You are 10!!!

Ohh Jake- I can not believe you are the big 1-0!!! 10 is such a big age! I am so proud of you and the things you have done with these first 10 years. They sure have been a tough one but you are such a superstar dealing with everything that life brings to you. Your 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 you! 1. I love how much you love music. Its so much fun to play name that tune with you and hear you sing. You are such a good singer and you are so good at remembering lyrics. 2. You are so brave! You go through so much and you rarely complain. You make things look easy because you go through them like nothing! 3. You are sooo tall!! You are already 5 ft!! You are going to pass me up in the next year...I just know it! 4. I love when you give me hugs. Its not very often I get a hug from you, but when I do...they are the best! 5. You are so smart. Being your "teacher" I get to see just how smart you really are. I love being able to see your face light up when you figure out something new. 6. You are a dish washing maniac! I think you are the only child that LOVES to wash the dishes. You practically beg me to let you wash the dishes. 7. You are such a friendly kid. You are always saying hi and how are you to everyone we see. 8. You are always so happy. No matter what is going on, you have a smile on your face or you are laughing away. I love seeing your big smile!! 9. I love that you can out eat me! You have a big appetite on your small little body. You can eat just about anything that is put in front of you. You already have a teenage boy appetite. 10. And I love that you are MINE!! I couldn't ask for a better Jacob! You sure do bring my life joy, and I am so glad that I was chosen to be YOUR mom!! Love you, Mom!

More happenings on the medical front

Since the last time I wrote you have been in the hospital 2 times!!! This is crazy, little man! You need to stop these hospital visits. I know, I know, you cant...but it would be nice if we could go a whole YEAR without a hospital visit. Last time you were in the hospital it had only been 2 months since the time before! I will tell you about this last time. You had been kinda sick. You just kept saying you felt like you were going to throw up and you threw up quite a bit. You were just in a lot of tummy pain. So I called the GI doc and she said to get you an xray and then come see her that afternoon. So off to the hospital we went and got your xray done. When I was in the room, I looked at the xray and it looked great. There was no poop that I could see. But I saw a ton of gas. So I was hopeful that maybe your tummy problems were just some gas and that you would be fine. So we get to the doc visit a few hours later and she looks at your xray and says...yep, he is backed up again! AHHH!!! I almost started crying. Well you DID start to cry. You knew exactly what was going on. You knew that it meant a hospital visit. And I know how much you hate them. Trust me, I hate them too. She checked on some things and saw that we needed to get a room first. So she sent us home to pack up some stuff and said to wait for them to call saying there is a room for us. So we got home and not 5 min later, they called and said they were ready for us! So it was a pretty fast wait at home. But it was good enough that I was able to pack a few things. I figured this hospital visit would be fast but it took 4 days!! Almost 5, but I had to convince the nurse that we needed to leave! And she let us =) Right before that, you had a little surgery done. It was called a muscle biopsy. They had to test you for something called Mitochondrial disease. That is a new diagnosis that you have. It explains EVERYTHING! It has been so nice to finally get a little bit of relief from what is making you sick. Hopefully soon we will know the results of the biopsy. I am not expecting to find anything from that. Your muscle had to be frozen and from reading on things, that is bad. It basically kills anything in the muscle to test. So they dont get a good reading off of it. It could give us a false negative. I had asked your doc if that was possible and he said yes. So I have no faith that they will find anything! However, your doc is so confident that you have it, that he already went and diagnosed you with it. So we just need to figure out which type of mito you have. That is the hard part!! You started up with AZVA again. I know that this is the way you need to be taught. It is so hard for you to be in public school that I am happy to be back. You learn so good being homeschooled. Its so much easier being able to teach you. I can see what you know and what you dont know. We can also go through things slowly so that I know you understand them. Or I can see what you need LOTS of help on...or things you are a pro at! Its been so much fun being able to teach you things and see you grow. Love you buddy! Love, Mom

Surgery...hospital visits...and doctor appts...oh my!

The title says it all. This is going to be about your surgery, hospital visits, and doc appts. Lets start with your hospital visits. They still continue...thats the bad part. The good part is that since we moved to Gilbert, we changed hospitals. So now you see doctors at Cardon Childrens Medical Center. Its a great hospital and we are so happy that we are there. You had a hospital visit in January of 2012. We ended up going to the ER for this one. You were not acting right and in a lot of pain and so we decided that we better just go to the ER since our first appt was not until Feb. So after spending a few hours with all the other sick people the ER doc felt that it would be good to admit you into the hospital for another clean out. When we went up to the room...it was amazing. The room was huge and we really felt good being there. The hospital staff was nicer, the doctors were nicer, the rooms were nicer...just everything felt so much better than PCH. If we had to be in the hospital...thats a good place to be. They really tried their best to make everyone feel at home. And we sure did! They even had a keyboard and mouse and you could get on the internet on the tv. That is all you did!! You spent most of the time in 1 position...playing the computer haha. We stayed for 4 days and did your clean out and then went home. There was no tests or anything this time around. But that is always a good thing. Next, ill talk about your surgery. When you were 3 you had surgery on your eyes to lift your eye lids. Your eye lids are droopy and so they will droop really low so its hard to see. Well we went to the doc again and he decided that it would be time to have surgery on them again because from the last surgery they started drooping again. So in March you had surgery to correct that. Well of course nothing can be easy with you. You ended up with an infection in both of your eyes and you ended up missing 2 weeks of school because of it. We were going every few days to the doc to get your eyes checked and make sure the infection went away. But it kept on holding on for some reason. Thankfully after 3 weeks it finally went away!! You did not like the drops we had to put in your eyes every few hours. But you got through it all like a champ and now your eyes are beautiful! I love seeing them. Ok now its time for the doc appts. Since we changed hospitals, we also changed doctors. You have a new GI that we really like. She is really good with looking at you and knowing what to do. Of course they make us do the whole clean out thing at home like your other docs did...but we found out that its clearly for insurance purposes only. The insurance needs to know that we tried everything we could and it failed and so we need to try at clean out at the hospital. Insurance will not cover the stay if they try to admit us straight from the office. Another doc we are seeing now is neurology. He is doing a bunch of tests on you to see if there is something that he can find. They are going to do a muscle biopsy on you to test your muscle for a few different disorders and syndromes. But its ok. They will put you to sleep for that test. It wont hurt you at all. Hopefully we find out some answers. This doc is great and he seems to really know a lot about what is going on with you. Well I hope that is a good update. Its almost your birthday! You are going to be 10!!! That is just crazy. Love you buddy... Mommy

Trying new things...

Once we moved back to Gilbert things started looking up for you. So we figured we would try putting you back into public school. I thought I was going to have to get a job and so the decision came easy. We knew that was what needed to happen. Well it turns out I didnt get the job I thought I was going to get, and so there was no need to put you back into public school. But we felt like we should keep you there. And we are glad we did. It was a great year for you. You learned and had a great time with your classmates. However, it was hard for you to keep up with your peers. You had a full time aide who would help you with anything you needed help with. And it was really good for you. Your grades showed good progress in most subjects. There were some other places you still need a lot of help with. But that's ok, it will come around. You were able to do book reports every month. You did a fun one when you had to do a biography of someone. You picked John Lennon. You dressed up as him and you presented to the class as him. And people were supposed to guess who it was. And no one knew who you were! You did such a great job. Another one was you had to demonstrate a skill that you know how to do. You picked playing twinkle twinkle little star on your keyboard. Your aide said that you did a great job! You didn't need help from anyone!! You were a super star playing your song and showing people how you played it. You sure have come a long way. Another good memory from school is your Greece party! You got to try different foods from Greece and you got to play games and learn a lot of facts. Most of which you already knew. You were supposed to wear a toga but I could not get you to wear one...haha. Well due to your health issues and many other factors, we can not keep you in public school. So once again we are putting you in AZVA where you do great. You are so excited and I know that you will do good. Love you buddy. Mommy

ANOTHER hospital visit!!

A few weeks ago we had ANOTHER hospital visit. This is your 4th one since last september. This time they did not do any extra tests. It was just a clean out. But it took a whole lot longer than every other time. We were there for 4 days!!! It was long and you hated it, but you got all nice and cleaned out and we were happy to be out of there. This time the doctors want to test your muscles and see if there is a lack of muscle strength in your colon. Hopefully these tests go good and it shows that there is something that they can fix so that we dont go to the hospital anymore. I know that you really hate going to the hospital, and I just want to find what is wrong so we dont have to do this anymore.

You are such a strong little kid. You have gone through so much and I really admire you and the way that you handle everything. You have been to the hospital, have more doctors, more surgeries and procedures, than most adults have done!! I love you son! Keep up being strong.

Love Mommy

You are 9!!

Happy Birthday Jacob! I cant believe that you are the big 9 now!!! I know I am not writing this on your birthday...but I have been sick. Yuck! So this is the soonest I could write and feel good.

Your birthday this year was lots of fun but very simple. Your birthday was on a Sunday this year so we had Grandma and Grandad come over for a BBQ and cake and ice cream. Daddy BBQ'd steak and chicken and I made home made ice cream (cookies n cream) and we had a cake from costco. You got such great gifts this time. Grandma was very generous and she got you a keyboard!! Your very first! You LOVE it!! You play it all the time and you really have a ear for music. You are good with hearing songs and being able to play them right away. I cant wait until you are older and see what you do with that gift.

Daddy and I got you a PS2 and a bunch of games to go with it. You love it so much. Its all yours and so you get to play it any time you want!! You sure do love your video games.

I love you so much. It has been a pleasure to be your mommy for the past 9 years. You are such a great kid and I am glad that I am your mom. You are such a special boy and you make me happy every single day. I cant wait until your next birthday. Next year you are going to be 10!! WOW double digits. Maybe I CAN wait until your next birthday. You are growing up way to fast.

Love you buddy.

Love Mommy!

updates

Hi Jake!

So you went the whole rest of the school year with AZVA and it went fantastic! You did so good and you really liked being homeschooled. So we decided that we would try it out for another year. I am really happy with the decision we made and so are you.

You have been going back to LIFE for therapies and ABA. We decided that it was time for you to go back in about May. You needed to have your therapy back. We saw you regress a lot and knew that it was time that you went back. But the drive from Phoenix to Queen Creek was A LOT! It would take us almost an hour to get there!! We were going 2 times a week and that was a lot of driving in the car for you. So in June we decided that it was best for us if we moved BACK to gilbert. So July 1st we moved into a great new house. It has been great for us. And great for you too! You have been so much happier here. You have stopped your nightmares and you are sleeping great again. I know that this was the right decision for us as a family.

I just want you to know that we love you. And everything we do, we keep you in mind. We want you to be the best you can be and we will try anything to help you.

Love you!

mommy