Catching Up

On this first day of July, I thought I’d take the few minutes I have this morning and give a general update on the clan.

My apologies for being remiss in emails and in contact in general. I am one of those birds of late who when she says she hasn’t any time, she truly hasn’t any time. So here goes…

Áine
Because of Áine’s increasing seizure activity, one of her current anti-convulsants has been increased. This leaves her very tired and irritable with some squirreliness thrown in for good measure. Hopefully we will see her system level over the next couple of weeks. If the increase in meds is not successful, she will be admitted for a video EEG and for those of you who have been on our journey long enough to remember, I usually refer to that as Club Med UCLA as the darling kidlet is so busy smiling and greeting everyone who enters her room that her brain doesn’t have an opportunity to seize.

The team at UCLA is taking another look at the results of her previous brain surgery in 9/03 to see if any further surgery is a possibility. I will keep you posted.

Her triglycerides are entirely out of whack despite a lack of food and she continues to gain weight. She has tested negative for most of the things one would suspect as culprits. But since when do any of my kidlets do anything considered the “norm”? We have been told her body does not process nutrients the way ours do, so we shall continue with this leg of the journey. Next step is the endocrinologist appointment in November.

She finished the school year on June 18 and started summer school the following Monday. Áine’s summers are little different than the regular school year as there is no vacation from therapy.

She thoroughly enjoyed Nana’s brief trip in June to celebrate the end of the school year and last week took a trip to the Santa Monica Pier with Ability First.

Ciara
Ciara remains one of the most incredibly awesome people I have ever had the fortune to meet. Our summer to date has been a challenge and she has been plugging right along with me. She is now officially a 6th grader. This is apparently her mantra until school re-starts for her on September 1. Not a day goes by that I don’t hear this declaration and in case I missed it, it’s posted on her dry erase board lest anyone forgets. She waxes poetic about being a tween and the need for makeup and a cell phone. Dream on, buttercup. Dreams are good.

Nana and I were most happy to attend the end of the school year awards ceremony where Ciara once again earned First Honors. She was also awarded the Character Counts – Trustworthiness certificate. And a few others thrown in for good measure.

She enjoyed her annual week of swim lessons and has one more in the middle of July.

She is looking forward to her next CBT group session in another week as summer is ripe for an increase in OCD activity. And she is very much looking forward to Auntie Kat’s visit next week.

Yesterday during Áine’s speech session she brought her sketch pad and sketched various moments of her squirrely sister’s session. She also drew “The Many Faces of Áine” – seizure faces included. Later that evening during Brendan’s session (see more below), I was not able to stay as I had squirrely sister who would have none of it, so she took notes for me so I would know what happened during the session. How fantastic is this girl? And none other than the fashionista herself helped choose frames for Mom’s new and much-needed glasses.

Brendan
The lad finished school on 6/19 and we celebrated by picking him up at school that afternoon and heading over to Fuddrucker’s. Brendan’s all time fave place to eat. Our local eatery closed about 5 years ago and the boy has been in some serious mourning. There is one near his school however, so after picking him up and hearing from the staff how wonderful he is (but of course) and seeing his Certificate of Achievement for APE (adapted physical education – go Brendan!) Nana and the kidlets and I went to Fuddrucker’s. A good time was had by all.

Brendan is enjoying his second week of summer at Ability First. Summer school starts on the 6th. And once completed, he returns to Ability First for the rest of the summer until school starts on September 8.

He is happy to be back with his beloved Amy-fish and last night during his session with her even tried to help her win at a fishing game they were playing with Ciara.

Brendan was invited to the annual sleepover at Ability First later this month. He always enjoys himself there. Áine was invited, too. This should be interesting.

John
John continues his recovery and is tentatively scheduled to have his shoulder/arm contraption removed mid-month. At that time, he will wear a sling only and start physical therapy. His days on the Metro train continue.

Alexia
Hmmm… I did write a blog about me, but the tone seemed too different for this blogspot and I hesitated to post. I may reconsider and post it later. I have to think on that. In the mean time, I spend my days taking care of my wonderful family and have watched a few movies as I lie motionless on my couch in the wee hours of the morn. “Taken” -- now I love me some Liam Neeson. However, what is with men and the need to cover the grey? I don’t understand it. And who knew the entire Albanian underground were near-sighted? “Gran Torino” – ACK! Cliched, predictable, and if Clint grunted or growled one more time I was going to put my foot in my telly. “Frost/Nixon” -- I think I was too exhausted to appreciate it. “Revolutionary Road” is waiting for me. And kudos to my Suns for getting rid of Shaq. I never understood that acquisition.

Stay tuned…