Christmas Eve before Mass

Members of the clan before heading to Mass...

Nana and the Madigan grandkidlets.

LOVE this tee!

A Christmas gift from Mom and Dad.

While Mom was away...

While Mom was at UCLA with Áine, Ciara took this picture of Brendan before he headed to school for his class Christmas Party.

Ciara took this picture of herself before her Christmas Program later the same night. Note the lips. When Mom's away...

She's Home!

After 14 days in the hospital, Áine Clare returned home on the 16th with a PEG (percutaneous endoscopic gastrostomy) tube in her tummy to get her medications more easily in her. Yay! The medication regimen for Mom and Áine is off to a slow but steady start as we re-learn how to put meds in the g-tube and prep meds for the g-tube and keep the wound clean and shower instead of bathe. A little more time consuming, but we'll adjust, and with an assistant like Ciara it should be smooth sailing!

Thanks to Mary for the leotard suggestion! Nana is going to put snaps or velcro in the crotch to assist with changing and to keep Áine's hands away from the tube. (Crotch... such a yucksville word!)

Miss Áine Clare the night before the procedure in our very own room for the first time ever at UCLA!

The morning of the procedure.

Waiting to go to surgery. This was very interesting. I put "Sesame Street" on the telly which was at the foot of the bed. The speaker was at the head of her bed. And being the visually impaired child she is, she turned her body around toward the sound and "watched" the various monitors in her room. I thought it was an interesting display of her visual impairment, given that she can so often appear completely sighted.

A few hours after the procedure!

Áine Update

Fri 12/10/2010

This morning, John and I met with the psychiatrist and social worker assigned to Áine's case.

The psych's "dream plan" is that Áine be discharged from the NPH on Monday, go in for g-tube placement and be discharged from the pediatric floor on Wednesday. This seems unlikely however because of the GI doctors inability to look at the whole person despite the explanations given by many of Áine's doctors. We will allegedly have the final word on the g-tube situation by the end of today.

The back-up plan is that barring any unforeseen circumstances over the weekend, Aine will be discharged from the NPH on Monday.

She will have to see her neuropsychiatrist at UCLA every two weeks. She will be scheduled to see the head of the sleep medicine dept in an outpatient appointment.

I am struggling with the fact that until sleep and g-tube placement issues are solved, in essence nothing has changed except that there is now another medication for me to try to get in her.

Additionally, the nutrition/dietitian team at UCLA has switched her to Vanilla Elecare --five 8 oz. bottles per day. The cost of this of course warrants a third mortgage on our house, but if she has a g-tube then it is covered by insurance.

I am not so frustrated about the sleep issue as I am the g-tube issue. Because if all her meds were in her on a consistent basis, she would naturally be "knocked out" and then of course the positive effects on her behavior. But I guess that's too obvious, right?

In any event, that's the latest.

Oh, we were able to visit with her today. She was very sleepy and heading off for a nap because of the meds. They brushed her hair in two curly pig tails! She seemed happy to see us.

And a Good Time Was Had By All

Brendan's 18th birthday party went on as planned despite the absence of Miss Áine Clare.

A good time was had by all as we feasted on pizza and salad and cupcakes and enjoyed hot coffee and hot chocolate stations. Many thanks to Amy (who was unable to join us) for the heaters. They were much appreciated. So many people who have journeyed through life with Brendan were able to celebrate with us... therapists who became friends, friends who became family, and family who supports us still.

THANK YOU TO EVERYONE FOR LOVING OUR BOY!

Brother and sister before the festivities.

The Dad

The Birthday Boy!

Some of the group

Laughing Áine

While at Target with Ciara yesterday, my cell phone rang just before noon -- Áine's pediatrician. Long story short, I was to get Áine to the ER at UCLA post haste and have her neuropsychiatrist paged. He would admit her to the Resnick NeuroPsychiatric Hospital.

No question about it, despite knowing that she is in good hands and will be helped, it was a rough day as I missed being with Brendan on his birthday and had to leave my baby at UCLA with her not knowing what was going on. Parents cannot stay overnight at the NPH. In fact, visiting hours are quite limited. Mondays through Fridays 7-8pm. Saturdays and Sundays 2-4pm and 7-8pm.

She will be there indefinitely while the team stabilizes her medications and helps her with her self-injurious behaviors and such.

On a happy note, during our 8 hour ER visit, Áine gifted me with this moment of pure joy. Enjoy!

Beautiful, Beautiful, Beautiful... Beautiful Boy

Happy 18th Birthday,
Brendan Michael Madigan!

You entered this strange world on December 3, 1992 at 12:20pm weighing 7lbs 3oz.

From that point until now, you have been one of the most treasured gifts I have ever been given. I am blessed for having you grace my life. You have taught me and those around you patience, perseverance, and the ability to smile in even the most trying of times.

Your life has had more challenges than any person should have in several lifetimes and through it all you have made me and those who are open to your gift better people.

You have taught me the beauty of "squeeze, please", the importance of "I'll be right there", and the need to sometimes tell people "don't bug me". And a little"french fries (or cookies), please" never hurt anyone.

You are a protective brother to Ciara and Áine and far more tolerant of their sisterly intrusions than any other 18 year old young man.

For this and so much more, I adore you and I love you. And I thank God every day for choosing me to be your Mom.

Time for an Áine Update

(Love this picture!)

To put it mildly, Áine continues to be a hot mess across the board with school being particularly challenging to use a euphemism. She has lost several skills as well.

I spoke with Áine's neurologist today. Her EEG test last week -- which was brief -- showed no seizure activity during that 24-hour period. The doctor was pleased with the results because it rules out seizures as the cause of her sleep disruption. Not that she isn’t having them, just that they aren’t the cause of her sleep issues. To that end, she is referring Áine to a sleep specialist at UCLA since all conventional means to get her to sleep have been tried. She also removed the only “non-essential” medication to simplify Áine 's medication load to see if that will do anything.

Áine had an appointment late this afternoon/early evening with her pediatrician who we uncharacteristically haven’t seen for the past six weeks. Áine put on quite a nightmare of a behavioral show for her. Which is just what Momma wanted. Banshee screaming and head banging and hip hitting included. She will be emailing Áine's neurologist to see about getting Áine admitted to the NPI (NeuroPsychiatricInstitute) at UCLA to deal with her out of control behaviors. (Brendan was in there for two stints around the same time that Áine had her hemispherectomy back in 2003.) The plan would be to safely bring her off all meds and gradually add back what she needs. When this was done with Brendan, it took a while for the body and mind to adjust post-hospitalization, but he has been primarily golden since then. So I have hopes.

Her doctor suggested she wear a helmet because of the head banging and suggested some modifications in our home environment. Thankfully Brendan used to wear a helmet. It’s not pink, but it will do ;o)

A g-tube is being considered to get her medications in her more consistently.

She has pending appointments with her developmental pediatrician and neuropsychiatrist.

We are back to the pediatrician in a week instead of our usual two weeks.

Life goes on even with all this craziness. Praying for my little one, so she can be her happy, excited, smiling self again :o)