January...new year...more changes

Hi buddy

Well January brought us some new changes. Before winter break was let out I decided that I did not want you going back to eagle. Things just were not going like I wanted and I know that you had a hard time so your daddy and I thought that it would be better if I pulled you out to homeschool you. Well we looked all around and finally found an online school called AZVA and I knew that it would be perfect for you. So we got you all signed up to that and when winter break was over you started your school year with azva. We have been doing it for almost a month now and I could not be happier. And you too! You love doing this and you are learning so much already. I am so glad that I am able to teach you and that you are willing to learn from me. We love spending time together when we are done with school.

Also you had another hospital trip. The beg of January we went back to the hospital for another clean out and more tests. This time you got a endoscopy and they took biopsys of your insides. Well the tests came back fine. Which is a good thing. I did not want any of these to come back with problems. So now we are still searching as to why you cant poop normally. We will continue to see doctors and see what they all have to say about this.

Love you buddy. I hope 2011 is a great year for you.

Mommy

The past few months…

So a lot of medical stuff has been going on the past few months. In the beg of august I took you to see an allergist. You have always had a little bit of a tummy issue. You never really went poop a lot like a regular person. I don't ever remember you being a regular pooper…ever! So since I always hear that autistic kids have a lot of allergy problems I thought that I would see if you were allergic to anything. When we got there they told me that they couldn't really do much until I took you to a GI doc to rule out more tummy issues. When we went to the GI doc he told me it was just a classic case of constipation and that we needed to increase your fiber and you should start going again. So back to the allergist we went. He did the tests and it all came back fine! You were not allergic to anything food related. We were so happy!

So we go back to GI for our follow up. I tell the doc that increasing your fiber did not really do anything at all. So he said…let's do a few tests and see if that shows anything. So we did an x-ray and blood work for celiac disease, testing your thyroid, and then just a normal blood count. I didn't hear back from the doc for a few weeks so I figured everything came back fine. One day daddy called me and said…um Jacob's doc office has been trying to get a hold of you. You never gave them your new phone number. I had forgotten that they had the cell phone number and I no longer had that phone anymore. So I get a hold of the doc and they tell me that your x-ray showed that your colon was full of poop. And that we needed to put you on a clean out. We needed to give you miralax and xlax 6 times a day for 4 days. So we did that….and nothing happened. I called the doc the next day after the clean out ended and she said…well do it again. Sometimes if it's been sitting there for a while it takes a little bit of time to break up. Try it again and it should work. So that next weekend we tried it again. I had an appt with the GI on Monday so I went back to him and told him…nothing worked. He wanted us to get another x-ray done ASAP. And if it showed that he still had poop in his colon, Jacob would have to be admitted for a clean out that they do in the hospital. So we took you right away and went to the x-ray. They called me the next day and said that sure enough, it showed MORE in your colon. So a few days later they called me and said they were ready for you to come.

This was our first hospital stay for anyone in our family. I was not sure what to expect and I know you didn't know what to do either. They called us at 5pm and by the time we got there and up to our room it was around 7pm. That's also when the nurses change shifts. So it took a while for us to get things started. I was just anxious for things to get started and to get out of the hospital. Around 9pm they told me that they were going to take you and put a NG tube in. They took a small little tube and put it down your nose and down your throat and into your stomach. They sedated you so you were a little sleepy but you definitely felt what was going on. I could hear you screaming from the other room and it just broke my heart. As your mom, I really hated seeing you in so much pain. I just cried because I wanted all that pain to go away. I didn't want you to feel like that anymore. When you came back you looked so sad. I could tell that you were crying and it broke my heart even more. Well you started crying again because you couldn't swallow or close your mouth with that tube in. And you cried and cried until around 11pm. Finally we got you to calm down because you wanted to go on a little walk. So I told you that you had to stop crying if you wanted to go on a walk because we didn't want to wake up the other kids that were on the floor. We also had a roommate and we didn't want you to wake him up either. 48 hours later you were released because you were cleaned out!! Yipee!! I was so excited to be out of that place and not have to deal with the yucky clean out process again.

That night you told me your head hurt. I just told you to go lay down and you kinda shrugged it off so I did the same. A few days went by and you complained again of another headache…and same thing happened again. You just shrugged it off so I did the same. Tuesday night you started just screaming! Daddy and I were so scared we had no idea what was going on. When you scream in pain like that we know something is seriously wrong because you have such a high pain tolerance that nothing hurts you. You said that your head hurt so very bad. So we told you to go to bed and you did. About an hour later you came back out seeming fine and sat on the couch and watched tv. I looked over and you were lying on the chair with a blanket and a pillow over your head. I am pretty sure you either had another migraine or that it never went away. The morning came and I asked if your head still hurt. You told me it did so I said well you will have to stay home from school and you can't go to scouts tonight. He told me…I think I need to stay home but I still can go to scouts. So I figured you were faking and sent you on your way to school. Just in case you were not faking I wrote a little note to your teacher just saying that if you got a headache to call me ASAP and I would come get you. About 9am I get a phone call from the front desk lady at your school and she said that you were in class and complained that you had a headache. Your teacher asked if you wanted to go lay down and you said yes. So she got you up and started to walk across the hall and you then passed out. So I ran out of the house and ran to the school. When I got there I got another phone call that said to not freak out but they had to call the fire dept to come and check you out. When I got there you were on the couch and you just looked so sick. Your teacher said that when she saw you, you were so pale. You looked almost grey! So they were taking your blood pressure and you had to stand up for it. When you stood up you passed out again! So they decided that you needed to be taken to the hospital. They called an ambulance and they took you to PCH (Phoenix Children's Hospital) When we got there they told me that while you were in the ambulance they pressed on your tummy and you said that it hurt. So they wanted to do more x-rays and see where you stood from there. So once the x-rays came back they told me that there was MORE poop in there than there was when you went in the first time that last week. The doctors were all confused on why it was coming back so fast. So once again, they wanted to admit us to the hospital to take care of it. So we went home with them saying that we needed to wait for a call. Wednesday went and came…so did Thursday, and Friday…and most of Saturday. You were still having headaches and your stomach hurt and we knew that we had to get you into the hospital. Grandma and Grandad were really worried and so they called the doc themselves and told him that you really needed to be admitted and fast! So our doc told us to take you back to the ER. That way you would be there and they would have to admit us. So we did. They did more x-rays and again showed that there was a lot of poop in there. So we were in the ER for 4 hours before they FINALLY took us up to a room.

This time around we knew what to expect. It was so much easier on us all. You knew what was going on and we also knew what to do. We were prepared for the long nights and for the bed and diaper changing every 20 min or so. Well when we got up to your room we found out we had a roommate. It made it hard because your roommate needed a lot of attention also. So it kept us up most of the time. We didn't get much sleep. You got admitted on Saturday night and we were told that nothing was going to happen until Monday morning. So we were just hanging out in the hospital until Monday when the procedures would happen. You had to get an MRI and also a barium enema. Those are not fun tests for you. The MRI you had to be put out. So while they put you out we requested that they put the NG tube in while you were sleeping. It was so much easier being able to get it done that way because you woke up and it was already in! All the tests they did on you came back fine. They said that you did not have any of the diseases that they had thought you had. So that was very good to hear!

Right now you still are not going poop like we want but you are definitely going more than you were before. We go see the doc on Nov 1^st so hopefully they will get us on something that will help you. I hope all of this madness is over with but your doc told me that this is probably going to be a way of life for us. And that you will need many clean outs. Let's just hope it's not every week!!

Love ya buddy

Mommy

Happy 8th Birthday Jacob!!!

Hey buddy-

So you are the big 8 years old! What a birthday this was for you. You had so much fun on this day. You were special enough to be able to get baptized on your birthday. So after your baptism we went back to our house and had a birthday party for you. All of your cousins came to support you. It was such a nice day.

You have grown up so much in these past 8 years. I still cant believe that I have an 8 year old son!! Jacob, you are so special to us. I am so glad that you are my son.

This past month has been a trying one on you. You sure are trying hard at school, and I can tell. However, I think that you need more help than you are getting at school. You are having so much fun making new friends and it makes me so happy. I got a happy tear in my eye the other day because when I dropped you off at school I actually saw a boy calling your name and wanted you to come to him. And that makes me so happy. At school you are doing wonderful, socially. You are making friends and you are being so good to them and they are being so good to you. But adjusting to class is not easy for you. You are having a hard time listening and following directions. I get to meet with your teacher and the special ed department and we are going to figure out what to do to be able to help you.

I love you buddy and im so glad that you are my big 8 year old now.

Love,

Mommy

First day of school

Jacob-

Yesterday was your first day of school at Eagle! You and your brother looked so handsome in your uniforms. You were so nervous about starting. You did not want to go to school because it was not at LIFE and you did not have Ms Lori, Ms Erika, and Ms Dar! I am sorry that you were so upset about it all. But I promise this school will be just as good.

Yesterday when we got there you were a little upset that there was a girl sitting next to you. But I promise it won't be that bad. You will come to not be so scared of the girls. When you got home you told me that you had such a good day. And that it wasn't so scary at all.

I got an email from your teacher and here is what it says…

Hi Britney,

I just wanted to let you know how today went for Jacob.  Overall, I was very pleased.  The morning was a little difficult.  Jacob was very eager to answer questions, and quite often, forgot to raise his hand or wait his turn.  However, after a quick reminder, he self-corrected his behavior.  The afternoon was great!  Jacob was very attentive and had very few interruptions; although he looked quite tired!  He also did great socializing with his peers.  During indoor recess, he played a matching game (that he loved!) with a few other boys.   As a whole, I felt Jacob had a good day!

Please let me know if you have any questions.

Thanks!
Rachael Bergman

 

I am so glad that you did well. It was expected that you had a rough morning because you were just getting used to the school. But so far so good! I really hope that today is a better day for you. You really wanted to go back to school today so I know that you had a good time. You had PE yesterday and loved it!! The PE teacher even knows who you are! So he must really like you. You are special you get to have 2 teachers. Ms Hansen is your special ed teacher. She gets to help you when you start to feel nervous or when you get upset or feel that you can't do your work. She is right across the hall so it's easy for you to get to her class. She also is going to help you make some new friends. I know you want to have friends so bad so I am excited for you to start making friends and to start loving school. I love you buddy and I hope this year is great for you!

Love, Mommy

Summer!

Hey buddy. Sorry I didn't write how the summer went. Summer is now over but I will still write how the summer went.

You had a very good summer!! It was full of fun and playing and lots of swimming. When we moved you had to leave LIFE and not have therapy. But after a month I realized that you still needed therapy. So we worked something out with LIFE that we would go on one day and you would have a few therapies on that day. So Monday was your therapy day. We also took advantage of the summer movie program at Harkins Theaters. And Wednesday was our movie day. It was a lot of fun. We saw some good movies that you loved. We also went and saw toy story 3. You really liked that movie too. So did your brother. We went swimming lots here in the pool by us. We also went swimming with your lomu cousins a few times at the pool in Mesa.

I hope you had fun this summer. I know that I sure did, even though I was sun burnt a lot of it!!

 

Love ya buddy!

Mommy

A week in the house

Well we have been in the new house for a week and a half now. I wish I could say that its been a great move. I wish I could say that its been easy on you. But it has not been. You are not liking the change. You are angry all the time. You seem sad all the time. You are not the same Jacob that you were before.

You are having a hard time with the neighbor kids already. They were laughing at you and you did not like that. I am not sure why they were laughing at you but this is just what you told me. You asked them to stop and they would not stop so you got your new bat and you hit 2 boys on their head and back with the bat. Those kids came over and told us that you had hit them with the bat but we didnt know why. So when we asked you later that night that is what you told us.

You are also being so mean to Tyler. Just a few min ago you gave him a black eye. You hit him in his eye and hurt him. Its almost an hourly thing right now. He cant talk or change the channel when you are watching tv without you getting very angry with him. Hopefully you will cheer up soon!!

*If any therapists are reading this...is there anything I can do to help him not be so angry? Is this just all part of the move?

Move is over

Well we are in our new house. Things are going pretty good. You are adapting well to the new house and the new rules we now have set.

Today was your last day at your school/therapy center. I just wanted to write down a few emotions so that we never forget.

I was not there to pick you up from school. Tyler had a meeting at his school that I had to be at. So grandma came instead to pick you up. I am glad I did not go. This has been very emotional for me. This is the first place you came when we first found out about your autism. This is where you were through everything you have been through. You have grown so much in the past 2 1/2 years. I think leaving your school was the hardest on you and me! Grandma told me that when you were saying goodbye you started to cry. I am sorry for doing this to you. I know you are going to miss your friends and your teachers but I promise you will see them again! You have been so sad at home. Every hour or so you just take a few min and sit and think. And I can tell you get a little sad. We were talking about good memories that you had in school earlier today and you started to cry again. But I know that you will do better tomorrow. We have a new journey ahead of us and I am excited and scared at the same time.

You got such great things on your last day of school. You got a new back pack and lunch box!! You were so happy about that. You will use it every day and think of your teachers when you use it. I know it will be very special to you. You also got a really cool bat and ball. There were some markers and crayons and some coloring books that will help get you through the long summer. Also there were some very sweet cards written by the boys in your class. Those are something that you will always keep im sure.

Love ya,

Mommy