Working It Out

What She Wore: blue jeans; long-sleeve gray LSU t-shirt; grey houndhooth mary-jane tennis shoes with two buckles. I swear I look nice some days–I just don’t blog on them.

Well, I yesterday was a pretty scary entry. I apologize for that, but sometimes this stuff just comes up and I can’t figure out how to broach it. Today was a better day. Charlie had apparently out-grown his dosage of anti-seizure meds. We’re increasing over several days and I’m already seeing major improvement. Things were getting bad and I was scared out of my mind. Additionally, Charlie’s occupational therapist put me in touch with a mother who’s going through the exact same thing I am. She had twins born at twenty-nine weeks and one of them lost half of his brain matter to a bleed. He’s got hydrocephalus, a shunt, seizures, cerebral palsy-the whole enchilada. Thing is, he’s not doing too bad. The doctors told her that he’d never be able to suck a bottle much less have any sort of normal life. At almost two, he’s saying a few words, crawling, learning to walk, and getting into fist-fights with his neurologically typical brother. Not half bad for a kid who wasn’t supposed to be able to eat on his own.

I’m doing OK–I’m just a little shaken by the sudden develpment. We’ve been working on the house–painting is largely done and now I’m scraping a popcorn ceiling that I don’t like. I’ve got tons of fabric that I hope will become curtains and I’ve got new knobs selected for the kitchen.

The celebrating never ends in the Crescent City and the Hub and I have been kept busy with LSU festivities and now we’re gearing up for Mardi Gras. I’m not exactly sure when people rest around here.

And Charlie–well, Charlie is doing pretty freakin’ great. Now that the seizure thing is getting under control he’s been an absolute delight. He’s laughing, smiling, vocalizing like mad, and is really interested in the world around him. Please don’t stop praying or sending good vibes for my little miracle man. Uncontrolled seizures can be absolutely devastating. I get scared if I think about it for too long. I want to kick this latest development in the arse and get on with business as usual.

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Comments

  1. Hi Katy,

    Phewww…I’m glad things are looking up for your little man. I can’t even imagine how scary siezures must be. I’m glad you’re doing better, and show us lots of pics of the house when its done. Keeping you and your family in my prayers always.

    Irene

  2. Nadine Hightower says:

    You’re welcome!

    And you’re right…Charlie is doing pretty freakin’ great. You are doing a good job. Sure it’s scary but so is everything else we do in life.

    Hugs!

  3. Small Town Girl says:

    I’m glad to hear things are starting to look up again.

    My mom and I are still thinking about coming to New Orleans for a little vacation, but she’s either not that into it or something. Every time I say something to her that we need to decide she just says yeah and doesn’t do anything about it. Annoying.

    Have fun with your festivities!

  4. I am so glad to hear that little Charlie is doing better. I do NOT know how you deal with it, you are a strong strong person, that has to be so scary.

    Glad you made it by to catch up on my latest – I had forgotten to congratulate you on the LSU victory!!

  5. What a cutie you have there, Katy! Just like his mama! You are doing great and so is he! Hang in there, this is just a hump in the road of life!

  6. Whew, just got caught up. Don’t apologize for what you write; sometimes you just have to tell the scary stuff like it is. I’m glad to read that everything is “working out”. Have you gotten together with the other mom who goes through a lot of the same stuff? I hope she can be someone you can talk to who can relate better than most people. You guys keep on truckin–and have fun on the house. Can’t wait to see the progress.

  7. mumof3boyz says:

    You are so strong and brave. I am praying for all of you. My MIL’s sister was born with Downs, they said she wouldn’t live past a year. She is 42 and doing fine. Dr’s don’t know everything.

    -S.

  8. HI KM,
    Of course you’re scared. I’m praying for you and your family.

    Charlie is a beautiful baby.

    Betty

  9. Thank you for updating us…and putting that cute picture too! As if your life isn’t stressful enough, you have to scrape popcorn ceilings??? Yuck.

  10. Girl… I’m praying hard for you, little Charlie, the Doctors… I was so glad to read that the meds are helping with the seizures. It can be very scary no matter what the age.

    I can’t wait to see some pics of the finished or in progress house you are doing. I like doing projects like that!

    Big Hugs to you!
    Tiffany

  11. Hi there! I am glad that the med adjustment seems to be working! I know you must have been completely freaking out! All you can do it just roll with what comes and deal with it the best way you know how.

    Keep on keeping on! Y’all are in my prayers!!

  12. Anonymous says:

    Well, it just shows you how long it has been since I dropped by your site. I didn’t even know you had left spaces.

    Anyway, I’ll try to get back by here to catch up on the little one.
    Take care,
    Billy
    http://spaces.msn.com/quadius/

  13. Hey Katy. Sorry to hear about Charlie’s new development but glad ya’ll are managing to get it under control. I love and miss ya. Can’t wait to meet your little man. That kid is so cute and what a fighter!!!

    God bless the USA, SEC, and the LSU Tigers!!! Geaux Tigers!!!

  14. I’m glad the seizures are getting under control now, I can only imagine how scary that must have been.

    Charlie got so big! I am amazed! He is adorable!

  15. The shoes sound adorable! Where are they from?