Memorial Day Bash, Parades and Teaching!

We had a 2 day long Memorial Weekend barbecue. It was nice to see old friends, make new ones, and just have a good day in general. I made sure to pre-treat Mariella before the fire...but she DID wake up tight and icky the next day.

One of my friends noticed the bluish hue to her nails, so at least I'm no longer the only one in the world who has seen it. I didn't grab her O2 level...because, I go into "fix the blue" mode. I know, I know...it's WHY we have the O2 monitor...I promise to be better next time. I think I need to role play or something, so I don't brain fart what I'm supposed to do.

Today, the girls walked in our town's Memorial Day Parade. They are both Girl Scouts, so they walked with their troop. I was GOING to bring the stroller...BUT, Mariella is SIX, and really too old to be riding in the stroller. However, the leader brought a wagon. Mariella did get tight, and asked for a treatment. (it was very warm, and starting to get humid.) So she was able to ride in the wagon for a few minutes while she did her treatment. She actually probably could have walked and nebbed..but since we had access to the wagon...we used it.

I had approached the leader last week about running a meeting to work on an asthma awareness badge that I had found on the Girl Scout website. She was ok with it, and did run it by the parents to see if they objected. Nobody did. One of her fellow Daisy scouts was a little freaked out and worried about Mariella when she was doing her neb, and we explained that sometimes Mariella's lungs didn't work the way they were supposed to, and that the machine put medicine in her lungs to help her...so I think a meeting on awareness is very appropriate. My thinking behind it was that if she is in the troop with them for any length of time, the chances are they will see her needing her puffer or a treatment. They need to know that she is going to be ok, and maybe more importantly, she can't make THEM sick.

I've printed off all my materials, and I'm going to look through them. I'm going to bring her nebulizer machine and her O2 monitor and let them look at them, check their O2...I'll bring my stethoscope, and show them how I listen to her lungs, I'll bring her puffers to show them her medicine. I've already asked Mariella if it's ok for me to talk about her.

I'll let you know how it goes when we're all done. I'm kind of excited about it.

Overnight musings....

So, I've been rolling the cardiology appointment around in my mind. I'm like that...I process things over and over again. I'm fully satisfied that Mariella has no cardiac issues. That is not on the table, and totally off my mind. I didn't realize how relieved that it would make me feel, since I didn't consciously think there was an issue.

In the conversation about Mariella's history, a funny exchange happened. The doctor was telling me what he had read, and how he had understood it...and said "I'm missing something about the belly...I read something, and I can't remember what it is." I replied, "she has some gastroparesis...but Dr. Goode doesn't call it that, Dr. Duda does...but not Dr. Goode." He looked a little surprised, and said, "Dr. Goode DOES call it that....that's exactly what I was forgetting."

So it makes me wonder...why did Dr. Goode tell me it wasn't gastroparesis. Dr. Duda told me her percentage...I can't remember off the top of my head what it was...but it was definitely slower than normal, so I call it that. Was she just trying not to worry me? I don't know. We DID talk about the possibility of treating her slow tummy...and we both decided that at the time, it wasn't necessary, so she does agree that it's slower than normal. I always thought that perhaps as a gastro, she had a different definition of "gastroparesis" that maybe it had to be slower than what Mariella's tummy is to make the actual diagnosis.

Also, the cardiologist was taking about her tummy and lungs being connected. Dr. Goode sees no evidence of such, BUT...most of Mariella's tests are inconclusive. They show that there is damage to her lungs, they show damage to her esophagus, they show a slow tummy...but the problem is that we haven't found an effective method to treat them. (as much as I would LOVE a test to say "this is the problem" and have a doctor say "I know how to fix that" I'm appreciative that the tests show SOMETHING...otherwise, I'm pretty sure I would have been arrested for Münchhausen by Proxy. I know I FEEL crazy half the time)

As I type, I think I can confidently say that Mariella has turned the corner. She has a little more energy. She isn't using her accessory muscles to help her breathe anymore. (it was quite obvious yesterday, the doctor mentioned it.) She isn't breathing between words, and giggling isn't sending her into gasping breaths or uncontrolled coughing. (and Mariella is a giggler...the smallest thing in the world sets her off) When she SINGS, she is still gasping a bit...which she doesn't normally...but I'll wager that by tomorrow, she'll be a whole lot clearer. I'm not hearing the grossness in her lungs, and she's bringing up the more normal amount when she uses the acapella. (I know...there probably shouldn't be anything when she does it...but there is) I think I'll let her graduate down to 2 times a day again.

This weekend is Rob's big Memorial Day Barbeque 2 day event. (oh, yay.../sarcasm) So most of the day will be outside. I'm hoping it's not going to be gross out. Should I pretreat Mariella before we light the firepit?

Cardiology update

Well...Mariella has a heart. A fully normally functioning heart. We started the appointment with an EKG...and that had all the appropriate spikes and valleys and other things. Then, a doctor came in and spoke with us. I was SUPER impressed that he had read Mariella's 4 inch thick chart. He did a basic exam...then his supervisor (the "real" cardiologist) came in. (I believe he was a doctor who was changing specialties.) I also really, really liked the real cardiologist. He was thorough, he took the time to talk to me, and answered all my questions. He had also read the chart, and was very well versed on Mariella's journey. He also did a very thorough physical exam...listening to all the major pulse points on the body.

He was very convinced that there was no issue at all, but he also had Mariella have an echocardiogram. He was funny. He said, "It's not for me...I don't think the blue period is cardiac. It's not even for YOU, since you don't think the blue periods are cardiac...but if I do a cardiology exam without the echo...Dr. Duda and Dr. Goode are going to ask...'where's the echo?'"

So, off to the echo room we went. There was a really cool mural in that room, two walls worth, and within the mural, there were hidden pictures. Mariella and I had a good time trying to find them, and then it was time for the ultrasound. She took about a gazillion pictures, we got to hear her heartbeat. (kind of cool, since the last time I heard her heartbeat on an ultrasound, she was in utero. It's actually the same whoosh whoosh sound, but slightly slower.) She also printed out two of the images for Mariella to bring home. I don't know how to work the scanner, but as soon as I figure it out, I'll scan them.

Our appointment was at ten of eleven...the doc was running about 10 minutes late, and we got out of there just after 12:30...so it was a nice long appointment. No real answers, but we really weren't expecting any. If we found cardiac issues, it would have ADDED an issue, not answered any questions, so I went into this appointment praying for it to show nothing.

Afterward, Mariella and I had a lunch date, and went to Target for her prize. Yes, I reward my child for good, compliant, cooperative behavior at the doctors office. Sometimes, she gets BIG prizes, other times, she gets small prizes. However, when you get told by 5 or 6 different people how well behaved your child is, and how good she does at the doctors, I think it deserves a "Littlest Pet Shop" set. AND, even better...she got a day off of school.

On the respiratory front, the pred seems to be beginning to work it's magic. She's still coughing, and complaining of feeling tight...but she's not as junky. She hasn't graduated to doing the acapella twice a day, she still has to do it 3 times a day. If on Tuesday, she's still feeling poorly, or if she goes south over the weekend, I'll get her squeezed in. (if I'm really unhappy on Monday, I might be able to get the pedi to order a chest series. I won't ask them to see her, since they can't ever hear anything anyway.) The pred is making her super sensitive...so we're fielding all sorts of tears and stuff, for any and all slights, real and imagined...but it could be rages...so I'll go with supersensitive, crybaby girl.

So, that's all from here. I have photographic evidence that my youngest has a heart. Along with the MRI from when she was 2 that shows she has a brain...we're all good.

fly by posting....

Mariella had to start pred...we followed sick plan, and she didn't get better...her lungs sound like they are full of junk...acapella brings all that junk UP. Her cough is gross.

Cardiology tomorrow. I have no idea how long this thing will take...it could be quick..."nope, nothing going on here" or it could be a long, thorough appointment...(that ends with "nope, nothing going on here)

I've already told everyone who needs to know that she probably won't be at school. I can't WAIT to see the total tally of absences and tardies on the end of the year report card.

So, we all have our challenges, right....

This blog is mainly about Mariella and our challenges with her asthma and her tummy "issue". I do have an older daughter as well. I'd love to say that her life goes along swimmingly, with no problems...but I'd be a liar if I did. We're in a nice, stable patch with her right now...but I thought I'd take the opportunity to tell a little bit of her story.

Abigayle was born in 2000. She was a month early, due to the fact that I was toxemic. I basically skipped right over pre-eclampsia and went straight to the doctor saying, "I'm surprised you're not seizing already." Due to my Gestational Diabetes, she was still a big baby (over 7 lbs) but she lost almost 2 lbs in the hospital before she came home. She behaved in the manner of most preemies. She was sleepy, she didn't feed well, and she was cold all the time, but we got through it.

She was a good baby. Other than her little blip of RSV, where she spent 12 days in PICU, she was a healthy baby. She still has reactive airways, but it's manageable.

Abby's struggles are a little harder to define. At about 18 months old, we started realizing that her tantrums were coming far more often than a "typical child" By the time she was three, she was having tantrums upwards of 20 times a day. Some would pass relatively quickly, others lasted for hours. They often were about things as minor as the fact that I gave her the wrong purple cup...even if the purple cup I gave her was IDENTICAL to the cup she wanted.

She also stopped sleeping. She would be messing around her room until 2 or 3 in the morning, and then be up for the day at 6AM. We were all exhausted. I finally brought her to the doctor and asked, no, BEGGED them to fix her. She started on Clonidine at that point, and it was wonderful...for the first time in a long time, she was sleeping. It didn't help the tantrums, or the defiance, or the other behavior issues...but at least I wasn't so sleep deprived that it was IMPOSSIBLE to deal with them. It was still DIFFICULT to deal with them, but not impossible.

We started to just give in to whatever she wanted...anything to avoid a tantrum, or a rage. She went from being a sweet, cuddly, loving little girl to a child who was prickly, angry, and distant. We began seeing a therapist, who was basically useless. She would send us out to the waiting room, and then not tell us what was happening in the session. I'm all about confidentiality in therapy...for teens and adults...NOT a three year old. We left that therapist, and muddled through for a while, until we began seeing another therapist. This was a behavioral psychologist, and the therapy was as much for me as it was for her. He taught me tools to deal with the rages and the anger and the defiance. He also realized that she was beyond his scope, and that she most likely needed medication. A scary, scary thought when your child isn't yet 5.

He helped us find a child psychiatrist who would probably be willing to prescribe medication for such a young child. We met with her, and we talked about all the possibilities. In young children, many of the psychiatric illnesses look the same. It was terrifying to hear things like "pediatric bipolar disorder" and "very early onset schizophrenia" along with the more "typical" diagnosis, like Oppositional Defiance Disorder and depression, and Autism.

Because I was diagnosed with depression in college, and when going over my history, the doctor mentioned that I probably should have been medicated when I was two...and the fact that Abby is a carbon copy of me at that age...we were pretty confident that we were looking at depression and anxiety. We made the decision to treat her with Zoloft. Within a month, things looked SO much better. She was still a challenge, and she still had rages and tantrums, but the severity and the sheer number of them went down. (It's important to note that Abby's first words were "Hi, Dada" into a pretend phone, at just over 6 months of age. Communication, or lack there of were never at the root of her tantrums...though, lack of ability to communicate are the typical cause of toddler tantrums)

In those early days, we still had real, scary things to deal with. When Mariella was about two weeks old, I came out of the bathroom to find Abby with a pillow over the baby's face. When I asked her what she was doing, she looked at me, and said, "I'm trying to kill the baby." There was also the time when she asked me something, and my answer was "not right now...in couple minutes" and she looked at me and said "I'm so sad with you, I'm going to cut myself into a million pieces." So, I didn't go to the bathroom alone for almost 2 years, and all the knives, including butter knives, were stored on top of the refrigerator.

Things a so much better now. I always know when she's due for a med adjustment...she gets more irritable, more defiant, and rages more easily. These times are fewer and farther between, as she isn't growing quite as fast as she was as a toddler and preschooler.

She was also diagnosed with ADHD at about this time, but we chose not to treat the ADHD at that time. It was hard enough to make the decision to start an antidepressant, I just couldn't start a stimulant at the same time. She did OK in preschool, she had a horrible teacher in kindergarten, but first and second grade were also pretty good. In third grade, she started to really have trouble, so we made the decision to begin ADDerall, and it's one of those times when I feel like kicking myself, and start waiting for the "Bad Mom of the Year" award to be brought to my house. She is doing so well on the new med.

We still see some 'red flag' behaviors, and I still wouldn't be surprised if at sometime Abby is given a spectrum diagnosis. If she does fall on the spectrum, she is high on the spectrum, and is functioning well enough. She has a plethora of sensory integration issues, tactile defensiveness, and other such things. She struggles socially. Her psychiatrist said those things can also be attributed to the fact that she is gifted, so really who knows. A diagnosis won't change anything...and we won't persue it, unless we have to.

She thrives in school. She craves the structure that school gives to her. She flounders at home on weekends and vacations. I try to structure our day, but it just isn't possible to do so to the extent that she would like. It makes it difficult sometimes, be we handle it.

Abby comes by many of her issues honestly. As I said, I was diagnosed with depression when I was in college. I was diagnosed with ADHD at the same time. There is a diagnostic tool call the Adult Connor's Scale, and I answered every question appropriately for ADHD. The doctor looked at me and said..."you graduated from high school....REALLY?...HOW?" According to him, I was one of the most severely affected adults with ADHD that he had ever met. I have always opted not to be treated, because, well..."I've functioned well enough so far." Though, according to Abby's psychiatrist, I'm not functioning "well enough." So I went to the doctor yesterday, and will be starting ADDerall tomorrow morning. We decided that it works so well for Abby, and she is so like me, that it will probably work well for me. I'm hopeful, and I'll let you know how it all goes.

Dance Recital Day

In the midst of all that is NOT normal in our lives, the girls do something that is VERY normal. They each take a dance class. Abby takes tap, and Mariella took a ballet/tap combo class this year. So, after a season of schlepping to the studio two days a week, today was recital day.

I'm beyond thrilled at how the studio chose to handle the recital this year. In years past, all the girls who were not in a combo class (combo classes are the very youngest of the dancers) danced in two shows. The first year Abby was old enough to have to do that, it was no big deal, the shows were on two different days, and we just had family out on the day of the show they both danced in. Last year, however, the two shows were on the same day, and each show was pushing 3 hours...with barely an hour between the shows in which I had to try and shove a Wendy's burger down Abby's gullet. Apparently, I was not the only parent who complained about the debacle, because they didn't have the girls dancing in two shows this year (because, really...why was it necessary?)

They did wonderfully. Abby took a tap class, and they danced to the Happy Day's theme song.

Mariella danced to "A Tea Party Ballet" Her little class sang along as they danced. It was totally adorable. She did great. I was a little concerned about her breathing, because I don't get to hang out back stage with them...and she asked me to bring her neb, but I told the adult in charge of them where we were sitting, and said if she asks for it, to come and get me. I had also dosed her before we left, and didn't think she would have too much trouble. She didn't until we got in the car...but I think it had a lot to do with the jumping up and down and general crazyness of the finale.

Both sets of grandparents were able to come, and we went out for delicious German food afterward. We got home, and the girls did some crafts with Grammy, and watched Empire Strikes Back with daddy...then it was time for treatments and bed.

As much as we all love dance, I think the girls are as relieved as I am when the season ends. There is time to hang out, and not rush these couple days a week now. Abby will be taking Ballet next year, and Mariella is taking "whatever Mr. David teaches" He is her favorite teacher, and she wasn't able to be in his class this year...so she is looking forward to being in his class again.

An apology in advance for a whiny post

Now that we've got the O2 monitor, and I've got a spreadsheet of her levels and rescue, either by MDI or nebulizer, I was able to see that Mariella has needed 7 albuterol or Xop doses in 7 days. Not one a day, so there have been days that she needs more than one.

So, now that I have it in black and white...it's a bit easier to say..."wow, it's time to implement the sick plan...for some reason, her lungs are PISSED." It's also just HARDER to see it in black and white. I know I "forget" how many treatments we really do...when we do them so often.

So, my spreadsheet has her pre and post treatment (if needed) O2 levels, as well as a notation as to why she needed a treatment. I am basically giving a rescue treatment for any O2 level of 93% or below. It's not the protocol I've been given...her doc didn't really give me one...She's never really had low O2 in the office when we're there. Even when she was completely occluded, she was satting at 99 or 100%. I don't think he really expected to see low readings. We see nice high ones too...98, 99, 100%. Sometimes, she's got a nice high O2 reading, but she's feeling short of breath, or her chest hurts, or she's coughing...and those get a notation. I always check her O2 after a treatment as well.

We started "sick plan" tonight. Her cough has gotten steadily worse since Tuesday, when she ended up in the nurses office for her Xop. At that point, she was just tight, according to the nurse. She was not coughing over night, but did start as soon as she woke up, and asked for a treatment on Wednesday. By today, her cough is junky and gross...she is bringing up grossness after her acapella. (which of course is good, that's the point of airway clearance) It's not colored...just gross. I don't want to, but I might just keep her home tomorrow. She's coughing in her sleep, which means she won't be well rested, and they already complain about her distractedness...which will be worse if she's tired.

Tomorrow we're heading to the financial counselor at the hospital, to see what Mariella qualifies for, regarding MassHealth. It's just so expensive keeping her in medication.

I'll also be calling her pulmonologist, to let him know we've started sick plan, and to see if he thinks he needs to see her. He usually does not, though...he trusts me to administer the medication, and to call if she goes south.

This place called the Internet

I am blown away. When I posted my fundraising link on my blog, and on the boards I frequent, I really didn't think that I would get any donations from them...but I felt like I needed to throw the opportunity to donate out there. No one can imagine my surprise when I realized that almost HALF of the money I raised came from people that, though I consider them friends, I will most likely never meet them in person.

That is an AWESOME thought. This "place" called the internet...it is really beyond comprehension to me. That 2 of my friends can take their inhalers together, 10 thousand miles away. That a person that I've never met, yet known for 10 years cares enough about me and my daughter, and a cause that I believe in, to donate more money than my parents did. Nothing against my parents, they donated what they could afford to donate, and that's great...they didn't have to donate anything. It just shows the scope of these friendships that I have built over the years. (and in just a few months)

I started this blog on a whim. I was feeling as low as I've ever felt...and in the matter of a few months, I feel like I've become part of a community. Like the boards that I am a part of, this community designed for a specific reason (in the case of the blog, because of asthma) it becomes so much more. I spent all weekend waiting to hear about one persons daughter's play, I keep track of another friends tweets about the different things she sees as she walks around her neighborhood.

It's kind of funny...when I talk about a friend, sometimes my mother will ask...is this a local friend, or a global friend. That's kind of a neat thought...I have friends all over the world.

To all my friends who donated, and those who would have liked to, but it just isn't possible...For all my friends who were cheering me and the girls on from afar....I felt your support. I'm sure we'll be doing it all again next year, it was a great time.

Without the internet, none of this would be possible.

Great Strides!!!

The girls and I walked for the Great Strides walk today. There is a 3 mile option and a 6 mile option. We did the 3 mile option.

Abby walked the entire way without complaint...I was super proud of her. Mariella walked at least 3/4 of the walk on her own. There were 2 HUGE hills that I carried her up...and one of our friends and I stopped off to get iced coffees for the group, and Mariella stayed with us...so to catch up to the group...Jeff gave her a little lift...but just because she has short legs, so she doesn't move as fast.

By the end of the three miles, Mariella was starting to need to take breaths between words again (it's not all the time, I've noticed...most of the time, she DOESN'T do it. ) She was afraid we weren't going to walk if she was having trouble...so she kept telling me she was fine.

We got to the picnic at the end, and she was huffing a little bit...but it wasn't until she started coughing that she realized that she needed her rescue. She started out asking for her puffer, then thought about it and said..."nope, I need my neb...you brought it, right?" Of course, I had...so she was good in a couple of minutes. Yet again...THANK YOU, Pari Trek. Her Xop MDI would have helped too, but she would have needed a treatment when we got home...or another couple puffs of the MDI, since we didn't go right home.

I didn't hear the how much was raised today...I raised over my goal (though I did aim low) I'm proud of how I did.

Right now, Mariella is hanging out on the couch, I'll be surprised it she makes it past 7. Abby's in the shower....she's beat too, but she wants to wait up for daddy to come home from his weekend away.

There is a bliss in the unknown...

We're "spot checking" Mariella's O2 now. Basically, I'm shooting for morning, mid dayish, and then bedtime. Mid day on school days will be after school.

This morning, we got up and did her check. She scored a whopping 79%. That's like SCARY low. I got her on the neb real quick, and her post neb level was back up to 100%. But that scary low, right after she got up...makes me wonder now whether she is desatting during the night, and I don't know it. We didn't keep the snazzy sticker things that will stay on her finger all night...so I really have no way of monitoring her all night...nor can I sit up and watch a monitor all night, really.

I think this is one of those times when the saying "Ignorance is Bliss" really applies. It's not that I don't WANT to know, or think I don't NEED to know that she's desatting like that...but when I DIDN'T know, I could pretend that it wasn't happening.

I asked her how she was FEELING...she said she was a little tight, and that she felt like she had been spinning around. I'm going to have to make sure that we ask her how she is feeling...so that she can put a name on the feeling, so that she can articulate what she's feeling.

I've been paying closer attention to her as she talks, to see how much of a sentence she says without breathing...She needs to take a breath every 3rd of 4th word...For example, when she was telling me about going to the gym to see the art show being set up, went something like this...Mrs H brought (breath) us to the gym (breath) to see the (breath) art show set up. I got to see my (breath) picture on the wall. (huge breath) What I DON'T know is, is this a HABIT that she's developed over time, or does she really need to breath that often when talking. Or maybe it's a little bit of both. Just one more thing to wonder about and keep an eye on.

One final note, I'm walking on Sunday to raise money for Cystic Fibrosis research. I'm excited about it. I hope that I'm breathing well enough to do it, and I definitely hope Mariella is breathing well enough to do it. I'll throw the Pari in the car, and keep a puffer with me, and hopefully, it's not going to be too bad.

We're beginning to look like a doctor's office around here

We have nebulizers, and airway clearance devices and now we have a pulse oximeter.

The RT came to do the training today. I didn't think it was all that hard, but I'm sure in order for insurance to cover it, they needed to do the in-home training.

We plugged it in, and tested it out on me. I'm satting at about 96%. Not great, but it doesn't set the alarm off. I used my inhaler as soon as we were done with the training. The other funny thing is that my resting heart rate is about 54. The alarm goes off at 59...I'm not sure what the top level is...I have a hard time getting my heart rate up when I'm working out, even.

Mariella is kind of excited that it's coming today. She asked me why I wasn't working this morning, and I told her it was because I had to be here when her pulse oximeter came. I'm sure she's going to want to try it as soon as she gets home.

It just occurred to me, traveling with all this equipment is going to be a PITA. I wonder if carry on restrictions are different if you are transporting medical equipment? I guess I'll have to call the airline and find out. The pulse oximeter isn't huge, and the PARI is small and compact...I guess I'll have to get a bag that will hold them both...that and my laptop are my items, I guess.

Getting Called on the Carpet

Yet again, I've had one of my daughter's doctors reprimand me for not taking care of myself. I've been tight for a couple weeks (a month, maybe more) not tight enough that I feel like I need to make a doctor's appointment for it, but enough that I need to use some sort of rescue more than I should.

Abby had an appointment with the allergy doc, who is also her asthma specialist (he is NOT a pulmonologist) and during the appointment, she said..."Momma, how about if you ask THIS doctor to give you medicine for your breathing." He looked at me, and I told Abby that we were here for HER, not me. He asked how often I used albuterol. It's awfully embarrassing to answer that question. I KNOW I'm not under control. I KNOW I could be better controlled. Heck, I know I SHOULD be better controlled. Our med regime for all of us is expensive. I DON'T flare like Mariella does. I don't flare all the time, but when I do...it's typically BAD, like in my doctor threatens inpatient regularly. I'm also horrible at med compliance...I'm pretty sure I've forgotten to take the 2 pills I take every day. I'll have to check...I HAVE to use a daily pill organizer, so that I can check if I've taken them or not. I have a hard time justifying paying for medication that I will likely forget to take.

ANYWAY...a couple months ago, Abby's psychiatrist asked when I was going to get myself treated for MY ADHD. She was very stern, and I felt like a kid called to the principal's office.

TODAY, Dr. Walker asked how many times I used my inhaler a week, and my answer was "you really don't want to know" He asked if it was more than twice a week...and I said, yes...he then asked if it was more than once a day....and I sort of looked down, and he raised his eyebrows at me, and told me I had to take care of myself.

I have to go to the hospital and see if the girls qualify for MassHealth. If they do, I'll totally go and get back on controller meds. That will be my job for this week.

I've been slowly learning to take care of myself. I spend SO much time taking care of other people, it's not surprising that I have a hard time putting myself on the list. I can't be the only one out there that does this, am I?

Happy Mother's Day...

For all the mothers in the world, whether by birth or adoption. For those who never met their babies, or held them only for a short time. For those whose babies are yet to be...Happy Mother's Day to you all.

"Momma...am I the only one who needs all this medicine?"

That was the question that was posed this morning when we were doing her inhalers this morning.

It's a tough one. No, she's not the only one who has to take all this medicine...but she IS the only one she knows who does. She's the only one in her class who has to go to the nurse to get an inhaler at lunch time.

On a positive note, my parents finally really GET IT. They are taking the girls for a week this summer, and made some plans expressly because of Mariella's lung issues. It's a far cry from 2 years ago, when my father called and said "she hasn't needed her inhalers at ALL, but we're going hiking and I can't remember which one we need to bring with us." He didn't get that the controller inhalers needed to be used every day, even if she was fine.

I'm pretty sure I have the only child in the world who gets excited over durable medical equipment. Our PARI Trek was delivered yesterday, so I had it plugged in, charging, when they got home from school. Mariella asked what it was, and when I told her, she said, "Gee, I'm breathing pretty good right now...but MAN, I want to try THAT!" I can't wait to see what she says about the pulse oximeter.

All is quiet, for now. She was a little junky earlier this evening, but she did her airway clearance, and got a good cough going, and it really moved stuff around. I didn't grab my stethoscope to take a listen, but the cough was really wet. I'm hoping that it's not a good flare starting, and just some junk...but, as always, we're keeping a close eye on her.

Balance!

My Blogger friend, Amy (http://www.theasthmamom.com/) has talked a lot about "balance" on her blog. The balance between being a hovering, over-protective asthma parent, and letting the "asthma kid" live as normal a life as they can. (which, for all intents and purposes SHOULD be completely normal, aside from the need for some medication) I'll admit, I read all her posts about balance with such attention, I practically take notes.

Balance is something I struggle with. I am fortunate, because Mariella is GENERALLY fairly good at "policing" her own lung status. She understands the feeling of having a tight chest, and knows that getting her rescue inhaler will help that. She knows that if she is coughing and can't stop, that her rescue inhaler should help that. She isn't as proactive at treating a cough as she should be, but...hey, she's SIX. If the teacher says, "you're coughing a lot...go see the nurse." She goes. If I say, "you're coughing like crazy...do you want a puff or a treatment?" she will think about it and make the appropriate choice.

However, we've added a new symptom...her turning blue, and she doesn't seem to FEEL anything but lethargic. I find myself obsessively checking her fingernails and lips. I KNOW it's not the best thing for me to be doing...for me or for her...but I can't seem to help myself. I need to find my way toward a better balance regarding this. Mariella doesn't need or want me hovering over her, constantly checking her fingernails, and I can't obsess about it. I just worry SO much...especially since she isn't feeling a physical pulmonary symptom that she can identify.

I don't know if I should start keeping a symptom diary. So that I can get a better idea of what is going on when she turns blue. What the weather conditions are like, what she is doing at the time, if she's currently flaring, if she is sick. Perhaps something like that will help me find a better balance. A better way to gauge if I need to check.

I've had several people tell me recently how impressed they are at how I handle Mariella's medical issues. I appreciate their thoughts, and I accept their compliment...but I often feel like a fraud. I don't feel like I'm handling it well at all. I'm angry a lot, I'm sad a lot. I cry all the time. I grieve the childhood that Mariella is missing. I grieve the attention and childhood that Abigayle is missing too. She shouldn't have to "fend for herself" as often as she does. She is nine, not 19. She should have her momma's attention too. Again, with the balance thing. How do I balance the needs of my chronically ill child, and my healthy(ish) child. Of course, if she is sick, she gets my undivided attention...but she should be able to get that all the time. I TRY...but it always seems that my time and attention is skewed to the Mariella side, and the Abigayle side gets shafted.

I wish I knew the answer. I wish I knew how to find balance in everything in my life. I'm working on it, and hopefully, I'll find it (or at least something close)

Yesterday was World Asthma Day

I fully intended to post YESTERDAY...however, at 4:30 PM, a tree took out the power lines on our street, and fully blocked one side of out street...SO, there was no internet access, and therefore, no posting. We finally got power back at 5AM...and thankfully, it was a quiet night...I'll admit, I panicked a bit at bedtime, when it occurred to me that I wouldn't be able to neb Mariella, should she need it. We DO have MDI rescue meds, though...so it wouldn't have been a panic situation.

The girls and I wore our World Asthma Day shirts yesterday...even though I worked, and I'm not supposed to wear Tshirts, I did anyway. Abby told all her friends about why she was wearing her shirt. She found out that several of her friends have asthma. Mariella also told everyone...and thought it was hilarious that they all said "Really, I didn't know there was such THING as World Asthma Day."

It's amazing how many people don't realize that people "still" DIE from Asthma. Of course, it's "ONLY" about 3600 people a year...but again, I'm unsure why ANY deaths from a largely controllable disease is acceptable. I'm not sure why it's acceptable that 10.2 million children suffer from from a disease that should barely be a blip on their reality. Why it's acceptable that over 8 million dollars are spent every year on treating asthma, which is LESS than the 10 million dollars of indirect costs of absenteeism, from work and school.

The incidence of asthma in children is rising steadily. I'm not sure if it's because it's better diagnosing is taking place, or if there are just more children that are being afflicted. In my personal experience, it took well over 7 years to be diagnosed with asthma, though I was treated for "chronic bronchitis" for all of those years. Finally, a doctor who was knowledgeable in what was then called "atypical coughing asthma" diagnosed me. It is now more well known that asthma isn't just wheezing. There are other symptoms to be looked at...things like coughing, shortness of breath, or pain of a tight feeling in the chest. As more doctors become aware of these other symptoms, more children are being diagnosed.

I'll admit, I have a personal stake in more research, in better treatments for asthma. My 6 year old daughter takes 3 different inhalers every day. Each inhaler is prescribed in adult dosages, because the appropriate pediatric treatments have proven not to work for her. At least one of the medications has a warning regarding increased risk of asthma related death. (of course, uncontrolled asthma also carries a risk of asthma related death.) There needs to be more research in the connection between gastro symptoms and asthma symptoms.

Finally...the next person that I hear say..."well, it's JUST asthma..." I'm going to kick them. I heard it the other day, when I was giving Mariella a rescue puff, because she was blue. A person who I don't know said..."well, at least it's just asthma...once you give her that inhaler, she'll be fine." Unfortunately, we were at a church camp open house, and really, they kind of frown on kicking strangers.

Pulmo Appt. Update

Mariella's lung function is great...so that's fabulous. She IS growing...she gained 2 lbs in 6 months. Kids are "supposed" to gain about 10 grams a day...if we JUST look at from her last appt. 6 months ago...she's gained about 5 grams a day. It's still too slow, it still shows malabsorbtion...BUT...I'll take ANY gain. So YAY

Let's see...No answers about why we can't get the coughing under control, or why she gets a tight chest or short of breath so often. Her oxygen was lower today than normal, but not at panic level.

We talked about her getting dusky and blue...I have to get a oxygen monitor, to get a number when that happens. We also got a referral to the cardiologist...to make sure that it's not an ADDITIONAL issue that we're overlooking, because it's very easy to say "oh, she's turning blue, it must be her lungs"

We have another referral to a DIFFERENT program in boston, at a different hospital. It's one that my friend speaks SO highly about...and basically, Dr. D doesn't know where else to go...I'm a little nervous about it, because it may or may mot involve more tests, and I'm just not sure where I am going to draw the line. I know what I WON'T do...no more endoscopies, or colonoscopies...they don't show anything, and she's had enough. I might let them do another bronchoscopy...but I'm not sure. I guess it's just worth talking to them, and finding out what they will say.

I talked to a social worker about getting Mariella on MassHealth as a secondary insurance. AND, when Dr. D heard how much we were spending on meds, he went to the closet and got me 6 weeks worth...and then we're going back...so he'll give me more then.

Dr. D does not use peak flow with the majority of his patients. Especially in kiddos who have stellar PFT's in the office. I have faith that if he thought it was appropriate for Mariella that he would order it.

So, no real answers...but a plan of attack to get there.