A month ago I posted this update. I hadn't heard anything and was worried that this was going to be yet another debacle with this school district. I started leaving messages with the superintendent and the advocate. The superintendent called tonight and after apologizing profusely for letting the ball drop, he started talking about the next 3 weeks.
The principal at the school Drew will be going to was just promoted. That threw a monkey wrench in things. We all want the principal who will be at the school to be involved in this transition. The current principal will be over 10 schools, including the one Drew will be attending. The VP may be promoted to principal so she would be another possibility to oversee the the transition. The third option presented to wait till the principal is named in the next couple weeks. NOT AN OPTION. There are only 5 weeks of school left and I will be gone one of those weeks. (rough life having to go to WDW for training)
I did feel good that he wanted the new school totally educated about TS. He has done his research and now understands that there are probably many in the district who have this that they are not aware of. If 1 in 1000 suffer from some form of TS than Drew is not alone. He did admit they don't have an educational program in place for teachers let alone kids to understand TS. Everyone knows ADHD, Autism and so many other challenges. But very few understand TS.
The superintendent was going to send out emails tonight to all team members and by Thursday have a plan in place to meet with the current principal of the new school, VP and new principal( if one has been named) Then the psychologist and IEP case manager from the new school will go observe Drew and meet with the team at his current school. Then, Drew will visit the new school a couple times to meet teachers and kids. After all of that we will have a HUGE meeting with the team from both schools to finalize the IEP (again). there will also be education for the staff at the new school of all of the parts of TS. All of this before May 11. I am tired just typing it, let alone living it. At some point there will also be education for the students. I am assuming that will be next school year.
The rough part will be telling Drew. He has had so much change in the last year and has just begun to settle in. The superintendent has assured me they have done this many times and most kids settle in well. I have been rehearsing all of the positives for Drew so when we tell him, we can excite him about the change.
In other new - Drew got his CPAP today. Anxious to see how he feels in a couple days after getting good sleep.
Mother nature is still menopausal. We got 9 inches of snow yesterday and 4 more coming tomorrow night. At least it got above freezing today to get rid of most of what was received yesterday.
Drew got a freestanding basketball hoop this past weekend. A neighbor decided to get rid of theirs since their daughters no longer used it. Great purchase for 30.00.
Tuesday, April 16, 2013
Sunday, April 14, 2013
another piece of the puzzle
Sleep has always been an issue for Drew. I should say waking up has been a problem for Drew. I have always said he loves his sleep. He is impossible to wake up. We suspected sleep issues for a long time. I have heard him stop breathing (apnea) when we have shared a hotel room. I had mentioned it to doctors in the past. But no one ever did anything to see what the issue was.
UNTIL we moved here and got hooked up with the children's hospital.
A week ago Drew and I traveled to Broomfield for a night. It was not a pleasure trip but me found some fun. Drew had a sleep study scheduled at the satellite Children's Hospital.
First we stopped for dinner. We went to Gunther Toody's for dinner. Drew was in heaven. they had monitors with old Popeye cartoons on. He didn't say much while he was drinking his root beer float
UNTIL we moved here and got hooked up with the children's hospital.
A week ago Drew and I traveled to Broomfield for a night. It was not a pleasure trip but me found some fun. Drew had a sleep study scheduled at the satellite Children's Hospital.
First we stopped for dinner. We went to Gunther Toody's for dinner. Drew was in heaven. they had monitors with old Popeye cartoons on. He didn't say much while he was drinking his root beer float
Then off to the hospital. After getting Drew hooked up to all the machines and ready for bed our night started. Drew barely stayed awake while they were getting things hooked up so he was out cold.
I wish I had been so lucky.I could not sleep. The "bed" for the parents is not a bed it is a slab with a pillow.
About midnight the respiratory therapist came in and told me that Drew had yet to go in to REM sleep. He had been asleep three and half hours. That was the first clue as to the explanation of the sleep problems with Drew. He also said that there had been some dips in his oxygen saturation.
The RT came in at 3 and said Drew FINALLY had gone in to REM sleep and he could finally put a CPAP mask on him. He immediately went into REM sleep. They woke him up at 6. The RT told me it took about 2 - 3 weeks for the results to be scored.
On the way home (after a Starbucks stop) I asked how he felt. He said he felt a little more awake than usual.
I was surprised when the sleep doc called Thursday. Yes Drew has sleep apnea. The numbers were astounding. I am not publishing them. We now know why Drew is IMPOSSIBLE to wake up in the morning.
Tuesday afternoon Drew will be fitted for his CPAP. We are hoping for improvement in Drew's sleep.
Stay tuned for an update once we see what happens
Saturday, March 30, 2013
talking about having Tourettes
First let me say HAPPY EASTER!!!
Second, sorry I have been MIA. I took Hubs to the ER last Sunday and he had to have emergency surgery Monday morning. He then developed a complication that set him back a couple days. I am happy to report he came home yesterday and is slowly recovering. Not exactly the spring break I was planning.
For Drew twitching has been something he has done for as long as he can remember. First it was a shoulder shrug, then a hop step and over time they have developed. One tic he as is that he holds is breath for a couple seconds. That one bugs me. I worry. His vocal tics come and go depending on stress. We are seeing improvement since the Botox treatment. That treats the simple tic of the head turn.
He has a couple complex tics. The most recent is he puts his hand in front of his eyes and turns his head..
He gets so frustrated. Tonight he was having snack and his body jerked and he spilled milk all over him and the table. He immediately started to apologize saying " I am sorry. It is my Tourette's" I sat down and told him he NEVER EVER EVER had to apologize to me or anyone else for something he could not control. I told him it is part of who he is just like his brown hair and brown eyes. He told me he wished he had a sign he could carry saying he had TS. He always feels like he needs to say he is sorry.
We started talking about how to explain it to people. To educate them and how he could use humor. It is a hard concept for a 10 year old to grasp. I told him the best explanation to give is the one he gave the first time he met his rock climbing instructor. "Hi my name is Drew, I have Tourette's, I twitch"
Works for me. I have a couple of my own. Some were swiped from other TS parents
Tic and the whole world tics with you...or at least stops and watches for a while.
A tic, a shout, that is what it's all about.
Sometimes I feel like a tic. Sometimes I don't.
And my favorite. I made it up and hope it will make the parent Tshirt
Ticcing....It ain't just for clocks anymore!
With something like TS...Humor is the best education. I hope I can help Drew to understand that.
Second, sorry I have been MIA. I took Hubs to the ER last Sunday and he had to have emergency surgery Monday morning. He then developed a complication that set him back a couple days. I am happy to report he came home yesterday and is slowly recovering. Not exactly the spring break I was planning.
For Drew twitching has been something he has done for as long as he can remember. First it was a shoulder shrug, then a hop step and over time they have developed. One tic he as is that he holds is breath for a couple seconds. That one bugs me. I worry. His vocal tics come and go depending on stress. We are seeing improvement since the Botox treatment. That treats the simple tic of the head turn.
He has a couple complex tics. The most recent is he puts his hand in front of his eyes and turns his head..
He gets so frustrated. Tonight he was having snack and his body jerked and he spilled milk all over him and the table. He immediately started to apologize saying " I am sorry. It is my Tourette's" I sat down and told him he NEVER EVER EVER had to apologize to me or anyone else for something he could not control. I told him it is part of who he is just like his brown hair and brown eyes. He told me he wished he had a sign he could carry saying he had TS. He always feels like he needs to say he is sorry.
We started talking about how to explain it to people. To educate them and how he could use humor. It is a hard concept for a 10 year old to grasp. I told him the best explanation to give is the one he gave the first time he met his rock climbing instructor. "Hi my name is Drew, I have Tourette's, I twitch"
Works for me. I have a couple of my own. Some were swiped from other TS parents
Tic and the whole world tics with you...or at least stops and watches for a while.
A tic, a shout, that is what it's all about.
Sometimes I feel like a tic. Sometimes I don't.
And my favorite. I made it up and hope it will make the parent Tshirt
Ticcing....It ain't just for clocks anymore!
With something like TS...Humor is the best education. I hope I can help Drew to understand that.
Monday, March 18, 2013
Outcome of meeting with district
I have been putting this post off. Not sure why because it is good news. Maybe just so much to type? Hesitant things would fall through? I don't know but here we go.
Since moving to Colorado it has been one fight after another with the school. The administration refused to get educated on Tourettte Syndrome. Since the admin would not educate, the staff could not get educated nor could the students. Every day it was a fight. Drew was in a self contained classroom in California - not because of a behavior issue but because it was a good structured environment He thrived. His teacher in California was the most amazing woman who saw the potential in Drew.
Since Drew's IEP from CA was for a self contained class room the district decided he needed to be placed with kids who had bipolar, ODD and other behavior issues. Not the best place for a kid who needed a quiet structured classroom. I couldn't even get him mainstreamed per his IEP.
In January I really started pushing for what he needed. In small bits and pieces they started allowing him mainstream time. The problem we were running into was that the kids in the Special Ed class were making fun of Drew and hitting him. Problem was no one was telling me. I would hear about it from Drew and then have to find out what was going on. I started pointing out that Drew had no issue with the Gen Ed kids and the SPED kids had marked him as a target.
The special ed teacher watched some videos from TSA and went to the principal and told her Drew was in the wrong placement. Didn't help. The Gen Ed teacher went to the principal and told her Drew was in the wrong placement. Didn't help. It also didn't help that since the admin didn't understand TS or that anxiety OCD and ADD are co-morbid. They had labeled Drew a behavior problem. I was also labeled a problem parent.
We had finally had enough - after 5 IEP meetings in 3 months and more time in the principal's office than any mom should spend we decided to get an advocate. She got the ball rolling and the next thing I knew we had a meeting with the principal, the advocate and the superintendent of special ed! I was so focused on that meeting, it consumed me night and day. I was armed with TS information, IEP information. I was a walking talking TS IEP encyclopedia. Oh yea, did I mention the letter from the Pediatric Neurologist who treats Drew's TS?
All of a sudden the admin starts changing their tune. Scott and I arrived for the meeting. We start talking about TS and how it affects Drew. I very quietly hand the letter to the advocate who reads it and hands it to the superintendent he reads it. The superintendent then says he thinks now that everyone has had time to get to know Drew we all agree he is in teh wrong place. WHAT???? that was out of left field. He also tells us he as a background in Autism and understands the similarities. WHAT????? After hearing everything he concurs that Drew is in the wrong class. WHAT??????????????????????? We were being heard for the first time in months.
The next thing we know it is being discussed about how to handle Drew's math issues - only thing that is not on grade level. Also discussing how to handle the social emotional piece since we refuse to let the psychologist for the SPED class get near Drew (another post for another day). Then we start talking about next year and what school Drew will be going to. Colorado has school choice. Meaning we can petion for what school Drew attends. He could continue at his present school through 6th grade but there was no guarantee that he would be allowed to go to the JR. High with his friends at his current school. Changes are he would have to transfer back to his home jr. high. Our other option is to up root him one more time and put him back at his home school for 5th and 6th grade so he can transition with those students to Jr. high and have friends before that transition. I think the principal was relived when Scott and i started leaning towards moving him back to his home school. We have now made the decision to move him to his home school in the fall. The superintendent is setting up a meeting for the new principal, me and the superintendent to start the ball rolling. The superintendent is also ensuring that the staff will be educated in TS before Drew starts and that staff from the new school will be making visits to the current school to get to know Drew over the next couple months.
The best part? Drew spent today in the General Ed class for the whole day and loved every minute of it.
All it took was a whole lot of FAITH TRUST AND lots of people who love that little guy and know what is best for him. a dash of pixie dust didn't hurt either.
Since moving to Colorado it has been one fight after another with the school. The administration refused to get educated on Tourettte Syndrome. Since the admin would not educate, the staff could not get educated nor could the students. Every day it was a fight. Drew was in a self contained classroom in California - not because of a behavior issue but because it was a good structured environment He thrived. His teacher in California was the most amazing woman who saw the potential in Drew.
Since Drew's IEP from CA was for a self contained class room the district decided he needed to be placed with kids who had bipolar, ODD and other behavior issues. Not the best place for a kid who needed a quiet structured classroom. I couldn't even get him mainstreamed per his IEP.
In January I really started pushing for what he needed. In small bits and pieces they started allowing him mainstream time. The problem we were running into was that the kids in the Special Ed class were making fun of Drew and hitting him. Problem was no one was telling me. I would hear about it from Drew and then have to find out what was going on. I started pointing out that Drew had no issue with the Gen Ed kids and the SPED kids had marked him as a target.
The special ed teacher watched some videos from TSA and went to the principal and told her Drew was in the wrong placement. Didn't help. The Gen Ed teacher went to the principal and told her Drew was in the wrong placement. Didn't help. It also didn't help that since the admin didn't understand TS or that anxiety OCD and ADD are co-morbid. They had labeled Drew a behavior problem. I was also labeled a problem parent.
We had finally had enough - after 5 IEP meetings in 3 months and more time in the principal's office than any mom should spend we decided to get an advocate. She got the ball rolling and the next thing I knew we had a meeting with the principal, the advocate and the superintendent of special ed! I was so focused on that meeting, it consumed me night and day. I was armed with TS information, IEP information. I was a walking talking TS IEP encyclopedia. Oh yea, did I mention the letter from the Pediatric Neurologist who treats Drew's TS?
All of a sudden the admin starts changing their tune. Scott and I arrived for the meeting. We start talking about TS and how it affects Drew. I very quietly hand the letter to the advocate who reads it and hands it to the superintendent he reads it. The superintendent then says he thinks now that everyone has had time to get to know Drew we all agree he is in teh wrong place. WHAT???? that was out of left field. He also tells us he as a background in Autism and understands the similarities. WHAT????? After hearing everything he concurs that Drew is in the wrong class. WHAT??????????????????????? We were being heard for the first time in months.
The next thing we know it is being discussed about how to handle Drew's math issues - only thing that is not on grade level. Also discussing how to handle the social emotional piece since we refuse to let the psychologist for the SPED class get near Drew (another post for another day). Then we start talking about next year and what school Drew will be going to. Colorado has school choice. Meaning we can petion for what school Drew attends. He could continue at his present school through 6th grade but there was no guarantee that he would be allowed to go to the JR. High with his friends at his current school. Changes are he would have to transfer back to his home jr. high. Our other option is to up root him one more time and put him back at his home school for 5th and 6th grade so he can transition with those students to Jr. high and have friends before that transition. I think the principal was relived when Scott and i started leaning towards moving him back to his home school. We have now made the decision to move him to his home school in the fall. The superintendent is setting up a meeting for the new principal, me and the superintendent to start the ball rolling. The superintendent is also ensuring that the staff will be educated in TS before Drew starts and that staff from the new school will be making visits to the current school to get to know Drew over the next couple months.
The best part? Drew spent today in the General Ed class for the whole day and loved every minute of it.
All it took was a whole lot of FAITH TRUST AND lots of people who love that little guy and know what is best for him. a dash of pixie dust didn't hurt either.
Saturday, March 16, 2013
changes to diet
I am research fanatic. I am addicted to learning. It is like a drug for me. I had been seeing articles about Tourette's and diet. We had made an effort to become gluten free several years ago and we did a good job. At some point we fell off the wagon and went back to our old ways. I am not sure how Drew's tics were during the time we were GF.
My research has revealed that there may be a connection between many diseases and gluten. I am also finding many reports of milk and tics. Milk seems to increase them. I know soy milk can cause an increase in them as well. So we are going to try Almond Milk and see if we see a difference. In the next couple weeks we will also revert to our life style of being GF. Bob's Red Mill and Pamelas GF are good brands for GF. So I will be going back to them. We also love Eating Well Magazine for great recipes which can be altered for GF life style.
Drew has an aversion to many foods so it can be a challenge to cook for him. He is not a veggie eater. it is a texture thing. He is going back to OT thru Children's in the next few weeks. As the TS has gotten worse he has lost some fine and gross motor skills. The schools will only give OT from an educational standpoint so all they are offering is typing skills. He needs more. So the school is teaching him to type and Children's will be tackling motor skills and sensory issues which have also become worse as the TS has gotten worse.
My research has revealed that there may be a connection between many diseases and gluten. I am also finding many reports of milk and tics. Milk seems to increase them. I know soy milk can cause an increase in them as well. So we are going to try Almond Milk and see if we see a difference. In the next couple weeks we will also revert to our life style of being GF. Bob's Red Mill and Pamelas GF are good brands for GF. So I will be going back to them. We also love Eating Well Magazine for great recipes which can be altered for GF life style.
Drew has an aversion to many foods so it can be a challenge to cook for him. He is not a veggie eater. it is a texture thing. He is going back to OT thru Children's in the next few weeks. As the TS has gotten worse he has lost some fine and gross motor skills. The schools will only give OT from an educational standpoint so all they are offering is typing skills. He needs more. So the school is teaching him to type and Children's will be tackling motor skills and sensory issues which have also become worse as the TS has gotten worse.
Wednesday, March 06, 2013
I will fight for you every day of my life.
We have had a lot of problems with Drew's school and district in the past few days. Hell I take that back, since we moved to Colorado it has been a giant nightmare. I had another fight with them yesterday about bullying and placement for Drew (a topic for a later time) Tonight made it all worth while.
Drew: Mom you look exhausted.
Me: I am.
Drew: The school?
Me: yea. but will keep fighting for you and for what is right everyday of my life. Because that is what I do.
Drew: I know, that is why I love you
Drew: Mom you look exhausted.
Me: I am.
Drew: The school?
Me: yea. but will keep fighting for you and for what is right everyday of my life. Because that is what I do.
Drew: I know, that is why I love you
Monday, March 04, 2013
New Treatment for Drew
Drew has a very severe neck twitch. It causes pain. He has given himself whiplash several times and pulled muscles in his neck. When we saw the neurologist at Children's in January, she gave us a new option beyond medication. Today, Drew underwent botox injections in his neck.
Drew was a bit apprehensive. We did find out the hard way that he is allergic to the adhesive used to hold the numbing patches in place. That was the worst part for Drew. But the cream did what it was supposed to. The injections were administered without pain - all but the last one.
We were advised that the injections would not take effect today, tomorrow, or even the next day. But hopefully by the end of the week we will see some improvement. In two weeks we will see maximum effect. If it works then Drew should have relief for up to three months.
We know there can be side effects and we explained them to Drew. He decided it was worth it to at least try this.
This is just one treatment. We know not all treatments work for all patients. All we can do at this point is wait and watch and hope there is some relief for Drew.
Drew was a bit apprehensive. We did find out the hard way that he is allergic to the adhesive used to hold the numbing patches in place. That was the worst part for Drew. But the cream did what it was supposed to. The injections were administered without pain - all but the last one.
We were advised that the injections would not take effect today, tomorrow, or even the next day. But hopefully by the end of the week we will see some improvement. In two weeks we will see maximum effect. If it works then Drew should have relief for up to three months.
We know there can be side effects and we explained them to Drew. He decided it was worth it to at least try this.
This is just one treatment. We know not all treatments work for all patients. All we can do at this point is wait and watch and hope there is some relief for Drew.
Sunday, March 03, 2013
New Direction
Over the past year I have found my blog has lacked direction. I have written about many things family, friends, new job, moving. I have had very little motivation to write. Granted it has been a hectic few months. I think I have found my direction.
If you have read many of my posts you know my youngest son suffers from Tourette Syndrome. My husband and I adopted Drew at birth. He had a rough start and we knew from the beginning there would be challenges. My dad often commented that though he did not know why the Cosmos lined up and some force brought Drew to me for a reason.
I have often wondered why Drew came to us. I thought several years ago it was to be a fighter for what Drew needed. I was right to a point. I am Drew's mom, fighter, advocate number one to give him love. I am his safe place. The one place he knows no matter what he can be who he is and let his feelings known.
I have searched for websites and blogs chronicling other mom's struggles with Tourette Syndrome, an syndrome that gets little recognition and funding for a cure or research. It is a very misunderstood neuro biological condition that is often portrayed incorrectly on TV. When someone says Tourette's Syndrome, the first image is of someone who cusses and can't control it. That is a small part of Tourette. It is called Coprolalia and only about 10% of those who suffer with Tourette have this condition.
Drew has a severe case of Tourette Syndrome. He tics all the time. Even in his sleep. We are fortunate to have moved to Colorado where the Children's hospital is making progress in managing the symptoms of this disorder.
Facts about Tourette Syndrome
It affects more boys than girls
1 in 1000 have this condition
There is no cure.
It is a spectrum disorder.
OCD, Anxeity, and ADHD are co-morbid conditions. (Drew has all 3)
No two cases of Tourette are the same.
I have decided to use my blog to educate about Tourette as well as a place to vent and share our struggles, and day to day triumphs of Tourette. My hope is that I can inspire or help just one mom. I also hope to build a network for other parents to find a place to learn and help each other.
I recommend if you want more information to check out Tourette Syndrome Association.
I welcome you to our new journey.
If you have read many of my posts you know my youngest son suffers from Tourette Syndrome. My husband and I adopted Drew at birth. He had a rough start and we knew from the beginning there would be challenges. My dad often commented that though he did not know why the Cosmos lined up and some force brought Drew to me for a reason.
I have often wondered why Drew came to us. I thought several years ago it was to be a fighter for what Drew needed. I was right to a point. I am Drew's mom, fighter, advocate number one to give him love. I am his safe place. The one place he knows no matter what he can be who he is and let his feelings known.
I have searched for websites and blogs chronicling other mom's struggles with Tourette Syndrome, an syndrome that gets little recognition and funding for a cure or research. It is a very misunderstood neuro biological condition that is often portrayed incorrectly on TV. When someone says Tourette's Syndrome, the first image is of someone who cusses and can't control it. That is a small part of Tourette. It is called Coprolalia and only about 10% of those who suffer with Tourette have this condition.
Drew has a severe case of Tourette Syndrome. He tics all the time. Even in his sleep. We are fortunate to have moved to Colorado where the Children's hospital is making progress in managing the symptoms of this disorder.
Facts about Tourette Syndrome
It affects more boys than girls
1 in 1000 have this condition
There is no cure.
It is a spectrum disorder.
OCD, Anxeity, and ADHD are co-morbid conditions. (Drew has all 3)
No two cases of Tourette are the same.
I have decided to use my blog to educate about Tourette as well as a place to vent and share our struggles, and day to day triumphs of Tourette. My hope is that I can inspire or help just one mom. I also hope to build a network for other parents to find a place to learn and help each other.
I recommend if you want more information to check out Tourette Syndrome Association.
I welcome you to our new journey.
Sunday, February 17, 2013
Busy and adjusting
I have to say in many ways we are busier in Denver than we ever were in California. We still have our family time but it is different.
Last weekend we stayed close to home because of snow but the last few days have made me go WOAH!. Monday Drew now has Lego Club and rock climbing. Wed we headed to Children's to meet with the Rehab Doc who will be administering the Botox treatment in a couple weeks. a story for another post. Thursday I got to help with Drew's class Valentines party in his Gen Ed and after that I am more convinced than ever the school district is wrong and that the placement is so incorrect it is not funny. We now have an advocate but that is a story for another day. Friday Scott stayed in the City for the evening and got to spend time with people from his old company. He had a wonderful time. Drew and I hung out at home and watched TV. Yesterday we had a late brunch, did some shopping and then went to our friends house for a wonderful dinner. Today I am taking Drew swimming with a friend of mine who I have not seen since JR. HIGH.
We are still adjusting to life here and a new normal when it comes to routine. Sometimes we have to stop our selves and say "we have been here less than 3 months and things are still shaking out" Is some ways it feels like we have been here for a long time and this has always been home. Maybe it is because of the Midwest feel and life style? I know I feel more at home here. More relaxed, more in control. Still adjusting but this feels like where I belong.
Last weekend we stayed close to home because of snow but the last few days have made me go WOAH!. Monday Drew now has Lego Club and rock climbing. Wed we headed to Children's to meet with the Rehab Doc who will be administering the Botox treatment in a couple weeks. a story for another post. Thursday I got to help with Drew's class Valentines party in his Gen Ed and after that I am more convinced than ever the school district is wrong and that the placement is so incorrect it is not funny. We now have an advocate but that is a story for another day. Friday Scott stayed in the City for the evening and got to spend time with people from his old company. He had a wonderful time. Drew and I hung out at home and watched TV. Yesterday we had a late brunch, did some shopping and then went to our friends house for a wonderful dinner. Today I am taking Drew swimming with a friend of mine who I have not seen since JR. HIGH.
We are still adjusting to life here and a new normal when it comes to routine. Sometimes we have to stop our selves and say "we have been here less than 3 months and things are still shaking out" Is some ways it feels like we have been here for a long time and this has always been home. Maybe it is because of the Midwest feel and life style? I know I feel more at home here. More relaxed, more in control. Still adjusting but this feels like where I belong.
Sunday, February 03, 2013
Breakfast
One of the most important things when you move to a new city is to find a new place for weekend breakfast. We have found a place. It is called Breakfast on Broadway. The have a great menu. We found it by accident last weekend. Scott and I had dropped Drew off at a Scout event last week and decided to take some couple time and were driving down the road and saw this place. The parking lot was pretty full so we figured it must be good. We were right.
Drew has been having trouble eating lately. With the weight loss, we are willing to let him eat things he normally doesn't get to eat. This morning we went to Breakfast on Broadway and Drew had the S'more Pancakes. Panckes with chocolate chips, chocolate syrup, marshmallow syrup and graham crackers. He did eat more than he has in several days. We talk to the doc tomorrow about where we go from here.
He is now having some insomnia as well. Please keep him in your thoughts and prayers as we figure this out.
Wednesday, January 30, 2013
medical stuffs
Everyone who reads my blog knows about Drew and his Tourettes. It has been a source of frustration for him. We had a great doctor in San Francisco who Drew loved. Moving to Colorado meant a new doctor and building new trust. Not something easy for Drew.
Drew and I met with Dr. C on Monday. First thing we learned she trained under Drew's doc in San Francisco!!! As much as I liked the doc in SF I like Dr. C for other reasons. She is younger and has embraced new techniques that might help Drew. Week after next Drew will be getting a small amount of botox injected into the back of his neck. The hope and theory is that it will relax the muscles and decrease the neck tics. Drew was not too happy about the thought of shots but when asked which would be worse Tourettes or injections every 3 months that could stop the tics. He decided the injections would not be so bad. We are also adding Magnesium to his diet as this been showing signs of helping decrease tics as well.
Dr. C also suspects from what Drew is describing that he may be having seizures again. So next week we will be doing a sleep deprived EEG. If that doesn't show anything than he will be admitted for several days to the epilepsy unit for observation.
He is also being evaluated for his sleep. It has been proven that kids with Tourettes don't sleep well because their bodies don't shut down and they tic in their sleep.. This leads to an increase in behavior issues as well as decreased learning. Drew wakes up exhausted every morning no matter what time he goes to bed.
We are currently waiting for blood work to come back. Drew has lost 10% of his body weight in the last 17 days. That has me and everyone else pretty worried.
It appears that Drew also has ADD but we knew that. he can't be put on meds for it because they will aggravate the tourettes. He now carries a water bottle at all times because dehydration can increase tics.
Next week Drew will be giving a presentation to his class about having Tourette's. They will watch this video and then do a Q&A about the condition. I will be with him but this is his to talk about.
right now all I can do is have
Faith Trust and Pixie Dust.
Cathy
Drew and I met with Dr. C on Monday. First thing we learned she trained under Drew's doc in San Francisco!!! As much as I liked the doc in SF I like Dr. C for other reasons. She is younger and has embraced new techniques that might help Drew. Week after next Drew will be getting a small amount of botox injected into the back of his neck. The hope and theory is that it will relax the muscles and decrease the neck tics. Drew was not too happy about the thought of shots but when asked which would be worse Tourettes or injections every 3 months that could stop the tics. He decided the injections would not be so bad. We are also adding Magnesium to his diet as this been showing signs of helping decrease tics as well.
Dr. C also suspects from what Drew is describing that he may be having seizures again. So next week we will be doing a sleep deprived EEG. If that doesn't show anything than he will be admitted for several days to the epilepsy unit for observation.
He is also being evaluated for his sleep. It has been proven that kids with Tourettes don't sleep well because their bodies don't shut down and they tic in their sleep.. This leads to an increase in behavior issues as well as decreased learning. Drew wakes up exhausted every morning no matter what time he goes to bed.
We are currently waiting for blood work to come back. Drew has lost 10% of his body weight in the last 17 days. That has me and everyone else pretty worried.
It appears that Drew also has ADD but we knew that. he can't be put on meds for it because they will aggravate the tourettes. He now carries a water bottle at all times because dehydration can increase tics.
right now all I can do is have
Faith Trust and Pixie Dust.
Cathy
Tuesday, January 22, 2013
Yes I am back.
Wondered where I have been? We moved from California to Colorado. It has been an adjustment for all of us but we have been here 2 months and things are getting better. I think.
In other news I graduate in 3 weeks. Trying to decide about getting my Master's. I am going to be an Aunt.
So I am back and ready to start blogging again.
In other news I graduate in 3 weeks. Trying to decide about getting my Master's. I am going to be an Aunt.
So I am back and ready to start blogging again.
Friday, September 21, 2012
Spur of the moment
It was a spur of the moment decision. A chance to make a memory and I jumped on it. We had been hearing for days about the space shuttle Endeavor heading to LA to become part of museum. But first it was going to grace the northern California sky.
It was to fly over the capitol at 930 this morning. I was literally getting Drew out the door to head to school when the enormity of the event overtook me. I sent Scott a message that we were headed down town. Called Drew's teacher and told her he would be late. So we loaded up.
We got downtown about 815 and heard on the radio that the shuttle had just left Edwards AFB and was headed toward us. I managed to find some 1 hour parking and hoped I would not have a ticket when we got back.
There were people scattered around the back of the capitol and Drew and I took up spots. I chatted and Drew ran off to check out the turtles and fish in a nearby pond with other kids.
Here is Drew waiting.
about 915 people started coming out of office buildings and waiting. One lady was talking to her husband who was on a near by roof top.
930 We heard the shuttle was flying over Stockton
937 it was over Highway 99 in Elk Grove
HERE IT COMES!!!! I was so focused on making sure Drew saw it I forgot to take pictures. OOPS. We saw it momentarily before it disappeared behind the other side of the Capitol. WHAT A GYP! Would it come back? The crowd starting disperrsing. We waited. And were rewarded. The pilot flew back over our side. It was huge - but I was shocked at how small it was. Once again I forgot to snap a picture. I was in awe of this incredible machine that had orbited the Earth 4671 times, went on 25 missions, traveled almost 123,000,000 miles, spent 296 days, 3 hours, 34 minutes, 2 seconds in space, and docked with the International Space Station 12 times and MIR once.
This is what we saw the first time it passed by Pictures courtesy of KCRA.
We were here somewhere.
This is what we saw the second time.
It was memorable and to share it with Drew was wonderful.
It was memorable and to share it with Drew was wonderful.
Tuesday, September 11, 2012
THAT DAY
This is what i post every year on this day. May God bless and keep all those involved.
9 years ago I was driving my son to school after a dentist appointment. We were listening to the radio when the announcer announced someone with really bad direction had flown a small aircraft into the World Trade Center. WOW that is crazy I thought. We kept driving. A few minutes later the announcer came back on and said - it happened again - another plane had hit the other tower and it was a commerical aircraft carrier. WOW that is even crazier. Phil asked me what it meant. I had no idea but I assured him (with the confidence that every mother has in moments like this) that everything would be all right and he was safe.
9 years ago I was driving my son to school after a dentist appointment. We were listening to the radio when the announcer announced someone with really bad direction had flown a small aircraft into the World Trade Center. WOW that is crazy I thought. We kept driving. A few minutes later the announcer came back on and said - it happened again - another plane had hit the other tower and it was a commerical aircraft carrier. WOW that is even crazier. Phil asked me what it meant. I had no idea but I assured him (with the confidence that every mother has in moments like this) that everything would be all right and he was safe.
I got him to school and walked in and told the secretary something crazy was going on and she needed to find a radio. I explained what we had heard on the radio. At that moment all of her phone lines started ringing with concerned parents. I hugged Phil good bye and said I would see him after school. I remember calling Scott on my way home and telling him he needed to find a way to get some news. This was 9 years ago before constant, instantious internet news coverage.
I went home and turned on the TV. My sister called (or maybe I called her) we sat watching the TV trying to figure out what was going on. We were 60 miles away from each other and it was one time in our life that I truly felt close to her. Our parents were on the way to DC on vacation. They were driving. My cell rang and it was mom. Amie called Dad on her cell. One most of my vivid memories is my sister yelling "OH MY GOD it is going down" as the first building fell. We watched in horror connected by that phone at what was happening before eyes. We begged them to come home. Finally they realized this was major. They were driving and only had our accounts and the radio to go by. They did turn around and head for KC.
The other day I was talking to Phil about what he remembered. He recounted what happened as the school day continued. I remember fighting the urge to go get him and bring him home (that safe haven every parent feels about their house for theirchild). As Phil and I talked the other day it hit me. For his generation, this is the first "I remember where I was when...." they will have. He was the about the same age I was when I had my first one of those moments,John Lennon being shot. Somehow, now that memory doesn't compare to his first of those memories.
I remember that day, 9 years ago wondering about the world my child was growing up in. 9 months later we adopted Andrew. He doesn't remember a world where you don't have to take your shoes off at the airport, or packing all your liquids in your checked bags. This is the first year I have exposed him to what happened that day. I wanted him to maintain his belief that the world is inherently good as long as possible.
I pray for Phil, his generation has VERY few of the "I remember where I was..." moments. I hope for all of us there is never another day that causes such fear. But like my friend Allan said... If you give into the fear, you let them win.
Monday, August 27, 2012
Where have I been?
Where have I been? Let's see....School started so trying to get Drew back on track has taken time. Scott is starting to recover and looking forward to his new bike being here in a couple weeks - that makes one of us.
Mainly I have been.... OPENING MY TRAVEL AGENCY!!!! I got my final approval last week and have since been working hard to get all of my certifications lined up and registering for all the companies that i want to do business with. Each one has different criteria so that has taken some time. But we are up and running. I have my Disney, Universal, Sandals/Beaches, Princess Cruise Line and Norwegian Cruise Line tests done. But that doesn't mean I am limited to selling just those packages.
I have the ablity to book car rentals, hotels, air, you name it I can book it. so for a weekend get away or a colorado vacation or a 117 day trip around the world on Princess I can get it done for you.
I am doing a travel blog right now check it out Destinations By Cathy
I am posting travel goodies as well as deals. If you see something that catches your eye leave me a message of click the envelope in the upper right hand corner and I can get back to you in 24 hours or less.
Wanted to share my business cards - what do you think?
The back says but it won't let me put it on here for some reason:
Why do you need ME as YOUR travel professional?
...Expert Insight on Family Destinations
...Save YOU time and Money
...Personalize YOUR vacation
...Be there when YOU need ME
So that is where I have been.
Mainly I have been.... OPENING MY TRAVEL AGENCY!!!! I got my final approval last week and have since been working hard to get all of my certifications lined up and registering for all the companies that i want to do business with. Each one has different criteria so that has taken some time. But we are up and running. I have my Disney, Universal, Sandals/Beaches, Princess Cruise Line and Norwegian Cruise Line tests done. But that doesn't mean I am limited to selling just those packages.
I have the ablity to book car rentals, hotels, air, you name it I can book it. so for a weekend get away or a colorado vacation or a 117 day trip around the world on Princess I can get it done for you.
I am doing a travel blog right now check it out Destinations By Cathy
I am posting travel goodies as well as deals. If you see something that catches your eye leave me a message of click the envelope in the upper right hand corner and I can get back to you in 24 hours or less.
Wanted to share my business cards - what do you think?
Why do you need ME as YOUR travel professional?
...Expert Insight on Family Destinations
...Save YOU time and Money
...Personalize YOUR vacation
...Be there when YOU need ME
So that is where I have been.
Thursday, August 09, 2012
so you want to be a travel agent....
I decided I wanted to have my own home based business as a travel agent. I have wanted it for a long time. I actually wanted it 25 years ago but wasn't at a point I could be a travel agent then. So I decided it was time. I knew there were rules and laws and fees to pay. What I didn't realize is what a racket the state of California makes it to do this. Actually this is for any business but travel consultants have EXTRA hoops to jump through.
I started researching. Here is what i found.
First fee I found was at the California Insurance commission. Yes you read that correctly. INSURANCE COMMISSION. Because I offer travel insurance I have to pay a fee to register there. PLUS I have to be fingerprinted for the California Department of Justice as well as the FBI. So there is another fee. BUT since I don't have to take an insurance test of any kind i have to go to a LIVE SCAN place like UPS to have my prints done. Another fee.
Then I keep researching and find I have to have a Seller of Travel license from the Attorney General. OK this one I understand. 10 page application plus a fee. As I am filling it out I discover the HIDDEN FEES.
There is a large one time fee to pay into the Travel Consumer Restitution Corp. This is a Corporation that refunds travelers who fall for the if it seems to be good to be true vacation schemes. Haven't figured it out exactly but it sounds like they had a great lobbying group behind them. I can't turn in my Seller of Travel request with out that number.
Then as I go further in the SoT I find I have to have a trust account in my business name. So I call the bank. They tell me I need proof that I am a registered DBA before they can open any business account. Back to Google. In California it is not called DBA it is called Fictitious Business name. Great how do I do that? You guessed it yet another fee. So Drew and I head down to the Department of Finance to pay the fee. Guess what not only do you have to pay a fee for that THEN you have to run an ad in a newspaper for 4 weeks to show the DBA and make sure no one else has it registered - you guessed it another fee to run the ad.
While I am there, the lady tells me I need to file for a business license even for a home based business. According to what I have read a business license is to cover things like street maintenance and wear and tear on sidewalks from customers - as a home based business I won't have that. But guess what I have to have the license anyway. I have a couple weeks to get that one turned it. It can wait.
Back to the trust account. Off to the bank I go. I explain the situation to them that even tho I don't accept checks and there is no cash in my business (except my commissions - which go into yet another account) the state of California requires me to have an account just in case someone writes me a check even tho I don't take checks and am basically a middle man. Someone gives me a CC # to give to a travel company and I never see that money. BUT I have to have an account that has the word TRUST in it that I can never ever touch. That account number and bank have to be on the SoT application as well. Are you following that one? Thank Goodness for the patience of my Wells Fargo Banker who helped me figure out how to do this for the least amount of money.
Oh yea and then there is the fee to belong to the OSSN which is similar to IATA and CLIA so I can get a travel number so I can do business. (that fee I understand)
Per the state I can't do business until everything is approved and set to go. So on all my forms I put September 1 as my start date. It can't get here soon enough so I can start making some of the fees back.
It will be worth it in the end but WOW California you could make it a tad easier!
I started researching. Here is what i found.
First fee I found was at the California Insurance commission. Yes you read that correctly. INSURANCE COMMISSION. Because I offer travel insurance I have to pay a fee to register there. PLUS I have to be fingerprinted for the California Department of Justice as well as the FBI. So there is another fee. BUT since I don't have to take an insurance test of any kind i have to go to a LIVE SCAN place like UPS to have my prints done. Another fee.
Then I keep researching and find I have to have a Seller of Travel license from the Attorney General. OK this one I understand. 10 page application plus a fee. As I am filling it out I discover the HIDDEN FEES.
There is a large one time fee to pay into the Travel Consumer Restitution Corp. This is a Corporation that refunds travelers who fall for the if it seems to be good to be true vacation schemes. Haven't figured it out exactly but it sounds like they had a great lobbying group behind them. I can't turn in my Seller of Travel request with out that number.
Then as I go further in the SoT I find I have to have a trust account in my business name. So I call the bank. They tell me I need proof that I am a registered DBA before they can open any business account. Back to Google. In California it is not called DBA it is called Fictitious Business name. Great how do I do that? You guessed it yet another fee. So Drew and I head down to the Department of Finance to pay the fee. Guess what not only do you have to pay a fee for that THEN you have to run an ad in a newspaper for 4 weeks to show the DBA and make sure no one else has it registered - you guessed it another fee to run the ad.
While I am there, the lady tells me I need to file for a business license even for a home based business. According to what I have read a business license is to cover things like street maintenance and wear and tear on sidewalks from customers - as a home based business I won't have that. But guess what I have to have the license anyway. I have a couple weeks to get that one turned it. It can wait.
Back to the trust account. Off to the bank I go. I explain the situation to them that even tho I don't accept checks and there is no cash in my business (except my commissions - which go into yet another account) the state of California requires me to have an account just in case someone writes me a check even tho I don't take checks and am basically a middle man. Someone gives me a CC # to give to a travel company and I never see that money. BUT I have to have an account that has the word TRUST in it that I can never ever touch. That account number and bank have to be on the SoT application as well. Are you following that one? Thank Goodness for the patience of my Wells Fargo Banker who helped me figure out how to do this for the least amount of money.
Oh yea and then there is the fee to belong to the OSSN which is similar to IATA and CLIA so I can get a travel number so I can do business. (that fee I understand)
Per the state I can't do business until everything is approved and set to go. So on all my forms I put September 1 as my start date. It can't get here soon enough so I can start making some of the fees back.
It will be worth it in the end but WOW California you could make it a tad easier!
Tuesday, August 07, 2012
Destinations by Cathy
Yes you read that correctly. I have opened my own travel agency. I realized that I could do what I was doing for the other agency but on my own terms. I contacted Disney and talked to some one from inside sales. She told me that I had been given incorrect information and that I could indeed become my own agent for Disney - and other places. After all how did the other agencies get their start?
So I contacted the State of California and they walked me through what to do to be legal in the state. I had to have a travel agent number so the inside person at Disney told me who to go to for home based because I don't make enough yet to qualify for IATA or CLIA (the big two in the travel world.) I am a member of OSSN and have a TRUE number. So I guess I am open for business. Still have to go get fingerprints tomrrow.
So I am now in business for myself. I own my own travel agency!!!!!!
Destinations by Cathy is open for business.
So I contacted the State of California and they walked me through what to do to be legal in the state. I had to have a travel agent number so the inside person at Disney told me who to go to for home based because I don't make enough yet to qualify for IATA or CLIA (the big two in the travel world.) I am a member of OSSN and have a TRUE number. So I guess I am open for business. Still have to go get fingerprints tomrrow.
So I am now in business for myself. I own my own travel agency!!!!!!
Destinations by Cathy is open for business.
Monday, July 30, 2012
Protector/for my boys
When Phil was little, before Scott, it was just us. From the time he was two until Scott and I started dating,when he was seven, all we had was each other. We had several songs we would sing to each other at different times.
Last night, Drew was having a rough time. He was scared. He has a fear that he can't over come. He is scared of gollum from Lord of the Rings. I can't say it is irrational because we all have things we are scared of. This is his. It is a paralyzing fear. When Phil was scared as a kid I sang him a song - this was before the days of YouTube and Ipods. he had to endure my voice. (Sorry Phil). I hope both my boys know that Nothings gonna harm them when I am around.
Last night when Drew was so scared to go down stairs the song came back to me. I played it on my phone and sang to Drew at the same time. He was finally able to go down and do what he had to do.
After he came back upstairs he said "thanks for making me brave mom" That is what a mom is to do isn't it?
This song will be true for my boys for ever and I hope someday they sing it to their children. I like this version better because the first time I saw it Barbara Streisand was singing it to her son.
Love Mom
Last night, Drew was having a rough time. He was scared. He has a fear that he can't over come. He is scared of gollum from Lord of the Rings. I can't say it is irrational because we all have things we are scared of. This is his. It is a paralyzing fear. When Phil was scared as a kid I sang him a song - this was before the days of YouTube and Ipods. he had to endure my voice. (Sorry Phil). I hope both my boys know that Nothings gonna harm them when I am around.
Last night when Drew was so scared to go down stairs the song came back to me. I played it on my phone and sang to Drew at the same time. He was finally able to go down and do what he had to do.
After he came back upstairs he said "thanks for making me brave mom" That is what a mom is to do isn't it?
This song will be true for my boys for ever and I hope someday they sing it to their children. I like this version better because the first time I saw it Barbara Streisand was singing it to her son.
Love Mom
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