going to do. About 845 they came back and took him away. What they did is they put in a feeding tube that goes from his nose all the way to his stomach. And then they put in an IV. I actually had to convince them to put in the IV because I didn't want him to get dehydrated. They gave him some relaxers to relax him and so that he wouldn't flip out when they put in the feeding tube. But he just started crying and wouldn't stop. Finally I convinced him to stop crying at about 10 pm because he wanted to go for a walk. I told him that there were too many sleeping kids and he had to be quiet because he would wake them all up. We actually had a roommate too. And I was worried he was going to wake up the other kid. They started his meds also. So it was pumping into him a stronger version of miralax. He couldn't swallow or close his mouth with the feeding tube in. It was so sad to see him like that.

We finally went to bed at midnight only to be woken up at 4 am by Jacob throwing up. I figured it was just because he was not used to the tube and it probably gagged him or something. Well then he threw up again...and again...and again...until 6 am. They gave him some zofran and then decreased the amount of meds being pumped into him and that was the end of his throwing up.

The next day (Thursday) we said good bye to our roommate...who's name was also Jacob. And we were roommate free the rest of our stay there. That day was also full of lots of pooping and diaper changes and stomach cramps and LOTS of tv and disney movies. My wonderful friend Erin came and brought Jacob some fun toys to play with and that kept him entertained.

Friday came and was all the same as Thursday. Lots of bed changes and diaper changes. However this time the poop started to become less and less. They told us we could go if his poop was clear...which meant there was no "rocks" or specs it was just basically pooping out the meds that they were giving us. Finally about noon he started doing that. They told us he had to have 3 poops that were clear. We did that around 2pm and then they took him at about 3pm to get an xray. If it came back that there was nothing in his system we could go! So at 4 we were released to go because everything had come back fine.

It was such a scary experience for him...and me. I do not enjoy seeing my kid in the hospital that's for sure. But we have a great support system and I am so thankful for everyone who prayed for us and who called and visited.

6/07

I am at the end of my rope with Jacob I am not sure if this is an autism thing, ADHD thing, or just because hes a *bad* kid. But his behaviors have become VERY severe and VERY bad! I am no sure what to do with him and his behaviors anymore. We cant punish him because he just doesnt care. I try taking toys away and that doesnt bother him. He doesnt play with toys or anything else so taking something away doesnt work. When he is in time out he will come right back out...ive tried everything to make time out work and it doesnt work. Ive tried yelling and spaking and he just laughed at me. Ive tried the loving approach and that didnt work either, it just made him do more. We have him on meds for ADHD and ever since we put him on those its like these behaviors have become way worse.

Its 7 am and ill tell you what he has already done in the hour we have been awake. He took a blanket and tried to choke his brother, he was throwing a shoe at the wall and every time I told him to stop he would keep doing it, he turned on the water outside and threw his brother in it, he got markers and colored himself and his shirt. I am not sure what to do anymore and I hate feeling like he has defeted me. Like I am nothing to him because he just wont listen to me...or his dad.

5/07

We just had Jacobs drs appt at the Melmed Center a few days ago. The Melmed center is a place that has pych and developmental ped  there. Basically for kids who have brain issues...lol and developmental problems. We go here once ever 3 months for Jakes "therapy" for his autism and ADHD. Well when we went we finally got the official diagnosis for severe ADHD. She told us that he is as bad as they get...he cant get any worse than what he is. It was pretty hard to hear because I really didnt think he was that bad. So we decided to put him on meds. Hes only 4 and we really didnt want to do it but she said that its the only thing thats going to help him. And if we dont put him on meds then he wont get any better and we will just hurt him more than putting him on meds. She told me of the side effects and I felt like that was a good decision. The first day that we had him on them, I have noticed a BIG difference. It is making him very sleepy. Which is fine by me, but I dont think he likes being on them. When he comes off of it he gets very cranky and will usually just cry for about 45 min while hes coming off of them. And then he will get REALLY hyper. I can usually tell when hes coming off of them. I think its too strong for him and so we are supposed to go back in 4 weeks for the follow up and I am going to see if she has anything different we can try him on.

When we had Jacobs K transition meeting, we decided to put him in the intergraded kindergarten  Its kinda like normal K but they dont sit at tables...they do centers and learn like that. I had requested to go in and observe the class that is going on now just to make sure that is the class I want him to be in. I know that he can not be in normal K even with his meds. He just cant sit and concentrate that much right now so we had to figure something else out. Plus he is going to have speech and OT during school time and its easier if he is in a class where everyone needs it as well. We had to choose between the Autism class or this IK class. We didnt go with the Autism one because most of the kids that are in that class are severe and we dont want him to start to model those behaviors that the more severe kids do. But with the IK class we can have what he needs to help his autism. Like he will have his own picture schedule for the whole day. We use that at home and he also uses that at school right now and that has helped so much! He has to be on a schedule and he does very well with pictures since he can see what it is instead of trying to read it. Also we will have his therapys. I am going to try to get Physical Therapy to start at school too that way we dont have to do any therapy at home and after school. Well I go and observe the class on Thursday! I am excited to go and see what he is going to be doing next year. i am getting kinda sad about him going to all day kindergarden. I am sure he will do fine but its going to be a big adjustment for him. Its probably going to be a rough few days as he adjusts to it but im sure in the long run it will be the best for us.

4/07

Jacob is 4 he will be 5 in august.  When he was born he was always moving around.  He crawled early, and walked early!  We just thought that he was going to be early at everything.  I am fluent in sign language and so I always wanted my kids to know and love sign language like me.  When Jake was a year old I started teaching him sign language.  He was getting pretty good and knew a lot of signs and used that for everything.  When he was around 2 1/2 I noticed that he wasnt talking and that it seemed pretty weird.  He was my first so I just figured that he would catch up soon.  I started to blame myself because I thought it was because I taught him sign language and had him use that instead of his words.  He was also very active.  I hated taking him to other peoples houses because he was always running around and getting into all of their stuff.  He would turn on and off lights and shut all the doors...it was just emberassing.  Again, I knew that was a little strange, but I never thought anything of it.  We lived in Texas at the time and 2 months after Jacob turned 3 we moved back to Arizona.  My sister was visiting and telling me that Jacob really doesnt have good speech and that we should get him tested to see if he can go to the preschool program that the public school has.  So we got him tested and he passed with flying colors!  So we got him in and he started to progress amazingly!!!  In a year he went from NO words to 2 word sentences   We were so happy that he was talking and we were starting to understand him more.  Lets fastforward to December '06.  He is still very hyper and his speech is starting to get so much better.  But now he has weird behaviors...he is very violent to himself and to other people.  He wont look into your eyes when you talk to him and he wanders off and will dart in front of cars without even knowing what he is doing.  I go in to a meeting with his teacher and she tells me that she is concerned with Jacob and his behaviors.  She told me that he is the worst kid that she has seen in the hyperness and not being able to focus on anything.  So she said it would be wise to take him into his ped and see what he thought.  So we did and immediately he told us that he would like us to go to a developmental pediatrician and see what they think.  So Feb 2nd comes and we go to our appt.  Within 30 min of being there she already knew that he had autism.  I kinda prepared myself for that going in because I was 90% sure thats what he had.  But I thought he had a form called Aspergers.  I didnt know that he was worse than I thought.  She diagnosed him with Severe ADHD, High Functioning Moderate Autism, Developmental delay, and a speech delay.  I was so overwhelmed when she told me that I just broke down!  I was a mess, and I still am.  We are still getting used to the autism diagnosis and every day I find something different that he does that makes me say...hmm yep I see the autism in him.   I am going to start this blog to put down my thoughts and feelings of the day into writing because it does help to get it all out.  I have such a hard time with this and I am so excited to be able to have some kind of outlet to get it all out.