Wednesday, February 27, 2013

It's been a while - part 2: Endocrinology

I don't remember if I ever got to write about Sadie's precocious puberty.  Yes, her brain was starting to release hormones that started puberty WHEN SHE WAS 2 YEARS OLD!!  What a mess.  Basically I noticed that she was starting to grow boobs.  I didn't even think about how big she was getting so fast.  I thought I was pregnant and I was getting weaker, so she just FELT heavier.  Nope, she's huge.  We completely skipped size 3 clothes.  She literally went from size 2 to size 4.  She even wears some size 5s and has a few things that are 6-7!!  Not to mention the diapers she no longer fit into!

When I mentioned something to Dr. Wendy, she sent a referral to Endocrinology where Dr. Oleson confirmed that that is not uncommon.  Apparently, when children suffer brain damage, it effects the pituitary gland, which is where all your hormones are secreted, which can mess up the timing on puberty.  Everybody just kept telling me it happens all the time in children like Sadie, like that was going to make it better.  It didn't.

Anyway, we X-rayed her wrist where her growth plate is (apparently it's indicating that she's 5), did some blood tests, and even had an MRI to check her pituitary gland (and to make sure there wasn't a tumor) and then it was determined that she needs to start a new medicine called Lupron.  It's an injection she gets every 3 months.  The goal is to suppress the hormones and stop the puberty and the growing, and she has to take it until we want puberty to actually for like 10 years.

Yesterday was her first injection.  

We had to order this medicine from a special pharmacy and they sent it to us in the mail.  It came in this crazy big box (think 4 shoes boxes stacked together) and all it was was a tiny plastic container, about the size of a DVD case.  We brought it with us to the doctor's office and the nurse gave her a shot in her leg.  She didn't even cry.  She is amazing.

This whole situation is just annoying to me.  I'm annoyed we have to see another doctor, I'm annoyed that Sadie is so huge.  I'm annoyed that she has acne and boobs and has even started to get another set of molars!!!  I'm annoyed that we have to give her shots, and that they won't bill her secondary insurance, so every 3 months (for the next 10 years) I have to submit a reimbursement form to ACCCHS.

Usually, when it comes to Sadie, I am sad, or I am grateful that we found and fixed the problem, but this time I'm just annoyed.  The whole thing is just so inconvenient.

...just one more thing they don't tell you could happen when you bring home your brain damaged child from the hospital!

Saturday, February 23, 2013

Anna's 30th birthday

Dear Anna,

Today you are 30, and we've now been friends for 10 years.  It's hard to believe it's been that long.  We've gone from silly girls wondering about our futures to heartbroken and joyful moms.  I have watched you literally grow up in the 10 years I've known you.

When I met you our biggest drama was a roommate who wanted "justice." 10 years later we've been through miscarriages, and birth trauma, healthy babies, and true love.  I am so proud to call you my friend.  You are strong and you shine and you are so very talented.

I remember your wedding.  It was so hot.  You were so beautiful.  I was so impressed with Jeremy.  Then, you were in my wedding.  And it was so hot.  And you were pregnant.

We have cried a lot of tears together.  We have definitely had a lot of laughs together.  We've had babies.  We've gained weight.  We've lost weight.  We've gone on road trips and plane trips and roller coasters.  We've even been through customs disasters after natural disasters and international collect calls from payphones in airports!!  And even though we've changed a lot... we're still so much the same.

Now your life is filled with a bunch of little men.  And they are so cute.  They are so full of energy and personality.  And they love you so much.  You and Jeremy are teaching them to be honorable and to live life with integrity.  I can't wait to see how they grow up.

I don't get to talk to you very often, I see you even less often.  But I still love you so so much.  I wish we lived closer to one another.  I remember when your bedroom was just on the other side of the wall from me.  Now you are 2 states away.

I love you and am proud of how strong you are.  I love your family.  You have a wonderful husband and 3 amazing children.

I can't wait to know you for another 10 years.  Happy 30th birthday.  I hope that it's wonderful and spectacular and everything you dreamed it'd be.


PS. Someday when our children are grown up and moved out (well, except for Sadie, maybe) and our husbands are just grumpy old men, let's still be silly.

Like this!!

Friday, February 22, 2013

Dear Ezra - February 2013

Dear Ezra,

It's hard to believe that just over 4 months ago I was still pregnant with you in my belly.  You haven't even been outside my belly as long as you were inside yet!  It's crazy that sometimes it feels like time is going so fast...and sometimes it feels like it's going so slowly!

When we went to your well-check appointment last week, the doctor said she thought she felt a tooth starting to come in!!  This might explain why you're drooling so much and always have your hands in your mouth.  It's crazy to think that you might have teeth soon when your sister didn't get her first tooth until her first birthday.  It's also terrifying because of how hard it was for Sadie to get teeth.  I hope you don't have as hard of a time as she did.  The doctor said she expects to see teeth in your mouth at your 6 month appointment!

I think you're going to be good with words when you grow up.  You love books and you love to "talk."  You seem to be very good at communicating...or maybe, because of your sister and her limitations, I'm just really good at understanding baby talk!  I can tell you love Sadie too.  Today you guys watched Care Bears together and both of you just talked and talked through the movie.  It's okay to like Care Bears, even though Daddy says you should be watching GI Joes.

You're starting to discover toys and how to play with them.  It's so funny to watch you lay under your toy bar and shake shake shake the rattles that are hanging down over you.  You get so excited when you're down there that you wiggle all around.  Sometimes you scoot yourself off the mat and onto the carpet.  Sometimes you spin yourself all the way around so you're facing the other direction.  A few days ago you learned how to roll yourself onto your tummy.  However, you quickly figured out that that wasn't as much fun as being on your back!

I can't believe how cute you are.  I love your little dimples when you smile.  And I love your chubby fat legs.  You look at me when I say your name and it's amazing to see the love for me in your eyes. You are going to be such a loving and cuddly boy, I can tell.  And you are going to be curious, and maybe even a little destructive.  I am sure you're going to be a good talker, and once you start, I doubt you'll ever stop.  You already love the sound of your own voice so much.

I love you so much and I am terrified, and so excited to see who you become as you grow up.  This is what you look like right now...

I know, the chair is pink, but we were at an appointment for Sadie and that's the only one they had.  This picture proves, you're gonna be a lady killer.

Love, Mama

Wednesday, February 20, 2013

It's been a while - part 1: GI update

It's been a while.

Here's the thing... apparently it's expensive to have a baby at the hospital!!  The bills just kept trickling in.  And because I work part time, I didn't have a pay check for 6 weeks because I didn't qualify for paid FMLA leave.  So, when my computer broke and the Apple Store told me it would cost $300 to send it away blah blah blah, I had to wait because we couldn't afford it.  And we couldn't take the baby back and get a refund.  And blogging from the ipad sucks.  And I can't include any pictures.

But now I'm back, and boy is there a lot to update you on!!  First up, GI.

Sadie had 8 appointments in January.  Plus movement therapy.  Plus a trip to the zoo.  Plus a stay at Ryan House and a birthday party.  We were pretty busy!  I'll get to everything eventually, but this post is strictly about our new GI adventure.

The day Sadie had her GI appointment was also the day of her 3-year well check.  Chelsea came with me because the idea of carting 2 kids around the Children's hospital (PCH) for 3+ hours caused me to get a little sweaty (I sweat when I'm stressed out).  In case you've forgotten, Chelsea is our respite provider.  I like to refer to her as Sadie's best friend.  Plus, I hate going to GI appointments, they are stressful enough as it is.  I was dreading it and I told Chelsea this.  She didn't get it until it was over and we were leaving.  If she had had a soapbox, she would have been on it ranting about that GI appointment for at least an hour!

First off, the weight check meant nothing.  Because Sadie has been experiencing precocious puberty (yes, she's 3 and she's starting puberty...more on that later), she's been growing like crazy.  We completely skipped size 3 clothing.  We literally went from size 2 to size 4 and 5 in like 3 months.  Therefore, of course she weighs more than the last time we saw the GI doctor!!  But in case you're wondering, Sadie weighs 37 pounds (yes, you read that right).

Then came the barrage of questions from the nutritionist.  I thought I came prepared, but she always asks me something I don't know and makes me look stupid.  This time it was about calories in the coconut milk.  I get so flustered and nervous when I have to remember something like this off the top of my head, especially when my ability to be a good mother is in question (I doubt it really is, but it feels that way), that I think I changed my answer about this 3 or 4 times!  Chelsea told me she felt bad for me, she felt like they were ganging up on me.  She said it felt like it was 2 against 1.

The good news is that what we're feeding Sadie is acceptable.  Although, it was determined that because I'm giving her coconut milk from a can, which is used primarily for cooking (and has 140 calories per 1/3 cup, by the way), they are not required to fortify it with calcium.  The dairy milk wasn't agreeing with Sadie, and we don't do soy, so rice milk fortified with calcium was what was suggested.  I'll save my comments about A. fortifying food with chemicals vitamins, and B. how much of a calorie cut that would mean for us for another time when they can be more helpful.

The bad news is that she still has reflux.  I asked the doctor about a Nissen Fundoplication procedure.  This basically is where they tie off the bottom of her esophagus so that food can still get down, but nothing can come up.  It's like a duodenum prosthesis! (ha!)  I am so sick of reflux.  There is puke on every chair Sadie sits in, on her wheelchair, on her car seat, etc.  We carry around rags everywhere we go, and it's embarrassing when she does it in public.  She does it at therapy and it prevents her from being able to be in certain positions that are good for her body.  And it's gross.  And embarrassing.  And gross.  However, our doctor is not a fan of the fundo procedure, and explained also that Sadie is not really a good candidate for it, because she is eating so much by mouth.

I explained that if we could have a minor surgery to solve the reflux problem I would opt for that over medicine and more medicine.  He looked at me like I'm crazy...apparently he doesn't feel the same way.  This is where I gently reminded him that HE'S not the one who A. has to remember to administer the medicine, get the prescription filled, call HIS office multiple times when the prescription needs to be renewed, etc., and B. still has to clean up puke when the medicine doesn't work.

The thing is a fundo can also NOT be helpful.  It can cause Sadie to retch, because stuff CAN'T come up.  Or it can have other side effects.  And I've heard both sides, that it's awesome and been so helpful and the need for meds is gone...and that they wish they'd never done it, it only made things worse, and if they could go back in time, they wouldn't do it.  So, I don't know if it's the answer.  I only know I am sick of the puking.

Instead, the doctor told me he'd like to see where her food is going and how quickly she's digesting.  He got particular curious when I told him that giving her 8-10oz every 3 hours had GREATLY reduced the reflux (before, we were doing 4-6 oz every 2 hours).  He said that is the opposite of what usually works.  So, he ordered a gastric emptying test.

Monday, President's Day, we went and checked into Radiology for a 2 hour test to watch what happens to Sadie's food after she eats.  They put some kind of radioactive material in her yogurt (not barium), and, after I fed it to her, they strapped her into this big machine and she laid there for 2 hours while they took a movie-Xray of her digestion.  Crazy, right?

Check out these pictures...

Under that warm blanket, Sadie is strapped to the table.  And she was a little too big for the velcros, so she's duct taped too!!  And yes, laying like this for 2 hours right after she ate made for some nice puke-hair.  Lovely.

This is the whole machine.  She was such a good sport.  They turned on some music for her, Ezra slept in the Ergo Baby carrier, and I ate snacks while reading Harry Potter on my phone.

I thought it'd be cool to watch a video of her food digesting.  Boy was I wrong!!  Instead I saw this.  It looked like a cluster of stars or something weird.  It moved every once in a while, but I wasn't able to distinguish anything at all.  Boring.
So, there you have it.  We don't know yet the results of this test, or really what the doctor is going to say about those results...I imagine he'll suggest more medicine, which is exactly what I DON'T want.  But, whatever.  I will give her medicine if it stops the puking/erping/reflux.

Just stop the reflux.  Please!!