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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.

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Welcome to Holland….Don’t get Comfortable.

I’m just having a hard time.  Someone reminded me of the essay entitled “Welcome To Holland” (http://www.child-autism-parent-cafe.com/welcome-to-holland.html)  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 http://www.aafa.org/display.cfm?id=9&sub=42 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.

Clinic Appointment Update

Yesterday, we had a clinic appointment.  We were basically discussing the endocrinologist report, and what that means for Mariella.  We went off with orders for a test for Pancreatic Insuffiency and for an abdominal ultrasound.  She also had some blood work drawn.  (that did not make for a happy Mariella) She also wants us to see a dietitian.  So concluded the Gastroenterologist portion of clinic appointment.

Then, the pulmonologist came in the room, and we discussed her admission in July.  She agrees with Dr. Duda, that we are looking at something more than asthma, and that all the meds are masking what it really is.  She likely has an asthma COMPONENT to it, only because of the strong family history of asthma, but if she were mainly, purely asthmatic, she likely wouldn’t flare as often as she does, nor would she need rescue as often as she does, given the amount of medication she takes.  Of course, there are exceptions to every “rule” and she might “just” be a severe asthmatic, with very poor control, despite the medications she takes…but in order to find out, we have to take her off her meds to make sure.  Finally, we all agreed to make sure that anything that Dr. Duda wanted looked at or tested would be done as well.

Lastly, the ENT came in.  Mariella doesn’t have any ENT issues at all, but Dr. H is the coordinator of the program, so he basically comes in for what he calls a “social visit.”  We talked about the fact that he had run the Boston Marathon the day before.  He will be the point person for anything that Dr. Duda wants done for the admission.

All in all, it wasn’t a bad appointment.  We weren’t looking for any great answers for anything, we were more looking for a plan, which we’ve got.  I have to make my phone calls, to get appointments with the dietitian and for the ultrasound, as well as the labs.  Now, we just wait for July.

Off to the ER we go…..and home again

Last night, Mariella was coughing pretty steadily.  At about 8:00, she decided she needed rescue puffer, so she took care of that herself.  When the girls went to bed at 9pm, I was still pretty uncomfortable with her cough, so I gave her a breathing treatment.  Her cough really didn’t abate…and she quite literally, coughed for 2 straight hours.

Rob was supposed to go out after work, so I called him and asked him to come right home…because I had decided to bring her to the ER as soon as he got home.  Basically, he was going to be home at midnight.  He was able to get someone to do his show for him, and he came right home.  Mariella and I headed to the ER, and got there by 11:30.

Triage got us right into a curtain…even though her lungs sounded good, her cough and her color were her trump card, apparently.  The Resident came right in, listened to her lungs, looked her over, etc…and agreed with my assessment that it was an acute asthma flare that I was unable to get under control at home.   However, she DID sound a little croupy so he wanted the attending to make the call between prednisone and dechodron.  (As I’ve been thinking about it…she was really trying to hold her cough in, so it got a “barky” tone to it…when she just let herself cough, it’s her normal asthma cough)  The attending came and ruled out croup, so they wrote the script for a 5 day pred burst.

However, we were not quite good to go, because she kept having her O2 sats drop into the low 90’s.  It’s not unheard of for Mariella to sat at 91 or 92, and she’s OK…but along with her other symptoms, the docs wanted to make sure she wasn’t dropping and staying down.  Once they determined that she wasn’t staying low…that she was dropping and coming back up, they let us go home.

HOWEVER, it would be too easy if that was the end of it, wouldn’t.  She is still coughing rather steadily.  Not much break between spasms….and her spasms are lasting a couple of minutes each.  She’s exhausted from being up all night, she exhausted from coughing…I’M exhausted too…and we’ve got a really full weekend.  It’s going to be an early night.

SO, right now, she’s on all her regular meds, along with the prednisone burst, and q4 nebs, by the clock.  We see Dr. Duda on Thursday, but hopefully, the flare will be totally better…but if not, he’ll be able to fix it.

Drive By Posting…..

I got a letter from the Endocrinologist today.  Basically, all her tests came back normal.  No Turner’s Syndrome, and the steroids aren’t impacting her adrenal/pituitary system.

 

What I’m not understanding is…if the steroids aren’t impacting her adrenal system, does that mean they aren’t impacting her growth, that the steroids aren’t causing the growth failure.  The child hasn’t grown measurably for THREE years…a complete stoppage for 2 years…so what the hell is causing it.  I was all ready to get a tidily wrapped “this is the reason” kind of package…and we didn’t get that…we know it’s not the adrenal system…but what is it.  Is she malabsorbing?  Is it just that she expends all of her  calories surviving that there just isn’t any left over for growing?

 

I’m frustrated, angry, scared and sad.  I don’t like not knowing the answer…I don’t like not being able to fix it.  I’m OK with small…I’m not OK with total growth stoppage at age 7, 40 something inches and 36 lbs.

Another day, another specialist.

We’re home from the Endocrinologist, with more to think about.

He’s not convinced that her growth issue has to do with her steroid issue. It COULD have to do with her nutrition and eating…but he’s not convinced of that either.

We’re doing a full genetics test, along with another early morning cortisol draw tomorrow morning. She also had a bone age test.

I did learn that even when she was still following her growth curve, she was “small” for her predicted height (whatever formula they use with parent height to get the range of how tall a child will turn out) Meaning that even if she had not bottomed out, she wouldn’t have reached her predicted height. (which is between 5’2 and 5’5, or something like that) I think that’s why he’s not convinced that this all has to do with the steroids.

He’s not sure that getting her off the steroids is the best course of action, but will defer to the pulmonologists on the case.

I didn’t walk out of there feeling like we had “ruled out” anything. It sort of feels like he really thinks there’s something more going on, and that really, really frightens me. That whole “we don’t get more than we can handle…” I’m feeling like I’m getting to my end point…I’m frustrated, and scared, and not feeling a whole lot like I can “handle” it.  I will…I have to…but, really…how much more can I take?


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