Home

Kathryn is home from the hospital, has been for two days, not that I wrote to tell you about it because apparently the nurses and doctors and orderlies and free cable did not follow her home and now if something needs to get done, there's no longer a little button I can press. And at home, all of the rules that were bent or broken over the weekend have to slowly mended, which means that I've spent an amazing part of the last two days telling the twins that they can no longer sit on the couch with bowlfuls of peanut M&Ms and watch The Little Mermaid.

Kathryn's second night of EEGs came back with the same reading as her first night, very active and very spiky, very ripe for more seizures. So now we begin a new phase of her childhood, the one in which she's epileptic, the one in which learned people tell me that they don't expect her new medicine to affect her school work too much, or to make her that irritable. (I have learned that "irritable" is not the same as "irritating," which is not currently a treatable condition. Shame, that.)

Kathryn herself is mourning the loss of her loft bed, and is now sleeping on the floor, in a sleeping bag, which she says is just like camping without being outside or the inevitable screaming. On the plus side, Camilo greeted her at our doorstep early this morning, holding a new Webkinz and looking like the most hopeful suitor in the history of second grade. I think he had even brushed his hair.

Kathryn and he named her new little animal Lucky.

Comments

[Susannah]

I am so glad to hear that K is home!

[You can call me, 'Sir']

It's wonderful to hear that all's well.

Camilo: Know why you're OK?
Kathryn: Why?
Camilo: The Jesus.
Kathryn: DADDY, HE'S DOING IT AGAIN!

[qwyneth]

Hooray! I'm so glad she's doing well. I'm thinking of you guys, and hope the transition onto the meds is as smooth as can be. :)

[Anne Prince]

LOL Sir - that was my first thought as well!!!!

So glad to hear that things are starting to get back to "normal", whatever that may be.

[Jennifer]

Kathryn is such a trooper she will be just fine. Sending lots of love to the whole family.

[Angela]

Camilo, sounds like a real sweetie, so incredibly adorable. I know this must be a very strange, stressful, scary time for all of you, not knowing what the future will bring.I hope you get all the support, information and guidance to help you through this new journey. Sending good thoughts and prayers your way. Please take care.

[Erika]

So glad you are home! So glad too my boys no nothing of these Webkinz.

[dregina]

God bless.

[Swamper]

I, too, am happy that Kathryn's back, but, um, what gives with the permalink? "cmon-boobies"? You got some 'splaining to do.

[Colleen]

I'm glad she's feeling better. Good luck to you guys as she starts her medication.

[loren]

privilege withdrawal is always the worst! except it's the parents that get the shakes and need to be medicated, usually with martinis

I don't know if I mentioned this, but my nephew was epileptic for the first 6 months of his life and was on medication. They weaned him off and hasn't had a seizure since. I hope that's the case with Kathryn!

[Eileen Kelly-McGeever]

Brian and Sharon,

Just found out through mpom. So sorry to hear about your ordeal. Glad Kathryn's doing better. I hope her improvement continues.

If you need anything please let me know. I think we live close, don't we? I'm on Forest near Watchung.

[Liza]

I'm so glad to hear that Kathryn and the rest of the family are on the mend. Good luck with managing the epilepsy -- it may turn out to not be that big of a deal. I hope so!

[Kelly]

I'm so glad your family is back home and you can get back into a routine for your family. Perhaps, instead of just the sleeping bag, you could put the mattress on the floor for her to sleep in? 6-8" shouldn't be a problem for her if you have carpeting. The good side of this (yes, a good side) is that every member of your family will have a new strength and new compassion for others with medical problems. I have seizures (low blood sugar), though not often, and the most recent one was in the kitchen in front of my kids. My oldest son, 3yrs, wasn't scared but was definitely concerned (a hard emotion for someone his age) and kept trying to help me (hubby was there to help). I was wracked with guilt over my little man having seen it, but realized later that he'll grow up understanding life, health, and caring more and he'll be more in tune with his compassion.

[T]

Well, I've never commented on lookydaddy before, but I have to be another person telling you I'm so glad she's OK. You must have been so frightened. I'm sending all my hopes that this is easy to manage, and crossing my fingers for some luck and a quiet, uneventful period for the Lookydaddy household.

[Sarah]

I am just a lurker here who is checking in because my mom told me about Kathryn (I have two-year-old twin boys, and I think you are hysterical). Your precious daughter is in my prayers. Welcome home!

[Nell]

Glad everyone's home again, even if you couldn't bring some nurses with you.

[paulette]

Ugh. So sorry you guys had to go through that. When my 3 yo was 3 months old she had a massive seizure (20 minutes!) and had the absence of control over the left side of her body. Completely f** terrifying. Noone had any idea what the problem was and every doctor (and their dogs) were called to consult. I have a well worn love for the medical establishment, but that was more drs per square inch than I am really comfortable with. But my view is colored, there were some moments of levity during our week in the hospital. Like when the neurosurgeon told me "don't listen to anyone but me!" That's the closest I have ever come to feeling like I had been written into a Simpson's sketch.
In the end, the theory was that her behavior reflected a stroke--undiagnosed b/c it happened while baby was under sedation (for the MRI--see, more fun lies underneath!!). This was followed by the seizure. She was put on anti seizure meds for 5 months.
She is 3 now and is absolutely fine, if you consider the most strong willed individual to ever walk the earth "fine".
Having been through the medical grinder, I learned to question all medical directives, as a lot of the instructions we were given were based on medical routine rather than any actual findings.
All that said I'm glad you are home now-good luck--we'll be thinking about you guys.

[chelle1464]

I'm just catching up on these past several days and my heart has broken for you guys. I am so very glad that things have turned around a bit from the horrid scare. I still don't think it's fair that Kathryn, you, Sharon and the girls are having to go through this (I know fair's got nothing to do with it, but so what?). Looks like you're getting some good advice from your blog peeps. Sending my love and hugs to your family, and special kisses to the little wired one.

[FishyGirl]

Lucky, indeed. That Camilo is a sweetie. So, so glad Kathryn is doing better.

[Amber]

Continued prayers for you guys as your family recovers and moves forward.

Kathryn, what a cutie!

[Teri]

Oh, yes, privilege withdrawal is the worst...you'd almost rather clean up poop behind the couch than listen to the whining that goes on when on-demand movies and bowlfuls of peanut M&M's are no longer permitted on said couch.

Good luck, and welcome home Kathryn!

[Burgh Baby's Mom]

You better keep an eye on that Camilo. First come the Webkinz and combed hair, then the flowers and candy, and the next thing you know he's taking your little girl to the prom in his Dad's 1978 VW van. Bad things happen in VW vans. Don't ask why I know that. I just do.

So glad you're all back home :-)

[amy]

So happy to read that she's home and naming Webkinz. Big hugs to all of you.

[Kate]

Any hope that she'll outgrow it? A friend of mine had seizures as a kid (though I admit I know no more details than that) and hasn't had any since he was 7 or 8.

I'm glad Kathryn (oh how I love that you spell her name right! :) ) and the Peanut Butter M&M Police are home.