Yay! Eric's Back!

I'm happy happy happy to report that my handsome and helpful husband is back from his snowboarding adventure. He graciously took Sawyer for the day so that I could get some work done and he could do some father-son bonding. I was able to get more work done today with Rhea than I have in 2 weeks! We really cranked out a bunch of stuff and so I'm feeling wonderfully organized and back on my game!

There was no doc visit today. They are shooting for Thursday, but we reminded them that the ALS seminar is that day, so we'll see. Speaking of the ALS seminar, we hope to see you all there! We are having the team from ALS TDI here for dinner tomorrow. Can't wait to meet them all.

Marvel has been out sick with bronchitis. We're also sad to share that Marvel's grandma passed away last night, so please give Marvel an extra when you see her. Lolo is covering for her tomorrow.

We had talked about having a Lost Premiere party here at the house on Friday, but we are moving it to Saturday since we are going with Elroy to First Friday/Chinese New Year Celebration down in Chinatown this Friday. So the party will be on Saturday 6pm. We'll do it potluck/BYOB and will start the showing at 6:30pm - sound good to everyone?

Too Tired for Creative Blog Post Title

Sawyer is still feeling pretty sick, but he has started to finally perk up. At least we've seen him smile a few times today. Lisa, Maria Rose, and Peggy got him to smile for the first time this afternoon. Lisa put PBS Kids on for him and Maria Rose cooled him with a wet cloth and danced around with a stuffed squirrel to cheer him up!

I feel so grateful to have such loving support. What a wonderful village we have helping us raise our children!!! My mom and dad have also been helping me this week...what a relief. They are here now at our house so I have a few minutes to blog!

Peggy had a wonderful time last night at the mass last night. I've attached some photos from Lolo. Everyone who went said it was amazing. Peggy received a special blessing from Bishop Silva and the mele that Sean Tiwanak wrote for Mother Marianne was beautiful.

I'm happy to report that Julie Percell will be accompanying Lolo and Peggy to the ALS Research 101 seminar next week. Thank you all for registering - we have 50 registrants and we're still hoping for more!

There was supposed to be a doc visit at 5pm today...I will find out tomorrow the report on how it all went.

Suzanne Maurer is going to be leaving town in a few days and will be returning on Feb 10th. Hopefully all runs smoothly while she's away...I told her I'm beginning to have some abandonment issues, but she assured me that she will be returning and resuming her job as scheduling angel. Phew.

Happy Wednesday

Well, Eric's on the slopes and Karen's on the slots and we're managing OK here so far. Sawyer got hit by a nasty head cold/stomach virus the day Eric left (where's the justice?!), so he's been a clingy little opihi. That doesn't make getting things done at work very easy, but we're doing what we can.

I got a new ERICA cable yesterday hoping that would solve the problem, but I still can't get the camera to connect. The good news is that I have been talking regularly with the support guys and they feel that there is a good chance that Peggy will be able to use the system even at this stage of her paralysis. It may just take some troubleshooting to get it working right. So keep your fingers crossed, Everyone!

We're still looking for someone to accompany Lolo and Peggy to the ALS Research 101 seminar next Thursday. Can anyone help out as a B for that event? Please let me know!!!

Peggy is looking forward to the Mother Marianne Mass tonight. They are going to take Peggy's portrait of Mother Marianne (the one hanging in her bedroom - see photo at left) down to the Mass for all to view during the service.

A Few Things

We've been getting Eric ready for his trip this weekend. He leaves tomorrow! And Karen left last night for Vegas, Baby! I thought of a few things to update everyone about...

First of all, this week Wednesday, January 23rd, Peggy will be going to St. Teresa's church in Kalihi at 7pm for a Mass for Mother Marianne. Our Lolo will be singing at the mass! This will be a beautiful treat, one not to miss.

Immacule Ilibagiza, Rwandan genocide survivor and inspirational speaker, was in town last week to give various talks around the island. She really wanted to visit Peggy again and tried to get to the house a few times, but just was not able to fit it in her schedule this time. A few Legs were able to hear her speak and said that it was truly amazing.

Peggy's health has been great lately. Nurse Cathy came by on Friday and checked the cuff which was down to 13CCs. She put 15CCs back in. It is normal for Peggy to lose a couple CCs of air like this over a period of time, not something we need to worry about.

I'm happy to report that Peggy's hallucinations seem to have subsided. It may be that she is getting less oxydose.

Peggy has been expressing interest in getting back on the ERICA computer. We're not sure if it will work with all the eye gels she is putting in (it might interfere with the infrared) but we're gonna try. I tried to set up the system, but we have a frayed wire and so the camera can't connect. I contacted the ERICA guys and hopefully we can get it working soon.

Some of you may have noticed that Cola has some bald spots. While it is not cute, the balding isn't a major health issue - she is just allergic to fleas. I waited just a little too long to give her the flea meds and so the balding started again. But we gave her the meds last Tuesday, so she should be looking better soon. Until then, just tell Cola she looks great - she's a little self conscious about it.

I'm Baaack!

I got hit hard on Tuesday with a gnarly stomach virus. I had to leave early Tuesday...I was at home throwing up with a fever all that day and night. Yesterday I was still out, mostly sleeping and eating rice. And today - I'm back!!! And I am so grateful to be done with that - yay!

Today I came in to witness a momentous event - Magda and Peggy applying the first watercolor mosaic pieces to Father Damien! It looks so beautiful...the painted pieces of watercolor paper just bring it to life. Magda will be going in and out of Peggy's room with the mosaic as she works on it so that Peggy can be a part of the process, guiding her. She has set up a studio in the middle room to work on the piece when she is not in Peggy's room.

I didn't get a chance this past Tuesday to update on the doc visit we had. We had to cut it short because we had technical probs, but we did get some stuff covered. He asked us to be sure to keep soaking her toes. He said that we can bend her knees, prop them with pillows, and soak her feet that way. I noticed today that the left toe is a little bloody, but it looks less red which is good.

Peggy has been dealing with a bit of a rash that looks almost like a sunburn or heat rash on her arms and on her upper stomach. Dr. Davis suggested that we keep putting Lotrimin and we'll be checking on it again on Monday to see if it has improved.

By the way - Peggy was "Lolo" for her doc visit - that's her in a Lolo mask above!

Peggy's been out of Tobradex, but the order is hopefully in (although Ty is currently out of town). We were also running out of abuterol and some other stuff, but Elroy is picking it up today.

JP's visit was very nice. He got to spend a lot of time visiting with Peggy. We had a nice Sunday dinner at the house.

That's about it for now...did I mention that Eric is going snowboarding next week with a bunch of his guy pals? He leaves on Monday and will be gone for a week. And Karen is leaving on Sunday to go to Vegas!!! After Vegas, she'll be going to Reno for a wedding. She'll be gone for over a week and half - what will we do without our Karen around??!!! No, we'll be fine, and we're really happy that she is going to be taking some well deserved vacation time for herself! You go, girl! And win da big one for us!

Lost Season Premiere, Other Stuff

Ackk! I just realized that the long awaited "Lost" season premiere is on the same night as the ALS Research 101 seminar, Thursday Jan 31! So, here's what we'll do...we'll tape the premiere and plan for a "Lost" Party at Peggy's the next night, Friday Feb 1, for all of us who miss the premiere. What do you think?

Thank you to those of you who registered yesterday...keep it up. We want to shoot for 100 registrants! So please spread the word to friends, family, and those in the medical community. Let's show them some of our famous Aloha Spirit!

Lisa, Karen, and I took down the Christmas tree yesterday and started putting away all the Christmas stuff. Yay! It feels so much better in the living room. You'll see our holiday graveyard in the front yard - we have a pile of rotting pumpkins and Christmas tree parts. Eric will be disposing of it all soon. We're getting ready for the New Year of the Rat!

Lisa has been working some 12 hour shifts lately (she's nuts). Lolo has been spending some time with Lehua before Lehua and Carlos move to Alabama :(

Peggy's brother, JP Richard, is arriving today. He's staying in Waikiki and will be by tomorrow (Saturday) to visit. Then we're planning on dinner at the house on Sunday night. Peggy's very excited to see him.

As you know, Magda has finished the Father Damien painting which is the base for the mosaic. We sent it off to our friends at Print Logic to have it scanned. They just finished it and so we'll be picking it up and bringing it back to the attic so that Magda can start working on the final stage - the application of all those little mosaic pieces that the children worked so hard on.

Elroy will be taking a trip February 2 through February 8. He will be going to Washington again as a guest of the ALS Association Advocacy Department to represent Peggy and Hawaii's ALS community! Go Elroy! He'll be coming back through San Francisco where he will be able to spend a day or so with his sister and family. We're not sure who will manage the trash while he's away. We're excepting applications for substitute trash manager so that Elroy can select a suitable replacement and begin training.

Reminder: ALS Research 101

We wanted to remind everyone to register for the upcoming ALS Research 101 seminar on January 31 (see previous post). Help us make it a big success since they are coming all the way to Hawaii to share their information with our community!

If you would prefer to register through me, you can simply reply to this email with your name and address and I'll get you registered.

Thanks!!!

PS - Thanks to those of you who have already registered! You rock!!!

Doc Visit Report

Here's the report from yesterday's doc visit. Catheryn says that there were technical difficulties, so they had to do everything over the phone. They discussed Peggy's hallucinations which Peggy says have gone away since her Oxydose was decreased from 20mg to 15mg. Peggy says that she has been requesting 15 and that it relieves her pain without hallucinations.

Peggy's left toe may need a podiatrist again. Her toe is red and Catheryn says that gray pus oozed from the edge of it when it was squeezed (eeewwww). It is also painful. Peggy had no temperature and no special instructions were given regarding the toe. Just continue cleaning it with hydrogen peroxide/saline and do warm compresses every 4 to 6 hours. And don't squeeze the toe (for all you gray pus addicts). Dr. Davis will try to come by to look at her toe today.

Peggy's Zyrtec medication will be changed to Allegra since HMSA is no longer covering Zyrtec. Catheryn will call Dr.Davis's office to get the order.

Broken Hoyer, Doc Visit Later, New Year's Cleaning

This morning the hoyer broke. Luckily, Peggy had already used it. I called Hawaiian Island Medical and they will be sending a technician out tomorrow morning between 9 and 12, so we should be OK without it until then.

Doc visit has been scheduled for 5 or 5:30 today. We're working on cleaning the office today. Soon, we're going to have to tackle that Christmas tree...not to mention the kitchen refrigerator. Barf. Well, one thing at a time...

Vent Issues, Pepper Jones, and Last Night's Party

This morning around 6am Peggy had some trouble with the vent. Salote was on shift and the vent started alarming low and high pressure. She reported that Peggy's O2 went down to 50, so she called HCA and bagged her until Cathy came.

When Cathy came, she changed out the whole circuit which seemed to fix things. They also noticed that Peggy had a mild temperature of about 100.3. This, however, is probably unrelated to the vent issue. Cathy told us to monitor her SATs and to call if her temperature continues. Peggy's SATs and temp have been fine all day, so we haven't called in.

We have noticed, however, that Peggy has been EXTREMELY tired all day. She has been totally narcoleptic, slipping in and out of sleep all morning. She has been falling asleep while we're talking to her, mid-spelling, even when Lisa was giving her PM in the eye! She seems to be perkier now that it is afternoon.

We had a great surprise today...Kelly came by with her 16 day old baby girl! Pepper Jones was born on Saturday, December 22nd after 22 hours of labor. She is a big girl - 9 lbs 11 ounces at birth! She is so cute! It was so great to see both Kelly and little Pepper looking so good and so happy. Enjoy the long awaited photos of Baby Jones!

Last night's Epiphany party was nice. I have to confess, I was totally partied out even before I got to the party, but after a glass of delicious wine that Hanna brought, I was feeling much more festive. Marvel did tons of cooking for Peggy, there were yummy potluck contributions, and Kat, Pono, and Ryan baked a fabulous 3 Kings Cake with a hidden bean for good luck. Jen Segler was the lucky bean finder of the night!

One more quick note - Refresh PM now comes in a different looking tube. The packaging is slightly different, but you'll see it - just thought we'd let everyone know so that you don't keep looking for the old type of tube.

It's Another Party...

Guess Peggy hasn't had enough of the party season. Surprise, surprise. She has decided to have an "Epiphany Party" this coming Sunday, January 6th at 5pm here at Chun Party Central. Please join us for the festivities and feel free to bring a dish for the feast!

Want some background info on Epiphany? Here's what Wikipidia.com had to say:

Epiphany (Greek: επιφάνεια, "appearance" or "manifestation") is a Christian feast intended to celebrate the "shining forth" or revelation of God to mankind in human form, in the person of Jesus. Some Christians commemorate the visitation of the Magi to the child Jesus on this day, while others use the day to commemorate the baptism of Jesus as an adult. The feast is also called Twelfth Day — being the twelfth day after Christmas — or Three Kings Day for those commemorating the Magi. It is also called Theophany, especially by those commemorating Christ's baptism.

ALS Research 101

We are excited to announce that the ALS Therapy Development Institute (ALSTDI) is bringing their ALS 101 Seminar to Hawaii. Please join us on Thursday, January 31, 5:30 to 8pm, at the Queen Conference Center in Honolulu, HI.

Mainland folks, check the ALS 101 website http://www.als101.org to see when the seminar will be coming to a city near you!

Here is more about the seminar:

ALS Research 101 is a 2.5 hour session designed by ALS TDI staff to provide ALS patients and their families with:

* Awareness of the ALS research performed to date and insight on the new research techniques being applied today and the resources available to patients at ALS TDI and other organizations.

* Enhanced skills to partner with physicians in making well-informed treatment decisions.

* Insight into the biology of Amyotrophic Lateral Sclerosis.

* Opportunity to connect with other patients and families in the ALS community, as well as with the ALS TDI staff members who are passionately working every day to find a treatment for ALS.

All ALS TDI programs are free and open to the public. This program is designed and will be presented by ALS TDI President, Sean Scott, and Treatment Investigator, John McCarty, Ph.D.

Register online at http://www.als101.org or call Mike at 415-447-1990

Peggy and Ohana will be there. Please help show your support and become empowered in our battle to find an effective treatment for ALS by attending this important event.

Happy New Year!

Hope everyone had a great New Year's. I for one am happy to be through the holidays. I love New Year's - a fresh start! Out with the old and in with the new...And too bad about the Warriors, huh? Ugh. Sort of anti-climatic. Anyways, moving on to a better and brighter New Year with new energy.

We had some scheduling problems on New Year's and Marvel ended up having to stay until midnight. Then Eric (Chun) had to come in from midnight to 7am. We are grateful that Hanna was able to come in early at 7am to relieve him. We had been at a New Year's party when we got the call that there was no one coming in for the overnight shift. Same thing happened last New Year's as well. But as I said, we're leaving all that behind and moving on!

I'm back at work today. Eric has the kids so that I can catch up on some of my work. Indy is still out of school and I have to say that I am enjoying this quiet time to myself getting my work done.

Peggy's health has been good, however I am still getting reports of hallucinations. Her doctor and medical staff are aware of the issue. We're working on trying to figure it out. If you notice Peggy having any hallucinations or odd conversations, please report them to me. It is important that we track it all so that Dr. Davis can get a good understanding of what is going on.

It is no secret that using the spell board is getting more difficult. One of my New Year's goals is to create a new spell board that is bigger so that the distance between the sections is larger. Hopefully, it will help distinguish which block Peggy is looking at.

Anyone else have New Year's goals for us? I'm open to suggestions! I'm thinking of doing another Peg's Legs meeting. I'd love some feedback to see if people think it is time for another one.

Another goal for this year: I plan to form a Friends of Peggy Chun Fundraising Committee. If anyone is interested in being a part of this group, please let me know!

One last note. Please save the date Thursday, January 31 from 5:30pm to 8:00pm. We have arranged for ALS TDI to bring their ALS 101 Seminar here to Hawaii! The seminar will be at Queen's Conference Center. We will be posting and sending out more information on this educational seminar soon. They will be sharing information about the latest ALS research. We urge all of you to attend and to help us spread the word.

That's it for now. Happy 2008 everyone!