GI appt

So for the past week and a half, Jacob has pretty much stopped eating.  He has no appetite and when he tries to get food, he has horrible stomach pain.  So instead of eating he just stopped and has lost A LOT of weight.  He is down 16 lbs in about 2 months.  He also has been having lots of issues with his POTS.  And being dehydrated.  So I called in to GI and told them that he has pretty much stopped getting food and they wanted to see us ASAP.  The doctor that we were assigned to, never sees us.  Its always the nurse practitioner and they never know what to do with Jacob.  Every time we get an appt with them they always say that they dont know what to do and has to consult with the doctor.  But yet every time we try to see the doctor, they say she has no openings for months and months.  So when the nurse said we needed to be seen, I demanded that we see the actual doctor.  But this time I said I would see ANYONE!  Well luck has it that our GI is retiring this week and so it was easy to switch doctors.  We got in to see the new one and she was great!  I felt so good talking to her about Jacobs problems.  She agrees with me and neuro that his stomach issues are all part of the autonomic dysfunction that he has.  And that it probably will never get better.  We talked about what to do to get him to eat and so she prescribed us a med that should help him get an appetite.  She said it could take up to 4 weeks for it to work so hopefully it will work soon because today, he had NOTHING to eat until he went to bed.  I figure I can get some in him while hes sleeping.  But last night he woke up with major stomach pain and turned off his machine and unhooked himself haha.  Sometimes I dont like the fact that he can hook and unhook himself.  But other times it comes in handy, thats for sure.  She also gave us some meds that will help his stomach when it hurts.  Its like Tylenol but for stomach pain.  I was very happy with this appt.  Its not very often that I go into an appt with major issues and come out feeling good!  I feel like we have some what of a plan and that hopefully this will help him eat more.  Meanwhile our amazing speech therapist is going to try to help us do some things that will make sure that he does not lose the sensation to eat.  We need to stimulate his taste buds every once in a while.  While it will never be in the cards for him to eat again, we will never give up that hope!  So we want to try everything possible to get him to eat real food again and not have all of his nutrition through his gtube.

POTS

Jacob has a new diagnosis.  Its called Postural Orthostatic Tachycardial Syndrome.  Here is a little info about it:

Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. The faintness or lightheadedness of POTS are relieved by lying down again. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age. Some women report an increase in episodes of POTS right before their menstrual periods. POTS often begins after a pregnancy, major surgery, trauma, or a viral illness. It may make individuals unable to exercise because the activity brings on fainting spells or dizziness.

Doctors aren't sure yet what causes the reduced return of blood to the heart that occurs in OI, or why the heart begins to beat so rapidly in POTS.  Current thinking is that there are a number of mechanisms.  Some patients have peripheral denervation (neuropathic POTS); some have symptoms that are due to sustained or parosyxmal overactivity of the sympathetic nervous system (hyperadrenergic POTS); and some individuals have PTOS dominated by features of deconditioning. 

So for Jacob it means that when he stands up, he gets super light headed and dizzy and will pass out.  And that is what we had been experiencing for the past month or so.  It is something that will forever plague him and make him uncomfortable.  Right now he cant really get off the couch without feeling dizzy.  So he pretty much just stays down laying down because thats about all he can do.  Plus being dehydrated all the time makes him dizzy and light headed.  So he is getting it from both ends.   This is a new diagnosis for us and we are not sure how it effects him completely yet so this is something we are trying to research and find out ways to treat it to make him feel comfortable.  

We did find one solution that helps him feel better.  Last week, his sats were low.  So I gave him oxygen and then got busy.  I totally forgot that he had it on and went like 3-4 hours with the oxygen on him.  When I finally figured out that he still had it on, I took it off and he said he felt so much better!  It was amazing how good he felt.  He was like a totally different kid.  He was hyper and had tons of energy again.  Of course that is always short lived because of the mito, but it was nice to see him so happy for once.  So of course seeing how good it made him feel I decided that he needs to be on it for a few hours every day.  And it has been great!  But because of this new change, his ped wants us to see a pulmonologist to make sure that this new oxygen thing isnt because of something in his lungs.  So pray that if it is, they find the answers and its something easy to deal with.  

November....the month of hospital visits

So Halloween kicked off our month of hospital visits!! And I just have to say, I am tired of it. We went in on Halloween to be admitted for some testing and to get some fluids.

The next week we went in because Jacob was having major dehydration symptoms. So we went to the ER and they admitted us for fluids and for watching us for other symptoms. He was impatient for about 2 days.

Then we went back the week after. He was having a lot of chest pain and his heart rate was crazy high and would skyrocket every time he would move. He also had some symptoms of dehydration and was just not feeling like himself. We went in and they wanted us to see a cardiologist while we were there. So he got admitted again and we had an echo and EKG and all kinds of stuff. They all came back fine so that's good. We don't have to worry about his heart for a while.

A few days before thanksgiving he started having dehydration symptoms again. It was starting to get very frustrating. His heart rate was going crazy again and I was talking to a friend and she said we should check his ketones. So I did, and they were fine. We rechecked them again a few days later and he actually had some in his urine!! It was pretty dark which means its in the high range. So I emailed our ped and he told me that if he didnt get better than we should head to the ER. Well we went through thanksgiving and then the next day he was just getting worse. So we headed back to the ER. And they gave him fluids and then sent us back home.

He felt good for a few days and then was back to where he was before. We tried this time to wait for longer than a week but it only took us a little over a week until we were back in the ER! He had dehydration again. I am getting a little irritated with this. I really wish we could figure out a solution to all of this. I am not liking that the ER nurses know us, and zelda, by name now. When we left this past time, the nurse said...if we don't see you before, have a good Christmas. I love that they know us and that they take such good care of us, but I wish we could just go 2 weeks without a hospital or ER visit!!

It has taken a toll on ALL of us! Poor Tyler has suffered in lots of ways. This poor kid has had to get thrown to the side while we deal with Jacob. His school work is suffering, his behavior is suffering, and he is super clingy which means that he is missing me for sure. Dad usually stays behind and takes care of Tyler but its not the same. I am so scared for December after seeing what November had in store for us. I LOVE the Christmas season and its so hard to do anything living in fear that Jacob is going to get sick and we will have to go back to the hospital. I know that we shouldn't live in that fear but its hard not to.

Every time we try to do something fun, its too much for Jacob and he ends up needing oxygen or he is exhausted and goes to sleep for hours or he just gets so sick he cant get off the couch. Tom and I are trying so hard to make this Christmas great for BOTH boys!! They both deserve it. But Tyler especially. Usually for Christmas we do a lot of baking and eating. But since Jacob can't eat anymore I feel so bad making ANYTHING! But then Tyler gets sad because he misses making and decorating cookies, and trains, and gingerbread houses. Sometimes we focus so much on the child that is "sick" and leave the siblings out of it. But at times they need just as much, if not more, attention because they get left out of so much. Hopefully this Christmas season will turn around for us all and we can enjoy the last 2 weeks of it!!

Tests test and more tests!

In October Jacob started having major stomach pain.  Every time he would eat, he would either throw it up, or have horrible pain.  We tried everything!  Every once in a while his stomach wouldnt hurt but that was pretty rare.  So I took it upon myself to start a blended diet for him.  I got a few recipes off the internet and started feeding him through his tube.  From the first feeding, he had NO pain!  I couldnt believe it!  He was getting food and was not in pain!  So I talked to our ped and he said that if Jacob isnt hurting then we might as well just start doing it for all meals (we just did it for breakfast for a few weeks).  Once we started doing it full time, I noticed a huge change in him.  He no longer had pain and it was great!  So we went to GI and she said that he needs more food so she has him on pediasure as well.  It is working great, so far.  He has pain still but its not while hes eating.

So because of the mito, every time Jacob has to be put under, it requires a hospitalization.  Well his GI doc wanted to do a few tests because of this new pain in his stomach and no longer being able to tolerate food.  We did a scope and biopsy and they both came back fine.  The scope showed some redness and irritation but she said that is normal because of the reflux.  The biopsy came back with some abnonrmal findings but she said that in her GI forums, they talk about this issue all the time and its nothing to worry about.  Its pretty normal.  Sooo no news there!  Of course!  But we were admitted for a few days because of this procedure and then he was really dehydrated so he needed fluids.  The bad thing about it all, was that he was admitted on halloween!  So he was not able to trick or treat and we got there too late in the day to partake in any of their halloween fun at the hospital.  So it was pretty lame.  But I got to stay home and Tom went and helped Jake at the hospital.  And Tyler and I went out and trick or treated for a few hours.  It was a lot of fun being able to spend some time with Tyler.  

My letter to Disney

To whom it may concern:

I have read the uproar on the new disability pass you guys will be rolling out in a few weeks, at your parks.  I just want to say, thank you for trying to take away the people who take advantage of the system and make people like us, who actually NEED it, look bad.  However, it now makes it so people like us, can not enjoy your parks!  

We are supposed to go to Disneyland and California Adventure RIGHT after this takes effect (Oct 11th) and now I am thinking twice because of my son and his ability to not be able to last long at disney.  I know you guys had an autism organization take place in helping you guys come to a conclusion of what kind of system to put in to place.  But let me just say, Autism is NOT the only disaibilty out there.  And if my son ONLY had autism I would be happy!  Let me tell you a little bit about him.

Jacob is a sweet 11 year old boy.  He has a love for life and is always laughing and smiling.  He was diagnosed with a terminal illness called Mitochondrial Disease...or Mito for short.  Because he has Mito, his body does not produce enough energy for his organs to run.  So when he uses energy to walk...or talk....he is taking away that energy that runs his organs in his body.  Just a simple meltdown will take away energy that is supposed to be running vital organs in his body.  He has major heat intolerance.  He can not be in the sun for very long.  He gets over heated (even when its NOT hot outside.  Being in the sun does the same thing) and when that happens, it is a trigger for his seizures.  So we can not be in the sun for too long or else he will start to have seizures and that takes away a LARGE part of his energy..  Mito has also caused Autism.  He has major anxiety when he is around large amounts of people.  He gets upset and then that takes away his energy.  He also has low muscle tone and can not walk more than a few feet.  It takes away his energy and he starts to feel so sick that he cant walk anymore.  So he is in a wheel chair.  And that isnt even HALF of what this awesome little boy goes through.  

Now let me tell you about last April.  We were able to go on a Make a Wish trip to DISNEYWORLD!  And let me tell you, I have NEVER seen this boy so happy, as I did those few days we were there.   Yes he got sick...Yes he "ran out of energy" but it was because we were making memories.  Memories that one day, will be all we have!  My son will not live to be married.  He wont live to go to college....who knows if he will live to be in high school.  But I will NEVER forget those memories that we had while on our make a wish trip.  We were able to go to the parks AND we were able to have a good rest time so that we could have more fun together.  Do you know why?  Its because we were able to rest when we needed, we were able to get on rides faster and not have to sit in the sun.  It was because we were able to be away from crowds.  It was because we had the disability pass.  Without it, we probably would of been at the park for 20-30 min and then had to leave because he would of had a seizure, or he would of had a meltdown, or he would of just been so sick and unhappy it wouldn't be worth it at all!!  But instead, you made this child who lives in pain and sickness EVERY DAY have a great time with his family.  A trip that he still talks about every day.  So we were SO EXCITED when we found out we had to go to Southern California for an event for his service dog.  We just had to go back to Disney!!  We had so much fun and knew that we could make even more memories!!  But then we found out that you are taking away his right to be able to enjoy the park.  Yes, you have a system in place that could help SOME PEOPLE...but not all.  Not my son!  You say that we can only ride 1 ride per pass....and we could just walk around and watch a parade or something while we wait for that time.  Well let me tell you....that is a good way for us to leave ASAP!  It is sad that he has to waist all his energy on "walking around the park" wnen we could be riding the rides...the part of the park that gives him that smile we try to find.  

I just beg you guys to PLEASE reconsider what you are doing to ALL disability's.  Not just 1.  We really want to go to Disney on the 11th.  We were planning on going to the Halloween party.  Halloween is Jacobs favorite time of the year and we just know this is going to make his whole year!  We just know that going to this will give us some great memories with him.  And we know that this will make him forget about being sick...for at least a few hours.  And carsland for my younger son.  The brother who always gets put aside because of his big brothers needs.  The younger brother who had to grow up fast because he knows more about hospitals and procedures than most adults don't know about.  He deserves to have fun just as much as his older brother does.  He has had to sacrifice so much!  Tyler LOVES cars.  And its his dream to meet lightning McQueen.  And to see cars land.  And we were so excited to be able to see HIS smile...make memories with HIM!  But we cant, unless his big brother can come too.  So PLEASE PLEASE PLEASE, hear our plea!!  Please make it so that we can have fun too!!

Thanks for listening

Britney and Tom Priestley

A day in the life of Jacob!

Because its Mitochondrial Disease Awareness week, I thought I would do a little "day in the life" and show you what a pretty typical day is for Jacob.  I really think its important for people to show how complicated our lives are.

Mornings usually start at different times.  Sometimes he is up at 6 am or sometimes he is up at 8 am and any time in between.  It depends on if Zelda woke him up, a brother woke him up, a stomach pain woke him up, or whatever.  Like this morning he was up around 730 and woke up with a horrendous stomach pain.

So when Jacob wakes up, I am  usually in the midst of getting Tyler ready and off to school.  So we take Tyler to school and then come back home and he has a little bit of tv watching time.  This is time for me to get his breakfast and his meds ready for the day.

Before he eats breakfast he has to take some meds.  There are a few meds he has to take 30 min before he eats.  So these are his before breakfast meds that he has.

                               This is how he takes his meds...mostly.  Because he likes to throw up his meds every time he gets them by mouth...this is the best way for him.

After he gets his meds I let him get on the computer and play for a little bit while I get breakfast ready and his other morning meds.  He is usually there for about 30-45 min (dont mind zeldas crazy scary eyes)

We love smoothies and I make them every morning for him.  I put MORE meds in here for him too.  I love hiding stuff in things that he will eat or drink and never know its full of medicine for him.  We put his laxatives in here most of the time.

After his smoothie is made and his breakfast has been eaten, we go for his 2nd set of morning meds.  These ones are for his mitochondrial disease called his "mito cocktail" these are compounded meds.  So they have at least 2-3 different meds mixed together.  He also has Co q 10 gummies, and pedialyte to flush his tube.

After breakfast its time to hook him up to his fluids.  I go and get my supplies which are a bottle of pedialyte and his bags to put it into.  

This is another look at his machine and supplies 

After that, its time to hook him up!  I get the tube that we kept in from giving him his meds and we put the end of the bag into the tube and push run on his machine, and he is done!

 Next, its time to hook him up to his pulse ox machine.  We have to go keep this continuously throughout the day to check his heart rate and his oxygen sats.

Now its time to start on school.   We see what we have to do for the day and start on the easiest one...haha

We did school for about 30 min and then he started to not feel good and get really tired.  So we had to take a break.

We took a break for about 30 min and then went back and did school for about 10 more min before he was not feeling good at all and was having a hard time talking and kept trying to fall asleep.  So we did another break....and that was all we could do.  

It is lunch time now.  He ate lunch and then we had therapy!

We went to therapy but he was really struggling staying awake and up and focused.  He kept saying he felt like he was gonna throw up, and his throat hurt, and his legs hurt.  So therapy was pretty tough.  

No suprise here...we got home and he went right to sleep!  This is about 12:30 and he will sleep until I wake him up around 2.  I have to go pick up Tyler from school so I had to wake him up to come with me.

After we get Tyler we come home and try to do a little more school while Tyler does his homework.  They do their stuff together and I clean up a little bit and try to get dinner started.

At 4 we go and pick up Tom and I run to the grocery store to get what I need for dinner. 

Around 530, its time to get ready for bed.  So he takes a bath and gets ready.  He watches tv for about 30 min or so.

And then at 630 he gets his 2nd dose of meds.  He gets all the above meds again.  And at this time we also fill up his bag again to get ready for bed.  He has to be hooked up at bedtime so once again, we fill it up with pedalyte and hook him up to the machine and around 7 he goes to bed and we start it all over again!

Now this is a typical "non busy" day.  Just think on a weekly basis...we have doctor appts to add to that, we have more therapy appts, we have appts with state people for his services or we have a day where we go out and have fun!  

I hope you enjoyed our "day in the life of Jacob!!"

Medical updates

The past few weeks have been filled with issue after issue.  I am not going to lie, its pretty scary.  Most nights I lie awake scared to death because I never know when that moment will be that something hits that is just not right and all of a sudden Jacob is a completely different kid.  We have already experienced a little bit of that and to see him decline is never something we want to see.  But in all reality is that Jacob is suffering from a disease that, over time, is just going to get worse and worse.  And I dont think we will ever fully understand why or accept that this is our new way of life.  Jacob catching the flu or even a small bug is one of my biggest fears.  If Jacob gets sick and for whatever reason his body does not have enough energy to fight it, it could be deadly.  And that is where we are at right now.

Jacob started a new seizure med about a week and a half ago.  It has been going great because I had only noticed 1 seizure and that was early in starting the med.  Well a few days ago Jacob came to me and said that he had a rash on his arm.  I told him he was just seeing things and it was not a rash.  About an hour later he came to me again and  again said...mommy, I have a bad rash!  So I looked at it and WOW he was right!  He had spots all over his body.  Arms, legs, back, chest, neck...everywhere!!  So I called the doctor because I knew this was just a little virus rash but I wanted to get a prescription and knock this out as soon as possible.  He had thrown up the day before and was running a fever.  We showed up at the doc and he confirmed exactly what I thought.  But he didn't give us a prescription.  He just said we are just going to have to wait it out.  Nothing they can do about it.  But to keep him inside and not take him out in the heat because it will make it worse.  Well we listened to him and kept Jacob inside.  Well the next day his fever started getting higher and he was just acting very lethargic and yucky.  By the night he was really sick!  His fever was so high and he just wanted to sleep.  I couldn't sleep at all.  I was up every hour taking his temp because I was thinking I needed to take him to the ER because his temp was raising and I didnt want him to have a seizure.  Around 2 am his fever started to come down so I went to sleep.  Woke up a few hours and took it again and it was low grade so I felt good about everything.  That is, until he woke up.  When I saw his body I was SHOCKED!  The spots had turned into huge blotches and it was ALL OVER HIS BODY!  It was so bad.  I had never seen a rash this bad before.  Tom said that he was going to call the pediatrician and see what he wanted us to do.  He called and he was not in so he left a message with another one of the doctors.  They called me a few min later and said we need to get to the ER right away!  I am so glad we did because we had no idea how sick Jacob really was.  When we got in they put us right away into a room and we saw a doctor within a few min of being there.  They did a bunch of tests on him and they just figured that it was just a really bad virus rash.  They called in the neurologist and he said that it was a reaction to his seizure med that we just put him on.

 No one truly knows how sick he was.  I didnt even know how sick he was, until a doctor had told me.  Jacob was in a crisis.  He was so dehydrated that his body was shutting down!  His body was getting attacked and he did not have the energy to fight it.  So instead it just started to shut down.  They had 2 IVs in him pumping all kinds of different things.  They had 2 kinds of fluids to help him get out of this dehydration crisis he was in.  And then on top of that they had meds to stop the reaction.  They told me that when they have allergic reactions like this, they normally give the person steroids to stop it and clear it away.  But in Jacobs case, the kearns sayer syndrome that he has, there are studies that showed that when people with this syndrome were given steroids, it was deadly.  So the doc did not want to chance it and give it to him.  So we had to stick with normal allergy meds and hope that it would help.  Which it did...but it just took longer.

Its never good when the doc tells you later on, that its good we caught it when we did.  If we would of gone a few hours later...we probably would not be coming home with our son!  Knowing that, I have changed everything about the way I view life.  It is so precious and you never really understand how fragile life is, until you are faced with the end of it.  Seeing how fast things can change with him...I have had to change a lot of the way we live our lives.  I can not let Jacob get sick again.  I can not let him be put in this situation again.  I love my son so much and it kills me to think that his time on earth can be cut short because he got a little cold or the flu;.

Just please keep Jacob in your prayers always!  We need them more than ever.

Good evening. At least my perception is that it is evening since what I see when I look out my window is a shade of darkness forming over the land.

I wanted to take time to explain what this "Invisible" disease is. Mitochondrial.

Ever look at a car and think "man she looks sweet".... a car folks, not your wife, follow me here. Then you decide to drive the car and there are problems. Some much more major then others. For instance you have a engine with mounts that are loose. Or even spark plugs that are going out. Even a battery leaking. As I said some major, some not so much. But over time, if it goes untreated, the engine will eventually stop, at what point, you dont know, until it is too late.

Let me pose another question to you. Say a doctor came into the room on a routine check up and said, "I want to prepare you so I want you to go home and look this up, Mitochondrial."
He doesnt give a diagnosis, he just tells you to go look up a word. Doesnt say anything else about it on that visit. Here is what you find if you google it. http://www.medicinenet.com/mitochondrial_disease/article.htm

We went through the test and yes, the doctor was right but we knew what we were walking in to. We just didnt know the magnitude it would take on our lives.

Let me pose another thought. When you are diagnosed with something, you think the worst, and hopefully best case scenario. What if the BEST case was you would live to be 30 years old, if you beat everyone else before you that had the same thing. It is rare to find anyone who was diagnosed by age ten to live past age 30. Let that sink in. How old are you now? I assume since you are reading this you are probably over the age of 12, so half your life? Maybe even your life 2 times over?

How do you react to knowing your life is going to end? Do you worry? Do you just let your parents do the worrying? Would you want to know? I remember as a kid playing with my best friend Scott. We would always sneak out quija board but would NEVER ask how old we would live to be. What if someone you knew had the answer? Would you want it from them? Would you even notice that nothing is really wrong with you if your parents protected you from it?

Before you judge, think about it. Jacob has no idea what all this mean. He doesnt read this blog. Nor do we ever want him to. We have to protect him. His life is lived everyday to the fullest. He goes to baseball games, movies, swims.... he lives a normal life and does normal things. What he doesnt know is at some point, it is going to end. I dont say this to get pity from any of you. I dont want it. I dont need it. I am simply replaying information that most of you dont see, ask for, or are ignorant to. I guess blind would be a better word.

As I write this blog, this is all from my heart. If I offend you, dont take it personal. I am writing this in hopes that you all see Jacob as a fragile boy, who needs love. As parents we wont see him grow up, get a great job and work it for many years, able to retire and have grand kids. He will never see that. Will you? What if I took that from you? Would you want all of the sudden people to treat you differently? Because I promise at some point, someone will notice that you are not normal and will make fun of you, simply because "you have an issue".

I hear all the time two things that piss me off. And pardon my language but this is going to be raw and uncut. I am not going to go back and edit this.
1. Jacob acts fine. Lets address that. Do your kids freak out after running a little bit, EVERYTIME they run? Do your kids cry for literally no reason at all, EVERYDAY for hours at a time? Do your kids trip on air EVERYDAY? We spent the week up at a family members house this past week. Its amazing. But no one saw Jacob have a seizure first thing this morning, and then his attitude the rest of the day. It was bad. I mean yelling, for no reason. Biting, punching.... Yeah he did that. But lets get one thing straight. He isnt stupid, or handicapped in the way he does things. He has a normal IQ. He just has a few things that make him act out. Mitochondrial and autism are those things. And paired up they are a pain in my..... Dont tell me my kid acts fine. Watch him closely next time you are around him. He will complain at least 3 times, that his belly hurts, his legs hurt, his head hurts and his ears hurt. Pay attention. Prove me wrong, I am down for it.

2. Jacob looks fine. I think I addressed this very well at the beginning. But seriously, looks can be deceiving. His legs are going out. He cant stand for long periods of time, and he is full of crap. No seriously, he cant poop. Crappy eh?

You know, I have been thinking of writing for some time but in reality, as his father, I dont need to justify anything we do as parents for Jacob. He knows we have his back. I just wish everyone else did. Dont tell me "we have his back" yet you wont get to know him. You know how many sleep overs he has been invited to in his 10, almost 11 years on this earth? Zero. I know we can all count that high. Has anyone offered to watch him WITHOUT his brother? Naw. Why is that? He is normal right? Is it that you just dont like him? Well his brother gets a ton of praise. Anyone would watch him. But why not Jacob. Tell me why that is? I REALLY want to know. Maybe you need to think about that for a moment. I have time.......


Sorry this is kind of a moan post but I want people to accept Jacob. Love him, like we do. Dont EXCLUDE him from things anymore. If anything he should be invited before other kids, because his time is short. And yeah I do want you to feel bad for him. Why? Because we would feel bad for you if it was you or your kid.

Dont feel bad for me or Brit. We got this! But have the courtesy to feel bad for Jacob, because he doesnt have the time we do.

This is Mito through Jakes eyes!

I watched a video today about a girl who made a video for her high school project about her brother that has mitochondrial disease (mito) and it made me teary, of course.  But it was such a great example as to what mito really is!  So I thought I would do my own little version of that.  This is mito through Jakes eyes.  I have so many more pictures I could of put on here, but I think this is good enough.  This kid has been through SO MUCH!  I cant even begin to say how much getting this service dog will help him.  I hope by looking at some of what Jacob has to deal with on an every day basis, you will understand...just a little bit..what it is like to live with this horrible disease!  And what it is like for us, as his family, to watch him suffer and not have a lot to help him with.  This is a big reason why we need a service dog for Jacob.  This dog will help in SO MANY WAYS!  This will give Jacob the chance to have a "normal" life and not have to rely on mom and dad 24/7.  This will give Jacob the friend that he so desperately craves!  This will give mom and dad the piece of mind that he is being watched over.  It will help us sleep better.  It will help HIM sleep better.  When we go to the hospital, it will help Jacob not get so anxious.  When we are in places with a lot of people where Jacob normally would have meltdowns, she will help him be calm.  All of this is so important to us.  Getting this sweet dog means so much.  More than anyone knows.

And this is mito through Jakes eyes...

This is when we first started to notice things...his droopy eyelids!  This is right before his very first surgery.

His first hospital visit for a clean out

Exhaustion because he ran out of energy

Getting his gtube so he can stay hydrated and not get so dehydrated every day

                                                                     More hospital visits!

The concern in his little brothers eyes

Autism!  And having meltdowns!

Things being too loud

                                       His horrible constipation and distended belly

More surgery

the MANY ER visits

The MANY tests and xrays

Getting sick when his body just doesnt have enough energy to run

Being wheelchair bound because he just cant walk anymore