ClubMed UCLA redux

This is the latest in EEG hairstyles. She was happy they didn't wrap her head this time.

Áine and Mom are back home after an unsuccessful telemetry experience.

The morning of our admission through the ER, Áine seized a few times between 7:30-7:45am, 8:30-8:45am, 9:30- 9:45am, 10:30-10:45am, and then stopped as soon as she was connected to the EEG machine. So frustratingly typical of the wee babby.

We were discharged yesterday despite the team and our neurologist wanting us to stay longer until a seizure was captured. Unfortunately, as I expressed to all of them at the beginning, we couldn't stay longer than we did. Dad needs to keep his job after all.

Áine had a pleasant stay as usual. As for Mom, don't believe what they say on the UCLA Medical Center web site. ALL the rooms in the Mattel Childrens Hospital are not private.

So the next plan is an appointment with the neurologist on the 1st and we will talk about Digitrace at the time (at home EEG testing).

Thanks for the prayers and good thoughts. We still need them as we try to get a handle of Áine's seizure activity and the effects on her life. She returns to therapies and school in the coming weeks and we hope everyone remains patient with her during this confusing time.

Quick Áine Update

Áine and I are off to the ER at the UCLA Medical Center tomorrow morning. (Unfortunately this is the quickest way to get a bed in this urgent of a situation.) We have to arrive by 8am and the neuro team will be there by 10:00am to connect her to the video telemetry to track her seizures. While Áine's seizure activity has been increasing and is affecting most aspects of her life, she has been known to treat any stay at UCLA like a vacation. We refer to it as Club Med UCLA. So I ask anyone who reads this blog to pray, to cross your fingers, to call upon whatever source you need to, so that Áine seizes and our stay is brief and effective.

I will update when I can.

Thank you for the support!

Fellow Carpool Lane Drivers...

the carpool lane is not the USA equivalent of the autobahn. And even the autobahn has a recommended speed limit of 80mph. The speed limit on the freeways I frequent is 65mph. I drive 10 mph above that limit so stop honking your horns and flashing your lights and riding my back bumper. Thank you kindly.

The State of California Sucks

Excuse the lack of eloquent language in the title of this post, but to say that my life has been challenging of late is to put it mildly. It's hard. And of top of that I just got the call from my Regional Center services coordinator letting me know that both my children lost their state funding for their aquatic therapy which is so much bigger than most people know and we lost funding for Áine's pull-ups. Each child is left with only one State funded service and there is no guarantee that that service is safe. This is a major blow to our family. And the anger I feel is massive and I need to pray for some sense of relief since there is nothing I can do about it. And I suppose that is what angers me the most.

My Ciara

My wonderfully passionate and compassionate Ciara has many wonderful traits. One of her flaws however is that she interrupts me on the telephone for such important things like reminding me that next week's episode of "iCarly" is a new one or last week she thought there was a bird on our front porch. These sorts of things. Important stuff. I loath talking on the phone, so the only two people who I actually talk to this way are my Mother and my sister. They are accustomed to these interruptions which are very annoying as Ciara knows they can be.

I have explained to Ciara what is interruption-worthy and what is not. Broken limbs? Interrupt me. Cute skirt you want to get at Target? While important, not interruption-worthy.

That being said, I was on the phone with my sister yesterday moving from room to room trying to find a spot where we could talk privately. At one point, Ciara who had already interrupted us and slipped me a few notes, is hovering near the door. I give a shout out to see if there is something she needs. Oh, no, nothing, I am told while a note is slipped under the door. I ignore said note and continue the conversation. At some point, I bend to pick up the note and simultaneously tell my sister that it smells like smoke. Note informs me that Ciara burned a Pop Tart in the microwave so the house may smell like smoke. I fling the door open and there sits Miss Innocent on the couch eating a pb&j sandwich since the last Pop Tart had been burned and boiled and tossed in the trash can bringing about a lovely smell of burned Brown Sugar Cinnamon Pop Tart and melting plastic.

This. This is an emergency, Ciara. Smoke billowing out of the microwave is interruption-worthy. She thought it was steam. Why was the toaster pastry in the microwave and not the toaster, I ask. Well you see it was leftover from yesterday and we re-heat leftovers in the microwave. Ah, yes, I see. For how long did you set the time? 120 seconds. Ah, I further see. Instructions on box say microwave for 3 seconds. Close.

Ah, my sweet adorable, delightful, most awesome Ciara, you fill my life like no one else.

Photo was taken in September 2001 when the future Pop Tart killer was 2 years 10 months old.