Section 504

Oh, time to blog again.  I am stressed.

I have been trying to get a 504 plan in place for Wesley for over a month.  Because of his life threatening allergy to milk, he is eligible to have this plan written out so that the school staff will have a guide of what is acceptable and what is not so that his life is not in danger and so that he can fully participate in school activities.  I can include things like sitting at a lunch table with other kids as long as they don’t have milk, and cleaning off the table with clean soap and hot water before he sits down.  Also, not using his allergen in the classroom as a teaching tool, washing hands after eating and things like that.  If they don’t abide by the plan, their government funding could be cut.

I am sure I am already starting out to be a major pain before the first day of school is even here, but I told the guidance counselor, Mrs. Powell, what needed to be done back in the spring when I preregistered Wesley for Kindergarten.   This summer, I called the special education coordinator because she is who would help me to get this going.  It was her last day so she couldn’t help me.  She resigned!  They have yet to hire a replacement.  I have called back to the board of education twice a week since then and they still have no one.

Yesterday was Wesley’s kindergarten screening.  I have been pretty calm up until then.  I talked to his guidance counselor while he was being tested, and she informed me that the school is under construction, people are on vacation, and she wasn’t going to tell me who Wesley’s teacher will be until the Friday before school starts.  (It starts the following Wednesday.)  Then, on top of that, she told me that they were not having an open house this year, and there would be no way for me to talk to his teacher until the first day of school!

What the crap?!?

She said she would tell the school nurse.  I do want the school nurse to know, but she isn’t the one who will be with my child all day.  I just never imagined that it would be this difficult to get some cooperation with such a serious issue.

So, not only is our 504 plan not even started, but she wanted me to send him to school without educating his teacher about his allergies.  Yesterday, my day was ruined after that.  It was miserable.  I didn’t know really what to do.  I did as much research as I could and I was intending to talk to the superintendent today, but in all my furor, I woke up this morning at 4:00.  I decided to email the guidance counselor and explain my situation.

I don’t want to be a pain in the butt.  I want to be a HUGE part of Wesley’s education.  I want to help out at school and I want his teachers to like me.  I don’t want to start out on the wrong foot, but what am I to do?  I am not going to risk his life!   I really didn’t want Wes to miss his first day or week of school.  It would be such an injustice.

I know that some people whose children have never had allergies really just don’t understand why I would not send Wes to school until things are fixed.  But Wesley’s life is more important to me than anything.  I absolutely refuse to risk it.  I can’t send him in there with a lunch room full of milk cartons and kindergartners without first explaining some things to the people taking care of him.

Today, I feel a lot better, but still freaking out.  Mrs. Powell emailed me back and said that she would arrange for the 504 meeting the day before school starts.  That is much later than I would like it to be, but atleast it is getting done.

I have all my stuff printed out.  I just need to get his doctor to sign.  I’m hoping that was the worst of it.

Whew, feeling better already!

Summertime

Wesley’s summer has been very eventful so far.  It seems like it is going by so fast.  Too fast.  In one month, he will start kindergarten.  That makes his Mamma’s heart break.

We have tried to stay busy and have fun before school starts.  I bought us season tickets to the water park and we have been going once or twice a week.  We have traveled to Indiana to see our cousins, then to Cincinnati for a NephCure walk, then to Johnson City, Tennessee for our convention.  All back to back.  It feels good to finally be home and not traveling.

My most fond memories are of summers when my cousins would come visit.  We would have the best times playing all day, then staying up late catching lightning bugs and looking at the stars.  Then we would go to bed, wake up and do it all over again.  I want that for Wesley too.  He has lots of cousins and he loves them all.  We have gotten together with them a few times this year.  It seems the same as it was for me when I was little.  Even though they only see one another occasionally, they are best buds when they get together.  It’s like they were never apart.

This summer, with cousins (and friends as close as cousins) we have picked strawberries, went to the fair, swam, hiked, learned to shoot a bow, dug in the dirt, gone to the drive-in, caught lightning bugs, cooked out, roasted marshmallows and got a few boo-boos.

I would call that a good summer for a five year old boy.

The best news is that Wesley has been in remission for ten months!  It really eases the worries.

It’s not over yet.  We still have time for more fun.  As a Mommy, this has been my best summer yet!

Summer Fun

Mouse In The House

Last night we found our cats running down the hall batting a dead mouse back and forth.  Gross!

Well, thankfully it was dead.  I was happy to know that my cats know how to take care of business… and hopeful that there were no more of those cute little critters running around my house.

We came home tonight and Wes was eating a snack while I read him a story.  I heard a rustle in the egg noodle bag.  Yes, it was another mouse.  Yes, I threw away everything open on my counter.

So, the boy decided to trap this mouse.  He came up with a plan fast.

Image

                          ^^  (The Plan) ^^

When I asked him how is the cat going to get out to kill the mouse, he replied, “I will open it really fast when I see the mouse coming”
Notice the half peanut butter sandwich to draw the mouse to the trap.

I suppose my child will stand here all night until he catches his mouse!

Food Allergies. Maybe No More?

I can’t find the switch to turn my brain off.  It is 4:30 a.m. and I am still wide awake.  Here is what I am thinking:

Finally, after four very long years, there is a possibility that Wesley may have outgrown some or all of his food allergies.  We have been waiting to get all of the immunosuppressants out of his system so that he can be tested.

It really and truly has always felt like this day would never come.

Last week I called his allergist and made an appointment for Monday.  I talked to her later on Friday and she said if we could get blood work done that day, he could do one oral food challenge at his appointment if the allergy “markers” weren’t there.

Oh, I was SO excited.  I was at work, but I immediately made arrangements to take the kid to get blood work.  Come to find out, it has to be sent out of town and we won’t know until Wednesday.  So, our appointment will be Wednesday.

It is just such a good thing to think about.  Wow, we have been so consumed with every bite that our kid eats and even what we eat for so long, it is nice to ponder that maybe, just maybe our kid can eat like everybody else’s kid does.  People won’t think we are overreacting.  When we go to restaurants we won’t have to ask for the manager and tell him fifteen times that our kid could die if he doesn’t cook the food the way we tell him to.  If we eat cereal with real milk, we won’t have to wash our mouth and quarantine everything that touched the milk. In fact, it is very rare that we even own cow’s milk anymore.  I have tried several times to completely ban it from the house.  We have probably only bought eggs about five times in these last four years because it is so scary to make sure all the egg is cleaned off even before we put it in the dishwasher.

We realized that Wesley had a problem very early.  In the NICU, he couldn’t nurse so I pumped.  They gave him my milk, but continued to push me to add formula so that he would grow faster.  I refused for several weeks until they finally made me feel like I was starving my child. (Which I definitely wasn’t.)  So, I gave the okay to mix formula in.  It made him very sick.  He got NEC and was npo for seven days.  Then THEY were starving my child.  Err, makes me mad to even think about it.

Back on subject..

So after he came home and continued to grow, we did what a lot of parents do.  He was probably six months old and we were eating ice cream.  We put a little in his mouth to see if he liked it.  Not long after, he had a rash around his mouth.  Not a big deal.  I never suspected a serious allergy and we moved on with our life.

In the next few months he would get a small rash around his mouth occasionally after eating.  It concerned me, but not much because the rash was the only symptom.  Then, one night we had friends over and ordered pizza.  Wesley was just a little over a year old and had a couple of little teeth.  I gave him a pizza crust to chew on.  About an hour later, his face was crazy swollen.  His eyes almost swelled shut.  He was wheezing.

I was a big dummy.  He was having an anaphylactic reaction.  I really didn’t think that could happen unless you had a nut allergy.  We called the on call pediatrician.  It was about 11:00 at night.  He told me he was having an allergic reaction, go straight to the emergency room.   I still wasn’t even that worried about it.  I really didn’t know how serious it was.  Well, his breathing kept getting worse and his lips were turning blue by the time we got there.  The next week, he was allergy tested and here we are.

Milk, soy and egg.

Once, he drank some of my iced coffee through a straw.  It had cream in it.  He started reacting and I had to use the EpiPen.  Not long after this, he had a cup of milk spilled on him.  On his body, everywhere the milk had touched, (which was most of his body) looked like it had been burned.  Another ER visit.  And that wasn’t even from ingesting it.  It was skin contact, and that was the beginning of the Arnett house milk ban.

Nevertheless, I have been very diligent to keep my child safe from these foods that could kill him.

So, all of these nice thoughts have been going through my head.  I keep thinking of all the things that he has never had and how I want him to have them all.  I keep imagining what if he has only outgrown one allergen.  It would open up a whole new menu for our kid.  I am just seriously overjoyed.

But then, I think, how can this even be possible.  How can something so deadly just be outgrown?   Just like that?  Apparently it happens.  In fact, by the time children are five, and Wesley is, they have a 90% chance of being allergy free.  Except for peanuts.  Most of the time peanut allergies are for life.  Thankfully, Wes isn’t allergic to peanuts.

Wesley is pretty dern ecstatic about this allergy test too.  After he had rituximab, we started to realize that if he could just stay in remission long enough, he would be able to be tested.  I started talking about it to him about a month ago.  He talks about it very often.  We go to the store and read the ingredients and daydream of what he could eat if only he just outgrew soy.  He has been talking about having his allergy test since I told him.

I was at work when I found out he needed blood work on Friday.  I called the house to tell my mother-in-law to take him to the lab.  I talked to Wesley and he normally hates to know he is getting blood work.  He was SO happy!

But, little did I know that my kid is just as stressed out about this as me, maybe even more so.  Last night we were going to sleep and he was talking a lot.  Then he kind of got sad and tears were welling up in his eyes.  He asked me how did I know that he wouldn’t die when we do the food challenge.  I told him his doctor would be very certain that it was safe before we try it.  I reminded him how we did the peanut challenge.  I told him if he had a reaction, we have medicine and he wouldn’t die.  He cried.

And I think, this is all he has ever known.  He is an awesome self-advocate.  I have taught him how serious food allergies are.  How scared my baby must to go against every thing he has been taught.

Boy does it break my heart that my little boy, who should be carefree, is worrying about such a thing.  He has been through so much in his short little five years.  He doesn’t even realize it.  It is all just normal to him….  Until we tell him he can eat an allergen.

Well, that is yet to be seen.  We have to get the blood work back first.

So this is what I am thinking and why I am still awake at the time that most people are just waking up from their good night’s sleep.

The Flu

Monday, we went to Lexington with Brad’s mom to take the niece and nephew back to their mamma.  We met at the mall and shopped some.  Wesley started feeling bad about an hour later and said his legs were hurting and he wanted to be carried.  Then my mother in law said that Wesley was feeling hot.   He was so whiney and hurting.

After what seemed like forever, I finally made my way to Walmart to get a thermometer.   I wanted to check him while we were there because I knew if it was very high, we could very well end up right back there in the hospital.  After he had his rituximab infusions, the doctor said not to mess around with a fever.  A fever is an emergency.   I took his temperature and it was under 100.  We went on home and he went to bed early. 

Tuesday was New Year’s.  The boy was still running a low-grade fever and seemed weak, but no doctors were open and his temperature was still under 101.  That night, it got higher so I paged his nephrologist.  He said to take him to his pediatrician in the morning.  At that point, me and Brad were coming down with it too.  We all had fevers and our bodies ached. 

So Wednesday morning, we were a mess.  I knew I had to take the boy to the doctor.  I got up, called for an appointment and took a shower.  We got there and waited.  Wesley was on the table playing a game and I just got up there and laid beside him.  No position I was in made me comfortable. 

The nurse swabbed his throat and his nose.  Fifteen minutes later, the doctor walked in with an informational paper and said the flu test was positive.   She prescribed him Tamiflu and sent us home to drink plenty of liquids.  We all stayed in bed for the rest of the day except I had to go to the pharmacy to get the Tamiflu. 

That night was rough.  We were all so miserable.  Every time I coughed, I felt like a cat coughing up a hairball.  It was gagging me.  I threw up on the wall.  Not much is worse than cleaning up your own vomit. 

I went to my doctor the next day because of my cough.  Every time I coughed, even now still, I can’t get control over it.  My flu test was positive as well, despite having the flu shot this fall.  I could’ve saved a $35 copay and told him that on the phone if he would just call me in something for cough.   He prescribed me cough syrup and sent me home to drink plenty of liquids.

Fortunately, Wesley is getting better.  No relapse.  But now that he is better, there is nobody to entertain the poor little guy.  He has watched every episode of Phineas and Ferb ever made.  Now he is on to Garfield and Pocoyo.   He has been in here every 15 minutes happily jumping on the bed causing our heads to throb.  Poor kid.  The first one to get better always gets the bad end of the deal. 

Me and Brad are cold and sweaty and feverish.  Yesterday Brad said that our sheets must be teeming with all sorts of nasty germs.  I washed them.  I am sure they need it again, maybe when this goes away. 

On a positive note, this is the most time we have spent together as a family in a very long time.

I am so hoping that the morning will be better.  Maybe next week I can write a much more interesting story when I am not under the influence of cough syrup and cold medicine.   Until then, stay far away from us.  You do not want this!

Welcome To Holland

I have an online support group that I use for Wesley’s rare kidney disease.  One of my fellow support groupers just shared this wonderful poem.  It brought tears to my eyes.  It is a wonderful illustration of how I feel about Wesley.  

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” 

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”

Bedroom Remodel

We have an older house.  It was built in the 1960’s.  One of the things that I really like about it is that all the floors other than the kitchen and bathrooms are hardwood.  It is the old stuff.  I love it.  Dings, dents and all.

The people who lived here before us must have thought it to be a good idea to cover the bedrooms in carpet.  Apparently at one point, the whole house was carpeted, including one of the bathrooms.  When we moved in, only the bedrooms had carpet.  I promptly removed it, except in the master bedroom, because Brad (love his heart) really likes carpet.  ????  I know, right?  Carpet is so gross.

Well, our bedroom carpet has seen it all in the 7 years that we have lived here.  (and probably years before that)  It was getting bad.  One time, Coke was on sale, like really cheap.  I thought it was a good idea to stock up.  I stored a few cases under the bed.  That, in fact, was a bad idea.  For some reason one can exploded and the carpet was never the same again.  Then, of course along came a kid and the rest is history.  Bottom line, I have been disgusted to walk on my carpet without feet covering for some time now.  I have threatened to pull it up, only to end up in a fight with my husband.

My wonderful Granny called me last week and told me that she found some FREE carpet for me!  It was new and from a duplex that had been for sale, then when it sold the people ripped it up and put down hard wood floors.  (The stuff that Brad wants covered up.. Argh!).  I figured anything would be better than what we had.

So, my daddy said he would help me lay the carpet.  My mom came over on Monday and helped me move everything out of the bedroom.  Then, we started tearing the old carpet out.  Oh, it was gross.  Have you ever looked under carpet?  It took all day Monday to get all the work done.  Tuesday was put it all back together day, or so I thought.

I decided to paint the walls before laying the carpet.  It took 4 trips to Lowe’s before I finally got the paint color right, kind of.  First it was light gray, then dark gray.. then for some reason purple.  I finally got tired and decided to stick with the purple.  I got most of the room painted late Tuesday night.  I was so exhausted from running around with a kid all day trying to make paint color decisions that I was starting to get delusional.  Then, as I was painting, I realized that if I had a little girl, I would have to make my room hers.  It was starting to look like a little girl’s princess room.  After I got mostly finished, I decided that I didn’t care what it looked like, I was done changing colors.  I was starting to lose square footage, and my sanity.

Wednesday, I started to finish it up.  After looking at the princess purple for so long, I thought it would be a good idea to go back and get some darker purple paint for just one wall.  It made it look a little less like Ariel was moving in.

My dad came and helped lay the carpet.  Thursday, I was finishing up and moving stuff back in.  (still not done)  But finally I have accepted the paint color.  I am sure that if I had of had time to contemplate it, I could have chosen a better color, but it is definitely better than the crazy bright red that I had before.

So… after ALL that, and a crazy first of the month day at The Medicine Shoppe, I came home, ate some pizza and watched a movie.  During the movie, which didn’t at all interest a five-year old boy, my son broke his whoopie cushion and his world came crashing down.  It was so pitiful.  You could see the sorrow in his little eyes.  He LOVES that whoopie cushion.  I assured him that we could go to the dollar store in the morning and get him a new one.

Wesley has a new little thing that he does.  I am a big “list” person.  I have to make lists or I don’t remember what I am supposed to do next.  Well, he has caught on.  Whenever there is something that is important to him that has to wait, he brings me paper and pen and tells me what to write.

I had to pause the movie to write, “Let’s not forget to buy a whoopie cushion at the dollar store.”  Which was fine.  Except, because we are out of tape from all of his many lists… He GLUED it to my newly painted purple wall.  I didn’t know about it because I was trying to watch a movie.  He came and told me and I tried not to flip out.  His excuse: no tape.  I know it was completely innocent.  I couldn’t yell at the little guy, but boy did it send my blood pressure up.  I could feel my heart beating in my forehead.

I calmly told him that he is not allowed to even touch any wall that is purple.  So, I just wonder, is it worth trying to make your house nice when you have a kid?  I see other people who do it.  It must not be that hard.  Maybe I am weak or maybe my kid is just a little extra strong; maybe it is a little of both.  Who knows.

I do know that next time, I will work an extra day at work and hire it done!  Maybe I should just wait till the kid is grown.

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