Áine's Anniversary

September 2, 2009

Dear Family and Friends,
On this date in 2003, Áine Clare underwent a right hemispherectomy. She is a funny, squirrelly, persevering 8½ year old school-loving girl. More freckles than last year and some very big kid teeth grace her ethereal face.

She is eagerly looking forward to returning to school tomorrow and we are fortunate that she will have another year with her most awesome teacher! After 8 years, we were finally able to make some changes in her therapy schedule and she will now be able to attend school longer on two of the five days each week. We are so glad that so many schedules could come together to make this happen.

Áine remains the family’s social butterfly. She eagerly reaches out her hand for most who come in her vicinity and they quickly learn that a tap on her nose is in order. At her most recent stay at ClubMed UCLA, she greeted every nurse, doctor, intern, fellow, care partner who entered the room. Such a polite girl :o)

Áine’s days are filled with school and therapies and Sesame Street and music and smiles and laughter. Yes, we’ve had some challenging times this past year, but Áine is a glimpse of heaven on earth.

She continues to participate in occupational therapy, physical therapy, speech therapy, augmentative communication therapy, and swimming at the Rose Bowl. However, funding for the latter was just cut because of budget cuts in the State of California. She attends Ability First on Saturdays with Brendan and goes two afternoons during the week as well.

Áine continues to be a great communicator. Through vocalizations, gestures, and her Dynavox Minimo communication device one is hard-pressed not to be able to figure out what Áine is trying to communicate.

As you know, Áine has had seizures since about one year post-op. This wasn’t a surprise. It’s not the end of the world. They have been manageable. However, this summer she did have quite a setback as her seizures increased in frequency and duration. She had some regression and a general change in disposition. She was in bed 20+ hours per day and lethargic and irritable. This past week or so, we have seen a return to our affable Áine Clare. It will be a slow return, but if anyone can do it, Áine can.

It has been determined by the neuro team at UCLA that Áine’s surgery in 2003 did completely disconnect both hemispheres. This has been a bit of a debate for a few years now. This begs the question then as to from where her seizures are emanating. Logic would dictate that they are coming from the remaining hemisphere. However, since adorable Áine goes into vacation mode any time she is admitted to the UCLA Medical Center, she does not seize, and therefore nothing can be captured on the EEG. To this end, she will be scheduled for an at home 72 hour EEG testing called Digitrace in the coming weeks. Hopefully, while going about her typical daily routine she will kindly have seizures which will help pinpoint things and a plan - if there is to be one - can be made.

We are off to the endocrinologst in November as it is believed that Áine has some issues in this area.

The following bears repeating from years past. Áine truly is not entirely of this world. At least to me. Her perseverance has enabled her to accomplish much in her relatively short life. Áine is much loved by her family and friends and therapists and she loves all of you in return. She remains a living, breathing, daily reminder that miracles can and do happen. How good God is to us.

We thank you for your continuing good thoughts and prayers for Áine and the rest of our family. You are in our collective prayers of thanksgiving. Please know how very much we treasure each of you. You are held close in our hearts.

With much love,
The Madigan Family
John, Alexia, Brendan, Ciara, and Áine Clare