Archive for May, 2011

Appointment with the nutritionist

Mariella and I met with the nutritionist today.  She isn’t bad, she’s personable enough.  She started out with a weight and height.  She’s still up a little bit, so the weight she picked up on the prednisone has stuck, likely due to the pediasure…that’s fine, we’ll take it.  It brings her to the 3rd percentile for weight.  Her height has not changed, which drops her to the 1st percentile for height.  Her BMI is average for her height and weight, though…though, for her age, she’s very low.

We talked about what Mariella eats, how much, etc.  I’m well aware I sound like “Negative Nancy” when I’m discussing her diet with people.  They offer ideas, and I end up nixing it…not because I’m trying to be difficult, but because I know what’s going to make her sick.  I’m sure it’s as frustrating for the medical professionals as it is for me.   I’m willing to try just about anything, unless we’ve already tried it, and it hasn’t worked.

The only thing I DIDN’T like was that if really felt like she was BLAMING Mariella for not growing.  She would say “you have to eat what mommy gives you” when, in reality, she does eat what I give her.  She just isn’t able to eat a lot…and she’s scared to eat, and sometimes, she just plain doesn’t feel well enough to eat.

We worked out how many servings of each food group she needs (3-4 dairy, 2 protein, 5 fruit and veggie, 5-6 grain) and she gave me a reward chart to fill out.  When she consumes something, she gets a sticker in the box for that item.  So, for supper tonight, we had pork medallions, apples, mixed veggies and a biscuit…she ate everything but the apples, but had a second serving on veggies…so she got a sticker for the pork, 2 for the veggies and 1 for the biscuit.  She isn’t to have anything to drink until AFTER she’s finished eating.  Solid food first, then drink…so she also had a serving of milk, so that got a sticker too.  Her portion sizes are those of a toddler…so very small amounts.

For each week that she fills most of her chart with stickers, she gets a little reward…probably a “sleep over” with Abby.  They love to have sleep overs in each others room.  When we go back, we’ll show the nutritionist the charts, and she will determine if Mariella has done well enough with eating things that she can get a big prize…Mariella has chosen a pedicure, probably.  The nutritionist wanted to have the big reward be based on whether or not she grew/gained but I nixed that.  I don’t think she should be rewarded or penalized on something she has no control over.  Reward her for eating the things she should be, but not for growing.

The only exception was if she was having a really rough time breathing, and doesn’t want to eat, I’m allowed to give her a full bottle of pediasure…rather than trying to force her to eat.  I’m not to do that if her belly is bothering her, though.  She should try to eat first, and supplement with the shake if we need to.

All in all, it wasn’t bad.  I get the feeling that she hasn’t been exposed to the challenges of Gastroparesis (though, why would she be, since the GI docs out here don’t diagnose it, or treat it)  That she mostly deals with kids who are diabetic, or are not gaining weight for other reasons.  I was turned off by the rewarding growth idea, and the way she addressed Mariella about eating.  However, sometimes, Mariella DOESN’T do her job of eating, because it’s easier to drink a shake, so maybe the nutritionist isn’t all that far off.  We’ll see what happens.  At least with a chart, it will keep ME on track of presenting balanced meals in appropriate portions…Mariella is the only one who can actually eat.

Welcome to Holland….Don’t get Comfortable.

I’m just having a hard time.  Someone reminded me of the essay entitled “Welcome To Holland” (  I see it mostly in reference to raising a child with Autism, but I’m not sure that was the authors intent…it may have been.  It really fits many situations when you are raising a child who has “different than typical” needs.   To paraphrase it, she says that having a child with special needs is like planning a trip to Italy(having a typical child), but being brought to Holland (having a child with special needs), and you don’t get to go to Italy.

When you find out you are having a baby, all sorts of plans begin in your head.  They are plans that don’t involve a daily medication routine that happens at BEST 3 times a day, more on bad days.  They are not plans that include going to the doctor every 2 to 3 months, sometimes more often.  Heck, they don’t involve even HAVING more than one doctor…the pediatrician.   Then all of a sudden, a baby comes along, and sometimes immediately, sometimes after a while, you realize that life isn’t what you were planning.

Now, rather than just making sure you have extra diapers and wipes, you also have to make sure that you have medication with you, in case your child starts having trouble breathing.  An impromptu trip out to dinner brings on guilt, because you forgot to bring along the medication that your child needs to take with meals, so that she doesn’t get sick.  Your child has a “team” not just one doctor, but 5, and you are nearly on a first name basis with them.

It’s HARD to embrace that THIS is your life.  It’s not the life you expected.  No one is saying you don’t LOVE your life, and your kids.  You know what, though…It’s OK to say that you aren’t loving your life at the moment.  Sometimes, the weight on your shoulders gets really, really heavy, and it’s OK to say that it’s hard.  It’s OK to cry, it’s OK to complain.  Most of all, it’s OK to do something that is JUST for you.

Right now, Abby’s having some “extra” issues.  It’s not terrible, it SHOULD be easily dealt with…but I was in the doctor’s office feeling very blue, because yet again…we’ve had to meet a NEW doctor, because Abby’s body, no matter what we do, add, eat, isn’t doing what it’s supposed to, and now, we have a secondary issue to deal with.   So, we have to keep her on Miralax, indefinitely, so that she doesn’t reopen fissures every time she goes.  It’s not terrible, it’s not life threatening, it’s just SOMETHING ELSE.  I’m tired of something else.

Pretty much daily, reminders of how close to July we are.  It’s time to finish paying for Abby’s camp, which is the same week that Mariella and I are going to the hospital.  I got a Federal Jury summons that begins July 5. (I asked for and received a deferral-and possibly an exemption) I was trying to make plans with a friend, and I realized that July is really only a month and a half away.  Whenever I think about it, it brings me a ton of stress.

To put it in the context of the essay…I feel like just when I’ve gotten used to being in Holland, someone makes me pack, and I get moved somewhere else.  When I get used to where I’ve gone, I’m made to move again.  When am I going to be allowed to just be where I am, to get comfortable?

It’s that time of year again….

Tuesday is World Asthma Day.  Both my girls will fit in the shirts I had made for them last year, so they will be donning their gray shirts with the pretty little logo I made. (gray is the awareness color for asthma)

Last month, I wore blue to promote Autism Awareness, I wear purple, I wear red, I wear yellow…I’ve donned shirts of all the colors of the rainbow, to show my support for people and their causes.  I understand that <your cause> is very important to you, and because YOU are important to ME, I wear the color of <your cause> to show you my support.

Asthma awareness is important to ME.  I watch my child struggle with it every day.  I answer the questions of “why ME?” more often than I should have to.  I would LOVE to see my friends and family don a gray shirt to show their support of ME and MY CHILD.

AND, in case anyone needs some hard facts, to prove that “asthma” is more than just a wheeze or a cough and a pretty blue puffer…here are some fast facts.

Every day in America:

  • 40,000 people miss school or work due to asthma.
  • 30,000 people have an asthma attack.
  • 5,000 people visit the emergency room due to asthma.
  • 1,000 people are admitted to the hospital due to asthma.
  • 11 people die from asthma.

(facts taken from The Asthma and Allergy Foundation of America)

Asthma is a real disease, and real people FIGHT it every single day.  Like all the other “invisible” illnesses, you can’t look at someone, and know they have asthma.  Even if they TELL you they have asthma, there is no way for you to tell whether they are a “blue puffer” asthmatic, or if they are an asthmatic who inhales multiple kinds of medication, multiple times per day.

We fight asthma in our house.  Please consider wearing gray to show your support of EVERYONE who lives with this disease every day of their life.