Cutest Blog

Monday, November 29, 2010

We tried testing for sugars in food

John is struggling as always. He and Rob are butting heads and driving each other (and the rest of us) crazy. John had a hard time at church, yesterday.  He ended up falling asleep during sharing time. He kept saying he was tired, which isn’t hard to believe since he has been staying up till midnight all week. I did a chemistry test with him yesterday, but he wasn’t all that interested. We tried testing for sugars in food. The experiment is from Janice VanCleave's A+ Projects in Chemistry.  It was pretty fun for me although John was just annoyed. Problem was the sugar came up as having zero sugar content. Something went wrong, or the sugar in our container is splenda. I’m not sure which. I thought we were keeping them separate. The root beer didn’t work out to well either. It was too dark to tell any color change. John’s teacher didn’t approve it for his science project so it doesn’t matter much anyway. I just wanted to see if I could talk John into doing it. It took too long for him to stay interested.

Daniel has spent the days off school watching QUBO and PBS kids. Try as I might I couldn’t get him away from TV. He and I did the YMCA Turkey dash on Thursday. It was really busy and humid but we had fun. Daniel seems to like taking “long walks” with me. He says, “I pi-y tired!” But he always makes it. There is no way I could possibly carry him if he didn’t so I’m glad he did. Next year maybe I will do the 5K. We’ll see though. I’ve been having a hard time over the last couple of weeks. I gotta get myself back to exercising.

Monday, November 22, 2010

November 16, 2010-You shouldn't tell a lie unless you know the truth!

John is doing pretty well I guess. He is as difficult and sweet as ever. He has said some really funny things lately. A few days ago he stood in front of me and said, “Mom, Dad is your husband.” I nodded and told him he was right. Then his dad walked into the room. John looked at him kind of funny and said, “Dad…you are… (he got a really concentrating look on his face trying to figure this out) her wife!” Didn’t quite get it, but he sure tried hard. Then, on the way to church a couple of weeks ago and were riding in his dad’s car listening to one of his accapella CDs. The song was  one about, “my teacher told me not to tell a lie”. John piped up from the back seat. “You shouldn’t tell lies… (long pause with concentrating look) unless you know the truth!” I’ve been laughing for a couple of weeks now at that one. I’m not sure what he meant, but I am pretty sure it wasn’t that.

Daniel is doing great other then he is totally spaced out again. It is good to see him back to his old self, dancing, running and singing. He is really struggling in school though, but he did miss a bunch of days this last six weeks so we will see how this six weeks goes. He loves school; he just can’t do science, social studies, or a lot of the language stuff. It is pretty difficult when you can’t express your thoughts, predict anything or answer how or why questions. He is getting there though. He can sometimes answer why he did something.

November 1, 2010-“How my brain pictures?”

Daniel's MRI went well. We tell Daniel he is going in to take pictures of his brain. He seems to understand. The first thing he says as he is drowsily waking up is, “How my brain pictures?”

We went to the oncologist and the neurosurgeon last week as well. The tumor is the same size. We will go through another MRI at then end of April. The doctor said he would try to get the MRI scheduled for early on a Friday morning so we could see the oncologist and the neurosurgeon on that same day so I wouldn’t be making three trips to Texas Children’s in a week. It took up a whole lot of my week to drive down there three times plus the time waiting for the doctors and the MRI. I’m glad it is over and we are good for another six months.

We went to trunk or treat for Halloween and John and Daniel raked in the candy. John has broken out in a rash though. Nurse Bell, thought, by my description that it might be fifth’s disease but it seems more like an allergy reaction to me. The problem is, if it is allergy, he ate so many different kinds of candy and I was trying some gluten free caisin free foods, that we have no idea what it could be. So, the rash is narrowed down to fifth’s disease, some kind of candy or something in the gluten free flours or breads. We’ll just have to wait and see. He went to school today and he hasn’t been sent home so I guess he is doing okay.

The gluten free caisin free (AKA gfcf diet) is suppose to help a lot of kids with autism get a little better. I guess I won’t be doing it long enough to find out. I’ll try again in a few months and see what happens. The recipes I was trying have been pretty good so far. They taste a lot better then the last time I tried them. I guess the manufacturers have been getting better at it since it has been around for several years now.

October 18, 2010-“My heart, my lung pri-y tired”

John is doing really well with school now that Ms. Suzette and Audrey visited the school and they changed everything up. He is getting the support and incentives he needs to be successful. Primary didn’t go very well this week though. They are practicing for the Primary Program so things aren’t normal. He ended up with me in Sunday school and Relief Society. He did really well with me.

Daniel is as sweet as ever. I just got back from visiting teaching. The sister I visit teach is in Primary. She said when Daniel got up to do his part; he had a huge smile and was just beaming. Daniel does beam. Another cute thing he said. When he is doing physical therapy with Ms. Jana, he often says, “I pri-y tired.” With a sigh. (Meaning, I’m pretty tired.) Well…lately they have been study body systems at school. This last week instead of “I pri-y tired” he said, “My heart, my lung pri-y tired.” Lol

I took Daniel with me to the Autism Walk on Saturday. I was worried he wouldn’t make it. He did great! He did mention he was tired a few times, but when we finished, he still wanted to go in the bouncy dragon place. He played a few other games as well. He was not as tired as last year. But then again, it was not nearly as hot either. We had a great time.

October 11, 2010-John and Daniel had their baptism

Wednesday night John and Daniel had their baptism interviews. The bishop left the door open so I could kind of hear, but there were some other people in the hall asking questions about the baptism. One of them had been a supervisor over baptisms in the temple. He said that a lot of special needs people and people who were terrified of the water came to do baptisms for the dead. He told me a couple of stories, so I started feeling pretty good about Saturday’s baptism, but I continued praying for John to be brave.

Daniel had his interview first, so he came out and the bishop prompted him to tell me what he had said. Daniel beamed at me and said, “I passed!” and high fived me. Then John had his turn and came out and said the same thing but added, “I know a lot about Jesus!”

Everything was coming together pretty well until Thursday night. I got up to get a drink at about 3 am and found Daniel wide awake watching TV. I asked him what was wrong and he pointed to his throat. He was running a mild fever as well so I gave him some Tylenol. By morning I was pretty sure he had strep so I made an appointment, and sure enough it was strep. The day before his baptism! I was hoping and praying the antibiotics would kick in by baptism time. It did. Phew!

The amazing thing is…the baptism went really well. Cade's (a friend who was born on the same day as Daniel) grandparents gave the talks and witnessed for us. They did a great job including John and Daniel.  We avoided participating much just in case someone decided to throw a fit.

John and Daniel’s first grade teacher came to the baptism as well so we had a great missionary opportunity!

Cade was baptized, and then it was John’s turn. We actually thought Daniel would go first, but John wanted to go so we let him. John stepped into the water and then stepped out proclaiming the water was too hot! John and Daniel are like Mark with water temperature. They think the water is hot if it warmer then air temperature. It took a moment, but we talked John into stepping in again, and then he went in and everything went beautifully. He didn’t fight. He didn’t scream. He stood there and then let his dad dunk him. Then it was Daniel’s turn and he stepped in the water and said, “Too Hot!” Once again we talked him into it and then everything went smoothly.

As for the confirmations…John was blessed with better understanding of how life works…kinda sorta…It is hard to explain. Daniel was complimented on how much he loves people and to be able to communicate that love to others. I don’t remember too much of course, it is a blessing and not a recording.

Other stuff to talk about…John and Daniel’s rockets were launched at ShacJam along with about 3000 other rockets. They were going for a world record. Jacob (a scout from our troop) won the lottery and got to push the button to launch them.