Archive for February, 2010

I WON’T freak out…

It’s probably nothing. In fact, I’m SURE it’s nothing…OK, I guess it’s that I HOPE it’s nothing. I’m trying not to freak out.

Mariella was sick two days ago. One and done. Fine the rest of the day. She ate well. Typical…we’ve been waiting for a good “blow”. I wasn’t concerned.

Until this morning…when she threw up again. Is two episodes in 2 days really a big deal? I don’t know…but when this whole thing started, she was throwing up every 2-3 days. I guess we’ll have to see what happens…I’m just not used to having her blow so close together anymore.

On a less stressful note…it has been fabulous to listen to the girls playing nicely all day. They really do miss one another when they are apart. They may not always get along, but the love they have for each other is SO very apparent.


Argh…Parents just don’t understand!!!

M is HOME!!! I LOVE, LOVE, LOVE that my parents are willing to take her for the week, but I am sure glad to get her back when vacation is done.

According to M, Grammy and Grampy were compliant with meds…THAT’S good. She was told to Acapella at least every evening, especially on ski days. She told me that Grampy never gave her the Acapella. However, she IS six now, and should be asking for it, if I’ve told her she needs to.

According to THEM, she didn’t cough at all (I’m not sure I believe it) M said she was a little tight, but didn’t cough. She didn’t tell them because she was afraid they wouldn’t let her play.

The place they go has a great recreation room in the basement. Lots of open space, and it’s really good for running around. I did it when I was a kid, and I’m glad that my girls have been able to play there too. I WISH we had such a great place for her to run around and play.

I get so so so tired of my parents telling me how “great” she does when she is with them. It makes me feel like they think I’m making it all up. I have CT scans of the air pocketing in her lungs. I have X-Rays that show her occluded with mucus from top to bottom of her lungs. It was warm out, so no, her lungs weren’t going to rebel as hard as they might have if it had been freezing cold out. It was rainy and wet…not icy cold. It’s just so flipping frustrating.

My parents also need to learn that M, especially, will rat them out if they don’t tell the complete and honest truth. I KNOW that they did this not to worry me, but they told me that Mariella only “threw up the once” It’s not surprising, really…I’ve been waiting for a good blow for about 3 weeks. She has gone her longest ever without throwing up. M, however, told me she threw up “a couple times.” The jury is still out as to whether or not she TOLD anyone she threw up, or if she just took care of it herself. Two would be fairly normal, more than that, no. It will be curious to see if she flares now. It’s about 50/50, whether or not she flares after an episode.

I can’t believe my father forgot to bring his camera. No skiing pictures this year.

(and, about 25 minutes after I posted this, she started coughing. Somehow, I don’t believe she didn’t cough the whole time she was there. It’s a nice deep cough, not quite barky…so I’ll see where it goes.)

Just a rant…

This was a post this week on one of my favorite blogs to follow. Amy had written earlier that it would be nice if Michelle Obama took Childhood Asthma as her issue. After all, she has a child who suffers from asthma, and it’s somewhat of an “invisible” disease. Unless one has lived the all-night coughing fests, the trips to the ER when your child can’t breathe, or any of the other “things” that parents of children with asthma have to deal with…it’s too easy to say, “it’s just asthma.”

First Lady Obama has chosen childhood obesity as her cause. Yes, it’s alarming how many children in the US are obese. It’s MORE than alarming how many children are being diagnosed with Type 2 Diabetes. However, I have a very, very hard time feeling sorry for parents with obese children. The reason? With the exception of a very small population of obese children…the parents DID this to their children.

Parents who frequent a different drive through every evening for dinner. Parents who ply their children with crap all day. Parents who believe that food is love. Parents who believe that it’s appropriate to feed a 5 year old child an entire box of mac and cheese, or get mad at the nanny for not feeding a 3 year old a THIRD grilled cheese sandwich. These are also the parents who look at the doctor and say, “I don’t understand WHY my child is overweight.”

Parents of asthmatics (or any other chronic childhood disease) didn’t make the choice to have a child with a chronic disease. It’s not like we sat there one day and said…”hmmm, I think I’ll decide to have a child with asthma.” Parents with obese children make a choice every day. A choice to feed their children a healthy diet, or to feed them crap. Or even just to feed them enough of a healthy diet, or too much of one. There is such thing as too much of a good thing. Even if you’re feeding your kid whole grains and low sugar…if they are eating too much of it, it will still turn to fat.

On NPR it was stated…”Mrs. Obama attributes her sensitivity about childhood obesity to her own days as a working mom (married to a busy, political-type, rising-star of a husband). Before moving to the White House, she had little time to prepare healthy meals for young daughters Sasha and Malia.” I did work full time when A was small. In fact I worked full time until she was 3 years old. Sure, she came to work with me, but I was still outside the home 45 hours a week. I still managed to feed A healthy meals. I prepared things ahead of time, I used the crock pot and the pressure cooker. I’m not sure why it is so hard for some parent to make a healthy meal. Perhaps it’s because it’s so much easier to make excuses.

Perhaps I’m more sensitive than most. My child takes high doses of adult strength medications to give her what little control she has. These are the medications that have the warnings on the TV commercials about one of the side effects of the medications being death. I would love to have more research into the causes of asthma. On why some people respond so wonderfully to medications, and why some people don’t respond well, or at all. I’d love to have more awareness out there. Too many people think that asthma is no big deal. Sure, people with asthma might have to take the blue puffer, or the yellow and orange one…but…they wheeze a little, they might cough…they stick the puffer in their mouth and they’re fine. My daughter ISN’T fine. I don’t count the good times in terms of seasons or months. I get excited if she goes a week without needing a rescue overnight. I have yet to go a full week without her needing rescue during the day. The twice a week “benchmark” of control…I laugh at that. (BUT…it’s just asthma…people don’t DIE of asthma anymore…do they? YES, someone asked me that question…they were a bit shocked when I looked it up and told them that 11 people die every DAY from asthma. That 300 CHILDREN die each year from asthma.)

Michelle Obama had a chance to bring the issues of those of us parenting children who have asthma right to the forefront. She had a chance to perhaps make a difference in the lives of the approximately 7 million children in the US with asthma (and their parents.) I really feel like she dropped the ball on this one. She had the chance to bring awareness, and with awareness comes research dollars and with research dollars comes research, and better medication and treatments.

AND, on a total side note…it occurred to me today that most people’s understanding of asthma comes from the drug companies commercials. It’s been quite funny watching the Olympics with M. Normally, she watches children’s programming, which is generally medication commercial free. So, she’s been noticing the Symbicort commercials, and every SINGLE time one comes on, she says…”Hey..THAT’S MY PUFFER” I also have to be careful of my older daughter watching the Advair commercials, because she has been prescribed Advair for her sick plan…and they use the “asthma related death” phrase several times in that commercial, and A doesn’t usually miss stuff like that.

Nothing new to report….

I’m just missing my girlie.

A. is also doing wonderfully. It’s sometimes hard to determine what is “normal” 9 year old girl behavior, and what is diagnosis related. She really DOES seem to be trying to regulate her behavior…if I could only get her to regulate her smart mouth.

Yesterday, homework time ended with her in tears, and me frustrated beyond belief. I totally GET that math is hard for her…but learning her math facts isn’t an option. She really HAS seen the difference in how well she does in memorizing her states and abbreviations when she started to practice it every day…I only hope that she also sees results in practicing her math facts too.

Things are quiet here, and I haven’t heard anything from the frozen north of NH…so I’ll assume that everything is going well there, too.

A new record!

We made it one whole week with no need to neb in the middle of the night. However, the streak was broken last night.

Stupid me…I had gotten complacent. I didn’t move the upstairs neb machine back into her room, and I didn’t have meds in her room, ready…so, it wasn’t an easy “get up and do it in my sleep” kind of thing. I had to get the machine…and oops, I took that cup to our friends house, because it was clean, and the other one was waiting for the dishwasher…and crud, the meds are down stairs. So, by the time I was done with the treatment, I was WIDE awake.

On a “normal childhood” note…It’s SKI WEEK!!!! The girls and I are heading to my parents…A will go skiing with Grampy tomorrow…and we’ll head home. M will be spending the week with Grammy and Grampy in the mountains…and she’ll get some skiing in with them. She’s healthy-ish…so it should be a good trip. If nothing else, the extra week off of school will help her out. She’s finally over the sinus infection, and mostly clear. It should be an easy week for my parents. I wasn’t diagnosed with asthma until I was in high school, and it wasn’t as scary as M’s…but they really do well with it. Once I explained that the maintenance puffers are for every day, not just if you think she needs them. They are fabulous with med compliance, and aren’t scared to keep her.

Hopefully, I’ll have some pictures of them skiing to post next week.

Allergy Testing…Round ONE…CHECK

We brought A to the allergy doctor today. Both the girls want a cat, AND we have at least one mouse (I can be optimistic that it’s just one mouse..right?) that seems to be avoiding the trap AND the D-Con we’ve put out for it…so, a cat would be a nice addition to the family. However, I felt it would be irresponsible to introduce a cat to the house when I don’t know for sure how it will affect the girls.

We had 2 cats when A was an infant. We were also frequent fliers at the local ER for respiratory trouble. Once we surrendered the cats to the shelter, her breathing got SO much better. Apparently, the 2 situations were entirely unrelated. A had RSV when she was an infant, and spent 12 days in PICU. It’s entirely possible (read-probable) that the decrease in ER visits had nothing to do with the cats leaving the house and had everything to do with her lungs healing from the virus.

Miss A was a trooper girl. She got the full panel of allergens…both her arms were covered with little dots. She only reacted to a couple of trees. So…first child…clear for feline.

Dr. W is an Allergy doctor and also an asthma doctor…though he is NOT a pulmonologist. He is good for “run of the mill” asthma…but I know for a fact that he would refer M out. SHE is beyond his scope. Anyway…in talking about history, I didn’t realize that the fact that A has had pneumonia 4 times makes her a recurrent pneumonia sufferer. Dr. W considered her one, and we walked out of there with a firm sick plan to implement with any cold. I don’t tend to be as proactive with A when it comes to colds, because she doesn’t always have trouble. This plan should prevent her from getting into trouble at all.

Dr. W wanted to know how I know if A is having a flare or if it’s pneumonia…our conversation sounded like this…

Dr. W: “So, how do you know if it’s a pneumonia cough or an asthma cough?”
Me: “My stethoscope”
Dr. W: “What does pneumonia sound like?”
Me. “It sounds like rice crispy’s in her lungs”
Dr. W: “OK…you know what a pneumonia sounds like”

He also said that I know more about asthma than most doctors. I’m sure that’s a compliment to ME, but what does it say about “most doctors”?

So, A got her allergy testing done, she survived (and got to pick out a game at Wally World as a prize)…she impressed the doctor with both her reading and conversation skills…and also was bouncing off the walls because we didn’t have her Adderall in the house this morning…if I was ever questioning our decision to start the meds…I am SO not questioning that any more…I’m exhausted just watching and listening to her.

A fabulous trip to Boston

I dragged…er….brought my family to Boston today. I am a HUGE (all caps, double underline) Harry Potter fan, and it’s coming up on the last few weeks of the big HP exhibit at the Boston Museum of Science. So, we bundled up and went out.

We got about 3/4 there, and M started complaining about her belly. So, I chucked a bucket back at her, and prayed. She doesn’t get car sick, exactly…but if her belly is bugging her, going on a car trip is a good way to set her off. Thankfully, it was a false alarm…though, I don’t doubt she was feeling pretty sour.

We parked at the T stop, and walked to the train. It was COLD. We only needed to ride for one stop…then another walk in the cold air. BUT, so far, so good. M was breathing fine, Daddy was really nice and carried her. (I guess that’s one advantage of being the size of a 3 year old…she can still be carried)

We got there, and we checked out some of the exhibits, then headed into the HP exhibit. It was SOOOOO awesome. A and I LOVED it. M really didn’t care so much about it. Then, we went back into the museum, where the girls touched everything, and of course, I forgot to throw sanitizer into my purse. I’m crossing my fingers that no one gets sick.

Then, back on the train, and a little bit of a longer walk to lunch. It was time for Atrovent, so I was getting her puffer ready, when she gave me a funny look, coughed a few times and sort of gasped out…”I think I need my blue rescue puffer.” I was prepared, so Xop first, then Atrovent. My mother always told me that I wasn’t supposed to “medicate” in public. I’m not sure why…but that is always in my head when I have to give M her puffers in public.

Apparently, M was feeling better, because she ate so much lunch. It was very tasty…and one of her favorites. I’ll take good eating were I can get it…though I did have to stop her, because I didn’t really think I wanted the chicken fingers to make a repeat performance. By the end of lunch, she was looking droopy and wanted to cuddle.

We walked back to the train, rode the few stops, and got back in the car. Of course, THEN…A started coughing. I asked her if it was a drip…she’s off her allergy meds in preparation of allergy testing…and she said…I don’t think so, I think it’s my lungs. So…I gave HER a couple of puffs of Xop…and her cough calmed down too. I’m sure it was due to the walking in the cold for her. She has reactive airways, and I’m sure they were just reacting.

All in all…a great day…mostly symptom free…since I don’t ever really expect a totally symptom free day.

I would also totally recommend the exhibit, if given the chance. I almost decided not to go, but I’m SO glad I did.