Here we are, post-antibiotic diagnostic test, and guess what? We have a new Catherine. A beautiful Catherine. A FUNNY Catherine! Oh, how funny you can be. And SOCIAL. You love having conversations!
We saw a new pediatrician, who referred us to the same doctor our old pediatrician finally referred us to. I didn't give two shits that someone in that doctor's office at Blank Children's Hospital was going to see that two different doctors referred us. Just get us a fucking appointment!
We saw Dr. Malani on Thursday, May 22nd. She was pretty awesome, but skeptical. I had faxed over Catherine's running google doc to her and she actually READ it. I couldn't believe it. Instead of saying things like, "This might just be the way she is" she said things like, "why don't we do this?" She referred us to Dr. Elliot at Blank Children's Hospital. She also referred us to Dr. Young, who is an ENT here in the metro. Both doctors are known for taking on difficult cases and diagnosing them, or helping parents find the best results. Dr. Elliot is the one doctor in the metro who works closely with the immunologists at University of Iowa (oh, yay...) to diagnose PANS and PANDAS. The thing that KILLS me is that, guaranteed, he will see the "good" Catherine and she will be dismissed like so many times before. So I will have to go in there, and have someone simply believe what I am saying without them blaming me for Munchausen by Proxy. Wish me luck.
Now, back to your new appointment. We had your blood tested, but we haven't heard back about results. I should really call, but a lot of things have happened in the past week and quite frankly, when I think about it, it's after-hours or I have too many kids in my house (hellooooo neighborhood!). It's nearly impossible to get things done during the day when I have all three kids, plus the neighborhood kids, running around in our backyard, or running in and out of the house (which I have put a lid on, but it still happens). Just today, I had a half hour to myself, so I quick did some things for Eric's business and then all of a sudden, James and his friends were back, needing lunch, getting James' swimsuit. Then I was buying Adventureland season passes and all of a sudden, time gets away from me. Ugh. But I digress. A lot.
Beyond the two doctors above, we also got a referral to the University of Iowa with a geneticist. Probably to test for autism. WHICH SHE DOESN'T HAVE. In all of my google research, one thing I I have not looked up is if autism is a DNA thing. I will be anxious to know if something comes of that.
Otherwise, I am looking toward the light at the end of the tunnel. Hopefully, this leads to something. But in all of that, I am relishing the moments of happiness that Catherine has given us. She has been giving us new words every day, starting to string together complex sentences, and has many conversations with us (OH how she loves to talk). I love every minute of it. But in all of that, I am waiting for the other shoe to drop. Is the anger over a book at bedtime the start of the next days' temper tantrums that are uncontrollable? I can't help but be on the edge of my seat all the time.
But until the next shitty day with Catherine, I will soak up the good ones. Because when they're good, they're GOOD.
Tuesday, June 6, 2017
Tuesday, May 23, 2017
Just Another Manic Monday...
Although it's Tuesday, this is definitely an appropriate title, as things finally came to a head with Catherine last Monday.
After a hellish week with Catherine, I sat down on Sunday night defeated, sad and extremely tired. Did I mention that in all of this, I am also taking a full-time graduate school summer semester? Yeah, that started last Monday. So talk about making my life a little more hectic, but I definitely needed something for ME. So I am glad that I am doing this. But enough about me...
On Sunday night, I noticed that I had not checked my messages for a week or so. So I checked the messages. One was from our ENT. He said he had the test results back from Catherine's ear culture (you know, the nasty, goopy snot that comes out of her ear when she has an ear infection). I knew this already because, thanks to technology, I get an email update every time that a test result comes in. It came back as Group A Strep. I didn't think much about it, because honestly, I didn't figure anyone was going to help me. However, in his message, he stated that it was "unusual" and I should consult with my pediatrician about it. So I made an appointment Monday morning.
Monday afternoon, I took time off work, AGAIN, to take Catherine to our pediatrician, AGAIN. By this time, her ear was leaking clear fluid and she had a runny nose. I knew an ear infection was coming because that's our M.O. with ear infections. Not to mention, she had a pretty terrible day at daycare.
So I definitely was anxious to get there. I thought we were just going in for an ear infection, but the past few weeks ended up taking a toll on me. I cried through almost the entire appointment. I cried harder when the doctor told me that she thought we may have exhausted all of our resources, and nearly punched her in the face when she told me that maybe this is just the way it is. She mentioned something called PANDAS, which went in one ear and out the other, and just felt defeated. However, she wanted to try an antibiotic diagnostic test on Catherine to see if her behaviors improved. So Monday, I headed to a special compounding pharmacy since almost ALL pharmacies add dyes to their antibiotics. We had our first round, the greatest dose that she would get all week, on Monday night.
On Tuesday, Catherine woke up with - yep, you guessed it - an ear infection. Are you fucking kidding me? Didn't I even say to the doctor when she looked into Catherine's ears that her ears looked fine and yes, one was draining, but it wasn't red or swollen or anything. Less than 12 hours later - ear infection. And it was nasty. Yellow, goopy snot. Literally, snot. Just like all the other times she has had snot come out of her ear.
So I took a picture of it. I was prepared to glove up and start fighting. This was disgusting, Catherine can't possibly be able to hear with this stuff in her ear, and clearly, the antibiotic was not working, even after the gigantic dose we gave her Monday night.
Tuesday night, we gave Catherine another dose and on Wednesday, she was an absolute DELIGHT. It was like night and day. Her aggression was gone, her tics (particularly the hm-ing that she does), she laughed, she was able to play with James. We were thrilled to have Good Catherine back for at least awhile. But I am always waiting for the other shoe to drop.
Wednesday night brought storms through the area, and our neighbors tree fell into our house. A little damage in a lot of places, so we are fortunate that way, but we were able to remember to give Catherine her latest dose of medicine.
Thursday was another awesome day. By the way, did I mention that we were keeping a very VERY strict diary of her behaviors. Daycare included. It was so nice to report nothing new, terrible, or heartbreaking on Thursday. Friday was a little tougher, but I thought Catherine was maybe tired from the week. Low and behold, her OTHER ear (yes, the one with the tube still in) started leaking clear fluid. Even after a huge dose of antibiotics all week. Friday night brought havoc with clearing tree debris, and we forgot to give Catherine her final dose of antibiotic. I can tell you it wouldn't have made a difference. Friday night, her started leaking, Saturday morning (her birthday), she woke up to a full fledged ear infection in her OTHER ear. Not to mention, Saturday gave us Bad Catherine, which broke my heart because it was her birthday. I tried as hard as I could to diffuse every situation where Catherine would lose her shit, but at the end of the day, I was just as defeated, tired and sad as I had been the Sunday before.
The next day, I was spent. I was short-tempered, angry that we cannot figure out what is going on with Catherine, and waiting for the second that I could email our pediatrician the results. Sunday night, I did just that, but yesterday, I received an email that we should maybe think about seeing the developmental specialists at University of Iowa again and have I gotten her hearing tested by the ENT again?
ARE YOU FUCKING SERIOUS?
I wanted to explode. The whole day, I was in tears. WHY WAS NO ONE LISTENING TO ME?
This was a girl who had very obviously improved while on antibiotics, but clearly, the antibiotics were not strong enough to help her all the way through. This was a roller coaster ride that I wanted to get the fuck off of!!!!!
I sat on that email and wrote and re-wrote what I wanted to say over and over again. In all of it, between the lines, I wrote I AM BREAKING. I can feel it. It was like the 50-year old ash tree that fell on our house. I could feel myself splitting into two parts. The defeated part, which I let take hold for about 12 hours, and the pissed off part. Again, WHY WAS NO ONE LISTENING TO ME?
Today, I sat down and wrote this:
I have written this email about nine million times, so bear with me. In the end, if you would like us to seek out a new pediatrician, then I guess that's that.
No the ENT hasn't checked her hearing because every time we go back, her ears are full of nastiness. When he can see anything, he does say there is fluid behind her ear drums. This is also the same guy who prescribed her amoxicillin when it clearly says on her chart that she is allergic to it. But at least he said strep in her ear was "unusual."
I may be taking your comment wrong, but I don't believe Catherine's behavior is developmental. And forgive me, but I don't know what a developmental person would do for us. The last one suggested therapies for us, and suggested we have her tonsils removed. The ENT disagreed with that as well. To give you an idea, Catherine scored an 89 on her academic portion of the AEA evaluation. 90 is considered in the range of "normal." So yes, Catherine is delayed, but she is only on the lower side of her same-age peers. The reason she is started a special preschool is because 1) AEA suggested since she was at an 89, it would help at least catch her up and 2) since she is SO social, a special preschool will help. So we pushed for it, AEA reevaluated her, and again, she scored an 80. So into special preschool we go.
I have spent much of this past year in tears, angry, frustrated and relieved when SOMETHING seems to be going well. Like taking her off Zyrtec and taking dyes out of her diet. But then we go right back to where we were. I am humble enough to know I am no doctor, but smart enough to know my own daughter. I don't have my blinders on, and I don't have the wool pulled over my eyes. So here are my thoughts:
We are dealing with two different periods of time; 0-18 months and 18-months on, as 18 months is when her behaviors and the ear infections started. I think it all has to do with her ear infections, although several people have told me that's not possible. I was right about James' egg allergy, I was right about Catherine's milk allergy, I feel like I am right about this.
If she is too young for PANDAS or whatever, maybe she is the youngest to ever be diagnosed with it. If she is too young for early-onset ADHD or OCD, maybe she will be the youngest person to ever have these things (even though I really don't think that's it). But why aren't we testing for it? I am tired of doing this on my own. She has a yeast infection that will not go away, dilated pupils, aggression, tics, obsession, screams for hours in the middle of the night (no, they aren't night terrors), and has left enough marks on Drew to cause scarring. We have been doing this for a year and a half. She has been a difficult child, like you said on Monday, but I don't think that this is just the way she is. I can't accept that. You don't see what I see, and you don't deal with the things that we have dealt with nearly every day. We are on a roller coaster and I would like to get off of it. We would appreciate your help in that, if possible.
Please read this document. Look at the pictures. Help us in a way that we need to be helped. https://docs.google.com/document/d/10HJKCD59-t7LBtujLRPFAxW9kaM7erXvGOC0L6msHDk/edit?usp=sharing
Thank you - Laura
If you are reading this, I really encourage you to read my monthly entries from 18 months on. As I reviewed it today, it's incredibly heart-breaking. As I reviewed it yesterday, I was shaking my head. I have said from the beginning that this was something to do with her ears. Then I stopped because I had an ENT berate me while breastfeeding my newborn as I consulted with him about Catherine's balance, and her lack of speech and her glossy eyes and runny nose. It was like he was telling me I was crazy. And who was I? Just a post-partum mom, 50 pounds overweight and at that moment, absolutely hating everyone in the medical profession. I consulted with a second ENT four months later, who also told me I was crazy, it was NOT her ears, they looked fine and she could hear just fine. Rejected. Again. I went back to my pediatrician. No help. Even after the tubes, I had the ENT tell me that tubes don't always help with ear infections. Ummm, have you seen the shit that comes out of her ears? Did you know that you don't even have to have an appointment to get ear drops from the ENT? You just call and say that her ear is draining. I can't tell you how many times, before taking Zyrtec and dyes out that I called and said her is was draining, even when it wasn't, because it seemed like she was just so much better because she was on antibiotics. If you read the document, you will see that I wrote that somewhere in the many pages of documentation.
So I posted on my moms facebook group on Monday and asked for recommendations for a new pediatrician. Because clearly, I wasn't getting answers with the shitty team I have now.
In all of that, between my two grad classes that I am taking (at three credits each... oy...), between wrapping up the end of the school year, and between taking care of two other children (but not my house... you should see my house...), I wrote that email. Then I looked up PANDAS. Like I said to my pediatrician, I am not necessarily looking to find what "IT" is that is causing Catherine to behave this way, I just want people to start ruling things OUT.
Looking at PANDAS, I was pretty skeptical. Only diagnosed in children usually aged 3-12. The biggest symptoms are:
1) Agression (Catherine)
2) OCD tendencies (Catherine)
3) Emotional lability (Catherine)
4) Periods of "good" and "bad" (Catherine)
5) Tics (Catherine's hm-ing)
But yet, this is where Catherine can fit a lot of categories. Like I said in the email, if she has early-onset OCD (like, REALLY early), let's get it figured out. What's really interesting about PANDAS is that it is an acronym for (are you ready?):
Pediatric Acute-onset Neuropsychiatric Disorder ASSOCIATED WITH STREP.
Weird, Catherine just so happened to have Group A Strep draining out of her ear. FOR A YEAR AND A HALF.
Since then, like my typical nature, in between all the other shit I have to do in life, I have googled the SHIT out of PANDAS. Apparently, it is new, rare (just our luck), and hard to diagnose. It's also hard to take care of. Once the onset happens, if it is not taken care of quickly, the symptoms can become permanent. Awesome.
And even greater kicker was that somewhere, I read that any medicines that cross the central nervous system can exacerbate symptoms. LIKE ZYRTEC. So now I was actually paying attention.
So here we are, going back to the ears. Like I wanted to in the first place.
After my scathing email to my pediatrician (because no one can talk to their pediatrician on the phone anymore), she emailed me back apologizing. In her first email, and in our initial appointment last week, she said that we could look into PANDAS but she was "pretty young." I am guessing that maybe Catherine is the youngest patient on the face of the planet that may have it? Who knows.
Either way, I am writing this blog post before I email her back. We are still keeping the appointment with the new pediatrician. I am still angry about it. I am still mad at everyone who have said things to me like, "if she had a milk allergy, she would have a rash" or "it's not her ears. Her ears aren't the problem" or "take her out of daycare." I don't know what will happen next. Oddly enough, someone that I work with, that I eat lunch with every day, just had her son diagnosed with PANDAS. But hers was a different story. He was getting into a ton of trouble at school, so she was referred to a psychologist, and from there, the psychologist referred her to an immunologist, and from there, he diagnosed it. She had never even heard of it. What would be the odds that I would know someone whose son was diagnosed? What would be the odds that we might finally be on the brink of what is going on with Catherine?
Until then, we will see what happens on Thursday with our new pediatrician. We will see what happens this week with our old pediatrician. We have Catherine on yet another dose of nasty anti-biotics, so we will see what that brings. Guaranteed, it's a new little girl with a better lease on life. But only for a little while.
Onward...
After a hellish week with Catherine, I sat down on Sunday night defeated, sad and extremely tired. Did I mention that in all of this, I am also taking a full-time graduate school summer semester? Yeah, that started last Monday. So talk about making my life a little more hectic, but I definitely needed something for ME. So I am glad that I am doing this. But enough about me...
On Sunday night, I noticed that I had not checked my messages for a week or so. So I checked the messages. One was from our ENT. He said he had the test results back from Catherine's ear culture (you know, the nasty, goopy snot that comes out of her ear when she has an ear infection). I knew this already because, thanks to technology, I get an email update every time that a test result comes in. It came back as Group A Strep. I didn't think much about it, because honestly, I didn't figure anyone was going to help me. However, in his message, he stated that it was "unusual" and I should consult with my pediatrician about it. So I made an appointment Monday morning.
Monday afternoon, I took time off work, AGAIN, to take Catherine to our pediatrician, AGAIN. By this time, her ear was leaking clear fluid and she had a runny nose. I knew an ear infection was coming because that's our M.O. with ear infections. Not to mention, she had a pretty terrible day at daycare.
So I definitely was anxious to get there. I thought we were just going in for an ear infection, but the past few weeks ended up taking a toll on me. I cried through almost the entire appointment. I cried harder when the doctor told me that she thought we may have exhausted all of our resources, and nearly punched her in the face when she told me that maybe this is just the way it is. She mentioned something called PANDAS, which went in one ear and out the other, and just felt defeated. However, she wanted to try an antibiotic diagnostic test on Catherine to see if her behaviors improved. So Monday, I headed to a special compounding pharmacy since almost ALL pharmacies add dyes to their antibiotics. We had our first round, the greatest dose that she would get all week, on Monday night.
On Tuesday, Catherine woke up with - yep, you guessed it - an ear infection. Are you fucking kidding me? Didn't I even say to the doctor when she looked into Catherine's ears that her ears looked fine and yes, one was draining, but it wasn't red or swollen or anything. Less than 12 hours later - ear infection. And it was nasty. Yellow, goopy snot. Literally, snot. Just like all the other times she has had snot come out of her ear.
So I took a picture of it. I was prepared to glove up and start fighting. This was disgusting, Catherine can't possibly be able to hear with this stuff in her ear, and clearly, the antibiotic was not working, even after the gigantic dose we gave her Monday night.
 |
| This is usually the start to all of Catherine's ear infections. Begins with clear fluid, turns into yellow snot, and then usually bright green and just pours out of her ear. This was taken after just dipping the swab into the lower part of the ear where the snot gathers before it runs down the side of her face. |
Tuesday night, we gave Catherine another dose and on Wednesday, she was an absolute DELIGHT. It was like night and day. Her aggression was gone, her tics (particularly the hm-ing that she does), she laughed, she was able to play with James. We were thrilled to have Good Catherine back for at least awhile. But I am always waiting for the other shoe to drop.
Wednesday night brought storms through the area, and our neighbors tree fell into our house. A little damage in a lot of places, so we are fortunate that way, but we were able to remember to give Catherine her latest dose of medicine.
Thursday was another awesome day. By the way, did I mention that we were keeping a very VERY strict diary of her behaviors. Daycare included. It was so nice to report nothing new, terrible, or heartbreaking on Thursday. Friday was a little tougher, but I thought Catherine was maybe tired from the week. Low and behold, her OTHER ear (yes, the one with the tube still in) started leaking clear fluid. Even after a huge dose of antibiotics all week. Friday night brought havoc with clearing tree debris, and we forgot to give Catherine her final dose of antibiotic. I can tell you it wouldn't have made a difference. Friday night, her started leaking, Saturday morning (her birthday), she woke up to a full fledged ear infection in her OTHER ear. Not to mention, Saturday gave us Bad Catherine, which broke my heart because it was her birthday. I tried as hard as I could to diffuse every situation where Catherine would lose her shit, but at the end of the day, I was just as defeated, tired and sad as I had been the Sunday before.
The next day, I was spent. I was short-tempered, angry that we cannot figure out what is going on with Catherine, and waiting for the second that I could email our pediatrician the results. Sunday night, I did just that, but yesterday, I received an email that we should maybe think about seeing the developmental specialists at University of Iowa again and have I gotten her hearing tested by the ENT again?
ARE YOU FUCKING SERIOUS?
I wanted to explode. The whole day, I was in tears. WHY WAS NO ONE LISTENING TO ME?
This was a girl who had very obviously improved while on antibiotics, but clearly, the antibiotics were not strong enough to help her all the way through. This was a roller coaster ride that I wanted to get the fuck off of!!!!!
I sat on that email and wrote and re-wrote what I wanted to say over and over again. In all of it, between the lines, I wrote I AM BREAKING. I can feel it. It was like the 50-year old ash tree that fell on our house. I could feel myself splitting into two parts. The defeated part, which I let take hold for about 12 hours, and the pissed off part. Again, WHY WAS NO ONE LISTENING TO ME?
Today, I sat down and wrote this:
I have written this email about nine million times, so bear with me. In the end, if you would like us to seek out a new pediatrician, then I guess that's that.
No the ENT hasn't checked her hearing because every time we go back, her ears are full of nastiness. When he can see anything, he does say there is fluid behind her ear drums. This is also the same guy who prescribed her amoxicillin when it clearly says on her chart that she is allergic to it. But at least he said strep in her ear was "unusual."
I may be taking your comment wrong, but I don't believe Catherine's behavior is developmental. And forgive me, but I don't know what a developmental person would do for us. The last one suggested therapies for us, and suggested we have her tonsils removed. The ENT disagreed with that as well. To give you an idea, Catherine scored an 89 on her academic portion of the AEA evaluation. 90 is considered in the range of "normal." So yes, Catherine is delayed, but she is only on the lower side of her same-age peers. The reason she is started a special preschool is because 1) AEA suggested since she was at an 89, it would help at least catch her up and 2) since she is SO social, a special preschool will help. So we pushed for it, AEA reevaluated her, and again, she scored an 80. So into special preschool we go.
I have spent much of this past year in tears, angry, frustrated and relieved when SOMETHING seems to be going well. Like taking her off Zyrtec and taking dyes out of her diet. But then we go right back to where we were. I am humble enough to know I am no doctor, but smart enough to know my own daughter. I don't have my blinders on, and I don't have the wool pulled over my eyes. So here are my thoughts:
We are dealing with two different periods of time; 0-18 months and 18-months on, as 18 months is when her behaviors and the ear infections started. I think it all has to do with her ear infections, although several people have told me that's not possible. I was right about James' egg allergy, I was right about Catherine's milk allergy, I feel like I am right about this.
If she is too young for PANDAS or whatever, maybe she is the youngest to ever be diagnosed with it. If she is too young for early-onset ADHD or OCD, maybe she will be the youngest person to ever have these things (even though I really don't think that's it). But why aren't we testing for it? I am tired of doing this on my own. She has a yeast infection that will not go away, dilated pupils, aggression, tics, obsession, screams for hours in the middle of the night (no, they aren't night terrors), and has left enough marks on Drew to cause scarring. We have been doing this for a year and a half. She has been a difficult child, like you said on Monday, but I don't think that this is just the way she is. I can't accept that. You don't see what I see, and you don't deal with the things that we have dealt with nearly every day. We are on a roller coaster and I would like to get off of it. We would appreciate your help in that, if possible.
Please read this document. Look at the pictures. Help us in a way that we need to be helped. https://docs.google.com/document/d/10HJKCD59-t7LBtujLRPFAxW9kaM7erXvGOC0L6msHDk/edit?usp=sharing
Thank you - Laura
If you are reading this, I really encourage you to read my monthly entries from 18 months on. As I reviewed it today, it's incredibly heart-breaking. As I reviewed it yesterday, I was shaking my head. I have said from the beginning that this was something to do with her ears. Then I stopped because I had an ENT berate me while breastfeeding my newborn as I consulted with him about Catherine's balance, and her lack of speech and her glossy eyes and runny nose. It was like he was telling me I was crazy. And who was I? Just a post-partum mom, 50 pounds overweight and at that moment, absolutely hating everyone in the medical profession. I consulted with a second ENT four months later, who also told me I was crazy, it was NOT her ears, they looked fine and she could hear just fine. Rejected. Again. I went back to my pediatrician. No help. Even after the tubes, I had the ENT tell me that tubes don't always help with ear infections. Ummm, have you seen the shit that comes out of her ears? Did you know that you don't even have to have an appointment to get ear drops from the ENT? You just call and say that her ear is draining. I can't tell you how many times, before taking Zyrtec and dyes out that I called and said her is was draining, even when it wasn't, because it seemed like she was just so much better because she was on antibiotics. If you read the document, you will see that I wrote that somewhere in the many pages of documentation.
So I posted on my moms facebook group on Monday and asked for recommendations for a new pediatrician. Because clearly, I wasn't getting answers with the shitty team I have now.
In all of that, between my two grad classes that I am taking (at three credits each... oy...), between wrapping up the end of the school year, and between taking care of two other children (but not my house... you should see my house...), I wrote that email. Then I looked up PANDAS. Like I said to my pediatrician, I am not necessarily looking to find what "IT" is that is causing Catherine to behave this way, I just want people to start ruling things OUT.
Looking at PANDAS, I was pretty skeptical. Only diagnosed in children usually aged 3-12. The biggest symptoms are:
1) Agression (Catherine)
2) OCD tendencies (Catherine)
3) Emotional lability (Catherine)
4) Periods of "good" and "bad" (Catherine)
5) Tics (Catherine's hm-ing)
But yet, this is where Catherine can fit a lot of categories. Like I said in the email, if she has early-onset OCD (like, REALLY early), let's get it figured out. What's really interesting about PANDAS is that it is an acronym for (are you ready?):
Pediatric Acute-onset Neuropsychiatric Disorder ASSOCIATED WITH STREP.
Weird, Catherine just so happened to have Group A Strep draining out of her ear. FOR A YEAR AND A HALF.
Since then, like my typical nature, in between all the other shit I have to do in life, I have googled the SHIT out of PANDAS. Apparently, it is new, rare (just our luck), and hard to diagnose. It's also hard to take care of. Once the onset happens, if it is not taken care of quickly, the symptoms can become permanent. Awesome.
And even greater kicker was that somewhere, I read that any medicines that cross the central nervous system can exacerbate symptoms. LIKE ZYRTEC. So now I was actually paying attention.
So here we are, going back to the ears. Like I wanted to in the first place.
After my scathing email to my pediatrician (because no one can talk to their pediatrician on the phone anymore), she emailed me back apologizing. In her first email, and in our initial appointment last week, she said that we could look into PANDAS but she was "pretty young." I am guessing that maybe Catherine is the youngest patient on the face of the planet that may have it? Who knows.
Either way, I am writing this blog post before I email her back. We are still keeping the appointment with the new pediatrician. I am still angry about it. I am still mad at everyone who have said things to me like, "if she had a milk allergy, she would have a rash" or "it's not her ears. Her ears aren't the problem" or "take her out of daycare." I don't know what will happen next. Oddly enough, someone that I work with, that I eat lunch with every day, just had her son diagnosed with PANDAS. But hers was a different story. He was getting into a ton of trouble at school, so she was referred to a psychologist, and from there, the psychologist referred her to an immunologist, and from there, he diagnosed it. She had never even heard of it. What would be the odds that I would know someone whose son was diagnosed? What would be the odds that we might finally be on the brink of what is going on with Catherine?
Until then, we will see what happens on Thursday with our new pediatrician. We will see what happens this week with our old pediatrician. We have Catherine on yet another dose of nasty anti-biotics, so we will see what that brings. Guaranteed, it's a new little girl with a better lease on life. But only for a little while.
Onward...
 |
| This is Catherine on a "bad' day. She insisted her blanket be on her chair while eating. This is right after breakfast, after a full night of sleep (miraculously) and this was about the only peaceful moment we had that day. This is one of Catherine's tell-tale signs that it's going to be a bad day. She looks stoned. Not like a pothead, but like a crack-cocaine addict. This is the look of a little girl who is not healthy. This is the look of a little girl who needs help. Why can no one see that??? |
Tuesday, May 9, 2017
Dedication to Drew
With all of Catherine's issues, we have really put anything for Drew on the backburner, including ANY kind of update, probably since he was seven or eight months old. That's almost a year ago. But Drew-boo, know that we love you very much.
You are the happiest when you wake up in the mornings. You are a complete ray of sunshine, and one of my favorite things to do when you wake up is sneak into your room and surprise you. The look on your face is absolutely elation. Your whole face lights up when you are excited about something, and seeing mom or dad first thing in the morning is definitely the highlight of our day.
You started walking about 13 months, right about the same time as James. You walk just like he did too; high knees and pounding the street with your feet. It's hilarious to watch. You are starting to navigate the doorways, like the sliding glass door and the front door, with ease. However, that makes me nervous because it makes you think you can take the stairs standing up too.
You try to jump, which is hilarious, but you can't quite get it. You love to stick your arms out behind you, lean forward, and "run." That is also hilarious. When you are done eating, you throw your food overboard, which drives me nuts. However, with the nice weather, I am sure the possum in the yard does not mind the leftovers at night.
You are always game for anything. You will play in the backyard by yourself for hours. You want to desperately go down the slide, but we just can't let you do that yet as the trajectory will launch you into the middle of the backyard. You will hate it.
You love to climb things. You love food. You are finally sleeping through the night, but you still wake up once between 9-10 p.m. because you are thirsty. You usually fall right back asleep and stay that way until morning, unless Catherine is in one of her rages. If it wakes you up, it usually scares you, but when she's done, right back to sleep you go.
You have been the sunshine on some really dark days in this household. Sometimes, I think that's the reason why God gave me you. He saw that we needed some comedic relief, some more love, and especially another big, blue-eyed baby boy. I am so thankful you are here, you are mine, and you are loved beyond measure.
You are the happiest when you wake up in the mornings. You are a complete ray of sunshine, and one of my favorite things to do when you wake up is sneak into your room and surprise you. The look on your face is absolutely elation. Your whole face lights up when you are excited about something, and seeing mom or dad first thing in the morning is definitely the highlight of our day.
You started walking about 13 months, right about the same time as James. You walk just like he did too; high knees and pounding the street with your feet. It's hilarious to watch. You are starting to navigate the doorways, like the sliding glass door and the front door, with ease. However, that makes me nervous because it makes you think you can take the stairs standing up too.
You try to jump, which is hilarious, but you can't quite get it. You love to stick your arms out behind you, lean forward, and "run." That is also hilarious. When you are done eating, you throw your food overboard, which drives me nuts. However, with the nice weather, I am sure the possum in the yard does not mind the leftovers at night.
You are always game for anything. You will play in the backyard by yourself for hours. You want to desperately go down the slide, but we just can't let you do that yet as the trajectory will launch you into the middle of the backyard. You will hate it.
You love to climb things. You love food. You are finally sleeping through the night, but you still wake up once between 9-10 p.m. because you are thirsty. You usually fall right back asleep and stay that way until morning, unless Catherine is in one of her rages. If it wakes you up, it usually scares you, but when she's done, right back to sleep you go.
You have been the sunshine on some really dark days in this household. Sometimes, I think that's the reason why God gave me you. He saw that we needed some comedic relief, some more love, and especially another big, blue-eyed baby boy. I am so thankful you are here, you are mine, and you are loved beyond measure.
Just Another Chapter
Last night, I said to myself, "If I wrote a book, it would be titled 'Prisoner in My Own Life.'" And here we are, at yet another chapter.
Since Saturday, we have been fighting yet another battle with Catherine. Up all night, screaming. Aggressive with not only her family, but also with those that have come over to play with her. It's like when we have Good Catherine, she is amazing. When we have Bad Catherine, I cringe.
It has been a war zone, AGAIN. Constantly trying to keep her happy while balancing everything else. If you could have seen my kitchen on Saturday, you would have been appalled. I was appalled. And overwhelmed. Like everything else that day, it was a mess, and was the epitome of exactly how I was feeling. Out of place, disorganized, and chaotic. And the only way to survive is to take it one minute at a time.
If I wanted to, I could write all about the past four days. But it would be exactly like the last blog post I wrote. About strapping on my combat boots and going to war. How James is acting out because Catherine is misbehaving. How there have been more times than I can count where we have "lost" Drew somewhere in the house or the backyard because we are dealing with Catherine's behavior issues.
So instead, I will write about her Special Education meeting today, and the path forward we hope to take. Only because I feel like if I rehash the past four days, and particularly the past 24 hours, I will end up going mad.
So we met with Catherine's Speech Language Pathologist (SLP), the school's SLP, her Early Access Coordinator (who we love and we are so sad to see go). We also met with the school nurse, Catherine's potential special education teacher, who happens to be James' current preschool teacher. How lucky are we that we will have one of the kindest, most dedicated teachers I have ever met not only teach James, but also have Catherine for a couple of years. We are truly lucky in that regard. We are also so lucky for Catherine to have been working with Heather (EAC) and Dani (current SLP), as we feel they have been fighting for Catherine too.
It was surreal to be a general education teacher sitting in on an IEP (individualized education plan) as the parent this time. This time I wasn't just nodding my head and following along, but I was engaged in the conversation about my own daughter. Again, we are so thankful that we have THIS team of professionals in Catherine's corner.
Catherine will have curb-to-curb transportation, meaning she will ride a short bus. I almost have to laugh at this little girl in this big bus, but she will absolutely love every second of it. There will be an aid on the bus to help load her from Christy's (daycare) and the aid will walk her into preschool. She will go to preschool 4 days a week from 8:30-11:30 and she will get specialized services throughout the morning. Mostly one-on-one with the special education teacher for her cognitive delay and one-on-one with the school's SLP. She will then get back on a bus with the aid and be dropped back off at Christy's. I may have a lot of issues with the way our government is run, and the way public schools sometimes function, but in this regard, Southeast Polk has their stuff together. For that, I am so thankful.
I took the full day off work, just so that I could spend the day concentrating on Catherine. Since my last update two months ago, we have been diligently making sure she doesn't get any artificial flavors either, and have been trying to stay away from salicylates, which are acids derived from plants. I have put in a call to the doctor to refer us to a pediatric nutritionist who specializes in food intolerances, who can hopefully help us make sure Catherine is getting the nutrition she needs, as well as identify any other intolerances she might have that allergy testing would miss. This is what I suspect happened with the milk protein allergy, and why she tested positive at one doctor and not at the allergist. Because it's more of an intolerance.
I have learned that food allergies and intolerances manifest themselves in several different ways. For some kids, it's behavioral, and for some, it's a rash. Either way, the further we get from allowing Catherine to have dyes and artificial flavors/preservatives, the more convinced I am that this is what is happening.
If anyone out there is reading this, and you are the praying type, here is what we need prayers for:
1) For a nutritionist to guide us into further investigation of what Catherine truly reacts to.
2) For us, to make sure we continue to be patient and love her with everything we have
3) For James, who is also hurting from this as a big brother.
4) For her special education "family" who will continue to work with Catherine and make suggestions for her. Help them guide her to be the best Catherine she can be.
5) For Catherine. You can tell she does not like feeling this way. She is easily frustrated with herself and as Christy's daughter put it before, it seems like she is angry with herself all the time. With the removal of dyes and flavors from her diet, she has been much happier, and more loving. I hope this continues.
Onward...again.
Since Saturday, we have been fighting yet another battle with Catherine. Up all night, screaming. Aggressive with not only her family, but also with those that have come over to play with her. It's like when we have Good Catherine, she is amazing. When we have Bad Catherine, I cringe.
It has been a war zone, AGAIN. Constantly trying to keep her happy while balancing everything else. If you could have seen my kitchen on Saturday, you would have been appalled. I was appalled. And overwhelmed. Like everything else that day, it was a mess, and was the epitome of exactly how I was feeling. Out of place, disorganized, and chaotic. And the only way to survive is to take it one minute at a time.
If I wanted to, I could write all about the past four days. But it would be exactly like the last blog post I wrote. About strapping on my combat boots and going to war. How James is acting out because Catherine is misbehaving. How there have been more times than I can count where we have "lost" Drew somewhere in the house or the backyard because we are dealing with Catherine's behavior issues.
So instead, I will write about her Special Education meeting today, and the path forward we hope to take. Only because I feel like if I rehash the past four days, and particularly the past 24 hours, I will end up going mad.
So we met with Catherine's Speech Language Pathologist (SLP), the school's SLP, her Early Access Coordinator (who we love and we are so sad to see go). We also met with the school nurse, Catherine's potential special education teacher, who happens to be James' current preschool teacher. How lucky are we that we will have one of the kindest, most dedicated teachers I have ever met not only teach James, but also have Catherine for a couple of years. We are truly lucky in that regard. We are also so lucky for Catherine to have been working with Heather (EAC) and Dani (current SLP), as we feel they have been fighting for Catherine too.
It was surreal to be a general education teacher sitting in on an IEP (individualized education plan) as the parent this time. This time I wasn't just nodding my head and following along, but I was engaged in the conversation about my own daughter. Again, we are so thankful that we have THIS team of professionals in Catherine's corner.
Catherine will have curb-to-curb transportation, meaning she will ride a short bus. I almost have to laugh at this little girl in this big bus, but she will absolutely love every second of it. There will be an aid on the bus to help load her from Christy's (daycare) and the aid will walk her into preschool. She will go to preschool 4 days a week from 8:30-11:30 and she will get specialized services throughout the morning. Mostly one-on-one with the special education teacher for her cognitive delay and one-on-one with the school's SLP. She will then get back on a bus with the aid and be dropped back off at Christy's. I may have a lot of issues with the way our government is run, and the way public schools sometimes function, but in this regard, Southeast Polk has their stuff together. For that, I am so thankful.
I took the full day off work, just so that I could spend the day concentrating on Catherine. Since my last update two months ago, we have been diligently making sure she doesn't get any artificial flavors either, and have been trying to stay away from salicylates, which are acids derived from plants. I have put in a call to the doctor to refer us to a pediatric nutritionist who specializes in food intolerances, who can hopefully help us make sure Catherine is getting the nutrition she needs, as well as identify any other intolerances she might have that allergy testing would miss. This is what I suspect happened with the milk protein allergy, and why she tested positive at one doctor and not at the allergist. Because it's more of an intolerance.
I have learned that food allergies and intolerances manifest themselves in several different ways. For some kids, it's behavioral, and for some, it's a rash. Either way, the further we get from allowing Catherine to have dyes and artificial flavors/preservatives, the more convinced I am that this is what is happening.
If anyone out there is reading this, and you are the praying type, here is what we need prayers for:
1) For a nutritionist to guide us into further investigation of what Catherine truly reacts to.
2) For us, to make sure we continue to be patient and love her with everything we have
3) For James, who is also hurting from this as a big brother.
4) For her special education "family" who will continue to work with Catherine and make suggestions for her. Help them guide her to be the best Catherine she can be.
5) For Catherine. You can tell she does not like feeling this way. She is easily frustrated with herself and as Christy's daughter put it before, it seems like she is angry with herself all the time. With the removal of dyes and flavors from her diet, she has been much happier, and more loving. I hope this continues.
Onward...again.
Monday, March 27, 2017
If It Keeps On Rainin'...
...the levee's going to break.
That's exactly how I feel.
The town I grew up in had a dam. I had a friend who used to live right next to it, and we would hang out in his backyard. I would always look and see the water rushing over the edge. I would think about that cement wall holding back all that water so in the grand scheme, just a little bit could pour over the edge.
I feel like my dam has a crack in it and the water is going to break out soon.
The past 5 days have been more than just a struggle. It has been a war zone. After the first breech in security, I pulled on my combat boots and went to work. Up every couple of hours comforting a screaming Catherine. Sometimes it was an all out temper tantrum that would pull me out of sleep and before I could vault out of bed, someone else was crying because it was scaring them. Sometimes she would only call for me, but if I didn't come quick enough, it escalated to the point where I could hardly calm her down. And our room is adjacent to hers - it takes me about 10 seconds to get there. But in that time, she would go from 0-meltdown and I would have to calm her down by loving on her. At one point, I brought her into bed with us and massaged her legs and arms, which seem to do the trick almost every time. Then I told her she needed to go back to bed. She did. It always seems like it's over as quickly as it started. But then, it begins as quickly as it ends. It's never ending. Kind of like the water over the dam. It just keeps coming.
James is suffering for it as well. He has been mean to her, most likely because his playmate is gone and in her place stands a raging, uncommunicative little girl who kicks and screams and hits and cries uncontrollably. There is no knowing what will set her off, how long it will go, or really what will calm her down. Usually, it's just good luck. I will distract her with something, ANYTHING, to get her to put her focus somewhere other than her brothers, or me, or the floor, or the wall. And then it's time to get back into bed.
And I am running on empty. Fumes. I am hoping for a miracle so I can refuel, only to strap on my combat boots again. Catherine left a hand print on Drew's face the other night. A bright red, ugly hand print. For no reason. One second they were playing, the next, she hauled off and hit him.
I discovered on Sunday that her new toothpaste had blue 1 in it (a dye), but could that LITTLE possibly do so much damage? And then here I am, back at square ZERO, which James tells me is LESS than one. And one would mean I have something. Right now, I have nothing.
I believe the Zyrtec was our main culprit. So we solved that issue. We were blissfully happy for a few months. Then it was the food dyes. We took those out. We were blissfully happy for a few months. Every time we figure something out, something else takes it's place.
I am now onto researching digestive health; particularly something called "leaky gut." I will spare the details, but essentially, large food particles and toxins are absorbed into the bloodstream from the intestine, putting your body on full attack. Now it knows how I feel. It was Eric's cousin who emailed me the information, as her son was diagnosed with Asperger's. She was able to reverse ALL symptoms with diet modification, and she said you would never know he would have a diagnosis like that. He is still missing social cues as he missed developing them when he was suffering, but now that he is healthy, he is able to function normally.
That's exactly what I want for Catherine. In her phone evaluation on Wednesday night, her SLP said that she was concerned that Catherine was cognitively delayed. I was floored. This had never been mentioned before. She was very careful to say that she wasn't sure if it was because Catherine was also delayed in her communication, or if it was a separate entity, but she would like to test for it. If the test comes back that Catherine is cognitively delayed, she will qualify for special education services through 3-year old preschool.
Every parent wants their child to be successful, and even if Catherine is in special education, she will still be successful because of who she is. It's not the end of the world if Catherine is special education. There are so many different levels, and I am a teacher. I have seen several students test out of the special education program. But as a parent, I can't help but wonder; is there anything I can do to help her? Did I do something wrong that led us to this point? What if I would have noticed sooner that she constipated at 4 weeks of age? What if I would have pushed harder, BEFORE she turned two, to get her in to see specialists. You can't help but wonder.
So here we are. Blow by blow by blow. Night after sleepless night. And in all of this, I just keep strapping on my combat boots because I don't know what else to do.
That's exactly how I feel.
The town I grew up in had a dam. I had a friend who used to live right next to it, and we would hang out in his backyard. I would always look and see the water rushing over the edge. I would think about that cement wall holding back all that water so in the grand scheme, just a little bit could pour over the edge.
I feel like my dam has a crack in it and the water is going to break out soon.
The past 5 days have been more than just a struggle. It has been a war zone. After the first breech in security, I pulled on my combat boots and went to work. Up every couple of hours comforting a screaming Catherine. Sometimes it was an all out temper tantrum that would pull me out of sleep and before I could vault out of bed, someone else was crying because it was scaring them. Sometimes she would only call for me, but if I didn't come quick enough, it escalated to the point where I could hardly calm her down. And our room is adjacent to hers - it takes me about 10 seconds to get there. But in that time, she would go from 0-meltdown and I would have to calm her down by loving on her. At one point, I brought her into bed with us and massaged her legs and arms, which seem to do the trick almost every time. Then I told her she needed to go back to bed. She did. It always seems like it's over as quickly as it started. But then, it begins as quickly as it ends. It's never ending. Kind of like the water over the dam. It just keeps coming.
James is suffering for it as well. He has been mean to her, most likely because his playmate is gone and in her place stands a raging, uncommunicative little girl who kicks and screams and hits and cries uncontrollably. There is no knowing what will set her off, how long it will go, or really what will calm her down. Usually, it's just good luck. I will distract her with something, ANYTHING, to get her to put her focus somewhere other than her brothers, or me, or the floor, or the wall. And then it's time to get back into bed.
And I am running on empty. Fumes. I am hoping for a miracle so I can refuel, only to strap on my combat boots again. Catherine left a hand print on Drew's face the other night. A bright red, ugly hand print. For no reason. One second they were playing, the next, she hauled off and hit him.
I discovered on Sunday that her new toothpaste had blue 1 in it (a dye), but could that LITTLE possibly do so much damage? And then here I am, back at square ZERO, which James tells me is LESS than one. And one would mean I have something. Right now, I have nothing.
I believe the Zyrtec was our main culprit. So we solved that issue. We were blissfully happy for a few months. Then it was the food dyes. We took those out. We were blissfully happy for a few months. Every time we figure something out, something else takes it's place.
I am now onto researching digestive health; particularly something called "leaky gut." I will spare the details, but essentially, large food particles and toxins are absorbed into the bloodstream from the intestine, putting your body on full attack. Now it knows how I feel. It was Eric's cousin who emailed me the information, as her son was diagnosed with Asperger's. She was able to reverse ALL symptoms with diet modification, and she said you would never know he would have a diagnosis like that. He is still missing social cues as he missed developing them when he was suffering, but now that he is healthy, he is able to function normally.
That's exactly what I want for Catherine. In her phone evaluation on Wednesday night, her SLP said that she was concerned that Catherine was cognitively delayed. I was floored. This had never been mentioned before. She was very careful to say that she wasn't sure if it was because Catherine was also delayed in her communication, or if it was a separate entity, but she would like to test for it. If the test comes back that Catherine is cognitively delayed, she will qualify for special education services through 3-year old preschool.
Every parent wants their child to be successful, and even if Catherine is in special education, she will still be successful because of who she is. It's not the end of the world if Catherine is special education. There are so many different levels, and I am a teacher. I have seen several students test out of the special education program. But as a parent, I can't help but wonder; is there anything I can do to help her? Did I do something wrong that led us to this point? What if I would have noticed sooner that she constipated at 4 weeks of age? What if I would have pushed harder, BEFORE she turned two, to get her in to see specialists. You can't help but wonder.
So here we are. Blow by blow by blow. Night after sleepless night. And in all of this, I just keep strapping on my combat boots because I don't know what else to do.
Wednesday, January 25, 2017
The Purge
I said to my friend and colleague yesterday during lunch that I could feel myself on the verge of a stress cry. Today, I finally broke. So what better place to purge all of my anxieties than here?
To start, I took a half day. Sometimes, you just need mental health days. But I hate taking them. I see the necessity in them, but I also see the weakness in them. And that's just who I am.
It was a terrible rehearsal today with my Concert Choir. They were ok, but not great. They were tired, I am incredibly tired, and halfway through the rehearsal, I could feel the tears starting. For really no apparent reason. Maybe it was the kids were being ornery, maybe it was because I didn't get any sleep last night. For whatever reason, today I hit my breaking point, in the middle of class. So here I am, sitting on my couch, after a solid stress cry that made me almost hyperventilate to my Teacher Leader, and from there, she sent me home. After talking to my principal about it, which obviously horrifies me. But maybe it's ok to see that I have too. many. things. on. my. plate.
When I started this job, it was definitely a walk in the park. The former teacher hadn't really done much with the choirs, and from there, it was easy to make something of the program. Now, it's too damn big for one person, and I can honestly say I'm struggling. So I'll start from the beginning:
Solo Contest:
Solo contest is in March. Not a huge deal, but it is for the students who want to take a solo to contest. Which is all 21 of them. So that not only means 21 students who need lessons each week, but also two songs, three copies of each. It means arranging three accompanists since only one accompanist can take 10 students thanks to regulations put forth by the music association. Since we do not have a staff accompanist, that means that I have to find three people. That doesn't mean that I haven't, but in addition to finding three people, I also have to make sure that I can find time for them to rehearse with each of the students at least twice. Trying to arrange that type of schedule is fucking ridiculous. But here I am. Right now, most students only have one song, but in order to go to contest, you have to have two. Which means I have to pick out one more song for 21 of them. Which means putting in the time to find one and make copies. Beyond that, I now have students asking if they can take duets with friends. When the hell am I going to find time to do that? I don't want to say no, but after today, I realize I am going to have to.
The Variety Show:
I think what really started it all this morning is that I was staring at a group of students who were tired, who didn't want to really rehearse, who maybe aren't a fan of the song we're singing (which I don't know why, but that's the way it feels). And who arranged the two songs the choral program is singing? ME. On my own time, for free. If I were to go the real route of how to do things correctly, I would have hired someone to arrange the music for me. Beyond that, I'm trying really hard to add some different choreography for them this year, to make the Variety Show that much better than last year. Instead, the students aren't "understanding" the choreography. Meaning, they don't quite get that adding choreography is going to make it that much cooler. But they didn't want to do it today. Then I kept having to repeat myself, and from there, I was getting confused because so many things were going through my mind.
On top of that, to make the Variety Show bigger and better this year, I added a Kids Sing! Camp. Kids in grades 2-6 can come and learn a song with the high school students, and from there, they will sing on stage with the high school students. I already have four students signed up, which is exciting, but I wanted a huge influx of students, and that was not going to happen right away. I don't know why I am pressuring myself about it, but I am. So not only do I have to teach my select choir the choir songs at the beginning of the show, plus the one song they are singing by themselves, but I also have to teach them the two songs that they will sing with the little kids. They are easy, and fairly straight-forward, but it's still time in the classroom. Do we have the time, yes, but that's just one more song that I have to plan for. Then, the girls will be doing body percussion during it, so I also have to figure out AND teach them that.
With all of that, I had the most students I have ever had try out this year audition. Meaning, the Variety Show is also different both nights. Which means I have a ton of students who need lessons, since their audition only has to be a part of the song they are singing. Beyond that, to make it better, I am adding drums to some of the songs, and piano to others. Which means I have to get the drum parts and give them to the kid who is drumming, and I have to learn the piano part. Not too hard, but it takes time. The students have to see me several times before I will put them on stage, but if I'm charging $4 and $6 a ticket, I can't put mediocrity up on the stage.
Speaking of tickets, I have to make the tickets, print the tickets, make the program, print the program, get the biographies entered. I have to make four different tickets and print them all. So my Teacher Leader, while I'm crying my eyes out to her, says that she can help me, just share the file with her, which I did. But now I'm sitting here realizing I forgot to put something on the tickets, and now I wil have to email her.
I also have to make signs for the buckets for the Viewer's Choice Award. I have to find the damn buckets. I have to make sure the custodians not only bring the risers over to the high school, but then get them back. I have to set up the sound system. I have to go to the Des Moines Theatrical Shop and get gel filters for the lights. I have to go to the middle school, where our auditorium is, and not only move the lights, but add the gel filters on.
And in all that, I still have to teach the students. When do I have the time to even plan for class???
Musical
The musical isn't stressing me out too badly, but it's still stressful. I have been asking my colleague for the piano/conductor score for a couple of months, so I can get it to the accompanist. But I still don't have it. Finally, the other day I found some time to call New York City and order it myself. Guess what? It will be here on Friday. Not that hard, and yet my colleague didn't seem to be able to do it.
I am in charge of the music, and luckily, the music isn't that difficult. But after the students learn the music, I am in charge of getting the band together. Which means I have to call area colleges and see if they have musicians that I can borrow. Then I have to get W-9's for all of them, and from there, I have to make sure they get paid. But before they can get paid, I have to make sure that I have enough money for them. And why? Because all of our money for the musical comes from the Variety Show. That's why we have one. To fund our musical. So the Variety Show can't flop, or we don't have money for the Musical.
And in all of that, I have to find time to figure out the score and understand the music and be able to direct it. When the hell do I have time to do that?
Honor Choirs
I have 9 students going to two different honor choirs. Not only do I have to make sure that they have their music learned, but I have to make sure we have transportation, that parent emails have been sent out about the information they need to know. And then, I get to be gone from school to accompany these students to these honor choirs. And why do I do that? Because the students want more opportunities. So I'm trying to give it to them. But while I'm gone, I have to make sure my choirs have stuff that they need to do.
Jazz Choir
This year was the start of our inaugural jazz choir. Instead of doing it during the day, which I have done in the past, with my Select Choir, I made it an actual thing to rehearse one day a week outside of school. When I started it, I knew one day a week was going to be tough. But that was all the time we had for rehearsals because the students are in so many things. However, now, we're at the point where we are going to competitions, and the students really want to compete, but I know they aren't going to do well. Why? Because we don't have the time to rehearse. And it's not like I picked terribly difficult music. So now I am kicking myself: why did I do this? Oh yeah, to give the students more opportunities. To continue to grow my program. To recruit and build a name for these kids because they deserve it.
The Middle School
It's been tough. I have a colleague who is also busy. So I have been trying to help her do her job. I can't do it. It's too much. But yet, here I am, giving her suggestions, calling her to make sure she has done this that and the other thing. And still, I have my own program to concentrate on. I have to make time for meetings with her and the administration. I have to make time to remind her to do things. And then, I have to watch the band have it easier because they get to co-teach because their schedules line up, and then I have to watch them have time to recruit and figure out what they are doing. It's frustrating on several levels, and I worry about the state of my program in a few years.
The Kids
I don't think I have to scream from the mountain tops that I have three kids under 5. They are demanding, I hear "Mooooom?" more than 1000 times per day, and on top of that, I'm trying to keep a house clean, everyone fed, fridge full of groceries, and figuring out what the hell my kids are going to wear everyday. Eric has an affinity for making sure he gets his sleep in the morning, so a lot of the time, I am not only battling three kids and a husband in the morning, but I have to make myself breakfast, get ready for my day and get out the door in a timely fashion. Most of the time, I'm late. Most of the time, I get to school, and I have students waiting for me because I am walking in 5 minutes late. Even when I am up at 4:30 because I can't sleep, and get ready for my day starting at 6 a.m. SOMETHING happens to make me late. Almost every single day. Then Eric and I talk about it, and we try to combat it, but instead, something else happens. It's frustrating and it makes it hard.
In Conclusion:
It's like the end of a high school English essay. "In conclusion" I have figured out that this job has exploded and I am trying to do it all. It's impossible. Just looking back on everything I wrote, and based on the fact I couldn't even get excited about the actual fact that I was accepted into grad school, I am not taking care of me. I need to take care of me. So I am going to delegate and hopefully, that will help the organization and from there, I am hoping that somehow, I will come out of this alive. I'll let you (the .2 people who read this) if I make it.
To start, I took a half day. Sometimes, you just need mental health days. But I hate taking them. I see the necessity in them, but I also see the weakness in them. And that's just who I am.
It was a terrible rehearsal today with my Concert Choir. They were ok, but not great. They were tired, I am incredibly tired, and halfway through the rehearsal, I could feel the tears starting. For really no apparent reason. Maybe it was the kids were being ornery, maybe it was because I didn't get any sleep last night. For whatever reason, today I hit my breaking point, in the middle of class. So here I am, sitting on my couch, after a solid stress cry that made me almost hyperventilate to my Teacher Leader, and from there, she sent me home. After talking to my principal about it, which obviously horrifies me. But maybe it's ok to see that I have too. many. things. on. my. plate.
When I started this job, it was definitely a walk in the park. The former teacher hadn't really done much with the choirs, and from there, it was easy to make something of the program. Now, it's too damn big for one person, and I can honestly say I'm struggling. So I'll start from the beginning:
Solo Contest:
Solo contest is in March. Not a huge deal, but it is for the students who want to take a solo to contest. Which is all 21 of them. So that not only means 21 students who need lessons each week, but also two songs, three copies of each. It means arranging three accompanists since only one accompanist can take 10 students thanks to regulations put forth by the music association. Since we do not have a staff accompanist, that means that I have to find three people. That doesn't mean that I haven't, but in addition to finding three people, I also have to make sure that I can find time for them to rehearse with each of the students at least twice. Trying to arrange that type of schedule is fucking ridiculous. But here I am. Right now, most students only have one song, but in order to go to contest, you have to have two. Which means I have to pick out one more song for 21 of them. Which means putting in the time to find one and make copies. Beyond that, I now have students asking if they can take duets with friends. When the hell am I going to find time to do that? I don't want to say no, but after today, I realize I am going to have to.
The Variety Show:
I think what really started it all this morning is that I was staring at a group of students who were tired, who didn't want to really rehearse, who maybe aren't a fan of the song we're singing (which I don't know why, but that's the way it feels). And who arranged the two songs the choral program is singing? ME. On my own time, for free. If I were to go the real route of how to do things correctly, I would have hired someone to arrange the music for me. Beyond that, I'm trying really hard to add some different choreography for them this year, to make the Variety Show that much better than last year. Instead, the students aren't "understanding" the choreography. Meaning, they don't quite get that adding choreography is going to make it that much cooler. But they didn't want to do it today. Then I kept having to repeat myself, and from there, I was getting confused because so many things were going through my mind.
On top of that, to make the Variety Show bigger and better this year, I added a Kids Sing! Camp. Kids in grades 2-6 can come and learn a song with the high school students, and from there, they will sing on stage with the high school students. I already have four students signed up, which is exciting, but I wanted a huge influx of students, and that was not going to happen right away. I don't know why I am pressuring myself about it, but I am. So not only do I have to teach my select choir the choir songs at the beginning of the show, plus the one song they are singing by themselves, but I also have to teach them the two songs that they will sing with the little kids. They are easy, and fairly straight-forward, but it's still time in the classroom. Do we have the time, yes, but that's just one more song that I have to plan for. Then, the girls will be doing body percussion during it, so I also have to figure out AND teach them that.
With all of that, I had the most students I have ever had try out this year audition. Meaning, the Variety Show is also different both nights. Which means I have a ton of students who need lessons, since their audition only has to be a part of the song they are singing. Beyond that, to make it better, I am adding drums to some of the songs, and piano to others. Which means I have to get the drum parts and give them to the kid who is drumming, and I have to learn the piano part. Not too hard, but it takes time. The students have to see me several times before I will put them on stage, but if I'm charging $4 and $6 a ticket, I can't put mediocrity up on the stage.
Speaking of tickets, I have to make the tickets, print the tickets, make the program, print the program, get the biographies entered. I have to make four different tickets and print them all. So my Teacher Leader, while I'm crying my eyes out to her, says that she can help me, just share the file with her, which I did. But now I'm sitting here realizing I forgot to put something on the tickets, and now I wil have to email her.
I also have to make signs for the buckets for the Viewer's Choice Award. I have to find the damn buckets. I have to make sure the custodians not only bring the risers over to the high school, but then get them back. I have to set up the sound system. I have to go to the Des Moines Theatrical Shop and get gel filters for the lights. I have to go to the middle school, where our auditorium is, and not only move the lights, but add the gel filters on.
And in all that, I still have to teach the students. When do I have the time to even plan for class???
Musical
The musical isn't stressing me out too badly, but it's still stressful. I have been asking my colleague for the piano/conductor score for a couple of months, so I can get it to the accompanist. But I still don't have it. Finally, the other day I found some time to call New York City and order it myself. Guess what? It will be here on Friday. Not that hard, and yet my colleague didn't seem to be able to do it.
I am in charge of the music, and luckily, the music isn't that difficult. But after the students learn the music, I am in charge of getting the band together. Which means I have to call area colleges and see if they have musicians that I can borrow. Then I have to get W-9's for all of them, and from there, I have to make sure they get paid. But before they can get paid, I have to make sure that I have enough money for them. And why? Because all of our money for the musical comes from the Variety Show. That's why we have one. To fund our musical. So the Variety Show can't flop, or we don't have money for the Musical.
And in all of that, I have to find time to figure out the score and understand the music and be able to direct it. When the hell do I have time to do that?
Honor Choirs
I have 9 students going to two different honor choirs. Not only do I have to make sure that they have their music learned, but I have to make sure we have transportation, that parent emails have been sent out about the information they need to know. And then, I get to be gone from school to accompany these students to these honor choirs. And why do I do that? Because the students want more opportunities. So I'm trying to give it to them. But while I'm gone, I have to make sure my choirs have stuff that they need to do.
Jazz Choir
This year was the start of our inaugural jazz choir. Instead of doing it during the day, which I have done in the past, with my Select Choir, I made it an actual thing to rehearse one day a week outside of school. When I started it, I knew one day a week was going to be tough. But that was all the time we had for rehearsals because the students are in so many things. However, now, we're at the point where we are going to competitions, and the students really want to compete, but I know they aren't going to do well. Why? Because we don't have the time to rehearse. And it's not like I picked terribly difficult music. So now I am kicking myself: why did I do this? Oh yeah, to give the students more opportunities. To continue to grow my program. To recruit and build a name for these kids because they deserve it.
The Middle School
It's been tough. I have a colleague who is also busy. So I have been trying to help her do her job. I can't do it. It's too much. But yet, here I am, giving her suggestions, calling her to make sure she has done this that and the other thing. And still, I have my own program to concentrate on. I have to make time for meetings with her and the administration. I have to make time to remind her to do things. And then, I have to watch the band have it easier because they get to co-teach because their schedules line up, and then I have to watch them have time to recruit and figure out what they are doing. It's frustrating on several levels, and I worry about the state of my program in a few years.
The Kids
I don't think I have to scream from the mountain tops that I have three kids under 5. They are demanding, I hear "Mooooom?" more than 1000 times per day, and on top of that, I'm trying to keep a house clean, everyone fed, fridge full of groceries, and figuring out what the hell my kids are going to wear everyday. Eric has an affinity for making sure he gets his sleep in the morning, so a lot of the time, I am not only battling three kids and a husband in the morning, but I have to make myself breakfast, get ready for my day and get out the door in a timely fashion. Most of the time, I'm late. Most of the time, I get to school, and I have students waiting for me because I am walking in 5 minutes late. Even when I am up at 4:30 because I can't sleep, and get ready for my day starting at 6 a.m. SOMETHING happens to make me late. Almost every single day. Then Eric and I talk about it, and we try to combat it, but instead, something else happens. It's frustrating and it makes it hard.
In Conclusion:
It's like the end of a high school English essay. "In conclusion" I have figured out that this job has exploded and I am trying to do it all. It's impossible. Just looking back on everything I wrote, and based on the fact I couldn't even get excited about the actual fact that I was accepted into grad school, I am not taking care of me. I need to take care of me. So I am going to delegate and hopefully, that will help the organization and from there, I am hoping that somehow, I will come out of this alive. I'll let you (the .2 people who read this) if I make it.
Wednesday, December 28, 2016
Keeping up the Fight for Catherine
It's amazing how FAR you have come! We are three months without any medicine, cutting out just about everything that we know was causing you issues, and here you are, almost 50 words and becoming more than a helpless toddler. Today we had a bit of a set-back, but I am hoping that it won't be too big a burden.
We had your ear tubes follow-up today (which should have come in October, but between all of James' things and your therapies, we have been busy). I got you squeezed in today, one of the last days before our insurance resets.
We went back to our same pediatric ENT doctor that we started with, who had horrible bedside manner and in all, made it a very pleasant experience. However, I went because he was the one who put the tubes in, so I thought it would be better if we went back. I am happy to say it was a much different experience, although when I brought up that the U of I mentioned you should have your tonsils out, he scoffed at it. So I let it go. Especially because we now know what we know and when we visited the U of I, we had no idea.
Your right ear looks great, the tube is still in it's place and you can hear well out of it. Your left ear is another story. The tube fell out and the hole closed, which is the good news. The bad news is that there was fluid behind your ear drum, causing some hearing issues.
I shared with Dr. Schulte my concern with waiting the recommended three months to see what that ear does (more ear infections? the fluid just clears out on it's own?) because you are so far behind in your speech. How will your speech development be affected if you can only hear out of one ear?
But alas, we wait. I am hoping that ear infections don't resume, but with your track record, I can almost bet they will. I am hoping that I will be pleasantly surprised and the fluid goes away on it's own.
There's been a lot of "hoping" going on for you, little girl, but again, at least it's only this. We have figured out the majority of things for you, and I am hoping (there it is again) we don't go down a terrible path. We've been down so many, I really need this to stay positive.
As for the rest of it, your speech therapy is going really well. Apparently, the goal for any 2 year old is to have 50 words by the time they are three. Once they hit 50 words, they are considered on the low end of speech development, but still within the "normal" spectrum. So here you are. It's been a joy to hear you talk, and you babble on and on and on so much sometimes, it's a little grating on our souls, but for the most part, I am incredibly happy that you are moving forward.
In other news, I have had no less than 5 people contact me about the effects Zyrtec had on your development. Sometimes, I can't help but be incredibly passionate about it, and I am sure that is overwhelming. Most of the time my response is: "GET THEM OFF THAT MEDICINE!" it's scary to think there are that many people noticing reactions to different medicines and all the while, doctors prescribe it like candy.
We have taken to treating the kids as naturally as we can. Drew had a nasty fever a few weeks ago (103.6 - scared me to death!) and we threw some Motrin at him. He didn't seem to have any effect, so that's refreshing. However, we try to let illnesses (and there have been a ton in our house recently) make their way through the system without any intervention, especially anti-biotics.
Oh, how thankful I am that you are progressing, little girl. Here's to hoping (again) that it stays that way!
We had your ear tubes follow-up today (which should have come in October, but between all of James' things and your therapies, we have been busy). I got you squeezed in today, one of the last days before our insurance resets.
We went back to our same pediatric ENT doctor that we started with, who had horrible bedside manner and in all, made it a very pleasant experience. However, I went because he was the one who put the tubes in, so I thought it would be better if we went back. I am happy to say it was a much different experience, although when I brought up that the U of I mentioned you should have your tonsils out, he scoffed at it. So I let it go. Especially because we now know what we know and when we visited the U of I, we had no idea.
Your right ear looks great, the tube is still in it's place and you can hear well out of it. Your left ear is another story. The tube fell out and the hole closed, which is the good news. The bad news is that there was fluid behind your ear drum, causing some hearing issues.
I shared with Dr. Schulte my concern with waiting the recommended three months to see what that ear does (more ear infections? the fluid just clears out on it's own?) because you are so far behind in your speech. How will your speech development be affected if you can only hear out of one ear?
But alas, we wait. I am hoping that ear infections don't resume, but with your track record, I can almost bet they will. I am hoping that I will be pleasantly surprised and the fluid goes away on it's own.
There's been a lot of "hoping" going on for you, little girl, but again, at least it's only this. We have figured out the majority of things for you, and I am hoping (there it is again) we don't go down a terrible path. We've been down so many, I really need this to stay positive.
As for the rest of it, your speech therapy is going really well. Apparently, the goal for any 2 year old is to have 50 words by the time they are three. Once they hit 50 words, they are considered on the low end of speech development, but still within the "normal" spectrum. So here you are. It's been a joy to hear you talk, and you babble on and on and on so much sometimes, it's a little grating on our souls, but for the most part, I am incredibly happy that you are moving forward.
In other news, I have had no less than 5 people contact me about the effects Zyrtec had on your development. Sometimes, I can't help but be incredibly passionate about it, and I am sure that is overwhelming. Most of the time my response is: "GET THEM OFF THAT MEDICINE!" it's scary to think there are that many people noticing reactions to different medicines and all the while, doctors prescribe it like candy.
We have taken to treating the kids as naturally as we can. Drew had a nasty fever a few weeks ago (103.6 - scared me to death!) and we threw some Motrin at him. He didn't seem to have any effect, so that's refreshing. However, we try to let illnesses (and there have been a ton in our house recently) make their way through the system without any intervention, especially anti-biotics.
Oh, how thankful I am that you are progressing, little girl. Here's to hoping (again) that it stays that way!
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