Lots of Stuff

It has been very busy at the house lately. Especially since we've had both Indy and Sawyer at the house this week. It has been a house full of kids! We've had visits from lots of little friends, Pepper, Maile Ka'ai's son KC and niece...it has been keiki madness and Peggy's been loving every minute of it!

On Tuesday, Joy Johnson and Bobbie Maurer came by and cut Peggy's hair. They did a great job and Peggy now has a sassy new summer 'do.

Yesterday we had a visit from Keola and Moana Beamer. It was so great to catch up and visit. Peggy was so excited to spend some time with them, just talking story and reminiscing about Auntie Nona.

After the Beamers visit, we had a medical meeting at Peggy's bedside with Dr. Davis, Denise from HCA, and Wade from HMSA. It was a great meeting. We covered a lot and will be sharing everything in an upcoming Peg's Legs Meeting. We basically covered some of her health issues like the hallucinations and confusion that Peggy has been experiencing and discussed some longer term planning. We confirmed all of Peggy's wishes and have a solid plan - it feels so great to talk and plan now while Peggy is still able to move her eyes and communicate.

Regarding the hallucinations/confusion, Dr. Davis has done some research and feels confident that this is a symptom of the ALS itself (Peggy agrees). It is not well documented, but it seems that in the late stages of ALS, there can be some frontal lobe damage that can affect cognitive functioning and result in optical hallucinations.

You can help Peggy best by gently (not combatively) coaxing her through these hallucinations/experiences, reminding her that it is just the ALS, that she is safe and loved. Use a lot of touch, reassurance, and comforting words. We will cover this more in the upcoming meeting.

We just want you all to know how much we appreciate you. We are so grateful for the loving care that you give to Peggy and promise to do everything we can to support you at this stage, especially with communication being more challenging. As we have said before, your PRESENCE is the biggest gift you could ever give Peggy, so know how much it means to her and to all of us just to have you there at her side. And whatever we can do to make things easier and more comfortable, please let us know. We are here for you and we love you.

Speaking of more comfortable...after our meeting, Eric installed the new air conditioner in Peggy's room! This AC is a gift from my mom and dad to Peggy (and caregivers!) for her birthday! Thanks Mom and Dad! Just in time for summer!!! The new AC is bigger and better than the last one which had to work too hard for its size and therefore decided to SCREAM LOUDLY at us anytime we turned it on.

He also removed the desk (a.k.a. crap collector) that was under the AC to make room for the new Peg's Legs Cafe. We are planning to put in more lighting, wall shelving/storage, and more in that corner. The old desk got a new home in Elroy's room - he was very excited to have a space to do all of his newspaper cuttings!

Speaking of Elroy, yesterday Eric also went through a AAA "Roadwise Review for Seniors" CD-Rom. It is a CD program that tests your driving responses. We've had concerns about his driving abilities for quite some time. He actually did pretty good on much of the test, there was only some serious concerns about his response time in one section of the test. He vision is actually really good, as is his agility/reflexes for the most part.

Eric has agreed to give Elroy his car key back today, on a few conditions. One, that he keep the driving to a minimum (this was actually Elroy's suggestion). Two, that he talk with his doctor about the issues that were raised in the test. And Three, that he participate in AAA's Carfit for Seniors on June 21 at the Elk's Club. This is a program that runs from 9am to 1pm - you drive down there and they basically inspect and assess your car set up and seated position to make sure that you are best set up/equipped to drive safely. They cover issues specific to senior drivers.

I'm off to Walmart with the kids to pick up some Refresh PM - our delivery hasn't come yet and Peggy is almost out! Seems as if she going through approximately a tube and a half a day! Eek! Dr. Davis suggested that I contact the manufacturer and see if they can give us some in a larger container on a compassionate basis. I'm also picking up some paint for the kids - Peggy has some party decoration project in mind for them today...

I will also be trying to spell with Peggy today. I am giving the Commencement Address tomorrow morning at the Holy Trinity graduation (the 8th graders are moving on to the big world of high school!!!!). I have my speech written, but Peggy has a few special words that she is adding for me to share with them...so the pressure is on! We have to finish it by today so I can read her words tomorrow AM! Maybe, I'll post my speech and her words tomorrow after the graduation...

OK, phew - that's it for now! Good stuff! Lots going on! So fun! That's how we Chuns roll!!!!!!!!!!