The girl has spoken

I was working on Áine's "All About Me" poster for school with the help of big sister, Ciara. There are various sections to put photos and words and wonderful things that make up Miss Áine Clare. Under the heading "I help others by..." I suggested that we write something to the effect of Áine being a hard worker and persevering. With a look only a tween, and this tween in particular can deliver, Ciara said, "She's not that sophisticated, Mom. How about we write 'making people laugh'". And so it was written. How could I doubt the wisdom of Ciara? I think the picture below only proves her point about a clear lack of sophistication on the part of her 8 year old sister. Thank you once again, Ciara, for your clarity on all things sibling.

A tired, but happy, act of rebellion

Brendan emptied the contents of every carefully sorted bucket of toys in his room.

The boy, no matter how cute, is out of his ever-loving mind if he thinks anyone other than his own cute self is cleaning all this.

My Beautiful Boy

Looking more like himself...

He's home!

In a miraculous turn of events, Brendan was released from the hospital today. He is very tired and rather weak but has been cleared to return to school mid-week next week and can return to swimming and physical activity after the 28th.

He's such a brave boy.

Thank you to my dear friends for the supportive texts, emails, and phone messages. It's amazing how much they heal a hurting heart.

Yet another update

Tues 9/15/09 4:45pm

UCLA won't take Brendan. :o(

They are trying to get him moved to Childrens Hospital Los Angeles.

Update from below

Tues 9/15/09

Brendan is being transferred to UCLA Medical Center.

Prayers for Brendan

John took Brendan to the pediatrician's office this morning to see the doctor on call as ours is on sabbatical for September. Brendan was experiencing coughing and a fever over the weekend. Very early Monday morning he fell several times trying to get to the bathroom and kept saying "ow" which is a 10 on the pain scale in Brendan-ese for those who know his history. Shortly after the doctor entered the room, she called me and expressed concern over possible pneumonia but this was secondary to her concerns over what she called some serious neurological challenges. While we were on the phone, Brendan attempted to stand and fell to the floor, hurt his arm, and split his lip and banged his face and lip. She called me back and said she was sending for an ambulance to take him to the hospital.

Long story not so short, after a lumbar puncture it has been determined that Brendan has meningitis. The early indicators are that it is not bacterial which is good, but the docs can't confirm that until the cultures come back in the next 24-48 hours. I have been talking with the docs via phone on and off all day and Brendan has been admitted for at least overnight and at most 3-4 days. His length of recovery depends on a return to his typical neurological level among other things.

The doctors have said that he is in significant pain and is on a morphine drip. He is also being treated for pneumonia.

Áine’s annual appointment with her neurosurgeon and her 72 hour telemetry testing have to be postponed while we get Brendan through these illnesses and started on a road to recovery. Ciara was devastated to hear the news about her beloved Bubba and this coming so closely on the heels of the summer we had with Áine has made for a challenging time for my sweet girl.

In the mean time, the Madigan Clan thanks those who read this blog for their prayers, positive thoughts, and all that good stuff and hopes that you will understand if our emails, texts, and phone calls are sparse while we focus on the health of our kidlets.

"While we try to teach our children all about life,Our children teach us what life is all about." ~ anon.

The Red Plate

John and I received the red plate as a wedding present almost 19 years ago. We used it like crazy, now its appearances are few and far between. This year each kidlet used it the night of his or her Back-to-School dinner. Brendan's back to school dinner was BBQ chicken legs and potato salad. The latter being something he would prefer to eat for breakfast, lunch, and dinner as opposed to the "on special occasions only" rule.

That being said, I put his plate on the table first so it would have time to cool. I then called the clan to the table. Brendan raced to the table first, said grace, and then piled his spoon high with the aforementioned potato salad. I halted him mid-hoist and instructed him to wait until the rest of the family finished the 10 foot trek from the living room to the dining table.

"Oh, crap," my primarily non-verbal baby-faced boy said on a sigh.

I kissed him on the top of his red haired head and thanked him for not choosing any of the other oft-used expressions in the house. Love this boy.

Brendan's First Day of School

Doesn't he look just thrilled? Pictures can be deceiving. The boy had been up since about 3:00am eagerly anticipating his 7:00am bus pick-up. By the time I took this picture, his morning meds had kicked in and sleep was coming fast. Have fun at school, Brendan!

Áine's 1st Day of School

Miss Áine Clare's first day of second grade.

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

First Day of 6th grade

Ciara - age 10 years 10 months - 6th Grade

Summer Randomness

This blog needs some updating! Here are some random summer shots...

Brendan and Ciara at the Los Angeles Zoo.

The cake Ciara made for Momma's birthday. (She ran out of the letter "m".)

Ciara took her first trip to the Norton Simon Museum and was thrilled to see that her most beloved piece of art is housed there. Little Dancer Aged 14 by Edgar Degas. She was thrilled. This picture was taken in the sculpture garden.