Archive for October, 2010

A totally off topic post

I really just have to get it off my chest.

Tomorrow is the last school day before Halloween.  Our school is one of the few in the area that still allows costumes in the school.  Many of the schools are having a “Fall Frolic” sort of party, but nothing related to Halloween is allowed.  The elementary school MY girls go to  is having a Fall Frolic, and allowing SOME of the children to dress up.  Yep…that’s right…SOME of them.  The younger children (kindergarten through 2nd grade) are allowed to dress up.

Grades 3 and 4 (the upper grades in the school) are not being allowed to dress up.  They are invited to the Fall Frolic, where they are going to go outside and watch the younger children parade, and then they are invited to enjoy the cookies and juice with the rest of the children.

I’m actually rather upset.  I’ve thought it was a ridiculous policy when Abby was in the younger grades, and still allowed to wear a costume.  Last year, the first year that Abby was NOT allowed to costume, I approached the principal to ask WHY they had the policy, and to request they rethink it.

This year, when I discovered the policy had not changed, I emailed the principal about possibly rethinking it before Friday.  I got back a rather condescending email about how they are now allowing all the children to partake in cookies and juice, but that no, the older children are not allowed to dress up.

I’m irritated because by necessity,  we are asking our children to grow up so fast.  They are doing things in school about 2 years before I remember covering them.  We ask our Kindergarteners to go to school full days, some schools have even eliminated the rest period.  Our kids are expected to be able to do so much at the end of each year.  We don’t allow them to be CHILDREN.

I don’t understand why we are taking this little “right” of childhood away from them before they are even out of elementary school.  If she was to tell me “we aren’t allowing grades 3 and 4 to dress up because we don’t want to take instructional time out of the classroom” then I would be irritated, but I would understand it.  There are only so many instructional hours in the school year.  However, that’s not the case.  They are all leaving the classroom to watch the parade…and then to have cookies and juice…then, when they get BACK to the classroom, they are going to be allowed to hand out treats, if they brought them, then, they can each choose 3 treats to eat…so while it’s not a big party…it’s still not instructional time.  What would it hurt to take an extra 20 minutes, 10 on each side, to let the kids put on a costume and be in a parade.

I really think I’m going to suggest that if ALL the children can’t dress up, that next year, they make it that NONE of the children can dress up. (I’ll still have a child in the school, one who is of dressing up age…so I’m not waiting until my kid is in 3rd grade to make the suggestion)

I have a huge problem with adults (teachers, administration, and parents) who expect children to grow up before they have to.  I can’t stand teachers of younger grades who make comments like “well, it’s their responsibility”  when clearly, it’s not something that a kindergartener should be responsible for.  I have a huge problem with parents who allow their first and second graders to dress like a hooker on a corner somewhere, with a miniskirt and thigh high boots, and I have a problem when the principal won’t let our kids do something fun.   I really would rather that NO ONE be allowed to dress up, than for any other parents have to try to answer the question…”How come we can’t dress up…it’s not fair that the little kids get to, and we don’t…WHY did Mrs. T make that rule?”  I don’t have a good answer…and my kid wasn’t the only kid asking…at least last year she wasn’t.  I’m sorry….but “Gee, Mrs. Capalbo…I don’t KNOW why we don’t allow the older children to dress up….it’s just how it’s always been done.” isn’t an acceptable answer. (I just tell Abby that I’m sorry, but Mrs. T is crazy…and it’s not fair that she got a school with a crazy principal…but she did, and hopefully, the middle school, Jr. High and HS don’t have crazy principals too.

SO, yet again, I’m going to be “that mom” and make an issue out of it.

An interesting opportunity

My brother’s office has a subscription to a service that attempts to connect those who write articles with people that they might interview to help them with those articles.

Yesterday, my brother emailed me with the email of a woman who is looking to interview mothers who, in the past 2 years, have had to advocate for their child to get either a medical diagnosis or proper medical treatment for their child.

I shot off an email to the woman, detailing our entire journey.  I have no idea if anything will come from it, our journey goes back a whole lot longer than two years.  However, if I can help even ONE parent have the confidence they need to advocate for their child (or themselves) it will be worth it.

I’ll keep y’all posted as to whether I get an email or a call.

Just a random happy observation

Mariella RAN from the bus to the house (maybe 200 feet) without getting winded. This is the first time in over a month (since we decreased the Symbi dose) Of course, she was a little out of breath…but not GASPING like I’ve been seeing for so long.

Nothing else really new to report here…but I was happy to see my munchkin running again.

An overdue update from Clinic

So, we got there…only a little late.

We went right in to CT, that was no big deal…it takes longer to set up the scan than it does to run the actual test.  Then we headed up to clinic.  We only waited in the waiting room for a few minutes, and we were brought into the room.

Pulmonology headed in first.  We talked about her current infection, and her flare from a couple weeks ago.  We discussed her current medicine regiment.  Then she had Mariella do PFT’s.  She rocked them, which she always does.  Even with crappy lungs.  The pulmonologist also didn’t hear anything, which made me have to explain that what doctors hear in her lungs doesn’t alway tell the whole story of what is going ON in her lungs.  She didn’t change anything, and honestly, I wouldn’t have without checking with Dr. Duda first.

Then came Gastro.  The doctor we saw last month has moved to Paris for a couple years with his wife.  I have faith that the doctor that is covering for him while he’s gone is going to take good care of Mariella.  She was very nice, and listened to us.  She dealt very well with Mariella, had a good rapport with her.  We WANTED to have Mariella start taking the erythromycin in a pill form…but she’s not heavy enough to do that yet…so we’re stuck with liquid for now.

She didn’t grow any, which we knew and didn’t gain any weight, which we also knew.

Finally Dr. Hartnick came in.  He is the ENT, and also the founder and head of the Airway, Voice and Swallow Center.  We discussed the CT.  It showed inflammation.  Not surprising, since she has an active infection.  Then we discussed whether or not we thought the current treatment was working.  We do.  No one was expecting to go from crappy to 100% better in a month, but I see enough improvement to think that we are going to see further improvement.  We all agreed that we aren’t going to try anything else, that she doesn’t need a stronger medication, nor do we need to try to do anything to the lungs, before we give the medicine time to really do it’s job.  If we find that her lungs don’t show any improvement when we get the GP and GERD under control, then we might reconsider that.  We also decided it’s not necessary to do another set of scopes or an impedance study.  It’s clear she has reflux, no matter what the test shows, and the doctors agree with us.

So, we’re in a happy holding pattern.  We’re going to give the erythromycin a chance to work, and then, if we need to, we can make other choices.

Because it’s good to find humo(u)r where you can…

I made the pharmacist spit out her drink today.

Yes, I DO think that’s funny.  Hysterical, actually.

They know me at the pharmacy.  Quite well, actually.  You can’t go somewhere several times a month, sometimes several times a week without building up a relationship with them.  They know Mariella, and always ask about her.  They’ve been with us from the beginning.

I had to pick up her albuterol for her neb.  We were down to the last 4 neb things (what ARE those plastic vial things called, anyway?) which would get us through today, basically.  I’d been there 2 weeks ago for the prednisone and zythromycin, and again on Thursday for the Bactrim…so they all know Mariella is feeling poorly again.

I asked for the prescription, and put the package of spice drops I decided I wanted on the counter.  The guy rang up the albuterol, then picked up the spice drops and said, “here’s the real medicine…” to which I replied, “yep, for MOMMY.”  He raised his eyebrow and smirked at me a little, not in a rude way…but he was amused, so I said….”Well, I don’t drink.” (completely deadpan)

The pharmacist was behind the computer, and she had just taken a drink from her water bottle.  She laughed so hard at that, that she spit out her mouthful of water, all over the computer. (thank goodness she wasn’t counting pills or anything.)

I’ll tell you, that, right there…worth the price of admission.

5 good days

That’s what we got from the increase of Symbicort and the course of prednisone and Zythromycin.  FIVE good days.

THEN, it seemed like all hell broke lose, and Mariella hit the wall…coughing, wheezing, tight, basically looking and feeling like total crap.

Wednesday night, the pulmonologist’s office called with a cancellation (when I had made her follow up appointment for November 12, I really felt like it was too far away, so I asked to be put on the cancellation list) and we took it, I still had to work on Thursday, so Rob brought her.  She had had such a horrible night, I was going to let her stay home anyway.  I left a list of things that needed to be asked, and I was kind of glad that Dr. D was going to get to see Mariella sick.  Normally, he doesn’t see her sick.  As fabulous an office as it is, they don’t have dedicated “sick” visits times.  Usually, when Mariella is actively flaring, we see the pediatrician first, and if they don’t know what to do, we THEN get into the pulmo…but that’s rare.

Apparently, Mariella was wheezing pretty heavily…Rob was texting me pretty constantly asking questions.  Thankfully, with an explanation, the director of the school, and the teachers I work with are ok with me texting Rob back.  Dr. D did a treatment in the office, and took a sputum culture.  I’m not expecting it to grow anything but staph.  She nearly always grows staph.  Then he sent her down for a chest series and a sinus series of X-Rays.

Apparently, she has a sinus infection on the right side.  I find this extremely interesting, since she didn’t even have any cold symptoms.  A runny nose for ONE day…IF that.  They didn’t tell Rob what the chest films looked like.

Later that afternoon, Dr. D called me.  He had called Dr. H, at the Airway, Voice and Swallow Center, and they agreed that Mariella needs to have a sinus CT scan done. (I’m really not sure why…this is the first sinus infection she’s ever had, so I really wonder what he saw in the X-Ray)  I asked about the chest films, and Dr. D said “well, they were a little muddy.”  I asked what “muddy” meant, and he said, “well, she has a white out again.”  Basically, her lungs are totally occluded with mucus again.   I’m not sure if we’re have lung CT’s done on Tuesday or not.

Tuesday is Clinic day, so we’ll get there, and have the CT done…then head up for the appointment.  I’ll be able to report that Mariella has been telling me that there are times that her tummy doesn’t even hurt as much.  I don’t know if that means she’s pain FREE, but she’s definitely noticing a difference.   We’re going to tell the gastro that Mariella is ready to take the erythromycin in a pill form…and I’ll be glad to get rid of the inconvenient liquid.

I’m really not sure if she’s better…she’s not coughing as much at night, but her breathing is horrible over night.  She’s coughing pretty constantly during the day.  The slightest exertion sets her off…and she’s totally exhausted.  I’m hoping that the pulmo doesn’t add another course of prednisone to the mix…but of course, if she does, she does.

I was a horrible mommy today.  We went to Central Mass to visit with Rob’s family.  We went apple picking with his brother’s and their families, then we had a barbecue.  We were running late, so I gave Mariella her medicine before we got in the car, because we were going to get them donuts on the way.  Bactrim really just SHOULDN’T be taken on an empty stomach, apparently.  We got in the car, got her donut…she ate it.  About 15 minutes later, she was throwing it up.  Thank goodness for the bucket in the car.  She didn’t make a mess…and said she felt better…I got in the back and she slept while I held her head.  We parked at the apple orchard, and all of a sudden, she threw up again…and we weren’t prepared for the second blow (there’s NEVER a second blow) so we didn’t have the bucket ready…but she still only made a tiny mess.  THEN she proceeded to chow down on apples at the apple orchard.  She ate fairly well at the cookout.  AND was fine, all the way home.  I really felt pretty terrible…but, live and learn.

Hopefully, the CT scan on Tuesday doesn’t give us any terrible news.  These are the tests I don’t WANT to have anything.  Now that we know what’s wrong with her, I don’t want any more tests showing problems.

What is “normal”?

I don’t often post about Abby…but something happened yesterday that got me thinking a lot about what is normal, and what isn’t.

A topic about ADD/ADHD came up on my parenting board.  One of the mom’s is concerned about her daughter, and another mom posted an article of symptoms of ADD and ADHD in girls.  A THIRD mom posted that “she could fit herself into any one of those categories at some point in time or another.”  So I got to thinking about that.

The third mom talked about having 3 or more sewing projects going at one time…and they would get finished when they got finished.  I guess I think that’s pretty normal.  Now, I’ll use ME as an example.  I often will have several CHORES going…because I get distracted while I’m cleaning my half bath (you know…a sink and a toilet…not to hard to clean in one shot) and start doing something else, when I get distracted and start something else, and before you know it, my entire house is partially clean, but not one single thing is FULLY cleaned.  THAT doesn’t feel normal to me.  Or a child who is so distracted by just about everything, that they can’t finish one worksheet…all day long, not just occasionally, that’s when it becomes not “normal.”

She talked about running off and forgetting her purse…or as a child, forgetting her boots when she left school.  THAT to me is normal.  My friend’s story about her daughter coming home from school with only one shoe. (and no boots, there were no boots involved in the story.)  THAT isn’t so normal.

In the space of writing this post…I was just gone for a least 20 minutes.  I stopped to do something, and completely forgot that I was writing.  Normal for something like that to happen occasionally.  I’m embarrassed to admit how many times something like that happens to me.  Twenty minutes…I don’t think it’s ever been that FAST before.

Racing thoughts?  Sure, everyone has times when they can’t shut their brain off.  However, my brain, literally, never shuts off.  It’s like being in a crowded lecture hall before class starts.  I have a constant buzz going through my head.  Thoughts then “cross my mind” and I have to expend time and energy to decide whether it’s something I need to focus on.  Was I remembering that I forgot to turn off the oven, or was I remembering and reliving the embarrassing conversation I had with someone 7 years ago.  Yep, I do that…I don’t seem to ever really “forget” anything, AND, I get anxious and sick to my stomach thinking about them, as if they happened 10 minutes ago.

I feel like I have to justify my decision (for lack of a better word) to put Abby on Adderall.  For some reason, ADD and ADHD have been classified as character flaws, rather than a medical diagnosis.  Not only that, it’s considered a character flaw for the PARENT as well as the child…or maybe rather than the child.  As if we parents don’t beat ourselves up enough about the genetic Molotov Cocktail we’ve passed on to our children.  If it turns out that our children need medication to function normally in school and at home, it’s because WE don’t want to parent them.  It’s because WE’RE too lazy to take the time to TEACH our children how to function.

I didn’t realize we could TEACH the brain to use neurotransmitters correctly.  It’s like saying it’s time to teach the Pancreas to use insulin correctly.  Sorry, Sally…your pancreas doesn’t work correctly, but we’re going brow beat and bully it into submission.  You won’t need insulin…you just need to teach it to work.  (it’s been pointed out to me that apparently, my comparison of psychiatric meds to insulin isn’t a valid one, because no one is going to DIE because they didn’t take ADHD medication…but, oh well…I’m going to continue to use it)  Or, perhaps I can TEACH Mariella’s stomach to move food at the proper rate…then she won’t need medication, or teach her lungs to move air efficiently.  No one seems to question my “decision” to medicate her PHYSICAL ailments, and yet people think it’s OK to not only question my “decision” to treat Abby’s ADHD (and her depression, but that’s neither here, nor there) but to demean me, question my desire to parent, and basically make me feel like crap. (because I don’t do that to myself, or anything)

So…what IS normal?  Every spring, I have a certain conversation with my girls.  We have several tulips (I think) that grow in a most inopportune spot of our lawn.  Abby gets mad because we mow them down…telling me that they are flowers.  I tell her that any flower that grows where you don’t want it is a weed.  It’s not that it’s not a pretty flower…but if it’s where you don’t want it…it either needs to be moved to where you want it, or it gets mowed over.

So, while most people have symptoms of ADD and ADHD at some points in their lives…I’d say that’s pretty normal…but when the symptoms begin to impair function, then it becomes not normal.  Someone might be *clinically* quite severely affected by ADD or ADHD…but if it doesn’t impair their life or ability to function…then it’s not a “disability.”  It’s normal FOR THEM.  I’d be quite happy for them, that they were able to learn coping techniques, etc.  Not everyone can do that, and it’s not fair to say that they should have to.

Anyway…I’m afraid I’ve gotten rambley and probably off topic.  I’ve been distracted and torn away and come back several times.  I’m not sure it even makes sense.  I had to get it off my chest.