Tuesday, February 26, 2008

Down hill we go...if we were even ever going up?

Today started out the same. Maizie prepares by putting on her sunglasses and waiting for it to hit. In the picture above she is actually sound asleep after the attack.

I guess we were feeling overly adventurous and made plans to meet our friends for dinner at Mi Pueblo. Maizie seemed well and put on her new dress and her Hannah Montana earrings. She even requested a little blush for her cheeks.

We were looking forward to a night out of this tiny house. We arrived and began talking with our friends. Maizie worked diligently on one dot to dot waiting for the little kids to arrive. Only about five minutes passed and she pulled me close to her and whispered, "My belly hurts." I took her to the restroom where she became very angry and insisted we leave at once to go home and get her medicine. Maizie is convinced the smell of mexican food triggered the episode and insists we never go to my favorite restaurant again. Can you hear me screaming?

I slowly walked back to our table. I felt like someone slapped me in the face. I had to tell everyone we needed to leave, that Maizie was having an episode again. We paid for our barely sipped on drinks and went home. Once home Maizie requested her pajamas. I left to run errands and within a few minutes Joe texted me that Maizie was vomiting. I was crushed. I am so beyond crying though. It reaches a point where you just don't cry because once you start you can't stop and worse...you know you will feel like crap the next day because of it. So...I don't cry and I don't wallow in it. It is just our life right now. It sucks though. I move back and forth between anger and overwhelming sadness. Thank god for my antidepressants or I would be a mess.

We called the neurologist and were given the go ahead to give Maizie the medications again since she vomited them out. The neurologist freaked Joe out by mentioning needing to go to the hospital. She agreed to wait until morning and see how Maizie is doing. The vomiting was relentless. After losing another pill she layed and moaned with pain. I gave her the third pill and prayed she could keep it down. Success! The vomiting slowed and she gradually began to be more coherent.

Now, we are watching The Jeff Corwin Experience...Maizie's new obsession. We are in for a long night of insomnia. Wahoo! Despite it all she takes it in stride. Possibly because she knows little else? Can you hear my heart breaking? Thankfully, when she is well we are able to drop everything and make the best of it.

27 comments:

tulipmom said...

Oh, Marla. I'm so sorry you had to cut your evening short. I'm sending hugs to you and Maizie.

Anonymous said...

Oh Marla, nothing I can do but send you a hug. Or two. Or three.

kristina said...

Oh no! Sometimes it just feels the hole widens and you keep falling and there's no bottom.... but there is one.

We are all thinking of all of you, wish we could stop by to visit!

(And I have to say, Maizie looks quite the starlet with those sunglasses.)

JUST A MOM said...

oh my goodness I am so sorry I am SO SORRY I wish they could find something to help her and you out. I think of you always when I am feeling in a bit of a funk ,, bless you Marla I pray life give you a break soon..

Laura Secord said...

My heart goes out for you guys. Hang in there.

Anonymous said...

I can sooo hear your heart breaking! My heart is breaking for you.
Hang on to that amazing strength and courage of yours... lots of love and hugs to you all. xx

Anonymous said...

I am so upset for you all.

What is going on in this mysterious world of ours? I only wish I knew.

Crystal xx

Anonymous said...

oh my god, marla! i hate that you are all going through this! it must be exhausting and scary and very isolating. i am sending my prayers and thoughts and xxxxx

Angie said...

Oh goodness. I'm so sorry to hear this. I hope Maize is better today and that this will subside soon. Hugs!

Niksmom said...

Oh, Marla! I am crying the tears you could not. This breaks my heart with it's awful familiarity. There are days I wish I could take on Nik's burden of pain just to give him respite. I keep you and Maizie in my prayers; something's got to give sometime soon. Please, God?

I smiled at the image of M in her new dress and her HM earrings, though. And the sunglasses...make her look like a big-time star! Even in her worst moments, M IS a star.

Sending you love and hugs and prayers. xo

Anonymous said...

I'm so sorry, and so glad that you didn't have to go to the hospital.

DS also associates things with throwing up tht arn't related (usually the last thing he ate). He still won't eat blueberries because he threw up all day once after eating a blueberry muffin. Of course, he doesn't throw up nealy so often.

Hugs.

Katrin said...

I am so sorry for you.

kristi said...

Gosh, I feel so bad for you! We have had to leave many situations too. I am thinking of you!

Club 166 said...

I'm sorry to hear things are going so badly at the moment.

Can you find the time for a long hot bath and a book? Anything? So you can decompress a little.

Joe

floating in space said...

I'm so sorry to hear about this latest setback. I keep hoping and praying things will get better.

Essential Amy said...

Marla,
I am so sorry that you are all going through this right now. I will be praying for you guys.

Anonymous said...

no mexican...the things we sacrifice for our kids. You are in my thoughts and prayers. Something has to give soon!

EJ Willingham said...

This is just too hard. I don't know how you all are doing it. It is almost impossible for me to understand the level of stress and anxiety you're all experiencing. You are in my thoughts. Something has to give here. There has to be some way to find that child some relief, but it just seems like you have tried everything.

This is not helpful, I know, but I think we are all hoping so hard that you find the light at the end of this tunnel.

E

Napaboaniya.Elaine Ling said...

I hear your heart breaking and it breaks me up a little reading this post as well.
The feeling must be really bad knowing M dislike your favorite eatery.
But apart from feeling the pits of it, I'm glad her vomiting episode stopped before a trip to the hospital was needed.
[Hug]+[Hugs]+ [More Hugs]

Anonymous said...

Marla,
I am so sorry. I wish there was something I could do or say that would help. It must be so very frustrating for all of you!!

Please know that you are in my thoughts and prayers. As is your beautiful daughter. Hang in there!
Sending love and light.
XOXOX

Julie L. said...

My heart goes out to you. I hope that your daughter feels better soon. Wouldn't it be great if we could turn off smells or dial down the sun or certain sounds? The sacrifices we mothers make...

Jerry Grasso said...

I am absolutely no expert on your life or situation. But if this is your favorite restaurant, and Joe and Maizie are good with each other...

Well, maybe you and your buddies can plan a semi-regular night out so you can enjoy margaritas and tacos?

I try to do this with Kim and much as feasibly possible. I mean, I get out all day at the office, etc...and not so much with her.

Just an idea, you deserve your life too....better living through pharma only pays off to a certain extent....

mommy~dearest said...

My heart is breaking with yours. Hugs to you all...especially Maizie.

Melissa Jo said...

i'm so sorry you all are going through this tough stage. i wish i lived closer to help! i love you all!

Jen P said...

Boo! Hiss! This stinks. You guys are all troopers and I hope M gets some relief

Anonymous said...

Oh, Sweetie, I can do more than hear your heart breaking... I can FEEL it breaking. Just hang in there and stay strong... and keep relentlessly digging for those triggers. It's a long path to travel, but it is so worth hanging in there for. If M is mentioning scents that she thinks bring them on, keep track of them in a log and see if you locate a pattern over time. Don't give up, and hang on! Giant cyberhugs to you, my dear!

Marla said...

You are all so sweet. I do take hot baths! Thanks for the reminder though Club 166. I am so glad I have a few male readers. Your comments and insights are very much appreciated. If you have not checked out Jerry Grasso's blog My Autistic Boy and Other Adventures in Fatherhood or Club 166 please do so. These Dad's are fantastic and it is always lovely to hear about things from a man's perspective.

Many times it seems like moms are out there doing most of the work and the advocating. I think many of the Dad's are just not as verbal about it though. Fathers play a huge role in caring for special children. They need encouragement too! My husband Joe has a blog One White Spot, you can get to it from the side bar. He has written a few fantastic posts. The one about M being diagnosed with her chromosome disorder is amazing. He has not written for a while but states that he may make a one year anniversary post soon. Too funny!