Doc appt stress

Well the week for our big doc appt is FINALLY here!! I have been stressing out so much about this appt so I can't wait for it to come already. Jake is in so much pain right now. I've never seen him this sick so I know he is very full. Every day, all day, he says he hash jot stomach pain or he has a bad headache. We should of put him in the hospital a few weeks ago bit we have to keep him out of the hospital until after the surgery. He probably needs to be cleaned out before the surgery so we would ha e todo 2 clean outs and we can't do that. Thursday can't come soon enough!! I am so nervous they are going to say we need to be admitted right away. That would put us in the hospital over Christmas and I just can't do that. I need the surgery to be done after the first of the year so that birthdays are done and over with. I will update again on Thursday or Friday with now the appt went!!

Pictures!!

So thanks to Jackie, i found out you can get a blogger app and so now I can post pictures!! So I thought I would post pictures of jakes last hospital visit!

doc visit after hospital

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.

Next hospital visit

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

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!

jacob is 10!!

wow its been over a year since ive written in this blog last. ouch! I always say im going to do better but it just never happens. Well Jake just turned 10! I cant believe that im old enough to have a 10 year old!! Way to crazy. I can not believe he is the big 1-0!!! 10 is such a big age! I am so proud of him and the things he has done with these first 10 years. They sure have been a tough one but he is such a superstar dealing with everything that life brings to him. His birthday this year was a little rough. We were in the hospital for most of the day. But a little begging made it so that we got to leave at dinner time and go have a good birthday dinner! Here are 10 things I love about Jake! 1. I love how much he loves music. Its so much fun to play name that tune with him and hear him sing. He is such a good singer and he is so good at remembering lyrics. 2. He is so brave! He goes through so much and he rarely complains. He makes things look easy because he goes through them like nothing! 3. He is sooo tall!! He is already 5 ft!! He is going to pass me up in the next year...I just know it! 4. I love when he gives me hugs. Its not very often I get a hug from him, but when I do...they are the best! 5. He is so smart. Being his "teacher" I get to see just how smart he really is. I love being able to see his face light up when he figures out something new. 6. He is a dish washing maniac! I think he is the only child that LOVES to wash the dishes. He will practically beg me to let him wash the dishes. 7. He is such a friendly kid. He is always saying hi and how are you to everyone we see. 8. He is always so happy. No matter what is going on, he has a smile on his face or he is laughing away. I love seeing his big smile!! 9. I love that he can out eat me! He has a big appetite on his small little body. He can eat just about anything that is put in front of him. He already have a teenage boy appetite. 10. And I love that he is MINE!! I couldn't ask for a better Jacob! He sure does bring my life joy, and I am so glad that I was chosen to be HIS mom!!

Moving on…

I guess I should write another post since the last one was so depressing haha. I hate looking at my blog and seeing that post. So I figure I will write another post so that I can look at something happy instead!

So for the last year and a few months we have been living in Phoenix. We really loved the house we lived in. We were renting from my brother Trent. The house was perfect. Everything we wanted and more was in that house. I loved the school that Tyler went to. I am SO GLAD that Tyler had that as a starting point to his schooling years. He learned so much from going there and it was so important that he learned such great skills. We loved living so close to downtown Phoenix. It was fun to be able to get there so fast and so easy. We went to lots of events and stuff. It was close to PCH where Jakes docs are and it was close to Toms work! Everything seemed great. Well that is until it was time for Jacob to get therapy. We could not find a therapy center for Jacob out in Phoenix. Even our support coord said that it was hard to find therapy where we live because not very many people want to work out there. So after a LONG year of no therapy we decided that we needed to take Jake back to LIFE. So I started driving there 3 times a week. It was horrible! The drives were so long and I started to dread going. But I knew that I had to for Jake because he needed this therapy. After about a month of driving back and forth I told Tom that it just was not working and we needed to either move closer or just not do therapy anymore. Tom was VERY against moving. He loved where we lived, he loved everything about it. Both of us had callings in the ward that we loved and did not want to give up. Every time I would bring it up, Tom would just say, NO...im not changing my mind! We are NOT moving. I prayed soo hard about what to do. I felt like moving would be a good decision but Tom was so against it that I had no idea what I should do. I looked at a few houses and was trying to figure out if we did move where we would go. But nothing seemed right. Every house that I looked at just was not the right one. I just never had a good feeling. Both of us felt like either decision was not the right one. So we thought we would just stay and drive and do what we are doing. The night of Tylers kindergarten graduation, my mom was going to take the kids overnight. So while we were at home I just had a thought to look one more time online for a house. So the very first house I did I emailed and got a response right away! So since we had to pick up the kids the next morning we thought we would go look at that house right after. When we went the next day....as soon as I stepped in the house I just felt so good about it. I felt like this is where we needed to be. I was almost in tears because I just felt so strongly that we needed this house. But I knew that Tom still would not be open to moving. When we looked at this house...I just told Tom...please look at it with an open mind. But when we got done, and in the car, he said, I really felt like this is our home! And right there I knew why I felt so strongly about it. I knew that we needed this house. Everything after that fell right into place. We signed the lease and moved in a week later! We love where we live. We feel so at home and so comfortable here. I am so glad that we made this decision but I am still really sad to leave our phoenix world behind. I know that Heavenly Father had put us in Phoenix for a reason. And I know that he wants us here for a reason. We may never really know what those reasons are but I am glad that we can follow what He wants us to do.

Now hopefully we can stay here for a very long time! I am tired of moving!!!

So the week before school let out for winter break I decided that I needed to pull Jacob out of school. So we started the new year a homeschool family. I now teach him at home. We signed up for a school called AZVA and its amazing! It is working so well for Jacob. He really enjoys it and is learning so much. And I love it because I get to help him learn. I can really see why teachers always have such a hard time with him though. He is so easily distracted and does not pay attention when there are other things going on. But I have learned how to get over that and we are really working good together. We have really gotten a good schedule going and I think having that schedule every day really helps Jacob. I hope that this continues to work good.

Friends...

This is a touchy subject for me. I think it is so vital to have friends...and good ones!! Friends that you can tell everything to. Friends that you can go to their house and even though it might be messy and horribly disorganized you dont care because you see past that. Friends that even though you are not perfect that friend thinks you are darn near close. Friends that when you hang out you laugh and have so much fun! Friends where you have lots in common and share the same interests.

There is no one in my life that fits all that and I miss that. There are a few wonderful people who fit that in my life...one very good friend but we just never get to hang out =( I miss having a friend. I make friends but for some reason they only last for about a month and then what I call the fizzle out period begins. So I am starting to think maybe its me. Maybe im doing something wrong. Tom assures me that its not me and that I just dont need to have friends. Maybe I dont...but when I see people talking all the time of how much fun they have with their friends I get sad. I used to have friends, but then we moved.

I wish my kids had friends. Its sad to see that they are growing up without having friends too. Its not their fault. I know that Jacob is hard to be friends with but he is trying. At least they dont get sad that they dont have friends. They dont really know the difference. But I do. I had so much fun growing up because I had the best of friends.
Tom doesnt have friends. Well he has guys that he works with that he hangs out with at work but they dont hang out when they are not at work. And I think im ok with that. But not having friends is ok with Tom. Maybe I should just learn to be that way.

My goal would be to find a family of friends. People that we can all get along with. We love to go camping and love going with friends. So finding a family to go camping with us or on a road trip or something would be so much fun!

So I got an email from a lady at CSN asking if I would review a product. After looking at the website I was so excited to be able to do this. Have you ever been to their website?? If not its great! CSN has over 200 stores! You could find great things for your house. Since I am trying to get my house all cute and decorated these corner tv stands would be great!

I will be finding something great to review in the next few days so keep checking back!