Overheard at the Infirmary

"Mom, you know what's idiotic?" asked the Fashionista, her words punctuated with disgust.

"What?" the distracted Mom replies.

"Bob Mackie is selling a 3/4 length sweater on QVC with jewels. You can get that kind of sweater at Target and bejewel it yourself!" And in a huff she returned to her sick bed.

Better Luck Next Time

Áine and Mom are home from UCLA after what was supposed to be a 5 hour growth stimulation test which followed a night of fasting. After 4 failed attempts at trying to find a workable vein, it was determined Áine is dehydrated and the test has been rescheduled for Mon 12/28/09. So we are home now with two sick older siblings.

Thanks for the good wishes!

The Altar Server

Today was Ciara's first time being an altar server at Mass. She did a beautiful job.

Perspective

My children never cease to amaze me in their ability to teach countless life lessons to me. Today it was Áine’s turn to teach me. And she chose a lesson on perspective.

As some of you know in the midst of her myriad health struggles this year she has lost more than 75% of her hair. It’s probably more than that after tonight’s hair washing in the sink – thank you neon pink cast :o) I was saddened to see even more of her beautiful long red curly hair wash down the drain and fill her comb and fall on the floor. I debated whether or not to just cut it all off. Would that make it worse? Amy’s words to Jo in Little Women when she sold her hair filled my head… “Your one beauty." (I've always laughed at that line.) I know that Áine is more than her hair. That’s obvious. But her hair is part of her. That there is no denying. It’s almost a trademark. But so is that delicious giggle of hers and that inspiring smile. And so as my youngest kidlet sat on the couch laughing heartily at the latest episode of "Sesame Street" for the 4th ( or was it 5th?) viewing today, I remembered it’s only hair. Just hair.

When one door closes another door opens; but we so often look so long and so regretfully upon the closed door, that we do not see the ones which open for us.
Alexander Graham Bell

Thank you for opening the door for me, Áine Clare.

The Birthday Girl

Happy birthday, CIARA MAIREAD!! Eleven years ago today at 5:20pm weighing 5 pounds, 2 ounces and measuring 18 inches long this wonderfully compassionate, passionate, insightful, thoughtful, funny old soul graced our world. How blessed are we!

Pretty in Pink

Miss Áine Clare seems to have broken a bone in her heel. Back to the ortho the day before Thanksgiving.

An update

Sorry for the delay in getting this update prepared. I was held up or 6+ weeks waiting for some lab results.

NEUROLOGY:
Originally the results of Áine’s 72 hour telemetry came back negative for seizures which seemed impossible. However after viewing some video of the events, it has been determined that the seizures have a brain stem onset which are difficult to see on a scalp EEG. A new medication has been added to her regimen. It does have a sedating effect so we are hoping she will adjust as we titrate slowly.

Áine is also experiencing events that fall under the category of autonomic phenomena -- sudden episodes of flushing, sudden episodes of pupil dilation (mydriasis), sudden episodes of pupil contraction (miosis), pallor, the inability to sweat (anhidrosis). She had an unfortunate bout of overheating a few weeks ago so this will need to be closely monitored.

ENDOCRINOLOGY:
We finally heard from the endocrinology department yesterday. Áine's test results are in and overall she is in normal range except for two areas. There is an elevation in one of the thyroid tests that they will monitor.

Her major issue is very low levels on the tests administered that measure growth factors. She will be having what's called a growth hormone stimulation test which is the gold standard for any diagnosis in this area apparently. She is scheduled for 8am on Mon 11/23 at UCLA and it's a 4 - 5 hour procedure. Results will be ready (allegedly) two weeks later. The doctors do feel she has a growth factor deficiency, but need this test to confirm. She can't eat or drink after midnight and will be given meds intravenously and have blood drawn every 30 minutes of the multiple hour procedure. They suggested I bring DVDs for her. Looks like the iPod batteries will be getting a workout :o)

GI:
This is a new component to Áine’s testing. She is being referred to UCLA for a barium swallow and some sort of scoping as a GI issue may have been overlooked all along in terms of Áine’s cessation in eating which is easy to do given all that has been going on with body of late. She has become increasingly challenged when it comes to food and even at times when drinking her bottle. She gags, vomits, and has choked twice in the past three weeks. Using her Dynavox Minimo, she has indicated now more than four times in the past month that her throat hurts. She has been put back on her specialized formula and continues to lose her hair :o(

Her barium swallow test is scheduled for Mon 11/16 at UCLA at 12:45pm. No food or drink after midnight. Hopefully a few hours at school will prove to be just the distraction she needs :o)

Orthopedics:
Áine’s leg braces were causing some fairly serious wounds and have since been adjusted. However she seems to have done something to her right leg (the unaffected one) over the past few days and cannot bear weight on it. Looks like the scheduled visit to her orthopedist on Monday came just in time.

Áine is such an amazing girl. Hopefully all these tests will bring answers. Thank you for your continuing prayers and good thoughts.

A few quick notes on the older kidlets… We are still working on getting a hearing test scheduled for Brendan who is doing wonderfully at school and everywhere else! Such a happy boy he is.

Ciara is joining big brother’s swim team starting this weekend and is looking forward to being an altar server at Mass for the first time on the 15th.

Slices of Life

Ciara entertains little sister at the doctor's office.

The sisters!

Brendan and Amy with the sentences he dictated to her about a horse. Awesome job, Brendan! He usually says things like "The horse is brown." Which is a milestone in and of itself, but these family sentences were spectacular!

Brendan and Silvie and Amy