I am not exaggerating when I say that I typed up four pages of notes for the grandparents who will watching Charlie. This includes his schedule of daily meds/therapy rotations/etc, his medical history, and emergency contact information. A note for those of you starting the special needs journey: type up your child’s medical history and keep a copy with you. That way, you can just hand it to the hospital people if you have an emergency situation. I can’t remember where I read that, but it is SO helpful.

I have nothing packed. I haven’t got a swimsuit or a delicious pile of paperback novels. I am NOT prepared. Tomorrow I will try to run out and get these things, but I’ve also got to get one of Charlie’s prescriptions refilled and we have an appointment with the opthamologist in the big city, so it may or may not get done. Hello? I haven’t been to the opthamologist in two years and he’s been twice in the past year. I have GOT to start taking better care of myself. No matter about the stuff–I have a couple of books on the shelf I could read. That, plus some rum and diet coke and I’ll be good to go. Honestly, I just like sitting on the balcony reading more than anything else.

Luckily, my MIL lives down the street, so she’ll be checking on the house, watching the animals, etc. She and my parents are going to split the time taking care of Charlie, which will be interesting to say the least. I’m going to do a little cartoon evil cackle when I get back and they’re completely whipped.

– – – – – – – – – – – – – – – – – – – – –

We were in the big city today to see Charlie’s very fancy cardiologist. If you’re new to the party, then let me tell you that Charlie had an un-diagnosed heart arrhythmia that almost killed him. All of his current medical problems stem from this. First we did an EKG, which is standard operating procedure. Then, they said we needed an echo to look at the hole he has in his heart. At this point I complete freaked out because I had NOT been worrying about the hole in his heart. I felt certain that forgetting to worry was going to bite me in the ass. I was wrong. The hole had closed on his own as they had predicted. Also, Charlie was eerily fascinated by the glowing TV showing curious George. Other than trying to eat the nurse’s hand, he was quietly transfixed by PBS.

The doctor is actively interested in seeing if Charlie still needs to take medicine for his heart arrhythmia. Many children outgrow tachycardia, but Charlie was especially attached to it before, so there is a chance he’ll require surgery when he’s older. To give his heart a little test run, the doctor wants to stick a probe down his esophagus to see if they can cause him to go into tachycardia again. I googled it, and the procedure is called Esophageal Electrophysiologic Procedure. It doesn’t sound fun, but I think we can handle it.

Additionally, Charlie kicked complete ass in therapy this week, which is just what I needed to see.

This may be my last post for about a week, so if you don’t hear from me it’s because I’m enjoying the sand and the sun (or, alternately, the shade, cable TV, and a rum and diet coke).

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  1. And what am I going to do for my Charlie fix for a week???? ARGH!!! I feel the withdrawal symptoms already.


  2. I hope you have fun and are able to relax a bit! It’s important to take care of yourself–Charlie needs you–and besides, you’re still a human being w/ needs! 😉

  3. HAVE FUN!!!!! I am so envious! Drink a rum and coke for me, okay?

  4. Small Town Girl says:

    Have a great time! Try not to worry and relax and read your books all you can.

  5. Mannyed says:

    Have a fab time soaking up sun and sand (and rum and cokes)!! Charlie “The OT Ass Kicker” is in very capable hands.

  6. Can I PLEASE go with you? Ah, the beach with a drink in my hand is JUST what I need! :) I hope you guys have fun! And, it will be great to get away for some adult time!

    Hugs – Tiff

  7. Have fun on your trip! I’m so jealous…the only time I’ve been away from our kids was when I was in the hospital having the next one, so I don’t think that really counts. I’m dreaming of the day when I won’t be pregnant or breastfeeding so that my hubby and I can go somewhere alone.

    How great the Charlie’s hole closed on its own. Emmaline has a hole (transitional AV canal defect) that will most likely need surgery when she is between 3 and 5. We’re praying it will close before then. So far she isn’t having any issues and I forget she has the hole most of the time. We’ve been blessed so far.

  8. Haz Bien says:

    Enjoy you’re time! :)

  9. Haz Bien says:

    Urgh. Your time, rather.

  10. White Hot Magik says:

    Enjoy the rest. Don’t feel guilty one bit, although you will because we always do. ; ) I’d say I am jealous, but if anyone deserves this it is you! HUAH on the therapy kicking butt and the arrhythmia closing.

  11. Princess Abigail says:

    Bonnes vacances!!!! You so deserve to have some rest time to yourself – just don’t forget to bring us back loads of pictures!!!

  12. Elizabeth says:

    I hope you are having an amazing time!! :)

  13. Oh it is high time you went on vacation. I hope you’re having a fantastic time! sounds like charlie is in good hands–hope he does okay with that esophagus procedure, when will that be?

  14. Barbara says:

    I hope you’re having a wonderful vacation. I’m looking forward to your return though because like someone else said – I need my Charlie fix!

  15. I hope you are having a GREAT vacation!!!!

  16. Anonymous says:

    and FINALLY i can leave a comment…please take care of you…Charlie needs you…

    ♥~♥ :oD the shortest distance between two people is a smile… :oD ♥~♥

  17. therextras says:

    Happy 4th, Katy. I enjoy your blog very much.

    Hoping you don’t mind, I tagged you for an “award” at my blog. Go there if you want to pick it up, or not. I think the worst that will happen is that a few more people might visit you while the post is on top.

    All the best, Barbara

  18. Antonella says:

    I’ve been away for a while! You’re going on vacation??? That’s great!! I totally don’t think you’re crazy for all the notes though, I still run through lists of things when I leave for a few hours and Dante is with Mag!!

    The video of you guys is adorable! I can’t believe how big he is!

    Hope you have a great vacation!