Cutest Blog

Monday, December 13, 2010

Daniel wrote a letter to Santa

I wish John's school wouldn’t send home quite so much homework for him. We struggle with that every night. I am praying to figure out a way to get him to do the work without the big fight. There has to be a better way then yelling at him. Bribing him into doing spelling just doesn’t work. I am not willing to buy a new video game every night and I think that is about the only thing big enough to get over his dislike of writing. He has a book report due tomorrow. I am dreading homework tonight. Editing spelling (his worst nightmare), writing a book report, reading, and vocabulary and it is his turn for Family Home Evening lesson. We’ll probably put off Family Home Evening till Tuesday this week. Maybe, we’ll see.


Daniel is doing great other then we got a rash from a cookie that had some sort of Hazelnut stuff in it and he now has fifth’s disease, yet another rash, and he did something to his toe yesterday so he is limping. He said about his toe, “Outside, Sunday, toe hurt”. It wasn’t even in that order. I asked him if he stubbed it but he didn’t respond. I think he did something on the concrete. I didn’t even know he was outside yesterday. He wasn’t supposed to be.

Daniel wrote a letter to Santa. Actually, he drew a picture of himself and John (as stick figures) and insisted we send it to Santa. I have always been able to intercept the Santa letters and not actually mail them. Daniel wouldn’t forget. The pictures had to be sent, so Rob helped him write what he wanted for Christmas, not an easy task since he kept saying a space station (that is what Callou wants on the Christmas video), and then sent the letter to Santa. I think they decided on an airplane but now when I ask Daniel what he wants, he says a frame. I think that means a picture of the family in a frame but I am not sure.

That reminds me, yesterday at church; John drew a picture of a snowman. He is going to give it to Daniel for Christmas. (Once again, Callou). Crazy kids. He took his calculator with him to church as well and Eric taught him how to do hi and hello on it. Noah (a child John's age) told me after church that he was feeling pretty down during church until John showed him Hello on the calculator. He thought that was really cool. So John cheered someone up. It is funny how most of the kids in primary don’t know what to do with John, but he and Noah get along fine. Maybe it is because Noah spent a couple of years in preschool with him and saw him in all his moods.  Noah saw John when he had selective mutism and saw him get over it. He just likes John.  I am glad John has at least one kid his age who accepts him just the way he is.

Sunday, December 5, 2010

Daniel is totally excited about Christmas

John is doing all right. He did much better at church today, I think. Come to think of it, I came home early with a head-ache so I don’t really know. I suspect he did better because I remembered his medicine yesterday, which I have forgotten he last 2 weeks on Saturday. It makes a huge difference.


Daniel is totally excited about Christmas. When I got up on the first, he was pointing to the calendar and jumping up and down. I realized that it hadn’t been changed from November to December so I did that, but he was still jumping up and down excitedly. I asked him what he was doing and he said, with a huge smile, “Christmas!” He then ran to the DVDs and got out Callou Christmas video and we have been watching it ever since. Today he found the Winnie the Pooh Christmas video so he is watching it over and over today. He and John are singing and dancing to Christmas music. I didn’t know Daniel knew so many Christmas songs. He is singing all kinds of carols. He doesn’t know the words, but he knows the music. John sings the words once Daniel starts…humming isn’t the right word, but I don’t know what to call it. Ahhing? He says a few words and just makes the notes for the words he doesn’t know. It is fun to have someone so excited about Christmas in the house. He is so-o-o sweet.

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.

Tuesday, October 5, 2010

we practiced getting baptized

Last night we practiced getting baptized by immersion in the bathtub.  We dunked John and Daniel.  It isn't official.  We didn't do the prayer and there were no official witnesses.  We just wanted to see if they would actually go under the water.  John and Daniel’s baptism is on the October 9th, the same day as the SHACJam.  John is terrified of water and we have struggled to have him get anywhere near water.  He tried to run from us, but we got him undressed and standing in the bathtub, clining to his dad.  After a while, we had him sit down.  He has not sat in a bathtub since he would no longer fit in the baby tub.  Then his dad pulled him to a standing position and John clung to him.  Eventually he let us get him under the water.  Then he said he was very brave.  He will need to be very brave on Saturday as well.  I will be praying for that this week. Daniel did fine.  He was a little uptight, but he came out smiling.

ShacJam is the Boy Scout council’s big 100th anniversary of scouting party. They are going to try to make a new Guinness Record by shooting off a whole bunch of model rockets. Your dad made them for John and Daniel. Daniel was really excited about his, but your dad didn’t want them messing it up. If they can find the rockets when they come down they will send them back to us. We decided it wasn’t a good day for us to go with the baptism, marching contest and all.

John is doing pretty well. He earned Kirby’s Air ride and is now a pain because he won’t do anything other then play the game. That will dissipate in a few days though. You dad and I went to his parent/teacher conference last Friday. He is still running out the room and screaming, but he is getting work done now. Suzette went to the school and had them change a few things. The 1st thing is he doesn’t switch class rooms first thing in the morning. I have never understood they have the kids spend 15-20 minutes in the class then switch to the other class and then switch back at lunch. I always wondered why they didn’t just keep you in the first class until lunch and then switch. It makes no sense to me to waste time switching classes first thing in the morning. The school did this when my older boys attended.  John doesn’t do well with a transition that close to arriving at school so he is just staying in the class. It is better for him to do the stuff he hates (reading and writing) in the morning and math in the afternoon. He also has his own desk a little away from the other kids next to the table were the special Ed teacher is. That way she can keep a closer eye on him and if he is having trouble moving to the other class, there isn’t a student standing around waiting for him to move. The also give him small stickers as a reward to put on problems he doesn’t want to do. He earns them by good behavior and other stuff like that. I can’t think of a better reward system for John. Doing work to get out of work is a great thing for him.

Daniel is still bouncing around as he always does. He and John have been getting along great lately. They have been doing a lot of playing together. They have a similar sense of humor and love doing the same jokes over and over. I.e. John goes to the bathroom and Daniel walks in on him over and over and over again and they both laugh hysterically over and over and over again. It has become part of the morning routine around here. Magic School Bus is now on Qubo and the Cat in the Hat is on PBS. They are the new favorite shows. Daniel is struggling in his schoolwork though. He brought home paper he did that was filling in the blanks with words. Almost all of them were wrong, but they all made sense in the way Daniel speaks. I was doing spelling with him and had a fill in the blank. It said, “Jack__________a red shirt to school.” Or something near that. Daniel’s answer was “need”. The actual word was “wore”, but the way Daniel’s speaks, need works as well. The words are always in a word bank. We skipped that one and came back after we used need in another problem. The only reason he was able to do it was because I was there to guide him. When he is on his own…I guess I am a bit worried about his language skills and school work. What do we do as things get more complicated? Remediation isn’t going to help much in this situation.

Monday, September 20, 2010

Hunting Flies

Eric and Daniel were hunting flies last night. We have a fly problem in our house. We do not know where they are coming from but suspect it is from the dead mice in the attic. We had a mouse problem during the summer but after putting out traps and bait, I think we got them. Problem is, no one wants to go searching for them and throwing them away. So now we have 8-10 flies a day to kill. Anyway, Daniel loved tracking down those flies, telling Eric and then watching Eric try to kill them. Eric had 2 DVD cases he was trying to smash the flies with. When he got one, Daniel would hand Eric some toilet paper to pick up the dead fly and flush it down the toilet. Daniel kept getting way too much toilet paper. The shine and Daniel’s eyes as he watched his big brother hunt flies was hilarious. They were having a blast though I think Eric got a little tired of it.


John is getting a little better at school. (And when I say a little better, I mean a very little better.) Suzette came over last Monday and had him do his homework. I have never seen John work so diligently. He did his entire spelling homework (all three pages) without a peep. It is usually a huge fight and maybe even hand over hand to get him to do one exercise let alone 3 pages worth. He has been doing a bunch of catch up work for homework this last week. It really hasn’t been too bad. At first he fights me while I try to help Daniel with his homework, but once I can focus just on John and then DH comes home, John gets busy. It helps that he doesn’t want to miss Wheel of Fortune or Wipe Out. He hasn’t figured out that if he works hard he will have a lot more time on the computer because Mark and Eric are still at band. That doesn’t seem to click yet.



Daniel still has a huge runny nose but I took him to the doctor Thursday and he is now on antibiotics and prescription strength decongestant. His mustache is beginning to clear up, but that may change as he licks when he writes so being in school makes it worse.



We are still trying to figure out a baptism date and time. It may need to wait until November, but I don’t think that is a big deal for John and Daniel. Too baptize or not too baptize…that is the question. It doesn’t really matter for them. They are both under the protections of the atonement no matter what.

September 12, 2010-What do I do with John?

I have had a stressful couple of weeks.  John is giving the school a run for their money and I have been busy shooting off e-mails to them, Suzette, Audrey (Suzette’s boss) and John’s psychiatrist trying to figure out how to help him.  That has been keeping me very busy. 

What do I do with John? He is as non-compliant as ever. He was grounded from the computers and video games four days last week for not using the toilet and as mentioned earlier the school is having an impossible time. He is also as sweet as ever and loving as ever and cute as ever. I suppose I will continue to pray for inspiration. It is the only way to parent him. Oh-John story from school-Some time last week he had a really bad day and told the teachers he didn’t want to be in third grade. He was missing Daniel and wanted to be in second grade with him. A friend of mine told me her son, Abram said (isn’t this rumor now?) John had a really bad day and was running out of class. That is the problems they are having with him…running/leaving class, refusing to work…same ol same ol.


Daniel has been doing really well. He has a cold for the moment so he has his red mustache and a horrible case of the sniffles, but other then that he is his fine happy self. Occupational therapy and physical therapy has really brought his sparkle back. I thought the surgery had changed him, but it turns out he just didn’t have the strength and energy from before. He is dancing around and singing and playing like is old self now. I didn’t know how much I missed that until it was back. I was told a story from school about Daniel as well…The teacher said there was a math problem on the board that no-one could solve, so Daniel got up and solved it. The class all cheered and clapped for him and she said he was beaming. That is one thing Daniel is just like all his brothers (including John), he is a math genius. He had a great birthday as well. Just family stuff, I can’t seem to get myself to do a party for him. Don’t know why, just too lazy I guess. We (another family and us) are trying to figure out a baptism date for him, John, and Cade. The stake date is October 9th but that is ShacJam (big scout party for the 100 years of scouting) as well as a Marching contest and a football game which Jessica, Mark and Eric all have to attend. The Martinez’s have family coming in that weekend, so we are trying to figure out how to do this.
So, life is as crazy here as ever.

Sunday, August 29, 2010

The first day of school

John is doing pretty well. The first day of school he didn’t do anything according to his teacher, but I haven’t heard anything since then. At home, other then a few outbursts, he has been doing well. We had a huge fight about using the toilet, and he has been doing really well since then. He doesn’t want to loose all his video games and the computer for 24 hours again. He has to earn them each day by using the toilet. So far, so good. He and Daniel both had a rough day on Friday. They were up really late the night before because we had visitors. My fault, so I gave them a little leeway. Unfortunately, Mark and Eric were up late for the football game as well. I was really glad they all went to school that day. It would have been a grump-fest had they been home. I sent them all to bed early on Friday night. None of them protested.


Daniel is doing fabulously as always. He keeps going in my room to watch TV and destroying my bed, but other then that he is a sweetheart. He loved on Rory (his cousin). She was a little surprised, but the big surprise was that she could call him by name by the time they left (she is almost 2). She took the toileting doll with her. One toy out of the house and about a million to go.

Friday, August 13, 2010

the I-Pad and autism

My sister sent me this link to an article in the Seattle Weekly.

To me it was obvious that an I-Pad would be attractive to autistic children and I have long since thought that a computer would have more patience repeating thing the thousands of times a child with special needs might need to see and hear something then a live person.  It is also better at repeating itself exactly and being predictable.

http://www.seattleweekly.com/2010-08-11/news/thriller-app/

An Autistic Conversation

John is having a hard time now that big brother Paul is home and school is out. He and I are having big fights about using the toilet, AGAIN! I am so-o-o tired of that fight. I called his YCAP teacher this morning and she told me that if he messes his pants I need to ground him from everything and make him stay in his room all day long and then the next day he has to use the toilet before he gets anything. I went to warn him, but he had already gone in his pants, so he is in his room all day throwing a fit. We fought it out on Monday as well. I am not a good fighter, and I hate having power struggles with my kids, but this is one I have to win for his own good and for everyone who lives with him. Sigh, he was doing so well for so long and now he has regressed again. I guess Chris leaving on his mission and Paul coming home has messed him up a bit. Once school starts again it will be easier, I just have to be mean until then and every weekend after that. He has definitely made life more difficult for me.

Daniel is doing great! During church last Sunday he was sitting at the end of the family next to some other members. She told me he was singing Camptown Races all through sacrament meeting. She thought it was hilarious.

That reminds me of a John story that happened at church.  We were switching classes and waiting in the hall for the other class to leave.  John's friend from pre-school walked by.  He is on the spectrum somewhere also but his parents haven't had him tested, just everyone who knows him recognizes that something is up.  Anyway, John said, "It's nice to see you, Noah."  Noah went to his mom who was standing nearby and said something to her.  I told John to try again because I didn't think Noah heard him.  Noah said that he had at the same time John was repeating himself, neither noticing that the other was talkin.  Then John said, "Can I come over sometime?"  Noah said, "Sure!"  I said, "I think we need to ask your mom first!"  His mom had gone on down the hall to somewhere else so John and Noah continued their conversation.  John showed Noah the picture he drew earlier of a computer screen and said, "This is Windows 7."  Noah said, "I have an x-box."  John said, "I drew a computer."  Noah said, "I play violent games."  John said, "I have a computer at home."  After I told Noah that we didn't allow John to play violet games, he said, "My dad watches me."  The he and John continued talking at each other...John talking about computers and Noah talking about x-box.  I found this obviously autistic exchange amusing.  They were both standing there looking at each other and taking turns talking but neither one of them was interested in what the other was saying.

Saturday, August 7, 2010

a “picnic” on the stair landing

John is home now and enjoying his freedom from school. He has been in a pretty good mood, too. We haven’t had a ton of fights. Just a couple. He’ll get grumpier as when he is not in school for a longer period time. As much as he hates going to school, the schedule really helps him.


Last night, I ended up being having to take John and Daniel with me to drop Mark off at band. There was a young man walking with a cooler down the road. I said, “That looks a like a band person.”  I figured Mark might know him so I asked. Mark said he did, so I forced Mark to ask him if he wanted a ride. The kid, named Alan, accepted. John asked Alan if he was coming for a sleepover. John became sleepover obsessed. He has been sleeping in Eric’s bed while he was away at a Boy Scout high adventure campout. Mark found John in Daniel’s bed last night. They were having a sleepover. Mark chased John out but he ended up in Paul/Chris' bed (depending on who is home from college at the time). Eric shooed him from Paul’s bed to his own. Silly John.

Along the same line, we drove by the baseball field/park where the Jr. High concert in the Park takes place. John remembered that we had a picnic there last year. He started asking about having a picnic, repeatedly.  I had washed blankets some old blankets, so they were sitting on the stairs waiting to be put away. I had John grab one and he and Daniel had a “picnic” on the stair landing. We had eaten dinner before we left, so they ate chips.

Daniel is his cute chubby self. He is getting a little stronger every week and becoming more hyper along with it. We tried to explain about Paul (who has been on an LDS mission for the last 2 years) coming home this week during Family Home Evening. He didn’t seem to understand. We couldn’t find the airplane picture for the calendar, so we put up a car picture and the birthday party picture to show that we would be happy that Paul came home. Daniel seemed oblivious until Wednesday morning. When I got up he said, “Mom, Mom,” jumping up and down and pointing at the “today” card. I said, “What is happening, today?” He said, “Wednesday.” I said, “Yes, and what is happening on Wednesday.” He pointed to the car. I said, “And what does that mean?” He said, “Paul drive home! Sic o’clock!” (He did understand the FHE stuff!) He looked at the clock. It was 8:30. He said, “It sic o’clock?” I explained That six o'clock is when the big hand is on the 12 and the little hand is on the six.  Then I told him that it was the big hand on the six, not the little hand, but he didn’t really understand very well. He sort of understands time, but not quite. I was afraid he would be asking every time a half hour rolled around, but he did all right. We actually got home at about 4:30 so we never had the problem of reaching 6:00. We thought we would get stuck in traffic, but we didn’t.  It was wonderful to see my oldest son again.  Daniel and John have followed him around the house and tried to get his attention and play with him.  Paul has been great.  He really missed us.

Monday, August 2, 2010

John Latest Story

John Strikes Again
By John Frame

Once upon a time, it was a superhero named Super John that saves the day from The Unthinkables.  First was Rock Brain trying to get Tommy stuck on an idea.  John's mommy says, "John, dinner!"  John was playing with his dog, Bart.  John says, "Here boy, get this one."  John imagined he used a rubber chicken.  John used one more toss.  It will be super far.

THE END

FYI-we don't have a dog.

Sunday, August 1, 2010

July 29, 2010 I played a short game with John and Daniel

I played a short game with John and Daniel. I closed my eyes and asked them if I could see them. They both said no. That means they understand that other people don’t see the same things they do. That is a big step. I had them close their eyes and said that my eyes were open. Could I see them? They both said yes. Wohoo! It is a step toward them understanding that we are separate people and see and think differently. It is something Autistic people have a hard time understanding. Later on Daniel closed his eyes, lay back in the recliner seat and hid his head behind the couch. I told him again my eyes were open. “Can mommy see you?” He answered, “No.” Oh well. Not completely there yet. I laughed and said, “Yes I can! I can see your purple shorts!” (He was wearing the Fielder PE shorts.) He said with annoyance, “Will you please stop it.” That is his favorite phrase lately. He says it a lot.

John is at summer school. He is having (according to his own report) bad days. His YCAP teacher is on vacation so he is pushing the limits to see what he can get away with. I think of it as a foreshadowing of things to come. I hope they can find someone who can handle him.


Daniel is bored out of his mind but enjoying PBS kids and Qubo. He is doing great at OT. His OT is retesting him now that she understands him a little better and can communicate what she needs from him better and he has made big strides. His hand strength, balance, grip and eye tracking are much better. He is still struggling with the tracking though. That is where you put your finger up and have his eyes follow it without moving your head. You have to hold his head, but he can do it a little. He looses focus a lot though. He can’t do it without someone holding his head though. Poor baby. I think learning this skill and strengthening those muscles will make reading a lot easier. I always thought he just didn’t understand what the doctor wanted but now I know now he really hasn’t been able to do the task. I feel a little guilty for not picking up on it, but I also realize that it was his disability with language that masked it so I don’t feel terrible about it.

July 22, 2010 “I soap"

John is back in school for the next 2 weeks. He is so much nicer when he goes to school. He doesn’t scream as much when he is home less and Mark and Eric are more willing to give him the computer when he has been gone all day. John is also going to camp with his YCAP teacher. She is doing a great job getting him to swim. She threw him in the deep end a couple of weeks ago and he was able to swim to the side. John said he was drowning, but I doubt it since I am sure she was watching him closely. On Monday, she took them to see the Movie despicable me because it was raining and, of course, the pools closed. I was surprised John went. He won’t go with us to the movies. He has gone swimming the last couple of days. He says it is at a “new pool” and that it has a trampoline beside it. He jumped on the trampoline. He is having a good time and learning a lot.


Daniel is loving OT and PT. I gave him a ½ hour warning that we were going and he immediately turned of the SP and started jumping up and down and saying “yeah!yeah!”. It is a lot of hard work for him though. He tells them, “I pretty tired.” And, one more cute thing. Last Sunday Eric brought Daniel and Mark home and beat us by a couple of minutes. It was raining cats and dogs so when I walked in the door Daniel was dancing around without a shirt. He said, “It raining pretty hard!” We responded that it was. He said, “I soap!” I was a little confused and thinking, “Huh? You want to get in the bath and soap up?” But John said, “Not soap. Soaked!” I laughed and laughed. No one else thought it was very funny but I guess my in head confusion and John figuring out what Daniel meant instead of me, made it hilarious to me. I’m still smiling at, “I soap.”

July 11, 2010 Breath in, Breath out

John is doing well. He was supposed to give the opening prayer during church but refused. DH said he didn’t do very well in class. John and DH had a fight about the prayer but John stuck to his guns and refused. At the end of primary he had calmed down enough that he gave the closing prayer instead. I was proud of him for calming down. He sat next to Daniel and played. The Chorister told me that Daniel and John both sang wonderfully and that they almost new all the words to Come Follow Me. Daniel's teacher (She sits next to Daniel holding her baby grandson every week. It keeps Daniel calm to play with the baby.) told me a story about John. She said that the baby had gotten a little fussy so John came over (walked past Daniel) and told the baby that he needed to calm down and go to sleep. Then John proceeded to pat and rub the babies back and sing a song from Sid the Science kid, Breath in, Breath out. I tell John to do that when he is really angry to help him calm down. I don’t usually sing it, but the words are the same. Daniel’s teacher said it was really cute.


As for Daniel, he is his happy self. He did physical therapy this week. The new therapist loved working with him. She called him cute and a very willing worker. She teaches the music in primary so she doesn’t get a lot of one on one with Daniel. It is amazing how Daniel affects everyone who works with him. As Paul said a couple of weeks ago…How can you not love Daniel! Paul said Daniel hasn’t changed at all. Other then being bigger, slightly (very slightly) more cautious and knowing bigger words he is pretty much the same as he was when Paul left.

Thursday, July 8, 2010

Daniel has Wings

Daniel saw something on TV that made him want wings.  He kept asking for us to help him make some but we wouldn't help.  I showed him where the construction paper was and he made himself some wings.  John helped him with the second set.  Isn't he too cute?

That's Mark ruining the picture with the Taquito box.  Unfortunately, it is the o nly picture that didin't turn out blury.  I am terrible at picture taking.

Daniel has started making my bed every day-July 1 2010

I am still trying to recover from all the appointments I rescheduled on top of other appointments. Tuesday I ended up triple booked. Argh! I had rescheduled my therapy appointment for noon. I had Daniel’s appointment at 10:30 which was cutting it close because I need to leave home at 11:15 in order to get to my appointment on time. It was overlapped but then I scheduled visiting teaching at 11:00. I thought Daniel’s morning appointment had been rescheduled to Wednesday but it was his afternoon appointment that had changed! At least I didn’t schedule that appointment over my allergy appointment. I really need to keep the calendar printed out. I really messed up this last week. I had my visiting teaching companion ask someone else to go with her and was a little late to my therapy appointment. It all worked out somehow and now I have my schedule more set in place so I won’t do that again any time soon. I am glad I went to the airport with Chris even though I rescheduled all my appointments on top of each other.

Eric is doing just about nothing right now. He does anything I ask him to because he says, “I’ve just been sitting around for the last 2 hours.” I think he is really bored. He doesn’t even get to fight with John because John is gone all day.

John is at summer school for half a day and then he goes to Ms. Suzette’s camp and gets home at about 4:30. He is learning to swim. Ms. Suzette said she threw him in the deep end yesterday and he was able to get to the edge. When we asked him about it he said he was drowning but I am sure she was watching him closely. He is getting there. I am really proud of him. Today he won’t be swimming though. It is raining too hard. They will go to Pump it UP or the other jumping place. He comes home really tired and wants to play on the computer all evening. He goes to bed pretty early for him because he is so tired. It is really great. He doesn’t even seem to have enough energy to fight much. He does get pretty upset if he doesn’t get the computer, but since Eric has it pretty much to himself all day long there aren’t really many fights. Just when John first gets home and the person wants to finish up what they were doing. That is usually Mark so-o-o since Mark is gone…no fights.

Daniel has started making my bed every day. John even calls it his chore and sometimes helps. DH went in the other day and Daniel had pulled all the blankets off and made a mess of things, (though are bed is usually pretty bad to start with) so DH complained. Daniel said, “I fix it,” in calm, quiet voice. DH let out an exasperated sigh. “I don’t want you to mess it up in the first place!” DH is frustrated. I send Daniel in our room to watch TV so I can listen to the radio or watch a DVD while I work. So our bed is getting made every day. It is really sweet and kind of nice.

We had the missionaries over for dinner on Tuesday. John cuddled right up to them. We tried to explain that they were doing what his big brothers are doing but I don’t think it really sunk in to either John or Daniel. We’ll keep trying. John just kept playing wheel of fortune with them and Daniel was … Daniel…walking around, spinning and singing things we couldn’t understand.

Eric missed a turn and ended up in Sealy-July 24, 2010

I had to rearrange a bunch of appointments so I could go with Chris to the airport. One appointment was suppose to be yesterday but I had double booked Daniel's OT appointment and my mammogram (don't worry, routine yearly which was fine). I couldn't keep all the times straight this week. I had Eric drop me off and take Daniel to the OT appointment in Katy, but Eric missed a turn and ended up in Sealy. Oops. He didn't have cell phone so when the OT place called me and told me they hadn't arrived...it was pretty freaky for about 30 minutes. Eric finally turned around and came back. It was a good thing he went straight out I10, he can't reverse directions very well. I was worried he was driving up and down Katy streets all turned around and unable to find his way out. I was wondering if I should call the police and have them find my car and send him back to me. I was stuck at the doctors office. It all worked out after about an hour but I had to reschedule Daniel's appointment for this morning and he already had PT scheduled so we spent our whole morning there. I did remember to pray though.
Eric said the Daniel had a nice nap on the long drive.  Sealy is a good 40 minutes from our home.

Saturday, June 19, 2010

Daniel had an occupational therapy evaluation

Daniel had an occupational therapy evaluation. He is doing pretty well, but she did notice that his hands, especially his right hand, needs some work. His right hand was a good deal weaker then the left, which is kind of weird since he is right handed and the surgery and hemorrhaging was on the right side of his brain. You would think that his left side of the body would be the problem. She is also going to work on eye tracking. He actually tried to follow her pen without moving his head. That is the first time he ever understood what the doctors were asking him to do. He has ALWAYS turned his head. Maybe he always turned his head before because he couldn’t track without it. I thought it was because he didn’t understand what they wanted. Live and learn. The therapist said he doesn’t track to the right at all and of course his eyes don’t converge (go cross-eyed) when you get closer. That I knew. I just didn’t know it was important.

Thursday, June 10, 2010

I pull and pull…hard I can-June 10, 2010

I took Daniel to a physical therapy evaluation. He is doing okay but he could use some therapy to help his strength and balance return to normal. He also walks with his feet turned out because he doesn’t have flexibility in his ankles. We get to work on that as well.

Funny Daniel story…

I returned home from picking up Chris and John was at the door. “The corn dogs are stuck!” My thoughts “?”. Upon entering I found the freezer door wide open and Daniel tugging at the box of corn dogs. I told them they needed to Mark or Eric to help but then tried to remove it myself. It really was stuck. Daniel said as I was pulling, “I pull (in his not quite able to pronounce “l”s way) and pull…hard I can. It not come out!” I have been laughing and laughing at his exasperated exclamation ever since. Just hearing something close to “as hard as I can” come out of his mouth has me smiling. It is so difficult to explain to people his speech difficulties and how astounding yet normal things like this are. He cracks me up.

Things got a little crazy this week -May 29, 2010

Things got a little crazy this week and I forgot to write for two weeks! Now I am not sure if I will even remember the stories! Next Thursday is the last day of school so things will be a little weird. This whole week was filled with appointments, mostly dentists. Mark, John and Daniel had their dentist appointments. Mark only had one cavity! He has 2 or 3 for the past couple of years at every appointment. John and Eric (Eric’s was a couple of weeks ago) came up clean and Daniel has a filling that is cracking and needs replaced. We did well this time around. We won’t be spending hundreds of dollars like last time. After driving to Sugarland for John and Daniel’s appointments I came home and collapsed. I took them to Little Gym and then had a food storage meeting.

A silly (translate to annoying) thing that is going on has to do with insurance stuff. This is probably what caused the forgetfulness of Thursday. Shell has an insurance (that we didn’t know about until February) that supposedly pays for all cancer and cardiac treatments for their emplyees and dependents. For children the contract is with Texas Children’s.  The insurance company says that all of Daniel’s treatments related to cancer is supposed to be paid for by Shell, but the lady at Texas Children’s who does the administrating of this policy says only stuff that is billed from the oncology department is billed to Shell. So I am getting conflicting statements and what is sillier is who is saying what. The insurance company says everything is paid for including the neurosurgeon and any physical/occupational therapy or anything else that is required because of the cancer. (It is very low-grade and benign, but still a cancer.) So the insurance company is willing to pay whatever but and this is the kicker, the lady a Texas Children’s says that if the bill is not from oncology it is kicked out and sent to our primary healthcare provider and is not covered by Shell. Huh? Shell will pay but Texas Children’s won’t bill? What kind of crazy is that? What does Texas Children’s care who pays as long as they get paid? Usually, it is the insurance that is balking at paying. I am in an upside down insurance world. Of course, it is all about paper work and an understanding of the policy. Whatever…Texas Children’s told me to call the Human Resource department at Shell because I was confused, so I did. They did not know squat. Our (Rob's and mine) helper didn’t even know the insurance existed and only found what was written in the HR book. We didn’t know what that insurance was either by reading the book. So, after a couple of hours on the phone trying to figure this out, our helper person said she would put in a request to find out who the administrator of this policy was. It would take five days to figure out. The insurance company who I had been talking to, but didn’t know the name of the company because it is just a number called me back because she was looking into the issue. Caller ID told me it was something called Global Health… (Ran out of telephone space). It is Global Healthcare Solutions. I need to call back and tell HR the name. I’ll do that on Tuesday when they open up again.

One quick Daniel story, (only one because I have forgotten all the others for now.) Daniel found the magic cape, it has a bunch of stars and planets on it, and a magic wand. He picked up a little dinosaur and put it under the cape. I saw him at about this point. The night before we had been watching old home videos. We watched one with Chris and the incredible shrinking machine. I think that is why Daniel went searching for the cape. I asked Daniel if he was going to say “A La Peanut Butter Sandwiches”, that was what Chris had used on the tape. He said, “No,” then he swished the wand and said, in a Daniel not quite right way, “Abracadabra”, swished the wand and tapped the dinosaur in his hand. He looked at me puzzled and said, “It not disappear.” Then he tried it over and over all the while saying, “It not disappear.” Poor baby. I told him he had to put it in his pocket, which of course he didn’t have since he was wearing soccer shorts. He just looked mystified.

That reminded me of a recent Johnny story. He lost a tooth at school a couple of weeks ago at school. Of course, they always ask about the tooth fairy at school not knowing that I don’t do tooth fairy. John brought it home all excited, yet again. (We’ve been through this before.) I explained that Mom’s and Dad’s are tooth fairies and this Mom doesn’t do it. I even told him I would give him a quarter or two right then and there but I was not going to mess with teeth! He refused. Mark asked him what he expected to get. John said, “10 dollars!” We all laughed. I think he saw that in a video somewhere. I let him put his tooth under his pillow and of course nothing happened. It is hard to facilitate your children’s belief in magic and fairies demise. But I guess it has to happen sometimes. Better me then being teased at school. That is how I comforted myself about telling Paul about Santa. I actually did try to do the tooth fairy with Paul. I told him to put it in a glass of water on the bathroom sink. I went to replace the tooth with money but was totally grossed out! So much for the tooth fairy in our family. It is just too, ew, yucky, gross for me.

Thursday, May 13, 2010

Mother's Day

John and Daniel both gave me “recipe” books they made at school. Daniel’s recipe was:

Eggs

From the kitchen of: Daniel Frame Family Enterprises

Eggs

Mommy likes one scrambled egg. She likes chocolate. (Each kid had a note at the end of their recipes. Daniel’s was) I love my Mommy.

John’s recipe was a how to assignment. I mentioned it last week. It was:

Pizza

Made by Chef: John Frame

Ingredients:

Crust
¾ cups tomato sauce
4/5 cups of cheese
3 teaspoons salt
½ cups pepperoni

Directions:

Roll the crust, then put tomato sauce, then put cheese, then put salt, then put pepperoni, then put the pizza in the oven for 20 minutes, then Enjoy!

He wrote a letter at the end. It said,

Dear Mom,

I love you mom.

Love,

Your secret brother

Too funny! I guess he hasn’t figured out relationships as well as I thought. He seems to get it then he does something like this and I just have to roll my eyes.

One more fun mother’s day story…

I was with John during church on Sunday. They were making things for mother’s day of course. One of the things was a paper that asked them to write down 2 things they liked about their mother. I was talking to a friend  telling her about Daniel’s MRI results when John asked me for help. I said, “Well…What do you like about me?” He answered, “Your fat!” I laughed.  My friend looked stunned then smiled. She said, “I see what you mean about his social language not being quite right.” I understood that John meant that I was squishy and cuddly and since I already know I am fat it doesn’t hurt when children point it out. It might if someone was derogatory about it, but I know John means no harm. He is just stating a fact. What makes it so funny is you expect kids of say 3 or 4 to say something like that. A 9 year old should know better, but it is John and he does not. I am still laughing about it. He can be just too cute.

Daniel has been doing the sweetest thing lately. Often, when he comes home from school, Mark is watching a video on TV (Stargate SG1) and Daniel wants to watch PBS kids so I send him in my room to watch. He used to destroy our bed every time he went in there. Your dad and I were getting really frustrated by sheets and blankets being torn off our bed all the time. Well…lately, after Daniel has been in there, the bed is made! I don’t make beds very often. I didn’t even know he could make a bed! It is really well done too! I keep wondering what happened. I have been telling him when he wants to watch TV in our room not to make a mess and I think I did one day a long time ago, I told him (and Mark, the two of them can really make a mess), with a sigh and rolling my eyes, “instead of destroying the bed, why don’t you try making it for a change.” I think it must have sunk in. Daniel is very proud of himself when he does it. He doesn’t come and tell us either. He keeps it a secret until we discover it ourselves. It has happened often enough that yesterday, after the maids came and made our bed, my husband had to ask who did it.

By the way, Daniel's latest MRI results were that the tumor had not grown at all over the last three months.  It might have even shrunk a couple of millimeters.  The radiologist said it was the same.  The neurosurgeion said he thought it had shrunk.  WOOHOO!!!  We will still have to watch it for at least another 5 years, but no growth for now is good news.  We don't have to do another MRI for six months!

May 6, 2010 John and Daniel are doing great

John and Daniel are doing great. When Daniel came home yesterday he had to clean because he saw the maid service cleaning, so he went and “cleaned” the bathtub. He was actually making a pretty good mess so I promised him he could take a bath after the cleaning ladies left. He was totally thrilled and had a great bath last night, except he got soap in his eyes. He was pretty upset about it, but we all thought he was just squealing and having fun. Chris finally noticed and went to him and found out the problem. I would have never noticed because he squeals so much when he is playing in water.


John wrote a recipe for pizza as a how to project. He did a fantastic job, but he wasn’t supposed to bring it home. His teacher called me and asked about it. Apparently, it is part of his Mother’s day gift. I look forward to seeing what he and Daniel made this year.

Thursday, April 22, 2010

I had one of those flip out weeks

April 14, 2010
I had one of those flip out weeks I have often. I think I am starting to function again today. Easter was horrible. Although I love General Conference, It is much nicer when no one is ill. We all went down like dominoes. It started on Thursday evening with Daniel. 12 hours later your dad and Mark were sick. 12 hours after that I was ill. 24 hours later Eric got sick. That was Sunday morning and then on Monday John came down with it. We were all wiped out. Mark, Daniel and John recovered pretty quickly. Rob and I had sugar problems because we couldn’t eat so it took quite a bit longer. Eric started eating to soon so he took a while as well. We are all recovered now but it was not a pleasant way to start the month. While I was still trying to get back from that, John brought home 2 parent homework assignments. A Lincoln costume for his living museum AND dress a paper doll in traditional clothing from our heritage. After telling him where we were from, he chose the traditional clothing of England. England? What are the traditional clothes of England? No-o-o he couldn’t chose Austria or German or even Scottish! He had to pick England!

So, I totally freaked out and couldn’t function at all because I was overwhelmed. I had pack meeting awards as well, which take up three days. I forgot a whole dens awards this time. Luckily, Rob noticed and I was able to run to the scout shop yesterday. It really messed up my schedule though.

John did his living museum thing today. His Lincoln costume turned out pretty good. I stressed out over it enough. The best thing is he actually stood up and did his report! He talked in front of the whole class and their parents!!!! Can you believe it? This was the kid who wouldn’t talk to anyone outside the family 2 years ago. His teachers said they were having a hard time getting him to write the report. (Duh it’s writing) But he did a great job. I was worried he wouldn’t wear the church shirt or the jacket or for that part any of the costume. I was worried he wouldn’t do the report, but he did great!

Daniel is doing fantastic. I couldn’t help him much with his homework last night because I was doing pack awards, but he pulled it out and kept bugging me until I made Mark help him. Every time Mark would try to do something else, Daniel would come to us for help. He was persistent and finished. It was a lot of writing and searching through a little booklet for the correct answers. I was really proud of him. He needed a lot of help but with Mark’s help and when I finished the awards and after pack meeting he was able to complete it.

John asked on the way home from pack meeting last night, “how many Saturday’s until Chris comes home?” After telling him, I asked him if he was excited about it. He was enthusiastic in his yes response. I told him and Daniel you would be going on a mission in June. Daniel seemed a tiny bit unhappy about it. I think he understands a little because of Paul.

Friday, April 2, 2010

I miss Mark

Daniel had his Reading Restaurant yesterday at school. He had a little Chef Daniel hat and a license to read. He had been telling me all week that he was making a flower. There was a tissue paper flower at his spot. It was really cute. He is reading really well even thought he still has trouble with rhyming words. He kept reading make for take and she for he. After that he went to visit a friend with me. Daniel played Mario cart with the eighteen year old son that is home schooled. He had a great time.

Mark had band practice after school on Tuesday. I was sleeping and Eric was watching the boys, I thought.  I heard Daniel yelling for Mark all over the house and getting really angry. He came in my room and said, “Mom, can’t find Mark!” I said, “He isn’t home.” He said, “Where is he?” I said, “He had band today. Ask Eric.” He walked around the house yelling for Eric, but there was no response. He came into my room and plopped down on the bed and said with a sigh, “I miss Mark.” I asked him what he wanted and he answered (this is what cracks me up) “Sandwich.” I got up and made him one. I guess Mark has been making snacks for Daniel quite a bit. Eric had gone to get Mark from band which was why he couldn’t be found.


John has been doing pretty well. We had some trouble with Monday spelling homework but doing it over the weekend is helping although he doesn’t much like that either. He had to write a story with some of his spelling words.  This is what he dictated to me.  I typed it for him and we stapled it to his spelling workbook page.  He got a smiley face.  He says it is really funny.

Once upon a time there was a father who bought some carrots. Then he dropped the carrots. And someone stole them. And he said, “I hope it doesn’t crash!” And then he played catch with a baseball. And he used a speech bubble and he thought, “doesn’t it realize that this store is kind of crazy.” When he got home he got into the shower. And then he got bald. And every time he waits he’s losing more hair. The ground was about to shake because someone was digging a tunnel. And he said, “I need someone helping them.” And then he said, “it might be the fear of thunder.” And he quietly said, “Or is it?” And so he went into space and saw the Milky Way Galaxy.


The End

He read a chapter of Pinocchio to me last night. I was reading along and he said, “Stop! My turn.” Then after a while he told me to read when somebody talks. That left him with the majority of the reading. He learned a new word. Gendarmes. (French for police man). He couldn’t pronounce it at all the first time but the next time he came to it he hesitated for a second and then did just fine. He was really proud of himself. There are a lot of big words in the book and he reads them with little or no trouble. I try to define them as we go. He was puffed up about reading new words. He is also very much into Crystal Chronicles right now. He spends all his spare time playing it.

Thursday, March 25, 2010

IEP time

By Monday morning Daniel's foot was fine, so I didn't waste time in yet another doctor's office. I hate going to the doctor and spending hours there waiting to find out that nothing is wrong.

Everyone is back in school after spring break. Getting back into the routine went pretty well. John gave us a hard time with his spelling homework on Monday but that is normal. He hates all the writing. For some reason his teacher insists that he does the entire unite in one night. My older boys’ teachers let them either do it over a week or only assigned one or two activities. John and Daniel have to do them all! There are usually four pages of writing. John hates writing so spelling is the worst thing we have to deal with (except maybe church). I am trying to remember to do some of it over the weekend so it isn’t all in one day. That was inspiration, but unfortunately I got it the week before spring break. I haven’t had much of a chance to implement it to see if he will do work over the weekend. We’ll see how it goes this weekend.

We had Daniel's IEP meeting recently. As far as I can tell it went pretty well but after talking with a diagnostician (the person who sets up the meetings) from another school district I am not so sure. She said that her district is cutting out all team teaching and opting to have all the kids go to the learning support room to do their work. That just won't work with all children. Not only that, she said she had to "sell" it to the parents as a good thing and a step up. This is in a nearby school district so now I wonder if I was duped into Daniel not having the in class support he needs. He is getting less speech as well. I was told that he would be having more one on one time in the learning support classroom so he didn't need it. I feel a little guilty for having him get so much so I let it go for now. We will see if his speech continues to improve or if it stops growing. I can't get speech through my private insurance anymore so I have to depend on the school district to give him what he needs. It is hard to tell right now because he has missed so much school due to his surgery and illnesses.

I also had a meeting for John because they needed me to sign the okay for doing their required 3 year testing. The speech lady had plenty to say about where he is in that program and that he needed retesting. Especially since during the last tests he would not speak to anyone outside of our family. They had a hard time assessing how well he spoke and understood language when he refused to speak to them. Most of the rest of the testing won't be done because we all pretty well know that John is bright and is learning, he just hates showing what he knows. If you ask him questions he will answer, "I don't know," but then later he will demonstrate that he does know and was listening and learning. He is an enigma to us all.

Saturday, March 20, 2010

It's Spring Break

Its spring break and everyone is home. We went to the Natural History and Science Museum. John and Daniel had a great time although by the end they were begging to go home. They loved the Chemistry section and the Dinosaurs but didn't much care for the Native American history section (which I loved). Daniel began begging to go home during that part. Then we did the weather forecast. John loved it. Unfortunately, the teleprompter went faster then he could read. You really have to spit those words out fast to get through the whole thing. Even Eric and Mark had trouble with it. John loves being on TV. We promised him to set up the video machine at home for him to use.

After the museum we went out to eat. Daniel stuffed himself. We all enjoyed our dinner. Then it was time for The Little Gym Karate. The boys were so tired. John refused to do anything and threw a fit. Daniel was enjoying himself until he stepped on the side of a mat and went down. He hurt his foot again. The next day I tried to get an appointment with his pediatrician and his orthopedic doctor and neither one had room so we ended up in the urgent care center. The nurse practitioner didn't find anything on the film but I will take him to the orthopedic doctor next week to be sure. I have twice had doctor's tell me the film looks clear only to have another doctor tell me otherwise. The first time it was a stupid or overworked doctor. The second, the x-rays were in the incorrect place so it didn't show up. That was more of the Daniel not telling the doctor the correct place that it hurt. He has such a high pain tolerance it is hard to tell with him when he had a broken bone or when something is seriously wrong.

Thursday, March 11, 2010

Daniel got his first Charlie Horse

 Daniel got his first Charlie Horse a couple of nights ago. He has a cold that must cause an electrolite imbalance because Mark had the same thing happen a week ago.  I could tell Mark how to stretch your calf out to keep it from hurting. I tried to help Daniel with it by pushing on his toes, but he just moved his whole leg. He is walking around on his toes with his knees all bent funny like he is really sore from riding a horse. It looks hilarious. I am filling him up on Motrin, amoxicillin (for the strep) and cough and cold syrup and sending him off to school. He has missed way too much all ready. Part of my heart is saying ‘Poor baby’ and the other part is laughing at the strangeness of all his problems and how funny he is to watch walk. You have to keep your humor about you when things just keep happening. Daniel is handling it with his good nature. He is saying ow a lot though.


John has been doing great. I started reading Pinocchio to him for his minutes reading. He has been getting really bad grades because we haven’t done that part of his homework. We started out reading and Arthur book. That didn’t go over well, but we finished it and he was really proud of himself. Then I searched our house for a book that had short enough chapters and was relatively easy to read. I gave him a choice of about 3 books and he chose Pinocchio. (The original not the Disney.) I didn’t realize how appropriate that book was. It talks about being a good boy and bad boy and not going to school and a lot of stuff that John really has a hard time with. I didn’t do it on purpose, but I chose a book that goes right to the heart of a lot of John’s issues. I don’t know if he will learn from Pinocchio’s choices/mistakes, but it is worth a try. It might be inspiration. The oddest part is, he absolutely loves the book. I am not having any trouble getting him to sit next to me and read with me for ten minutes. It could be that it is part of the homework routine, but that just isn’t John. He fights about everything he hates to do, and he did fight the first four chapters, but now he is not fighting at all. It is really weird.

There is one other really weird thing John did this week. He sang a solo at churc. According to Robert, the chorister was asking for volunteers to sing the question parts of “He Sent His Son” and John volunteered and then he actually sang and Robert he could hear him way in the back of the room! I was astounded when he told me. He is having a really good couple of weeks.

Thursday, March 4, 2010

We started Pinocchio

 John is doing well this week. He seems to have settled down from his spike in anger after Daniel went back to school. I am making him do homework every night and read. He does fight me, but he gets it done. Sometimes I have to do all the reading, but that is okay. We started Pinocchio last night. Much to my amazement that was the book he chose and even more amazing, he understood the first chapter. He thought it was funny. He read the narrative and I read the speaking parts. He thought wood talking was worth giggling about. Especially when I used a funny voice for it.

Daniel was doing great until he came down with strep yesterday. He tried to throw up in the morning after I got him ready for school. I thought he was just hyperventilating and told him to stop it. I thought better of it and took his temperature. It was at 100. Since Mark had been sick I wasn’t too uptight and though I would just keep him home and he would be better today but as the day wore on he started sounding like his tonsils were swelling. I called the doctor and they got him in. I figured if he didn’t have strep at least I would have a doctors note. He missed 25 days because of his surgery. I think I need to make sure he has a doctor’s note for every single day he has missed to make sure it is well documented. His doctor smiled when I told him he had missed so many days and said that the truancy stuff around here is a little stringent. (I agree.) When I told him I thought he sounded like strep he smiled and checked Daniel’s ears. When he looked at his throat he said, “Yep, its strep. We’ll test of course but I am pretty sure.” It was and now Daniel is home today for the 24 hours on medication. Will I ever get everyone well for a whole week?

Thursday, February 25, 2010

The Good Stories about Daniel Ordeal

After reading back throught the last couple of months of posts I realized that I only wrote the bare minimum of what was going on with Daniel at the hospital.  The fun stuff is missing.  The stuff that made me smile in the midst of an ordeal.

When the doctor pulled out the first drain (EVD) and Daniel started hemoraging, the doctor was using pressure to stop the bleeding.  Daniel said, in his babytalk angry voice, "Docor (not a typo, the way he actually talks) You hurting me!" (I can't figure out how to spell hurting without the r sound the way he says it.)  He was trying to pull away, which of course the doctor and nurse didn't let him.  Then he said, pointing to the door, "Docor, you get outta heaw!"  I smiled and giggled a little because I did not know he knew that phrase.  The doctor and nurse looked at me puzzled and asked, "What did he say?"  (That helps in explaining how bad his speech can be.) I told them and they all smiled.  I know Daniel was in pain at the time, but he can be so-o-o cute!  After that was over, I got to thinking about where he had learned, "get outta hear!"  I think maybe his big brothers have used it a little too much. lol

He learned a new word at the hospital as well.  "NURSE!"

Daniel hated that there was no QUBO on TV.  That along with PBS Kids are the only stations he watches.  We watched a lot of PBS.  It became a standing joke with everyone that was working with him.  The funniest part was that no one knows what QUBO is.  I told them they need to get it.  The odd thing is, I am sure a few months ago, while we were waiting for one of his MRI's it was on the TV.  That is how I learned about it the first time.  Now it is over the air, which is what we have.  The hospital has cable.  I guess it isn't on the basic cable stations.
Daniel's school teacher was absolutely fabulous during the whole thing.  She, the school nurse (whom I have known and worked with for the 10 years we have lived here), and Daniel's school speech teacher came to visit him in the hospital.  His teacher had the kids make him cards which he laughed and smiled about when he was in the most pain.  When she came to the hospital she brought a poster that kids had made smiley faces for and signed.  I put it up in the window.  He loved it.  Then, after we got home, she had the kids write a persuassive letter (they were learning about these at the time) to the principal to persuade her to let the kids take a field trip to our house to say hi to Daniel.  The principal wrote back asking for details about who would go with them, how far it is, and how many streets they would have to cross.  They wrote back explaining that it is one street and about 0.2 miles from the school.  (We live really close.)  I guess the principal was getting the OK from the school district as well because it was given the go ahead.  I couldn't believe it was OKed.  No one really thought it would happen.  Daniel's teacher told me that the kids were really good when the principle told them they could go but the minute the door closed they errupted in a cheer.  Daniel is beloved.  She said the principal stuck her head back in the room for a minute. 

Daniel was suppose to come back to school the next week so they had to hurry and get permission slips and set it all up for the next day.  Can you believe that they got all the permissions slips back in one day?  They did and the next morning (the only day it wasn't suppose to rain that week) they walked to our house in 45 degree weather.  That may not seem very cold, but we live on the gulf coast and most of us do not have cold weather gear. They rang the doorbell. 

Because I new they were coming, I had Daniel open the door and the kids all held up paper plates they a decorated that spelled out "Daniel we love and miss you," (I think). 


Then they all gave him a hug and had cookies the teacher had made.  They had a couple of parents and teachers along.  It was wonderful for Daniel and amazing to me.  He was really happy and surprised.   They only stayed about 10 minutes, but it brought a lot of cheer to us.

That, along with the stack of decorated hearts we got from the kids at church (there are about 100 of them) really helped us feel loved and cared about.  Having a child go through this is difficult, but when you have friends that care about you, the load is a lot lighter and easier to carry.

John Writes some stories

John is doing better now. We actually got through spelling homework pretty easily. He did have a little trouble last night with a worksheet that had a lot of writing. I have also been making him read with me. He reads one side of the pages of a book and I read the other. He doesn’t like it, but he is putting up with it. He keeps saying he wants to be the “storyteller”. I asked him what that means. He said, “You get a blank piece of paper…” I understood. He wrote a couple of stories last night on the computer. I typed the first one for him. He typed the second one himself. This is how it goes…

SuperJohn

Once upon a time there was a hero named SuperJohn. SuperJohn is a fairy. And that’s why he’s a valentine giver. And so he ran out of arrows.

The end

He insisted on stapling his stories together so it would be a book. This is the second story that he typed himself.

SuperDaniel


Once upon a time, there was a superhero named SuperDaniel. SuperDaniel is a fairy. And that’s why he’s a valentine giver. And so he ran out of arrows.

The end

I hope it gives you the smile it gave me. I expected it would be something like that when he started typing. At least he is trying and it isn’t the three bears. That is what he told me a few days he ago he wanted to write. He was really happy with himself.

Daniel is doing great. He has quit wearing a hat everywhere. He is still a little self conscious about his haircut and scars but he is doing fine. I have almost gotten the glue out of his hair. Once that and the scabs are gone I will even out his hair. I am a little nervous about it for now. The scabs will probably be gone in the next week or so. He doesn’t like it when I wash his hair though. I think he is afraid it will hurt. Maybe it does…I don’t know. He says “ow, ow” when I gently wash his hair. I haven’t been scrubbing. I suppose that will stop soon as well. It isn’t a loud yell, just a quiet complaint.

Thursday, February 18, 2010

February 18, 2010-Daniel went back to school on Tuesday

Daniel went back to school on Tuesday, (Monday was a holiday). Daniel has actually broken his foot way back when…I can’t remember when he first started to complain, sometime in October or November. He has a couple of hairline fractures. They are mostly healed now, but still cause him a little pain and he limps a little going up and down stairs or walking barefoot. Poor baby…Stupid mommy. I knew something was wrong, but I didn’t take it seriously enough because he only complained when he ran at Little Gym. He really does have a high pain tolerance. The Doctor said they wouldn’t have done anything different though and since he is already under doctor’s orders to do only as much stuff at school as he can tolerate, there wasn’t much more to do (except kick myself). Oh, well…I am okay about it now. It actually just tells me how much Daniel needed the second and third tubes in his head. He must have been in a tremendous amount of pain to act the way he did.

As soon as Daniel went back to school, John went off the deep end. He has had a rough week. He did great the whole time Daniel was in the hospital and even when Daniel was home, but the moment he realized Daniel was well enough to go to school…I am not surprised. I knew he would have trouble eventually. It is a typical way for a child to deal with stress. I was just surprised it didn’t happen the minute we got home from the hospital. He’ll be fine soon enough. It usually takes a young child about a month when stuff like this happens. I expect that will be about how long it will take John to fully get his feelings out. I am pretty sure he doesn’t understand what is going on inside of himself and can’t express it. Maybe I will have a talk with him over the next week. One thing is for sure…He needs some mommy time. I am not sure how to give it too him in a way he will like but I am sure I will figure it out. Inspiration is a great thing to have as a mom. You boys have no idea how much inspiration a mom gets in raising her children. It is a daily occurrence, especially with kids like John and Daniel.

February 2, 2010-John did really well while Daniel was at the hospital

Daniel is doing great. He is probably ready to go back to school but we are under orders to keep him home until after the 12th. He is almost back to normal. He doesn’t quite have the total sparkle back and he is a little grumpy, but other than that he is totally fine. He isn’t running everywhere yet, but for some reason, his foot hurts. I think he injured it several weeks back during karate so I will have his pediatrician look into it. I just didn’t want him around sick people at the dr. office yet. We will go next week sometime, when I feel better.

John did really well while Daniel was at the hospital. Now he is being typical John, fighting everything he is made to do. He has had a little set back in potty training as well. That is to be expected when major stress has been in the house. Kids have setbacks. He is really good with Daniel though. He hasn’t hit him at all this week. He isn’t taking out his anger on Daniel at all either. I asked him what he thought about Daniel’s surgery. He said, “What is surgery?” At the time he was half way to the bus so I told him to ask his teachers. He said later that his teachers didn’t know. I figure they didn’t want to be the ones to explain. I got out some paper and tried to show him, but when I got to the part of there was something growing in Daniel’s brain, I started to loose him. I could see it in his eyes. When I said, “The cut his head open…” he collapsed behind the couch and wouldn’t have anything more to do with it. He ran upstairs. It occurred to me a couple of days later that I forgot to tell him they put Daniel to sleep…so I told him that Daniel didn’t feel anything and was asleep like when you have your teeth worked on at the dentist. He just picked his fingers. I’m not sure he even heard me. He does ask Daniel how his “brain surgery” is.

January 28, 2010-We were released yesterday

I’m home! Yeah!  We were released yesterday at about noon. Rob came and picked us up. Daniel grinned all the way home. He was thrilled not only to be coming home but to get all the stickers (from the monitors) off his chest and the IVs out of his hands. He has sticky residue all over his body. It doesn’t wash off and I can’t give him a bath because of all the stitches in his head. They need to stay dry for a while longer. He will be home until at least the 12th when he sees the neurosurgeon again to make sure everything is okay and he is ready to return to school. If it is approved by Katy ISD, we will have a “homebound teacher”. The school Nurse is working on that. I don’t know how long that will take so I picked up some stuff from his teacher yesterday for him to do. He is really only watching PBS and QUBO. I hope I can get him away from TV long enough to do some school work.


Daniel is a little wobbly but coming home has done him a great deal of good. He is up and down a whole bunch instead of just laying in bed. He will be back to his old self soon. He just needs more stamina.

John is the same old same old. He hates homework and school but he wants to be Daniel’s teacher while Daniel has to stay home. I told him that if he wanted to be a teacher he needed to learn to like school.

January 21, 2010-The growth in Daniel's brain is a tumor

Daniel's first surgery went pretty well. The growth in his brain is a tumor not a cyst. I don't remember the name of the kind of it but I do know it is a low grade tumor that has a pretty good chance of not coming back. It is not malignant. We will watch it for the next year or so to see what happens. Same as we have been doing. The doctor was able to get about 2/3 of it out with the equipment he was using and said that it did not have a good blood supply. He said the chances of it remaining the same are pretty good...not 50%...but significant. He also said the survival rate is 98% for 5 and 10 years (meaning at least that long and probably longer). The treatment for it is surgery. We all ready did that. Daniel now has oncologists as well as a neurosurgeon. We will meet with the oncologist in the future. They will also be viewing Daniel's MRIs.

As for this last couple of weeks...like I said, Daniel's surgery went well. Part of brain surgery is that you put an external drain in the head to help with the build up of fluid while the brain swells from the "trauma" caused by messing around with it. That went well until they went to take it out. Daniel hemoraged then. Nobody really knows why, he just did and I was told it was pretty rare for that to happen. He got a really bad headache so he went back to surgery and got another drain. For some reason, probably because Daniel moves a lot, it pulled out of the ventrical (not out of the head) and stopped working. Daniel started having a severe headache. The doctor's were not concerned until the drain started working again. That is how they knew there was a probablem...so after a CT scan Daniel went back into surgery and got the drain put in on the other side of his head because they didn't want to do anymore damage on the right side. The poor child has 5 wholes in his head...the 2 entrance wounds for the scopes and stuff to see what they are doing and the 3 exit wounds for the drains.

The 3rd drain is working really well and has for several days. He has been running a fever, his head still hurts and his eyes and ears as well. He has an outer ear infection (meaning in the canal, not behind the eardrums). He is doing well today and has been slowly getting better over the past week. His last surgery was Sunday night. The physical therapy people and the occupational therapy people were in to see him today. They got him out of bed for the first time since Jan 12 and he walked down the hall. He did really well. I thought he was a lot weaker then he turned out to be.

The earliest we will be going home is next wednesday. He has a CT scan tomarrow and if that looks good they will "start weaning him" off the EVD (drain). That would take a lot to explain but after all he has been through it will take about 5 days and then they will remove it. If everything is going well, he is eating and his digestive track is okay and he is pretty much back to normal, we will go home.

January 14, 2010-stuck in Intesive Care


I'm at the Ronald McDonald House at Texas Children's. Daniel is doing fine. We are stuck in Intesive Care because the hospital is very full and their isn't a place to put him on the tenth floor where they want him to go. It is uncomfortable for me but he is getting great care.
The operation went fine but it was a tumor (solid) instead of cyst (fluid filled). They were able to get about 2/3 of it out so they sent a lot of tissue to be analized. We haven't gotten those result yet.

He is having trouble eating. He has trouble keeping water down so I suppose we will be here until he is able to eat. It is probably one of the medications they are giving him. Unfortunately we don't know exactly why but the nurses say it is pretty common to be a little sick after surgery. He is acting like a sick Daniel. This morning, before breakfeast he was starting to smile and laugh and his eyes had lost the bleary eyed look but once they gave him the medicine after he had drank a juice box, he threw up and hasn't been quite as alert.

I need to get a shower and sleep before Daniel needs me again. He is a little nervous about being alone. He is watching TV right now so he should be okay.

January 7, 2010-John and Daniel loved having Grandma and Grandpa here

I am a little nervous about Daniel’s biopsy on Tuesday. It is at 8 am if you want to say a little prayer. After the surgery I am going to have Eric facebook the results so people (namely family) can find out quickly. I won’t have access to a computer for the couple of days we will be in the hospital. I am assuming they want me to stay as well. I need to call to make sure. Of course I am obsessing about it. I can’t really focus much on anything else. I am not all that uptight about it, I just have hard time thinking about anything else, so I am trying to stay busy and watch a lot of tv/videos to keep my mind busy. I have book club tonight, which I am discussion leader, and I have to get the awards ready for pack meeting next week before we go to the hospital. I didn’t plan the surgery around pack meeting. Oops, that would have been one less thing to stress out about if I had thought about it.
I took Daniel to the allergist because he got really itchy and red after eating some tollhouse refrigerator cookies with pecans in them. The allergist didn’t test him for pecans because he said it was a big enough response already since it was the first time he had ever eaten pecans and he didn’t want that kind of a reaction in the office. We now have an Epi Pen (one of the inject the thigh needle things if you have a huge reaction to an allergen) for him. He needs to not eat any kind of tree nuts. Peanuts are okay though because they grow in the ground. We assumed it was the nuts because we have had tons of other tollhouse cookies and I couldn’t figure out anything else it might be. We had the cookies for Faminy Home Evening Treat and he was itching before he went to bed so it didn’t take long for it to occur.

John has gone back to school happy and easily, miracle of miracles. He is running happily out to the bus. I wonder how he is going to react to Daniel’s surgery. He was really cute one day when Daniel was running a fever. You know how he always says he is sick, well, he was telling me he was sick but he wasn’t and Daniel obviously was. I took John’s temperature and it was normal so I showed him and he was okay with it. Then I took Daniel’s temperature and it was 102 (he had strep) and showed it to John. He said, “Whose is that?” I said, “Daniel’s”. Daniel was laying on the couch with his head on the arm under a blanket. John leaned over and patted his head and said, “I’m so sorry you are sick.” Then, after getting dressed, he climbed under the blanket next to Daniel and cuddled with him to help him feel better. Daniel was pleased with the attention. I told John he didn’t really want to be that close to Daniel when he was sick, but John stayed until the bus came. (It was only for a couple of minutes.) John showed compassion and empathy. That is a big deal!

Both John and Daniel loved having Grandma and Grandpa here. My dad was really good with John. He and John became pretty good buds. When we went to Battleship Texas they hung out together. My dad gave John rides in his mobility cart. I had a little issue when we went there. I was keeping tabs on John while your Dad and Daniel climbed all over the place and Mark was exploring on his own. John decided he was done with the ship, but I only knew where my dad and John were. They just decided to leave. No one else knew where they were going. My dad hasn’t got a very good memory right now and John isn’t exactly someone you leave alone with an old man with memory problems. I had to run back to the ship from the turnstile and luckily, everyone was right there on deck. We headed back down the ramp to the gift shop and my dad and John were okay, but they sure gave me a fright. I was stuck at the turnstile going, I need to tell someone where we are but I can’t leave my dad and John alone. In the end, I hoped that while my dad picked up something at the gift shop they would be okay if I hurried. Phew! A moment of panic but everything was fine. I guess I get a little overprotective.