Friday, March 7, 2008

Ten Year Old with Cyclical Vomiting Syndrome Goes Out on the Town!

Today began like every other day since January. Maizie and I sat around. She worked a puzzle while I waited and "watched". Her belly began to hurt by noon. She took her medications and we both napped. Once awake she looked like a different child. I cancelled her hair cut appointment early on in the day. I sadly admitted to myself that there was no way she was going to leave the house yet alone tolerate a hair cut. I need to make arrangements for a hairdresser to visit the house. Joe calls this phase of hair growth the "helmet hair". It is not pretty.

When asked if she would be able to leave the house today she responded, "I'll think about it." Gee...I wonder where she heard that from? After four days of being in the house I was encouraging her all desperate like to venture out! Dinner time rolled around and she finally agreed to dress. After making sure the sun was down she said yes to Target. Thank you God! I tried not to get my hopes up since the night before she had wanted to leave and just as we headed out the door she said, "Mama...I just can't do it." I wanted to scream.

Maizie created a list that said,'Rescue Pet Get It!'. Needless to say she left Target with a Rescue Pet. May I briefly mention that I think they are creepy. You can set them to be a sad dog or a happy dog. The premise is that you are rescuing the dog or cat...a stray. I don't know how to explain quite yet why they bother me. My brain is fried. Oh, well. She likes it. Any motivation to leave the house is good. At this point I would have agreed to any ol' thing she put on that list just to get her dressed and out on the town!

After Target we ate dinner at Cheddars. Yup, we were pushing our luck! Pushing Maizie too. I gave Maizie a Zofran right after sitting down. It seemed to help her. Making it through a dinner in a restaurant was nice! Very nice. Joe mentioned visiting Borders after dinner. Maizie had begun licking her mouth excessively since we left the house. A sign of anxiety. She explained that Borders is "not her favorite" because there are too many kids in the way. I assured her that being a school night the children's' section would be empty. Thankfully I was right! As you can see from the photos Maizie made herself right at home reading Snog out loud. Possibly, this successful trip out of the house will boost her confidence and she will be less fearful of becoming sick from outside triggers.

Joe and I took turns browsing while one of us sat with Maizie. We left Borders at eleven o' clock. Eleven o' clock at night! Did I mention we were out of the house with our ten year old until eleven o'clock at night on a 'home school night'? Unbelievable. Granted, home schooling is done mostly at night now. I want to get advice from the families who have children who are allergic to the sun. I think they may be able to give me some pointers on our new lifestyle. Seriously.

24 comments:

JUST A MOM said...

WOOHOOOOMM WAY COOL YOU GOT OUT I AM SO HAPPY!!!!!!!

michele_k said...

That's so fantastic that you all got out of the house tonight, that Maizie was feeling up to it. And she looks so happy in those pictures, just lying on the floor reading books. I'm so happy for all of you!

Maya M said...

Maizie is so beautiful, even with helmet hair!

Katrin said...

Hey Marla, I was just thinking, have you ever heard of the Marshall Protocol? A guy I know, IRL, has/is currenlty going through it for some of his health issues, it's a treatment plan, and he keeps suggesting I try it to see if it will help as he has had great sucess with it. I haven't gotten that far or feel I have the relationship with my new PCP quite yet to suggest it. Just was wondering if you'd heard of it.

http://www.marshallprotocol.com/

Anonymous said...

It is such a good sign to get Maizie out of the house, even if it's just in the yard to play. She needs fresh air in her lungs desperately. She looks quite happy sat on the floor reading those books.

Take care, Crystal xx

Anonymous said...

Kids are great! They make wonderful biofeedback machines too. You've got a style to your writing that makes reading your posts fun!

Anonymous said...

Yeah! Out of the house. To places with florescent lights even! So happy for you.

Club 166 said...

I'm not familiar with the whole "Rescue Pet" thing, but I wonder sometimes in those that are adopted if kids somehow identify more with "stray" animals, and work thru some of their own issues with being adopted that way.

Joe

Anonymous said...

I bet you are not excited about the upcoming time change are you! She looks so good in that bottom picture.

Casdok said...

Maizies smile says it all!

Angie said...

What a great night! Feeling happy for you. Hope today is a great day.

kristina said...

Charlie likes to make himself at home on the carpet of stores too-----sometimes I have wondered if Charlie himself might not prefer to be in night school, as he used to see most alert at 9pm. Hope this trip is the start of a new trend,

Anonymous said...

WOW! so fantastic that you got out of the house and had fun at that! CONGRATULATIONS!!

Ashley's Mom said...

marla, thanks for visiting my blog. Can you describe what the 72 hour EEG was like? One has been suggested for my Ashley, and I can't begin to imagine how she would stay 'hooked up' for that long - 72 minutes probably wouldn't even be possible.

EJ Willingham said...

What a wonderful night for you all. We've never had nearly the stress you've been handling, but even we know that there's nothing quite like a smooth, quiet, lovely success of an evening out with our kids. Beautiful. Man, I hope these medications just do it for you all.

floating in space said...

AWESOME! Wishing you many more adventures!

Marla said...

Ashley- I sent you an e-mail. I hope it helps!

Katrin- I have not heard of that but I will look it up and e-mail you.

Thanks everyone. Maizie had an episode again today and is doing better once again at night time. Tonight we are watching movies and my nephew is here. I hope you all enjoy your Friday night!

Anonymous said...

I am so happy for Maizie (and you of course) that you were able to get out of the house. Maizie looks so happy being out, the smile is wonderful.

I think at this point you have to do what ever works, and if that means being at the book store at 11:00 pm, I'd stick with it for now. For now, she seems to learn best towards the evening anyway.

I'm keeping you in my thoughts and prayers. Hopefully things will get back on track soon. Baby steps, is the way to go!
XOXOXO

Travis Erwin said...

Good for y'all!

Pregnantly Plump said...

I'm so glad you guys got out and that you had an enjoyable time. Yay!

DJ Kirkby said...

Geez, I love these pics, are you going to put a Maizie album together?

Napaboaniya.Elaine Ling said...

I know your concern about the 11pm and we're still out on a school night.
BUT given Maizie's condition, I'm actually glad for the 3 of you spending a good night out having some fun. I guess it's all right to do that once in a while! Dun stress yourself out too much gal!!

She's looking really calm and enjoying herself at Borders.

Anonymous said...

Oh, I'm SOOO glad you finally got out and that it went well! She looks pretty at ease in the Border's photos - it's so great to see her smiling again! Hope her confidence is boosted and things start getting a little easier for all of you. Hugs to you both!

Marla said...

You all make me feel so better about being out on the town with my ten year old. Our schedule is still the same. Up late and to bed late. She seems to be sleeping through a lot of the morning CVS stuff. Maybe some day we will get back to a more "normal" schedule.