I've been quiet lately.

I really haven't had much to talk about. We're deep in the throes of the final days of school. In fact, tomorrow is the last day. It's a half day, so the girls will be home at lunch time. I certainly hope that Mariella doesn't need rescue in the morning, since all her meds are at home. I think I'll give her a neb before school, just to be sure.

As for the asthma front, it's pretty much the same. Mariella is barely eating again, and a wise person pointed out to me a few days ago that it's much easier to breathe when your stomach is empty. She's been asking for rescue...either by puffer or neb...nearly every day. It's gotten hot, it's gotten humid, and we've been under air quality warnings for a week now. We try to stay indoors, but even short jaunts outside...like waiting for the bus, or walking from the mall to the car has her gasping for air. Today she complained of "feeling funny in her chest" I asked if it was pain or just feeling funny...and she said it's not pain. I gave her 2 puffs, and she reported that the funny feeling started to go away.

It often amazes people that Mariella will differentiate whether she needs rescue by puffer or by nebulizer. If it's not too bad, she will ask for a puffer. If she's really tight, or is really coughing, she asks for the neb. I guess it's good that she does...I just hate that she has to at all.

As for O2 stats, she normally runs about 95 or 96, which is a change from her norm, where she was running 100% even with fully occluded lungs, where the doc was surprised I hadn't needed to bring her to the ER...but, she isn't typically desatting, though she's done that too...our lowest recorded is 79%. Treatments bring her reading up to normal, so I try not to panic. It's just another mystery...as we don't know WHY it's happening. We keep getting things that tell us what it ISN'T, and not what it IS. Even her doctors have stopped calling it "asthma" though they don't really have a name for what it IS...The pulmo calls it "IT" she's got "IT" we just don't know what "IT" is.

So, half a day of school left, a short week of vacation...then the girls are off to 2 weeks of summer camp. Mariella hated it last year...but asked to go again...we'll see how she does this year...if she hates it again, it will probably be her last year of camp.

"That Mom"

I try very hard not to be "that mom." The mom who is always calling the school, who seems to want special privileges for her child/ren. However, this year, I seem to be becoming "that mom."

It started with me approaching the principal to talk about setting up accommodations for Abby for 4th grade, or at least letting me know who her teacher would be, so I could talk to her face to face about Abby's challenges in the classroom, and the THREE things I think it will take for her to be totally successful, both in the classroom, and in the rest of her day next year. Abby does VERY well in school. She loves school, and she works VERY hard, both academically and to control herself during the day. She expends A LOT of energy, just to behave. So when the day is over, and she gets home, she is tired, and she is DONE with behaving. She just CAN'T anymore. I accept that, and we roll with it, for the most part. However, I think there are a couple of things that the teacher can do next year, that will make it so she doesn't have to expend quite so much energy just behaving. The principal shot me down, with the statement of, "we only have one child in the school with ADHD severe enough for accommodations, and unless Abigayle is failing, it won't even be considered." Legally, she really can't say that. As a parent, I always have the right to request a 504 meeting. However, I have to work there occasionally, and I would rather NOT have my work environment be stressed and strained. Before anyone says, "it's your child's education, you should push for what she needs, no matter what!" I can say with absolute assuredness that Abby will be fine, academically, no matter what. She is not going to fail 4th grade if I don't get the accommodations I want in place. So, I'm torn as to what to do, and I'm more than a little irritated with the principal. (as an aside, every teacher I've talked to about this thinks the principal is being totally out of line.) As for the "accommodations" I'm looking for...allowing her to chew gum...an accepted accommodation to help with the impulsive talking out that is common in ADHD; the ability to stand while doing seat work; and to make sure that her instructional seat is in front of the teacher.

Secondly, today is Field Day. I've never heard of a school NOT wanting parent volunteers at Field Day, but our school is notorious for not wanting parent volunteers, or parents in the school at all...for whatever reason. I think it's bizarre, but I've never found it particularly CONCERNING, until now. I emailed the kindergarten teacher, and asked if I could please be there, with Mariella's medication. It would make ME more comfortable as a parent. I even degraded myself, saying that I knew I was being an over protective parent. I got an email back stating that "I could come and be on the side lines, but Mrs. T really doesn't want parents hanging around and helping." I'll say that it's not that I don't trust the school nurse, I just trust ME more. I don't expect the teachers to read Mariella's subtle signs of distress. I'm a little afraid that if she's playing and having fun, she might not listen to her lungs as well as she normally does. We've been very successful in keeping her ER trips to a minimum, and have totally avoided emergency admissions...and I'd like to keep it that way. So, I know the principal isn't happy with me, but really, when it comes to my kids health, I don't really care.

So, I'm "that mom." The mom I always said I wouldn't be. The one who seems to want special privileges for my kids. However, I don't think they are special...or even privileges. I think that my children deserve the best they can get for their education, and the best they can get for their health, and if I have to fight people for that, well, that's what I'm going to do.

June's 12 of 12...well, as close to 12 as I could get...

So, these are in no particular order of the day. My friends son turned 7 yesterday, today was his party.

burgers on the grill

this morning, waiting for the party...the girls played...this is how they cleaned up.

Loot from the pinata

Mariella playing with her baby friend

BOUNCE!!

Cupcake Cake

Birthday cake

Snacks

Rain before the party

Setting the tent up, hoping the rain stops.

Balloons!

Eh, I got 11...not too bad. Next month, I'll get all 12

Asthma Folks...help me out.

Mariella is back to coughing. She sounds clear...I'm not hearing any crackles or rales, I'm not hearing any wheezing. However, she is doing a weird breathing thing...if you've ever seen a show on TV where someone is on a vent...and they have a quick in/out breath with a pause...then another in/out with a pause, that's how she is breathing. Almost forced.

I DON'T know if she does it all the time in her sleep...since the "cat incident" all the bedroom doors are closed, so I've fired up the baby monitor again. If my bedroom door was open and her's was open, I could hear her well enough, with all the doors closed, I can't hear her at all. Her monitor is on the other side of the room, and I can still hear her...she breathes SO loud. (that ISN'T new)

I don't want to be looking for symptoms...so I'm just throwing it out there, to see if any of you do that. I don't notice that I do it, even when I'm flaring...but my asthma is different than hers. I guess I'll have to notice if she does it all the time, or if it's only at night.

Any thoughts? Should I be concerned? Is it just her breathing now, after having to work so hard for so long? Help

Long Night...

As I sort of suspected, but didn't want to believe...the extended fabulous period was most likely due to the prednisone effect. Mariella started "the cough" right at suppertime last night. Intermittent, but after all these years, I was fairly sure where it was going. By bedtime, she had asked for a treatment. I listened to her heavy breathing all night long. Of course, as is usual, she sleeps through it all (not well, she's restless as anything, but she's sleeping) I lay up, listening to her. As a result, we are both exhausted.

I'm not adding any of her "sick" protocol yet. I need to see where it goes from here. If it was just a bad night, then it was just a bad night, and we move on. If she totally craps out again...then we'll go from there. I'm hoping it was just a bad night.

Furthermore, she had a bunch or really good eating days...where I actually had to STOP her from eating, so that she wouldn't upset her stomach from overtaxing it...and this morning, she didn't eat anything. I'm hoping THAT isn't a trend.

One whole week...

We've gone one entire week with NO rescue. She isn't COUGH free, and she still complains of tightness occasionally, but when I ask if she needs a treatment, she always says no.

Her current treatment protocol is:

Symbicort: 2 puffs BID

Atrovent: 2 Puffs TID

QVar: 2 puffs BID

Prevacid: 15 mg BID

Align: 1 capsule every day

It appears to be working for right now. She is also one week off the prednisone, I'm not sure if that's why she's doing so great, but I'm not going to question it too much. Here's hoping for a nice long stretch of good breathing and open lungs.

Asthma Education Patch

Today was "asthma education patch" day at Girl Scouts. I think it went really well. It's kind of hard to "dumb it down" to a 6 and 7 year old level...but I think I did ok.

First, we talked about what Asthma is. Quite a few of the girls knew someone who has it, and a couple of the other girls in the troop also had asthma. (they were preemie twins, and have basically outgrown their lung issues. I'll bet they are still reactive, though)

Then, the girls got to play with straws with wrappers. They blew the paper off of the straws to show "working airways." Then they all squeezed the end of the straw and tried to breathe through it. This kind of showed them how the "tubes" in the lungs get tight when someone is having trouble with asthma.

After that, we talked about all of Mariella's stuff on the table. We talked about the fact that if Mariella is coughing and coughing and coughing that it doesn't mean she is SICK, and that she can't get THEM sick. We said that the machine wasn't anything to be scared of, and it just meant that Mariella was getting the medicine she needs to help her lungs work the right way, and that she will always be fine after she gets the medicine. We also talked about the ways we can keep ourselves healthy, and therefore helping to keep people like Mariella, with asthma, to stay healthy. (eating good foods, washing hands, coughing into their elbows...etc)

We covered that asthma isn't always coughing or wheezing. That some people have both, or just one...I was wheezing toward the end of the meeting, so they all got to hear a good wheeze. Mariella told them that sometimes she doesn't cough OR wheeze, that sometimes her chest just hurts or feels tight, and that's asthma too. That you can't always SEE that she's having trouble. We discussed that if the girls saw someone having trouble breathing, or if a friend told them that they were having trouble breathing, that they should always get an adult to help.

Finally, all the girls got to check their O2 level. Mariella got all excited about her 97% reading. Most girls were 99 or 100, and we talked about how different people had different numbers, and that it wasn't like a test.

I sent them home with pictures of lungs to color, and that was it. Hopefully, if Mariella needs a treatment or puffer at Scouts now, they won't be afraid. (or as they get older, if they go on a campout or other event, too) the 2 mom's that were there to help out told me I did a good job and kept it at their level...so I hope they got something out of it.