Cutest Blog

Monday, February 24, 2014

Best Day Ever!

I got a call from John’s teacher saying he had a great week.  He has been doing his work and been asking to go to class on his own.  His aide is letting him be by himself but sticks around the back of the classJ.  He read out loud in class and in one class finished his work 15 minutes BEFORE anyone else.  Unbelievable!  John is actually doing school work at school and in class! I wonder how long it will last. He has had some bad weeks, but overall he has been doing amazingly well this year.

Saturday was eventful.  I had thought we might watch the parade (so John and Daniel could see what a parade was) but Daniel had a scouting outdoor activity put on by the Order of the Arrow.  He has a great time. When talking about it to his dad, with some prompting, he told us he lit a fire, used an ax, sharpened a knife, tied some knots and then tried to say something else but didn’t know the word.  I had looked at his activity sheet and asked, “Citizenship?” he nodded.  That is the Citizenship that is required for tenderfoot, 2nd and 1st class, not the merit badges.  He also did some first aid so it was a busy morning. Unfortunately, I goofed up on where to pick him up, so he had to wait a really long time until, after a phone call, figured it out.  I knew it was at Katy High School and I was waiting at the Natatorium, but I was supposed to walk past the carnival that was set up for the rodeo and get him.  During that whole time, Daniel, according to the person who was with him, was trying to visit the carnival.  I felt awful and decided we would go later that day.  I didn’t have a pair of shoes on that I could stand and walk around in very long without getting foot cramps.  I called home and asked Mark if he would bring John and a pair of shoes, but he said he was busy. So, I drove home and rested then, Daniel woke me up at the time I said we would go.

After talking John into it, John, Daniel and I went to the carnival.  Mark was still too tired and their dad needed to care of something on the computer.  He called just as I was about to get on the access road but I told him I would be fine without him.
Wow! It think I learned how not to shake my phone camera! No blurry pictures!

We strolled through the rides.  Daniel decided to go on the huge slide that you slide with the burlap sacks but the operator took a break just before his turn.  John said he was afraid of heights and didn't want to go but the operator said he would be in a couple of minutes..  While we waited, John got cold, so I gave him my pink sweater. Not caring what other people think has its advantages, like being able to wear mom's sweater without being embarrassed.

We walked past another ride and then I talked Daniel into going through the Fun House.  He was tentative walking and held on for dear life on the moving floors, but I think he enjoyed it.

   At first, John didn’t want to go on anything,

but when Daniel got off the Fireball, he said, “I was very brave!”After Daniel went on the “Fireball”  John wanted to go but because we were short on time I told him we needed to move on and maybe we could come back.

So they went on what I know as The Eggbeater.  The operators were kind enough to allow me to help John and Daniel into the car.  The boys weren't understanding what the operator was trying to tell them and with the motor planning issues could quite figure out how to get in.  
John screamed his head off and looked absolutely terrified, but he was happy when he got off.

 They tried to spin and after some instruction, figured out how to while they were sitting still, but once they got to flying, it got to hard.  There weren't very many kids who could make it spin while flying in a circle.

Of course, afraid of heights John went on the Ferris wheel. They were both very patient waiting for their turns.
I don't know the name of the last ride.  It made them kind of dizzy. They still enjoyed it but I think they were pretty much done with the carnival.

I asked Daniel what his favorite ride was.  It was the Fireball. 
At the time I didn’t know what it was because I didn’t look at the names of the rides.  Daniel explained it to spinning his hand and saying, "around and around".

As we got in the car to go home Daniel declared, “Best day EVER!”

Monday, February 10, 2014

A Busy Week

A really long week is finally over but this week also has several things to do, none of which are as long as everything was last week.

The first thing on the agenda last week was taking John to see his pediatrician to discuss what to do about his vitamin D deficiency.  He asked us to retest to make sure the labs return the same and also to determine the underlying cause of the deficiency.  There are many mechanisms in the body that produce vitamin D so some of the blood work will be to see if something else isn’t working quite right.  So that is what we are off to do today, take more blood.  John did pretty well getting his blood drawn.  We watched a social story online so that he would be prepared and it pretty much worked
The next day was John’s REED (Review of Existing Evaluation Data) to determine any new evaluations were needed.  Pretty much they are only going to re-evaluate for language.  For everything else, we know how he is doing.  Some things are good, some things not so good, behavior in particular.  Of course, everyone loves him and praises him.  They said even when he is angry he is cute.  As a mom, I agree.  He is my Johnny Angel.

Friday was the Texas Children’s doctor appointments for Daniel.  As I already wrote, the tumor did not grow enough to see over the last 6 months so our next MRI will be at the beginning of August. Once the tumor starts causing symptoms, surgery will be needed along with 4 ½ weeks of proton radiation therapy . We’ve been watching for the headache and vomiting without a fever so long that it seems normal but this time they gave us a few symptoms to watch in case he develops enema (brain swelling).  Basically, it is to watch for the really small seizures, not the big ones where you shake but the tiny ones that hard to detect.  We are supposed to look for: staring off into space, not responding to his name being called, stopping in the middle of a sentence, and lack of attention.  Things like that.  Yeah, that’s not going to work. I was kind of laughing to myself because Daniel already does all of that because of his Autism and language issues.  It is kind of sad and a little worrisome, but oh, well, that is our life.  I suppose if it gets bad enough we’ll start to notice.
Daniel waiting at the Oncology and Hematology Department at Texas Children's Hospital.

Sunday, February 9, 2014

FHE Follow the Prophet Verse 5 Part 2 - Moses and the Burning Bush

FHE Follow the Prophet Verse 5 
Part 2 - Moses and the Burning Bush

Have the students wear shoes
Prepare a place to burn things if you can.  Otherwise, just talk about burning things.
A real or picture of a plant or a bush
A candle or fireplace to light
A piece of paper
A piece of wood
A piece of wool



Bible stories have a lot of resources on the internet so Google Moses and the Burning Bush

Tell, watch, read or act out the story of the Moses and the Burning Bush.  On the video it is the first half of The Prophet Moses.


This would be fun to do outside so you could show a bush and light a fire in a fire pit or bar b que.  You could actually burn a bush.

One day, Moses went to a mountain. (Pretend to climb a mountain.) He saw a bush that was burning.  (Show bush/plant inside or out.  Light the candle or fire. Talk about or burn the paper, wool and wood. * Please don’t burn something if you will be setting your house on fire.  Just talk about it.) But the funny thing is, it did not burn! (Pretend to be surprised.) Moses went to the bush.  God spoke to Moses from the bush. He told Moses to take off his shoes because the ground around the bush was special. Moses took off his shoes. (Remove shoes and if it is not too cold walk around a little outside.)  God told Moses to go to Egypt and free the people who were slaves.  (Discuss what a slave is.  Order the children around and make them do things like stand up, sit down, clap, etc. Or play Simon Says.) Moses was afraid, but God said that He would help Moses.  God would send Aaron, Moses’ brother, would help.  (Act out helping each other or show pictures of people helping each other.) Moses went to do what God told him.

Monday, February 3, 2014

An Attempt to go to the Theater

We have had a busy week and this coming week is even worse.  Last Wednesday is Daniel’s ARD.  That is the meeting where we discuss his school goals for the rest of this year and all of next year.  They are pretty much the same only a little step harder.  He is about 2 years behind on everything.; most of it due to reading comprehension which is, of course, due to language comprehension.  He is doing really well considering his challenges. In Math he is doing great just struggling with word problems.  I know a lot of people struggle with word problems but Daniel struggles because of understanding the words, not the operations.  He also struggles with 2 step word problems.  He is doing pretty well in Science and Social Studies as well.  It is no surprise that he is having difficulty in Reading, Writing and English.  He is starting to write, with a lot of prompts, some things about his life. I don't have any examples for this year yet, but I look forward to posting them when I do have some.

John has been a handful as always.  Today, we attempted to go on a Field trip with his school to the Main Street Theater.  They asked me to drive him down instead of having him on the bus so I could take him home if things got bad.  I couldn’t make it to the school in time to follow the buses because of Daniel’s bus so I headed out. I saw the buses in the distance as I approached 59.  They were on the overpass from the Westpark Tollway. I couldn’t catch them though.  So I followed the Google map. I found the theater but there was a sign on the door saying for school groups to go to another theater. So I tried to follow those directions but because I tried to memorize them and I guess my memory isn’t very good, I couldn’t find the other theater.  I called John’s teachers and they couldn’t figure out how to get me there so after discussing it with his teacher we decided to go to the zoo.  John would still be counted at school because we tried.  

As we drove to the zoo, we found the buses stopping at Herman Park.  After talking to the 6th grade principle while John was being John, we decided to take him to the Museum of Natural History.  It was way too cold for us with our thin jackets to go to the zoo. We had a good time at the museum.  We checked out the dinosaurs but John was bored so we rushed through it.  John wanted to ride the NASA spinney thingy that was near the ticket booths.  So I got him a ticket and he spun around and upside down, screaming the happy/scared scream that people do on roller coasters.  I can't believe he would actually do it.  He usually avoids sensory input that intense.  Maybe going to Disney World wouldn't be as bad as we think it would.  He loved it but didn’t want to go again.  

We went through the Cockerel Butterfly Center.  He loved that.  We were kind of rushed though because we decided to go to lunch with his dad.  John enjoyed the French fries he got in a restaurant down in the tunnels below his dad’s building. And then we came home.  It was quite a day.

John at the Cockerel Butterfly Center.  I take terrible pictures.  They are always blurry.
Tomorrow, John has a doctor’s appointment about a Vitamin D deficiency.  Wednesday is John’s REED.  That is a school meeting about the evaluations that they took this year.  They have to evaluate him about his autism and stuff every 3 years.  Thursday is a day at home for me unless I choose to go to quilt group.  Friday is Daniel’s doctor’s appointments at Texas Children’s.  What a week.  I am totally stressed out but, one day at a time completed by one hour at a time completed by one minute at a time.

Saturday, February 1, 2014

Daniel's MRI

Daniel's MRI was yesterday. As I expected, the tumor is still growing so slowly that is imperceptible between 6 month MRIs but if you compare it to the ones taken a year or 18 months ago you can see the slight growth. The oncologist couldn't make our appointment and the neurosurgeon is out of the country. We didn't actually talk to a doctor but the oncologist left a message that I got late last night so that is all I know for now. We will talk to the neurosurgeon and the oncologist next Friday. It will be nice to ask a few questions at that time.