Thursday, September 13, 2012

If I Have To Live It...

...you get to read about it.  Lucky you!

This morning early, before even the birds were awake, Emily woke up retching and throwing up.
I went in to make sure she was okay, and then when it was loud enough to wake Jason up, he came in too.
We changed her pajamas and her bedding, and after she had settled down I rocked her back to sleep.

Jason and I went back to bed too, and a short two hours later Em woke up again, retching and throwing up.
As Jason was changing her pajamas and I was changing her bedding he looked at me with tired eyes and said, "didn't we just do this?"

I didn't tell you this, but last week we met with a geneticist who evaluated Emily.
We've had physicians Emily's entire life who have said to us, "oh the reason she does that is because she has a chromosome deletion.  We can't help you."
The geneticist, who specializes in Em's particular deletion told us, without any hesitation, that Emily doesn't throw up because of her syndrome.
"They are not related.  I can guarantee it," he said.
"Take that back to your GI doctor and tell her you need a plan B."

Our GI doctor, while a really nice lady, isn't concerned with Emily's throwing up.
Not even a little bit.
And it's this routine that we've been living for the last almost 10 months that finally pushed me out of my comfort zone, and convinced me to do something more.
Today I made an appointment with another GI doctor in the same clinic, who comes highly recommended.
My sole purpose is to get a second opinion.
And as much as I like our current GI doctor, if this new doctor shows even a shred of sympathy towards what we've been dealing with, I will make the switch and not look back.

I did something else too.
I called and made an appointment with a new feeding specialist, one who also comes highly recommended.
I've hesitated for fear of hurting our current feeding therapist's feelings.
But again, we've been seeing her for 9 months and have seen Emily only getting worse when it comes to wanting to eat.
Although, she let Jason put a slice of a pickle in her mouth the other day.
The face she pulled was classic.

Making those calls rejuvenated me for a few minutes.
To be honest, I'm past the point where I hope that Emily will some day stop throwing up, but if there is even a glimmer of a shot that someone new can help her, I'll take that chance.

Remember this tablecloth?


I finally gave in and threw it away last night.
It was beyond saturated with the smell of formula, even though we scrubbed it every day.
I went to the store last night to find a new one and in the whole of Target I found one.
One:


Halloween is not my favorite holiday; it never has been.
And I was disturbed at this being my only option.
But when I got it home I realized that it may be the perfect match for the job it will perform.  (To catch throw up and save my carpet from ruin.)
I'll keep it until Thanksgiving, when perhaps I can find a new plastic tablecloth...and then Christmas...and then Valentine's...
You have to look for the silver lining people, even in vomit.

One more thing:
After spending over an hour with the geneticist he said to us, "I feel really confident about Emily's future as far as her chromosome deletion goes.  She has such a good energy about her, and she's going to be okay."
Where I'm concerned, that makes it her best doctor's appointment this year!





7 comments:

Anonymous said...

Noelle,

That is such great news. Thank you so much for letter us share in your journey. And to get to know Emily.

It is a great story.

Shan said...

Good for you finding alternate paths to explore. I hope one of them leads to the solution.

Amy Johnson Goodman said...

Good for you!!! Fingers and toes crossed that the new specialists can get this figured out. And of course many prayers...

I love the look on Em's face with her new tablecloth. Me thinks she isn't all that impressed with Halloween either. Frankly, I agree with you both:).

Susan said...

Noelle,
Never hesitate to change doctors. Remember, they work for you, well for Emily. And if one doesn't give her any relief or respite from whatever her problem is, find one that will. My daughter had a stomach virus that was quite severe when she was about 3 years old. After three weeks, she finally felt better, but remained very lethargic. I kept taking her back to the pediatrician over and over complaining about the same thing. One day, I just started crying telling him this was not the same child she was before she had the virus. Would he please go back over all her blood tests and lab work one more time and look at it with new eyes? He stopped, looked at me funny, sat down at his desk and spread the entire file out and really looked at it. And guess what? He found that her iron level was very low and put her on a daily Flintstones with iron multivitamin and within a couple of days she was back to 100%. We have to fight for the health of our children because they are OURS, not the doctor's. And even though the doctors mean well, sometimes they just don't get it.
Best wishes as you look for answers.
Susan

Dazee Dreamer said...

I'm so glad to hear you are getting a second opinion. Even when your kids don't have a major problem, its best to keep taking them to different pediatricians till you find the one that is right for you.

Bridget said...

Oh man, Noelle! I just want to give you a huge hug!
Every time you've posted about Em having a hard time with eating I've left it up on my computer so that I could comment because Boston has had severe food neophobia and sensory aversions since he was born. I could go on and on about the nightmare it's been, but frankly, it exhausts me to even think about. Long story short, he never took a bottle, we wasted 100s of dollars in baby food, he will throw up anything that isn't his idea to eat, and he is now 6.5 years old and will eat a total of about 20 things, and each of those things is a HUGE success. People say their child is picky and I'm like, you don't know picky! It was the most difficult when he was a toddler and still not eating because I felt like a failure as a mom, and people looked at me like "what is your/his problem?" But then when Tagg came along I realized that it wasn't me or Boston just being picky or stubborn. The poor kid is just seriously deathly afraid of food and food textures, and he has been that way since he was born. Tagg on the other hand was totally different as a baby, and immediately showed interest in what we were eating as a baby and wanted to try whatever mom and dad had, and now he is normal toddler picky, but I don't even count that as picky because he eats! He willingly puts food in his mouth, and he would eat candy all day long if I'd let him. Boston will only eat one kind of candy... one. Over the years the list of things he will eat or try slowly grows and I'm not as worried about it anymore, because just this year he is starting to understand nutrition and how it affects him so he's trying to be brave about it all, but man it has taken a lot to get to this point. People still don't understand though. Even today Dev's mom who hadn't seen Boston in a while asked him first thing if he was eating anything new yet.
Anyhow, his eating habits were a nightmare when he was young, and it's nothing compared to what you are dealing with with Emily, so my heart aches and goes out to you! I'm so sorry you are dealing with any food issues! XOXO

Anonymous said...

I, too, applaud your decision to get a second opinion. I agree with what others have said, and have my own cautionary tale to tell.

When my first child was five months old, she suddenly began to have serious diarrhea. Like six or seven times a day, really awful - smelly and oily. Our pediatrician just acted like it was no big deal, since she didn't act really sick or lost a lot of weight (although she was small for her age to begin with). I kept bringing her in, and the doctor ignored me. I am ashamed to say I stuck with this doctor for three months ... I didn't feel confident enough to find someone else, and all the while the diarrhea continued. It was our veterinarian who was also a family friend, who suggested we have our child tested for giardia. The doctor didn't even want to do the test! He told me that I "read too many housewife magazines." (????) Well, I finally got up the backbone to INSIST on the test, and guess what. It came back positive. The doctor didn't even have the courtesy to apologize or even acknowledge that he had been wrong. I switched doctors, and it took another two months to treat the giardia completely, since it had become so entrenched over time.

I told our new doctor that I was the mother, and I wanted him to agree that even if he didn't see anything wrong, if I told him something wasn't right that he would respect that I know my child. He agreed, and did so. And now he is the pediatrician for my two granddaughters.

You are right to follow up on every possibility for Emily. And any doctor worth anything will be glad you are seeking a second opinion. You go!

Leslie in CA