Max has to take a boat load of medicines everyday. Most are daily , but there are exceptions. He really tries to be responsible for his meds and for the most part he is successful. It's the oddballs that throw him off, in particular the one he takes Monday, Wednesday, an Friday.
After one of our many, "I'm not sure if I have, or oops I took it" conversations I decided tit was high time do something to help him. Namely a pill organizer. We could load it up each week and he would be good to go.
I don't know why I hadn't thought of this before. My mother has had one for years and years, so it's not a new idea. It has been wonderful for Max. He knows exactly what to take and can see if he has. So far he only has to worry about his medicines at bedtime, but it would be easy enough to get one for both morning and night. This will also be helpful when we travel.
It is a great thing when you can find an easy and inexpensive solution to a big problem.
Showing posts with label CF. Show all posts
Showing posts with label CF. Show all posts
Sunday, April 28, 2013
Monday, April 09, 2012
Cystic Fibrosis Foundation - Adding Tomorrows
These are exciting times for families affected by CF. We are on the cusp of something big.
Sunday, January 03, 2010
Boy in a Box
There is an old joke how kids always seem to like the box the toy came in more than the toy itself.
Well there is a small grain of truth in that statement.
Max loves his drum kit, but... I sometimes think he loves the box it came in just a bit more.
He likes to sit in and watch television. When it's his turn to play on the Wii, he'll be there in his box. He has even dragged it upstairs to sleep in in it, surrounded by his stuffed animals and covered with his second favorite beach towel (his favorite was lost while on vacation- it was all very tragic and completely accidental).
And it all works, except the sleeping. He had to admit after about an hour that although the box is big, but not quite big enough to comfortably sleep inside.
Then today we had a new wrinkle to the whole boy-in-a-box thing, nebulization.
Max has Cystic Fibrosis and some of the many things we do to keep him healthy are his nebulizations (various medicines are breathed in via an aerosol form) and The Vest. Today Max decided he wanted to do it all in his box with the box on the sofa.
It was hilarious.
At one point there was a closed box, loudly vibrating, with various tubes leading into it on the sofa. Much to our amusement Max would periodically peek out.
There is never a dull moment around here, especially if you have a boy in a box.
Well there is a small grain of truth in that statement.
Max loves his drum kit, but... I sometimes think he loves the box it came in just a bit more.
He likes to sit in and watch television. When it's his turn to play on the Wii, he'll be there in his box. He has even dragged it upstairs to sleep in in it, surrounded by his stuffed animals and covered with his second favorite beach towel (his favorite was lost while on vacation- it was all very tragic and completely accidental).
And it all works, except the sleeping. He had to admit after about an hour that although the box is big, but not quite big enough to comfortably sleep inside.
Then today we had a new wrinkle to the whole boy-in-a-box thing, nebulization.
Max has Cystic Fibrosis and some of the many things we do to keep him healthy are his nebulizations (various medicines are breathed in via an aerosol form) and The Vest. Today Max decided he wanted to do it all in his box with the box on the sofa.
It was hilarious.
At one point there was a closed box, loudly vibrating, with various tubes leading into it on the sofa. Much to our amusement Max would periodically peek out.
There is never a dull moment around here, especially if you have a boy in a box.
Monday, July 27, 2009
Can't Trick Public on Health Costs
If you are a supporter of the great health care boondoggle, please read this article.
Can't trick public on health costs | detnews.com | The Detroit News
Shared via AddThis
Approximately just 30,000 adults and children suffer from CF in the USA which works out to about 0.01 % of the population of the United States. Max's drug expenses alone come to just over $42,000 a year, our health insurance covers the vast majority. Honestly I think CF patients, with an average lifespan of approximately 35 years, are going to get short shrift. It is an expensive disease and the so called universal healthcare coverage will result in reduced access to therapies and drugs in the interest in saving the bottom line. The system right now is not perfect, but works for families such as mine.
Can't trick public on health costs | detnews.com | The Detroit News
Shared via AddThis
Approximately just 30,000 adults and children suffer from CF in the USA which works out to about 0.01 % of the population of the United States. Max's drug expenses alone come to just over $42,000 a year, our health insurance covers the vast majority. Honestly I think CF patients, with an average lifespan of approximately 35 years, are going to get short shrift. It is an expensive disease and the so called universal healthcare coverage will result in reduced access to therapies and drugs in the interest in saving the bottom line. The system right now is not perfect, but works for families such as mine.
Thursday, April 30, 2009
Go Denny, Go
I'm from the northeast where NASCAR is an extremely minor entity. Oh we knew about the big races, but the drivers don't have nearly the same fan base as in the south. Baseball, football and hockey are the big sports.
Then I moved done south.
The boys live and breath NASCAR, they have their favorite drivers and love to watch the races on TV. I've learned quite a bit, I now know about individual drivers and I even have a vague idea about the standings. And I even have favorite drivers. Originally they were Elliot and Hermie Sadler, they are from Virginia and them seem like a couple of really nice guys.
Then Denny Hamlin blew in, he's a local guy and a pretty darn good driver. Then he started his charitable foundation and that pushed him over into being my favorite. It turns out he has a cousin with CF and as a result his charity's primary focus is Cystic Fibrosis. In fact tonight was his big "Short Track Showdown." This is his second year hosting an event at the Southside speedway. Last year he donated over $50, 000 to the Cystic Fibrosis Foundation. This year he is trying to double it.
So all I can say is Go Denny! Go!
Then I moved done south.
The boys live and breath NASCAR, they have their favorite drivers and love to watch the races on TV. I've learned quite a bit, I now know about individual drivers and I even have a vague idea about the standings. And I even have favorite drivers. Originally they were Elliot and Hermie Sadler, they are from Virginia and them seem like a couple of really nice guys.
Then Denny Hamlin blew in, he's a local guy and a pretty darn good driver. Then he started his charitable foundation and that pushed him over into being my favorite. It turns out he has a cousin with CF and as a result his charity's primary focus is Cystic Fibrosis. In fact tonight was his big "Short Track Showdown." This is his second year hosting an event at the Southside speedway. Last year he donated over $50, 000 to the Cystic Fibrosis Foundation. This year he is trying to double it.
So all I can say is Go Denny! Go!
Thursday, March 19, 2009
Too Much To Do
Most school days are pretty quiet after the initial chaos of getting everyone out to the bus ends. I walk the dogs, mess about on the computer and, if needed, do a bit of food shopping. We have had a fairly good winter health wise so I haven't had too many days with someone staying home.
Then there are days like yesterday.
In the morning Max had a CF clinic check-up, he has them roughly every three months. It was his big annual appointment- blood draw, x-ray, the whole schmear. As an added bonus Jake also an orthodontist appointment in the afternoon. Both of these were in downtown Richmond.
Then to make it really fun we had a half-day at school (some sort of stupid staff development).
So I had to worry about either getting home in time to meet Rebecca at the bus or make sure Jake (who comes home a hour half earlier) was there to greet her. It got a bit hairy when Jake wasn't picking up the phone and I ended up calling Meryl. But he eventually did pick up when I was able to use my cell (I was at first calling from a hospital line and he did not recognize the caller ID) and all was well.
Then it was a sprint home with a hurried lunch and I then got to haul everyone back up to Richmond. Max had soccer practice at 5:30, so I tossed in cleats, shin guards, a pair of shorts, and a bottle of water. I'm glad I did that, because we were just able to make his practice.
Today was much nicer. All I had to do was go to the library and then I get to swap out some baseball uniforms. Just for fun I had lunch with the dynamic duo at school.
Then there are days like yesterday.
In the morning Max had a CF clinic check-up, he has them roughly every three months. It was his big annual appointment- blood draw, x-ray, the whole schmear. As an added bonus Jake also an orthodontist appointment in the afternoon. Both of these were in downtown Richmond.
Then to make it really fun we had a half-day at school (some sort of stupid staff development).
So I had to worry about either getting home in time to meet Rebecca at the bus or make sure Jake (who comes home a hour half earlier) was there to greet her. It got a bit hairy when Jake wasn't picking up the phone and I ended up calling Meryl. But he eventually did pick up when I was able to use my cell (I was at first calling from a hospital line and he did not recognize the caller ID) and all was well.
Then it was a sprint home with a hurried lunch and I then got to haul everyone back up to Richmond. Max had soccer practice at 5:30, so I tossed in cleats, shin guards, a pair of shorts, and a bottle of water. I'm glad I did that, because we were just able to make his practice.
Today was much nicer. All I had to do was go to the library and then I get to swap out some baseball uniforms. Just for fun I had lunch with the dynamic duo at school.
Wednesday, November 26, 2008
Artist of the Week: CF Patients
This week the artist of the week is actually a group, Cystic Fibrosis patients. Namely those featured in calendars we've acquired this past year from two of the big drug companies, Axcan and Novartis. Both put out CF themed calendars that are distributed for free at CF clinics.
Axcan's calendar is the result of an annual calendar art contest open to all CF patients. I forgot about the deadline this year, but we'll give it a shot next year.
Anyway the end result is a fairly nice calendar that features art work from kids as young as five all the way up to twenty two. I picked the turkey featured on November because he is so utterly appropriate for today. If you click on the turkey he will take you to a complete photo set of the calendar.
The other company, Novartis, has a different take on CF, a CF patient is profiled each month. The photographs are stunning and the bios give a little peek into each person's life. There is a grandma, a firefighter, a set of twins, and so on. People of all ages and types. As a parent of a child with CF it is so very heartening to see people in their 50's and up.
And here is where I get on my soapbox.
CF affects ALL populations, male and female, black and white. It is slightly more prevalent in Caucasians, but if you click through the pictures (I made a picture set out of the entire calendar) it is not the only group. I was appalled at the ridiculous decision by the Carleton University student association. It was an idiotic vote based on incomplete and erroneous information.
Quite a firestorm of controversy was stirred up and according to the latest press releases from the University's President and the Student Association's President the decision will in all likelihood be reversed.
Axcan's calendar is the result of an annual calendar art contest open to all CF patients. I forgot about the deadline this year, but we'll give it a shot next year.
Anyway the end result is a fairly nice calendar that features art work from kids as young as five all the way up to twenty two. I picked the turkey featured on November because he is so utterly appropriate for today. If you click on the turkey he will take you to a complete photo set of the calendar.
The other company, Novartis, has a different take on CF, a CF patient is profiled each month. The photographs are stunning and the bios give a little peek into each person's life. There is a grandma, a firefighter, a set of twins, and so on. People of all ages and types. As a parent of a child with CF it is so very heartening to see people in their 50's and up.
And here is where I get on my soapbox.
CF affects ALL populations, male and female, black and white. It is slightly more prevalent in Caucasians, but if you click through the pictures (I made a picture set out of the entire calendar) it is not the only group. I was appalled at the ridiculous decision by the Carleton University student association. It was an idiotic vote based on incomplete and erroneous information.
Quite a firestorm of controversy was stirred up and according to the latest press releases from the University's President and the Student Association's President the decision will in all likelihood be reversed.
Monday, October 27, 2008
Dean Barnett
I never met Dean, I don't think I ever read his site, Soxblog, but he had been very kind to us.
When we first learned of Max's CF diagnoses Larry wrote to Dean. Larry read his blog and knew that Dean too had CF. Amazingly Dean took the time to respond.
Today Dean was taken from us by the ravages of Cystic Fibrosis. He was only 41, far outstripping the projected lifespan a newborn with CF when he was born in 1967, but still too young.
And that is what I hate most about CF.
Most of us live life with the thought of death far far out of our minds. For those affected by CF (not just the patient, but family and friends as well) are just able to keep death at arms length. Everything we do, the endless treatments, the countless doctors visits, the never ending meds are all to get us a little more time. To keep Max just that much healthier. We strive to give him a normal life as possible, one with death kept at arm's length.
I'm so sorry at Dean is no longer here, but he did give a good fight and did the very best that he could do and lived life as fully as possible.
When we first learned of Max's CF diagnoses Larry wrote to Dean. Larry read his blog and knew that Dean too had CF. Amazingly Dean took the time to respond.
Today Dean was taken from us by the ravages of Cystic Fibrosis. He was only 41, far outstripping the projected lifespan a newborn with CF when he was born in 1967, but still too young.
And that is what I hate most about CF.
Most of us live life with the thought of death far far out of our minds. For those affected by CF (not just the patient, but family and friends as well) are just able to keep death at arms length. Everything we do, the endless treatments, the countless doctors visits, the never ending meds are all to get us a little more time. To keep Max just that much healthier. We strive to give him a normal life as possible, one with death kept at arm's length.
I'm so sorry at Dean is no longer here, but he did give a good fight and did the very best that he could do and lived life as fully as possible.
Thursday, June 26, 2008
Chopin and CF
It has long been thought that Frédéric Chopin died of tuberculosis. A very common aliment in the 18th century. However, researchers have been reexamining Chopin's life and the possible causes of his death and a new diagnoses has been brought forward. He might have suffered from Cystic Fibrosis.
Here is the abstract from the article in The Journal of Applied Genetics.
CF wasn't definitively described until the late 1930's, but it certainly had been around long before then. It also present a broad range of affects and cases can range from mild to severe. Max, for example, is on the more severe end of the scale. His lung function is excellent (117% when compared to a a normal, unaffected child) but, he is completely unable to digest most foods. It is only through an incredible amount of drugs and therapies that he is able to thrive. Before he was diagnosed he was literally starving to death. He would eat vast quantities of food and yet he lagged far behind his twin sister in growth.
Finding out whether or not Chopin suffered from CF really wouldn't change much, but it would mean a great deal to those who do suffer from it. It would show that it is possible to leave your mark on the world despite what set backs CF can present to you. And maybe it might just inspire Max to keep with piano.
Here is the abstract from the article in The Journal of Applied Genetics.
Abstract: Frédéric Chopin – a great Polish composer and pianist – suffered from
a chronic disease. Both during his life and after death physicians disagreed on the subject
of Chopin’s diagnosis. His contemporaries accepted the diagnosis of a disease
common in the 18th century – tuberculosis. Description of new clinical entities provoked
new dilemmas in the 20th century. In our opinion the most tenable seems to be
the diagnosis of cystic fibrosis. In this work we present F. Chopin’s case history
and discuss cons and pron for cystic fibrosis as the cause of F. Chopin’s suffering
and death.
Key words: Chopin, cystic fibrosis, genetics, late diagnosis.
CF wasn't definitively described until the late 1930's, but it certainly had been around long before then. It also present a broad range of affects and cases can range from mild to severe. Max, for example, is on the more severe end of the scale. His lung function is excellent (117% when compared to a a normal, unaffected child) but, he is completely unable to digest most foods. It is only through an incredible amount of drugs and therapies that he is able to thrive. Before he was diagnosed he was literally starving to death. He would eat vast quantities of food and yet he lagged far behind his twin sister in growth.
Finding out whether or not Chopin suffered from CF really wouldn't change much, but it would mean a great deal to those who do suffer from it. It would show that it is possible to leave your mark on the world despite what set backs CF can present to you. And maybe it might just inspire Max to keep with piano.
Tuesday, February 12, 2008
Prescribed Oddities
This may look like an ordinary bag of Doritos with a label on it, but it is so much more.
The key thing here is the label.
If you look closely you'll see that this was one of Max's prescribed snacks while in the hospital. Yes, if you have CF you get a prescription for snacks when you are in the hospital. This falls under the odd treatments from yesterday's post.
When Max was first admitted the nutritionist stopped by and asked me what Max would like for snacks. CF patients need about 50% more calories than the average person, so snacks are a big part of his diet. So every day the kitchen would send up a cart with snacks to be doled out to all the patients that are prescribed "nourishment."
I realize that they do have to label everything, but it still is hilarious to get a snack bag with an official stamp on it. Especially when it is an item that is often vilified by nutritionists.
The key thing here is the label.
If you look closely you'll see that this was one of Max's prescribed snacks while in the hospital. Yes, if you have CF you get a prescription for snacks when you are in the hospital. This falls under the odd treatments from yesterday's post.
When Max was first admitted the nutritionist stopped by and asked me what Max would like for snacks. CF patients need about 50% more calories than the average person, so snacks are a big part of his diet. So every day the kitchen would send up a cart with snacks to be doled out to all the patients that are prescribed "nourishment."
I realize that they do have to label everything, but it still is hilarious to get a snack bag with an official stamp on it. Especially when it is an item that is often vilified by nutritionists.
Monday, February 11, 2008
What I've Learned
1.) The Cystic Fibrosis clinic is willing to listen and work with me. A week and a half ago, just a day after Larry got sprung from the hospital Max had a CF clinic check up. It was his big annual exam with x-rays, blood draws and all sorts of excitement in addition to the usual height, weight and pulmonary function tests (PFTs measure how well the lungs work). Every thing was just ducky until we got the results back from the PFTs. Max, whose baseline runs at about 105% of a normal kid, gives amazingly good data for a child his age. He loves blowing into the tube and performs like a champ. His results were not good, he had lost 20% of his lung function since last December.
20%
That is a frightening drop.
The nurse practitioner that we love came into the room with the bad news. She sat me down and said I had a choice, we could could admit him in the hospital and give him IV antibiotics or we could load him up with antibiotics at home. I was being given this choice because they knew that I would not flake out and if it did not work I would high tail back in there (having our home relatively close to the CF clinic worked in our favor as well, I pity the families that have to drive hours and hours to the nearest CF clinic). If we chose the home route she rattled off a list of antibiotics he would have to take. First off was cipro which Max hates and is a royal pain to administer (Calcium binds to it so it has to be given two hours before and/or four hours after consuming any calcium. Max lives for ice cream so this really limits when he can have it.) then she mentioned Bactrim and another no-no for Max since the last time he got it he broke out in hives. Hospitalization was the only way to go. We could dink around for a month trying this that and another drug or just suck it up and go whole hog in the hospital.
I told her that we would hospitilze Max BUT I needed to talk to my husband first and could we delay thing until Monday. I then explained that my poor husband had literally just come home from the hospital from abdominal surgery and I wanted to give him a little more time to recover.
Her jaw literally dropped. Yes we certainly could delay things until Monday.
2.) I have the most awesome brother in law in the world. Andy happily drove down from New Jersey to help us out as long as we needed him. Since Larry could not drive, Andy would drive around and play "Soccer Mom." What most impressed me was when he went and picked up Miss Rebecca up from school, she had been crying and complaining of a stomach ache. While driving her around in his own car she vomited. He did not bat an eye or freak out about a child getting sick in his car. He loves his niece and nephews and really views them as his own. Not many single guys could do that.
3.) Hospitals are not a good place to rest up. Well I already knew that, but that knowledge gets brutally reinforced every time I spend time in a hospital. I opted to stay the night with Max and camped out in his room for the whole stay. I only went home once to do laundry and pick up some treats for us. The chair "bed" was awful. It would not stay locked in a reclined position and would pop upright if I shifted just so. Then there was the added bonus of nurses coming into the room in the middle of the night to start IVs (he got dosed with one drug every 8 hours) and the piercing alarm of the infusion pump at the end of each round. I'd lay there in the dark hating the fact that I'd have to get up to summon the nurse and hit the reset button for some quiet.
4.) I also have a really awesome friend. Meryl came to visit Max when I ducked out to go home for a bit. I needed clean clothes and I knew things would be not much better at home. Larry, because of his surgery, couldn't do laundry and I wasn't going to ask Andy to do it. Originally Meryl was only going to stay for and hour or so, but in the end she stayed until I returned. She could she he was anxious about being alone and decided to stay put.
5.) CF patients get very interesting treatments. We had a whole slew of respiratory therapists the would come in and do Max's thumpies. Max did not like having strangers at first, but in the end he got over it. I liked the break and I was able to see ways I could improve my technique. Then there was the food, but I'm saving that for a later post.
6.) There is no nursing shortage in teaching hospitals. When Larry was in his hospital he would get one nurse per shift, no more and no less. At the one Max was in (a teaching hospital) we would have the shift nurse and one or two in training. Then there were the nursing students and a few others just popping in. Throw in a few med students (who Meryl and I swear looked to be about twelve) a child life specialist, a teacher, the attending, the residents of the day and the odd extra respiratory therapist (they liked to stop by and visit) it was like a non stop party.
20%
That is a frightening drop.
The nurse practitioner that we love came into the room with the bad news. She sat me down and said I had a choice, we could could admit him in the hospital and give him IV antibiotics or we could load him up with antibiotics at home. I was being given this choice because they knew that I would not flake out and if it did not work I would high tail back in there (having our home relatively close to the CF clinic worked in our favor as well, I pity the families that have to drive hours and hours to the nearest CF clinic). If we chose the home route she rattled off a list of antibiotics he would have to take. First off was cipro which Max hates and is a royal pain to administer (Calcium binds to it so it has to be given two hours before and/or four hours after consuming any calcium. Max lives for ice cream so this really limits when he can have it.) then she mentioned Bactrim and another no-no for Max since the last time he got it he broke out in hives. Hospitalization was the only way to go. We could dink around for a month trying this that and another drug or just suck it up and go whole hog in the hospital.
I told her that we would hospitilze Max BUT I needed to talk to my husband first and could we delay thing until Monday. I then explained that my poor husband had literally just come home from the hospital from abdominal surgery and I wanted to give him a little more time to recover.
Her jaw literally dropped. Yes we certainly could delay things until Monday.
2.) I have the most awesome brother in law in the world. Andy happily drove down from New Jersey to help us out as long as we needed him. Since Larry could not drive, Andy would drive around and play "Soccer Mom." What most impressed me was when he went and picked up Miss Rebecca up from school, she had been crying and complaining of a stomach ache. While driving her around in his own car she vomited. He did not bat an eye or freak out about a child getting sick in his car. He loves his niece and nephews and really views them as his own. Not many single guys could do that.
3.) Hospitals are not a good place to rest up. Well I already knew that, but that knowledge gets brutally reinforced every time I spend time in a hospital. I opted to stay the night with Max and camped out in his room for the whole stay. I only went home once to do laundry and pick up some treats for us. The chair "bed" was awful. It would not stay locked in a reclined position and would pop upright if I shifted just so. Then there was the added bonus of nurses coming into the room in the middle of the night to start IVs (he got dosed with one drug every 8 hours) and the piercing alarm of the infusion pump at the end of each round. I'd lay there in the dark hating the fact that I'd have to get up to summon the nurse and hit the reset button for some quiet.
4.) I also have a really awesome friend. Meryl came to visit Max when I ducked out to go home for a bit. I needed clean clothes and I knew things would be not much better at home. Larry, because of his surgery, couldn't do laundry and I wasn't going to ask Andy to do it. Originally Meryl was only going to stay for and hour or so, but in the end she stayed until I returned. She could she he was anxious about being alone and decided to stay put.
5.) CF patients get very interesting treatments. We had a whole slew of respiratory therapists the would come in and do Max's thumpies. Max did not like having strangers at first, but in the end he got over it. I liked the break and I was able to see ways I could improve my technique. Then there was the food, but I'm saving that for a later post.
6.) There is no nursing shortage in teaching hospitals. When Larry was in his hospital he would get one nurse per shift, no more and no less. At the one Max was in (a teaching hospital) we would have the shift nurse and one or two in training. Then there were the nursing students and a few others just popping in. Throw in a few med students (who Meryl and I swear looked to be about twelve) a child life specialist, a teacher, the attending, the residents of the day and the odd extra respiratory therapist (they liked to stop by and visit) it was like a non stop party.
Friday, January 18, 2008
Nuts
I love Max and Rebecca's teachers. I think both of them got placed in the right classes for them.
Rebecca has a very experienced teacher who has the calmest and best behaved class in the school. She is not at all mean, she expects such behavior and gets it. Rebecca looks forward to school each day and is genuinely upset when she can't go.
Max's teacher is much younger, but started in the Richmond public school system. Nothing fazes her. She is positive and has a very dynamic teaching style. Best of all she completely gets Max and all his little quirks. He is not her only special health needs kid in her class. One of his classmates has a severe peanut allergy which makes Max's need for enzymes and unlimited potty access small potatoes.
But, and you new there was going to be a but here, things are a changing in Max's classroom.
His teacher is pregnant and is due mid March. Which is a bummer for the class, but she would get them through most of the year before handing over the class to her replacement. Unfortunately she has transitioned into a high risk pregnancy and had to stop as of last Monday.
She wasn't in on Monday and that wasn't a big deal. Tuesday and Wednesday she was again absent. When Thursday rolled around and Max got a substitute again I knew something was up. That evening I got an email from the room Parent (the parent that helps the teacher organize all the in class parties throughout the year) that told us what was going on and that Max's teacher wouldn't be coming back.
Nuts.
Now I have to reintroduce myself and bring up Max's needs with a new teacher. I'm lucky that Max has become the darling of the office staff (he sometimes dances for them when he goes in to get his enzymes). They look out for him and very very conscientious about his enzymes. Max too is very careful about such things and does not hesitate to speak up for himself. I just wish it wasn't happening.
Rebecca has a very experienced teacher who has the calmest and best behaved class in the school. She is not at all mean, she expects such behavior and gets it. Rebecca looks forward to school each day and is genuinely upset when she can't go.
Max's teacher is much younger, but started in the Richmond public school system. Nothing fazes her. She is positive and has a very dynamic teaching style. Best of all she completely gets Max and all his little quirks. He is not her only special health needs kid in her class. One of his classmates has a severe peanut allergy which makes Max's need for enzymes and unlimited potty access small potatoes.
But, and you new there was going to be a but here, things are a changing in Max's classroom.
His teacher is pregnant and is due mid March. Which is a bummer for the class, but she would get them through most of the year before handing over the class to her replacement. Unfortunately she has transitioned into a high risk pregnancy and had to stop as of last Monday.
She wasn't in on Monday and that wasn't a big deal. Tuesday and Wednesday she was again absent. When Thursday rolled around and Max got a substitute again I knew something was up. That evening I got an email from the room Parent (the parent that helps the teacher organize all the in class parties throughout the year) that told us what was going on and that Max's teacher wouldn't be coming back.
Nuts.
Now I have to reintroduce myself and bring up Max's needs with a new teacher. I'm lucky that Max has become the darling of the office staff (he sometimes dances for them when he goes in to get his enzymes). They look out for him and very very conscientious about his enzymes. Max too is very careful about such things and does not hesitate to speak up for himself. I just wish it wasn't happening.
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