Easter 2009;)

On Easter Sunday, we spent it with family in Rancho Palos Verdes. David and Lisa hosted an awesome Easter lunch and dinner, there was plenty of food and kids everywhere, the house was full of love. We had fun watching the kids egg hunt and it was even more fun when it was time for the Aunties and Uncles to find Easter eggs. It was the funniest thing! Frank was in Honduras for two weeks with his Dad and family enjoying the Easter celebration. In Central America Easter week is celebrated from Thursday to Easter Sunday and it is one of the most celebrated holiday among the locals.

Thank you God for the love you continue to give us.

Growing fast and strong!

It has been 14 months since the hemispherectomy surgery and still NO major seizure activity:). Ali'i is 14 years old and getting BIG, he grew a few inches in the last six months and it's a matter of time before he is as tall as me:(. Ali'i is meeting more milestones ahead of schedule and making a successful recovery. He is a loving and affectionate boy, he flirts with the aides in school and they spoil him rotten(which is a good thing);) Ali'i is one of the happiest boys on earth. We thank God for watching over us.

Update

April 8- Ali'i had Gait analysis study at Childrens Hospital Los Angeles (results will be given at a followup appointment in June).

April 13- Met our new Neurologist at Cedars Sinai Medical Center, Dr.Nancy Niparko.

*We are still adjusting his seizure medications. Right now we are trying to control the 'eye fluttering' and 'nocturnal body twitching',these are all possible signs of continuing seizure activity in the non functioning hemisphere (if this makes sense), but to confirm seizure activity, it would require a another hospital stay of testing (haha no thanks, been there over that!). In the last year Ali'i went went from four to five medications and today he is down to two! After 12.5 years of intractable epilepsy, I think I can live with two:)

Amen, Lord.

June 2008 - Ali'i sixth grade graduation

In June 2008, Ali'i graduates from Highlands Elementary School in Saugus. He sat through the graduation with no problems...this is the same kid who wouldn't sit for more than 10 seconds in a room or anywhere else for that matter. As you can see from the looks on his face he is one happy little boy (four months post-hemi surgery).

After graduation he went to Disneyland to celebrate with his classmates....then it's off to junior high:)

Memory and Image

Well it's been a months since i've updated the blog and I apologize for the delay. Ali'i has made a remarkable yet speedy recovery. He is enjoying life in a seizure free world and running around in an unrestricted environment. It's amazing how God has blessed us. Ali'i enjoys the outdoors, going to the malls especially the Grove,the Hollywood Bowl in the Summer time, walking, hiking and of course getting pushed around in that big blue convaid or what I call the "mini hummer":)

At some of your requests I finally finished uploading numerous photos and transformed them into a montage for your enjoyment!!!!

*The first sequence of photos are images of Alii's brain prior to the operation taken at age 11. As you can see the HUGE stroke in the left hemisphere, keep note that the images are taken from all areas and views of the brain, there were approximately 400+ images taken during the MRI scan and I uploaded just a few key images of the brain damage.

Alii at The Autism Walk 2008

On Saturday, April 26, 2008, Alii paricipated at the Autism Walk. On that warm day in Pasadena we joined many families and friends at the 5k race. Alii enjoyed watching all the balloons and streamers blowing in the wind, he liked the music and enjoyed watching the firetrucks.

Eight weeks seizure free:)

Eight weeks seizure free, hooray!Alii continues to meet more milestones and make a speedy recovery.
A big thank you to Dr.Danielpour, Dr.Niesen, Dr.Kay and Dr.Glenn and Kris Irani.

Back to the hospital

On Sunday,March 28, 2008, Alii was hospitalized at Cedars Sinai Medical Center for high fever and infection. All tests were negative for hydrocephalus and meningitis, he was treated for urinary tract infection and discharged three days later. Thank you to all friends and family. A special thank you to Tabitha and Ashton Simpson.

Celebrating a milestone

On March 27, 2008 was Alii's one month anniversary since the surgery and so far no seizures :)In just a few short weeks, we are seeing remarkable improvement. Alii gained his weight back plus more, he ate pancakes for the first time and he is eating a variety of foods. Alii started active physical and occupational therapy.

We look forward to meeting more milestones. We thank you for your prayers and heartfelt messages.

Going home

On Saturday, March 8, after being in the hospital for 12 days, Alii and I come home. As you can see from the pics Alii does not look happy, he wanted to lie down and go to bed, all he wanted was to stay in the hospital and sleep, I was packed up and ready to leave with or without him,lol!!!

Thank you to our friends at Cedars Sinai Medical Center:Jessica, Cameron, Gwen and Valerie. PT's Vanessa and Tina and all the doctors and residents who took care of us during our stay.

Thank you Cedars Sinai Medical Center

My Alii

Thank you family and friends

A thank you to all of our friends and family who came to visit us in the hospital. Thank you to co-workers, friends and family for your phone calls, messages, e-mails and cards, we really appreciate it.

Not pictured:Uncle Jim Webb,Uncle Tim and Aunty Charlene Frisina, Dylana Fabrao, Susan Knowles, Lisa and Julia Baker,Pastors Renato and Margarita Vasquez.

A special thank you to:Sylvia Chlebek, Diana Higa, Michelle Lewis, Tabitha Simpson and Debra Bahr.

Out of surgery

Moments after the operation Ali'i is taken to the PICU......it was the longest day of our lives from 8:38 a.m. until 7:00 p.m. but we got through it. In the PICU we reunited with our son, his color was normal, he was heavily sedated but sleeping peacefully. His head was wrapped in a white bandage and he had tubes coming out every where, it was a moment we will never forget. He not only survived the longest operation but he pulled through it like a champ. A heartfelt thank you and praise to: Dr.Moise Danielpour and his team at Cedars Sinai Medical Center, Los Angeles,CA.

Alii's big day

On Wednesday, Feburary 27, 2008 Ali'i had a functional hemispherectomy at Cedars Sinai Medical Center.
Arriving at 6:30 a.m. checked into the South Tower.
By 8:38 a.m. - Ali'i is wheeled away into surgery.

Alii's new haircut

On Alii's 13th birthday he get's a new haircut to prepare for his big day. We spent the morning at our Pre-op teaching appointment at the Neurosurgeons office, then went to the lab to get his blood typed to prepare for the upcoming blood drive:)The Neurosurgical nurse,Cindy, explained the details of the surgery to the moments leading up to the operation.

A special thank you to my dearest friend Tabitha Simpson for her positive attitude and support.