Those of you who were able to attend last night's meeting know what a special and wonderful meeting it was. For those of you that missed it, I will try to recap what we covered and I want to assure you that there will be other opportunities to meet and discuss the issues we covered.
Denise started the meeting with an update on Peggy's health. She shared with us the notes from our most recent medical meeting with Peggy where we discussed Peggy's end-of-life care and wishes (Diane and Clarence from Hospice prefer to refer to it as "rest-of-life" care).
We are grateful to Peggy for her planning. This is a gift to all of us. We are so appreciative of the fact that Peggy has been spending the past year or so planning in more and more detail what her "rest-of-life" wishes are while she can still communicate them. This gives all of us comfort and relief. This means that even if Peggy were to be locked in tomorrow, we will have a guide to go by and we can feel confident that we are fulfilling her vision of her passing.
I know that this is not easy to hear or to talk about, and yet, it is a part of this journey that we are on with Peggy...part of the journey that we are all on. Clarence and Diane from Hospice shared with us so much wisdom and really gave us new perspective, positive ways to look at this special time with Peggy.
We don't know how long Peggy has in this body of hers, but we are so happy to have Hospice join the team now, so that they may provide support to Peggy and all of you as we enter this "rest-of-life" period with Peggy, be it weeks or months or years. With communication being more challenging these days, this is a period of time when we need to support each other, be proud and easy on ourselves, and find ways to connect to Peggy beyond words.
And you are all doing this already! But from some of the conversation last night, I know that there is some fear. Fear of the unknown and also uncertainty of our ability to give Peggy what she needs.
One of the gems of wisdom that Diane shared is that we should look at it like bookends of life...we instinctively love newborn babies and care for them with lots of touch and gentle words, we hold them and sing to them...we don't need reassurance from them that we are doing a good job, we don't need them to say thank you or smile or give back in anyway. We can connect with Peggy in the same way now and at the "end". Know that you just being there and loving her is what she needs.
We spoke also of "Presence" - this is the best gift that you can give to Peggy. Your presence. This is what brings Peggy joy. And help our cherished visitors when they enter Peggy's room, help them to know that they don't need to do anything, that being there is the gift. They don't need to fill the space with busyness or chatter or entertainment...while those things are wonderful and have their place, they are not the most important thing. A gentle touch, eye contact, a smile...Presence. These are precious to Peggy's spirit.
Many of you worry that you cannot communicate with Peggy or fear a time when she is completely locked in, but you already communicate with her beyond words now! Think about it...you KNOW when Peggy wants something from you, you KNOW when she is laughing, you KNOW when she is happy, you KNOW when she is saying goodbye or that she loves you...but how do you know? Because we communicate beyond words everyday. And because you all have a connection with Peggy that goes deeper than words or expression.
You all know Peggy. You know her likes and dislikes and you could all care for her blindfolded! You know how she feels about George Bush and you know how she loves to dress up for Dr. Davis. You know that she's a diva that loves cats and boas and leopard print and jewelry and shopping and gossip and PARTYING! Your connection with her, your ability to know her and communicate with her is not an ability you are going to lose, not now, not ever. Trust in yourself. And trust in Peggy.
We also want you all to know that this journey that we are on with Peggy includes all of you. Peggy and the family's vision of Peggy's passing is not a private period of time that you will be excluded from. You are all family. You will all know when we are getting close to the end of her time here. You will all be informed if her eyes begin to lock in completely. Peggy wants everyone to know, all friends and family to be called. You will all be a part of this part of the journey (if this is your wish).
We will be working with Hospice to plan ways in which we can have their support available to all of you. We have discussed the ideas of more regular support meetings, meetings at the house, having them be available by phone for questions...please email me if you have an idea of how we can support all of you at this time.
Eric, Elroy, and I are so grateful to all of you. I feel so grateful when I hear from so many of you that you are honored to be a part of this "rest-of-life" time with Peggy. It never ceases to amaze me how strong, loving, caring, and devoted you all are. You have given Peggy the gift of life, but you have also given me, Eric, and Elroy more joy, strength, and quality of life than you will ever know. Thank you. As Diane said last night, you are an "Army of Compassion"!
I love you all and Peggy loves you all. I don't fear what the future will bring, I know that together we can handle it all...with grace and humor and with Peggy guiding us as she always has. And with Peggy as our guide, you know we're in for in for a fun ride!
Friday, June 27, 2008
Wednesday, June 25, 2008
Doc Visit Report
Here is the doc visit report from Lolo...Thanks Lolo - you so funny!
On the day that the cataracts are scheduled, Dr. Davis suggests that the
trach and GTube be changed out first, then have the cataract surgery.
He will check with Ty to see if she is in agreement doing it that way.
It's so that there will be less stress on Peggy's eyes. She's the
bionic woman..........just change out a body part when it wears out!
Would that we should all be so lucky. I can think of a few parts I
would like to replace. :)
He recommends that the Duoderm on Peggy's skin breakdown (okole) be
changed at least every 3 days. HCA nurses will take care of applying
it. Michelle said that they have been changing it mostly every day
because it gets rolled up from the pads and needs to be replaced anyway.
Ingrown toenails are to be cleaned with saline and then Neosporin
applied. HCA will take care of that as well. Catherine cleaned both
big toes and they looked much better afterwards. Try to keep toes
uncovered as much as possible. Some discussion regarding removing the
nails on those toes to avoid the problem all together. I suggested
amputation up to the knees, but nobody seemed to like that idea for some
reason...........hehehehehehe
Per Catherine, delivery of meds will be on Friday.
Peggy's eyes were very clear all day/night, but even so spelling was
difficult to impossible. Dr. Davis did the eye movement test, and Peggy
had a hard time moving her eyes. Almost no downward motion at all.
On the day that the cataracts are scheduled, Dr. Davis suggests that the
trach and GTube be changed out first, then have the cataract surgery.
He will check with Ty to see if she is in agreement doing it that way.
It's so that there will be less stress on Peggy's eyes. She's the
bionic woman..........just change out a body part when it wears out!
Would that we should all be so lucky. I can think of a few parts I
would like to replace. :)
He recommends that the Duoderm on Peggy's skin breakdown (okole) be
changed at least every 3 days. HCA nurses will take care of applying
it. Michelle said that they have been changing it mostly every day
because it gets rolled up from the pads and needs to be replaced anyway.
Ingrown toenails are to be cleaned with saline and then Neosporin
applied. HCA will take care of that as well. Catherine cleaned both
big toes and they looked much better afterwards. Try to keep toes
uncovered as much as possible. Some discussion regarding removing the
nails on those toes to avoid the problem all together. I suggested
amputation up to the knees, but nobody seemed to like that idea for some
reason...........hehehehehehe
Per Catherine, delivery of meds will be on Friday.
Peggy's eyes were very clear all day/night, but even so spelling was
difficult to impossible. Dr. Davis did the eye movement test, and Peggy
had a hard time moving her eyes. Almost no downward motion at all.
Tuesday, June 24, 2008
Happy Birthday Lolo!
Today is Lolo's birthday. She's back to work after a cruise with her hubbie to celebrate their anniversary. We surprised her and welcomed her back with a pizza birthday party here at Peggy's. Enjoy the photos - that is baby Pepper with Sawyer!
This past weekend's sale was great! We didn't do as well financially as last time, but it was well worth the effort and a lot of fun. We were so blessed with so many wonderful donations, so much help, so much support - I am just blown away by how much time and aloha everyone gave. Thank you so much!
We were lucky to have Jeff (tent guy) help us break down on Monday and get everything out of here. He was so helpful and did a few truck runs for us! We sent the good leftovers to a couple of folks having their own fundraiser yard sales (one is the local MDA ALS Support Group). And the rest of the stuff we donated to Salvation Army. So it all keeps on giving!
We had some great news over the weekend - Peggy's daughter Leslie had her baby!!! She had a baby girl last Wednesday (a Gemini like Peg!) and they named her "Hanalei Rose". We are waiting for photos!!!
Peggy is scheduled for her cataract fitting tomorrow at Ty's office. Then next week or so she will have the actual surgery. There is a doctor visit today at 5:30 and I'm sure Dr. Davis will discuss the cataract issue. He mentioned the possibility of doing a trach change at the same time as the surgery, so I think he'll cover that in today's visit.
Spelling has actually been pretty good with Peggy lately, however she is still having some hallucinations which can lead to some confusing spelling episodes. But Peggy has had very good spelling moments as well and is looking forward to being able to see again.
Late last week I met with Debbie from Respiratory Home Care. She and I went over the supplies and ordering. We have a lot of stock and we want to make sure that we aren't over-ordering. HCA does all of our ordering, so I am working with them to resolve this issue.
After I spoke with Debbie, I talked to Cathy from HCA. Cathy and Noreen then came out to the house on Friday and did inventory on everything. They went through all the supplies and organized everything. They threw out lots of expired meds and got rid of stuff we don't use. They reorganized the supplies, so things might look a bit different. Please help us keep things neat and organized. Hopefully, we will get the ordering under control.
You can help us this way - when Respiratory Home Care delivers something, please review the order and see if we really need what is being delivered. You can call me if you have questions. We need to return things when they are delivered because once they leave the supplies here, we can't return them.
Speaking of supplies, I just bought 2 big things of cranberry juice for Peg - one is in the room fridge and the other is in the closet. I also ordered another 40 tubes of Refresh PM, it will be delivered on Friday.
Okie Dokie, I think that is it. See you all on Thursday at HCA!
MEETING REMINDER!!!
Remember!!! We are having our Peg's Legs Meeting at the Healthcare Alternatives offices this Thursday, June 26th from 6 to 8pm. The address is 156-A Mokauea St. off of Nimitz. Phone number 845-5700.
We will be doing our usual update on Peggy and then Clarence and Diane from Hospice will be joining us to introduce themselves and talk about their role in the care plan. They will be touching base with the group and letting us know how they can support both Peggy and us as caregivers/loved ones. Peggy will NOT be attending this meeting.
Please RSVP by email to me! This will be a wonderful meeting and one not to miss. However, if you absolutely cannot make it, don't worry, we will share what is covered and there will be many more opportunities to connect with our Hospice team.
We will be doing our usual update on Peggy and then Clarence and Diane from Hospice will be joining us to introduce themselves and talk about their role in the care plan. They will be touching base with the group and letting us know how they can support both Peggy and us as caregivers/loved ones. Peggy will NOT be attending this meeting.
Please RSVP by email to me! This will be a wonderful meeting and one not to miss. However, if you absolutely cannot make it, don't worry, we will share what is covered and there will be many more opportunities to connect with our Hospice team.
Friday, June 20, 2008
Ty's Visit
Last night Ty (Peg's eye doctor) came by with her mom for a visit and a full eye exam. It was so interesting. The kids were all over and Indy and Jade were really interested in everything Ty was doing. First Ty inspected Peggy's corneas which she says look great. Then she dilated Peggy's eyes so that she could take a look at her retinas.
And so...remember how Peggy was saying that her vision has been going and that now she can pretty much only see color? Well, that's because -- dramatic pause...Peggy has cataracts!
Isn't that so interesting?! I know that at first it sounds terrible, but actually I see this diagnosis as a positive...it is such a relief to know that this vision issue is something that is fixable and also that it is not the ALS. Ty's theory is that it is from the heavy use of the Tobradex (she warned Peggy when she first put her on it that long term use could cause cataracts, so Peg was aware of this potential side effect).
Ty can do the cataract surgery at Queen's. We will be talking with Dr. D and HCA in the next few days and arranging everything. Ty says that from the look of her cataracts, it is no wonder that she can't see a thing! This surgery will dramatically improve her vision which means hopefully that her spellboarding should also improve.
One more note about Ty's visit - Lisa and I were amazed at how clear Peggy's eyes were during the visit. Ty really flushed all the PM and gunk out of her eyes using Refresh Gel and then saline...we don't know if it was this process or the drops that she put in to dilate Peggy's eyes, but her eyes were darting around and spelling left to right faster than I have seen in months. Perhaps she was just showing off for Ty or maybe Ty is just that good - just her presence made Peggy's eyes perk up! Now that's a great eye doc!
Ty suggested that we fully flush out her eyes once a day or so and see if that helps. Also, she may need more drops and lubrication for a day or so since the dilating drops have a tendency to dry out the eye. We are NOT discontinuing use of the Tobradex. We can continue to use it as we have been until Ty directs us otherwise...
In other news...our friend Jeff (tent/table rental guy), Eric, and Jason put up the big tent and tables last night...today is our last day to prep and get ready for Saturday/Sunday!!! The countdown has begun!!!
And so...remember how Peggy was saying that her vision has been going and that now she can pretty much only see color? Well, that's because -- dramatic pause...Peggy has cataracts!
Isn't that so interesting?! I know that at first it sounds terrible, but actually I see this diagnosis as a positive...it is such a relief to know that this vision issue is something that is fixable and also that it is not the ALS. Ty's theory is that it is from the heavy use of the Tobradex (she warned Peggy when she first put her on it that long term use could cause cataracts, so Peg was aware of this potential side effect).
Ty can do the cataract surgery at Queen's. We will be talking with Dr. D and HCA in the next few days and arranging everything. Ty says that from the look of her cataracts, it is no wonder that she can't see a thing! This surgery will dramatically improve her vision which means hopefully that her spellboarding should also improve.
One more note about Ty's visit - Lisa and I were amazed at how clear Peggy's eyes were during the visit. Ty really flushed all the PM and gunk out of her eyes using Refresh Gel and then saline...we don't know if it was this process or the drops that she put in to dilate Peggy's eyes, but her eyes were darting around and spelling left to right faster than I have seen in months. Perhaps she was just showing off for Ty or maybe Ty is just that good - just her presence made Peggy's eyes perk up! Now that's a great eye doc!
Ty suggested that we fully flush out her eyes once a day or so and see if that helps. Also, she may need more drops and lubrication for a day or so since the dilating drops have a tendency to dry out the eye. We are NOT discontinuing use of the Tobradex. We can continue to use it as we have been until Ty directs us otherwise...
In other news...our friend Jeff (tent/table rental guy), Eric, and Jason put up the big tent and tables last night...today is our last day to prep and get ready for Saturday/Sunday!!! The countdown has begun!!!
Thursday, June 19, 2008
Quick Update
Just a few things...Tobradex was delivered today...I called Ty and she is coming over today to do a full eye exam on Peggy. We were still having trouble with Peggy's mattress, so Hill-Rom gave us another loaner while they work on it.
We are getting ready for this weekend's sale! Exciting!!! Come by to shop and socialize for a great cause!
We are getting ready for this weekend's sale! Exciting!!! Come by to shop and socialize for a great cause!
Monday, June 16, 2008
Happy Father's Day!
Hope everyone had a great Father's Day. We had a great weekend. Saturday was a busy day. All of us - Elroy, Peggy, Marvel, Hanna, Eric, myself, and the kids all went to the luau at Kamehameha School celebrating Nona Beamer's life. It was such an amazing event - beautiful music, beautiful hula...the perfect way to honor Nona. We feel so blessed to have been able to be a part of this celebration of her life.
Peggy, Elroy, Marv, and Hanna stayed 'til the end of the luau, but Eric, me, and the kids had to rush over to Indy's preschool for her Fun Fair. I worked a couple booths while the kids enjoyed the fun and games...especially the fishing game. We went home with about 10 guppies. Great.
Saturday night we went to dinner at my folk's house to wish my dad a happy Father's Day. Eric slipped out a bit to go "show face" at the Punahou Alumni Luau.
Sunday we came by Peggy & Elroy's to visit Elroy and wish him a Happy Father's Day. We brought him some practical kitchen tools and cocoa puffs and pancake batter from Liliha Bakery! Then, for Eric, we spent the whole day at Waimanalo beach! It was a great day. See photo below.
Today at Peggy's we've been getting ready for the yard sale. We submitted all our ads to the Classified sections and are doing more sorting. We will be sorting sorting sorting ALL week in fact - so you're welcome to join us if you're in the neighborhood! Ha! We are also looking for volunteers to help over the weekend.
Thank you so much to all of you that have been bringing your stuff in. Wow! We have such awesome donations this time! Really - this is going to be such a great sale with lots of cool stuff!
Peggy is doing good today. Denise is coming by later to do a short medical visit. She's checking in on Peggy and some of the current medical issues. That's it for now!
Peggy, Elroy, Marv, and Hanna stayed 'til the end of the luau, but Eric, me, and the kids had to rush over to Indy's preschool for her Fun Fair. I worked a couple booths while the kids enjoyed the fun and games...especially the fishing game. We went home with about 10 guppies. Great.
Saturday night we went to dinner at my folk's house to wish my dad a happy Father's Day. Eric slipped out a bit to go "show face" at the Punahou Alumni Luau.
Sunday we came by Peggy & Elroy's to visit Elroy and wish him a Happy Father's Day. We brought him some practical kitchen tools and cocoa puffs and pancake batter from Liliha Bakery! Then, for Eric, we spent the whole day at Waimanalo beach! It was a great day. See photo below.
Today at Peggy's we've been getting ready for the yard sale. We submitted all our ads to the Classified sections and are doing more sorting. We will be sorting sorting sorting ALL week in fact - so you're welcome to join us if you're in the neighborhood! Ha! We are also looking for volunteers to help over the weekend.
Thank you so much to all of you that have been bringing your stuff in. Wow! We have such awesome donations this time! Really - this is going to be such a great sale with lots of cool stuff!
Peggy is doing good today. Denise is coming by later to do a short medical visit. She's checking in on Peggy and some of the current medical issues. That's it for now!
Thursday, June 12, 2008
Busy Day, Doc Visit Report
Yesterday on the Kamehameha Day holiday, I had both kids plus one extra that I was watching, so we didn't come in to work...and from the many notes on my desk it looks like I missed a lot! Sounds like it was a busy day yesterday with lots of visitors and a doctor visit with quite a few issues.
Chris Chun brought some people by to shop, then Erin from Archinoetics came by with one of their collaborators from Georgia Tech who was in town for vacation. Marvel says that they had tons of people come by last night! Melody Ball, Jan Hanashiro, Jason, Jen, Jade, Cian, Recky, Kat, Pono, and Ryan. Jan brought lots of yummy goodies for the cafe and some plates and cups. We also had more deliveries of yard sale stuff - yay!
Catherine also came by to give Peggy her meds for her UTI. Speaking of which, on Tuesday, Catherine had Lisa work on the doc visit report. Peggy had a lot of issues to discuss, here is the report (I don't have Dr. Davis's responses yet...I'll work on finding out more):
Eyes - Over the past couple days, Peggy has begun voicing concern over her vision. She says that she feels like she "can't see anything" and that she can see color, but not much else. She is wanting a new spellboard made that is larger with large black letters and numbers. She would like to keep the six boxes, but outline in colors (or I was thinking, make each box a different color background) so that she can see where each box ends. Peggy does have the board memorized, but she feels like she isn't sure where she is looking...all of these vision issues have her feeling down/depressed. Lisa left a message for Ty to make an appointment and I will call Ty again to follow up.
Trach - Peggy says that she is concerned that it is time for a new trach because of the gurgling and frequent loss of 2 to 3 ccs of air in the cuff. She is still having pain inside and outside of the trach. On a scale of 1 to 10, it is a 5.
GTube - She feels that there may be a tear in the Gtube and that might be what is causing it to leak when it does...
UT - Peggy feels that there may still be a small UTI because of some burning sensation...on a scale of 1 to 10, it is a 4.
Toes - She says that it feels like there is an ingrown toenail on the left side of the big toe on the left foot...scale of 1 to 10, it is a 5.
Skin - She says that she feels like there is a skin breakdown on my bottom/lower part of back is painful. On a scale of 1 to 10, it is a 5.
Hallucinations - Peggy says that she is having them all day now, but she tries to ignore them and just continue what she is doing. She feels scared, overwhelmed, and out of control. She believes that they are from the ALS. On an "aggravation scale" of 1 to 10, they are a 10. We will definitely be discussing this issue more at our Peg's Legs meeting and help everyone know how to help Peggy best with this issue. Just comfort Peggy, reassure her, use lots of reassuring touch, remind her that it is the ALS and then move on...
Peggy says that her mood has been "good, considering all of this fabulous stuff"
I will update everyone more when I hear more about Dr. Davis's responses to these issues.
Chris Chun brought some people by to shop, then Erin from Archinoetics came by with one of their collaborators from Georgia Tech who was in town for vacation. Marvel says that they had tons of people come by last night! Melody Ball, Jan Hanashiro, Jason, Jen, Jade, Cian, Recky, Kat, Pono, and Ryan. Jan brought lots of yummy goodies for the cafe and some plates and cups. We also had more deliveries of yard sale stuff - yay!
Catherine also came by to give Peggy her meds for her UTI. Speaking of which, on Tuesday, Catherine had Lisa work on the doc visit report. Peggy had a lot of issues to discuss, here is the report (I don't have Dr. Davis's responses yet...I'll work on finding out more):
Eyes - Over the past couple days, Peggy has begun voicing concern over her vision. She says that she feels like she "can't see anything" and that she can see color, but not much else. She is wanting a new spellboard made that is larger with large black letters and numbers. She would like to keep the six boxes, but outline in colors (or I was thinking, make each box a different color background) so that she can see where each box ends. Peggy does have the board memorized, but she feels like she isn't sure where she is looking...all of these vision issues have her feeling down/depressed. Lisa left a message for Ty to make an appointment and I will call Ty again to follow up.
Trach - Peggy says that she is concerned that it is time for a new trach because of the gurgling and frequent loss of 2 to 3 ccs of air in the cuff. She is still having pain inside and outside of the trach. On a scale of 1 to 10, it is a 5.
GTube - She feels that there may be a tear in the Gtube and that might be what is causing it to leak when it does...
UT - Peggy feels that there may still be a small UTI because of some burning sensation...on a scale of 1 to 10, it is a 4.
Toes - She says that it feels like there is an ingrown toenail on the left side of the big toe on the left foot...scale of 1 to 10, it is a 5.
Skin - She says that she feels like there is a skin breakdown on my bottom/lower part of back is painful. On a scale of 1 to 10, it is a 5.
Hallucinations - Peggy says that she is having them all day now, but she tries to ignore them and just continue what she is doing. She feels scared, overwhelmed, and out of control. She believes that they are from the ALS. On an "aggravation scale" of 1 to 10, they are a 10. We will definitely be discussing this issue more at our Peg's Legs meeting and help everyone know how to help Peggy best with this issue. Just comfort Peggy, reassure her, use lots of reassuring touch, remind her that it is the ALS and then move on...
Peggy says that her mood has been "good, considering all of this fabulous stuff"
I will update everyone more when I hear more about Dr. Davis's responses to these issues.
Tuesday, June 10, 2008
Please RSVP for Meeting
Hi all, as I mentioned, our Peg's Legs meeting is set for Thursday, June 26th from 6 to 8pm at Healthcare Alternatives. Can you please email me if you can make it so that we can have a headcount.
Peggy's been listening to the book stories all day...she is having so much fun hearing everyone's submissions. We have begun to bring in and sort all of the yard sale stuff. We are separating stuff by category and beginning to put price tags. We have a lot of great stuff, and there is A LOT of it...so much for our clean, clutter-free house! At least Peggy's room is still gorgeous!
Peggy's been listening to the book stories all day...she is having so much fun hearing everyone's submissions. We have begun to bring in and sort all of the yard sale stuff. We are separating stuff by category and beginning to put price tags. We have a lot of great stuff, and there is A LOT of it...so much for our clean, clutter-free house! At least Peggy's room is still gorgeous!
Jeff's Cauliflower Potato Latke Pie!
JEFF'S CAULIFLOWER & POTATO LATKE CRUST PIE
EST TIME : 2 HOURS
POTATO LATKE CRUST
2 CUPS OF GRATED RAW YUKON GOLD POTATOES ( ABT 2 LBS OF POTATOES)
1 EGG
1/4 CUP GRATED ONION
1/2 - 1 TEASPOON SALT (PREFERABLE NON-IODIZED)
FINE GRATE THE POTATOES AND SQUEEZE OUT AS MUCH MOISTURE AS POSSIBLE.
MIX W/ SALT & LET SIT FOR 10 MINUTES...THEN RE-SQUEEZE OUT REST OF MOISTURE.
MIX WITH THE EGG. THEN POUR INTO AN OLIVE OILED PIE PAN AND PAT THE POTATOES AROUND TILL COVERING THE BOTTOM & SIDES.
BAKE IN A 400 DEGREE OVEN FOR 20 MINUTES.
PULL OUT COAT INSIDE OF CRUST WITH ADDITIONAL OIL & THEN FINISD BAKING FOR ANOTHER 20 MINUTES. WHEN FINISHED PUT TO THE SIDE & DECREASE OVEN TEMP TO 350 DEGREES
FILLING
1 NICE SIZED HEAD OF CAULIFLOWER BROKEN APART & BLANCHED FOR 3 MINUTES IN SALTED WATER
4 TABLE BUTTER
1 CUP OF GRATED ONIONS
4 CLOVES CLOVES OF GARLIC FINELT CHOPPED
1 TEASPOON SALT
1 TEASPOON PEPPER
1/2 CUP FINELY CHOPPED BASIL
2 CUPS OF GRATED CHEESE - A COMBO OF GRUYERE/PARMESAN/PECORINO
MELT BUTTER IN A LARGE POT
ADD GARLIC & ONIONS...SAUTE FOR 3 MINUTES MEDIUM TO HIGH HEAT.
ADD CAULIFLOWER, SALT & PEPPER & SAUTE FOR 10-20 MINUTES STIRRING FREQUENTLY
AS YOU STIR, BREAK UP THE FLORETS
ONCE COOKED UNTIL LIGHTLY BROWN & SOFTENED, TAKE OFF HEAT & ADD THE BASIL
BINDER
4 EGGS
1/2 CUP MILK
1/2 TEASPOON SALT
1/2 TEASPOON PEPPER
BEAT ALL INGREDIENTS TOGETHER
ASSEMBLING:
DO A LAYER OF 1/2 THE CHEESE ON THE BOTTOM OF THE POTATO CRUST
ADD ALL OF THE CAULIFLOWER MIXTURE
ADD THE REMAINING CHEESE
POUR OVER THE PIE THE EGG MIXTURE...SPREAD TO PENETRATE THE FILLING
SPRINKLE RED PAPRIKA OVER THE TOP OF THE PIE (ABOUT 1/4- 1/2 TEASPOONFUL)
BAKE IN THE OVEN FOR APPROXIMATELY 35-40 MINUTES
TEST TO BE SURE A KNIFE BLADE COMES OUT CLEAN FROM THE CENTER OF THE PIE.
THAT'S IT!
EST TIME : 2 HOURS
POTATO LATKE CRUST
2 CUPS OF GRATED RAW YUKON GOLD POTATOES ( ABT 2 LBS OF POTATOES)
1 EGG
1/4 CUP GRATED ONION
1/2 - 1 TEASPOON SALT (PREFERABLE NON-IODIZED)
FINE GRATE THE POTATOES AND SQUEEZE OUT AS MUCH MOISTURE AS POSSIBLE.
MIX W/ SALT & LET SIT FOR 10 MINUTES...THEN RE-SQUEEZE OUT REST OF MOISTURE.
MIX WITH THE EGG. THEN POUR INTO AN OLIVE OILED PIE PAN AND PAT THE POTATOES AROUND TILL COVERING THE BOTTOM & SIDES.
BAKE IN A 400 DEGREE OVEN FOR 20 MINUTES.
PULL OUT COAT INSIDE OF CRUST WITH ADDITIONAL OIL & THEN FINISD BAKING FOR ANOTHER 20 MINUTES. WHEN FINISHED PUT TO THE SIDE & DECREASE OVEN TEMP TO 350 DEGREES
FILLING
1 NICE SIZED HEAD OF CAULIFLOWER BROKEN APART & BLANCHED FOR 3 MINUTES IN SALTED WATER
4 TABLE BUTTER
1 CUP OF GRATED ONIONS
4 CLOVES CLOVES OF GARLIC FINELT CHOPPED
1 TEASPOON SALT
1 TEASPOON PEPPER
1/2 CUP FINELY CHOPPED BASIL
2 CUPS OF GRATED CHEESE - A COMBO OF GRUYERE/PARMESAN/PECORINO
MELT BUTTER IN A LARGE POT
ADD GARLIC & ONIONS...SAUTE FOR 3 MINUTES MEDIUM TO HIGH HEAT.
ADD CAULIFLOWER, SALT & PEPPER & SAUTE FOR 10-20 MINUTES STIRRING FREQUENTLY
AS YOU STIR, BREAK UP THE FLORETS
ONCE COOKED UNTIL LIGHTLY BROWN & SOFTENED, TAKE OFF HEAT & ADD THE BASIL
BINDER
4 EGGS
1/2 CUP MILK
1/2 TEASPOON SALT
1/2 TEASPOON PEPPER
BEAT ALL INGREDIENTS TOGETHER
ASSEMBLING:
DO A LAYER OF 1/2 THE CHEESE ON THE BOTTOM OF THE POTATO CRUST
ADD ALL OF THE CAULIFLOWER MIXTURE
ADD THE REMAINING CHEESE
POUR OVER THE PIE THE EGG MIXTURE...SPREAD TO PENETRATE THE FILLING
SPRINKLE RED PAPRIKA OVER THE TOP OF THE PIE (ABOUT 1/4- 1/2 TEASPOONFUL)
BAKE IN THE OVEN FOR APPROXIMATELY 35-40 MINUTES
TEST TO BE SURE A KNIFE BLADE COMES OUT CLEAN FROM THE CENTER OF THE PIE.
THAT'S IT!
Monday, June 9, 2008
The Best Birthday Ever!
Yesterday's party was a blast! And the presentation of the SURPRISE book of stories was a huge hit! The title of the book is "Peg Tales: The Marvelous Adventures of Peggy Chun". She loves it and we've been getting great feedback! We had a total of around 135 submissions from friends and family...the book is 158 pages of pure joy!
We printed up a few books for the party so that the guests could read them and also read their stories to Peggy in person. Everyone wanted to buy (or steal) them last night! But you will all have to wait just a bit before you get your hands on one...we are working on doing a more thorough editing...we're also planning on adding on, polishing it up, and then we're going to self publish so that they can be available to everyone!
So please - it is not too late to get your stories in to us! There is still time! We need your story! And until you get your own copy, please come by and read Peggy's...the caregivers have been having so much fun reading the stories to her. Come and read yours to Peggy in person!
The party was so fabulous. Peggy's idea of a tea party was such a great theme. We had the most delicious tea party goodies to eat - cucumber sandwiches, curried chicken and egg salad sandwiches, scones, and the most divine potato latke cauliflower pie that Jeff Berman made...I will be posting this coveted recipe soon! We did, of course, have tea, but we definitely drank more wine than tea...
Melody Heidel and Dale entertained us with the most heavenly live music. Their jazzy tunes added the perfect ambiance for the festivities. We did face painting again for the kids and they all had a blast running around in the yard playing ball. It was truly the perfect party - simple, fun, and great vibes.
Peggy cracked us all up by rolling out with a mask that said, "Happy 42nd birthday to Me!"
Please enjoy these photos from the party...
Peg's Legs Photos on Shutterfly
We printed up a few books for the party so that the guests could read them and also read their stories to Peggy in person. Everyone wanted to buy (or steal) them last night! But you will all have to wait just a bit before you get your hands on one...we are working on doing a more thorough editing...we're also planning on adding on, polishing it up, and then we're going to self publish so that they can be available to everyone!
So please - it is not too late to get your stories in to us! There is still time! We need your story! And until you get your own copy, please come by and read Peggy's...the caregivers have been having so much fun reading the stories to her. Come and read yours to Peggy in person!
The party was so fabulous. Peggy's idea of a tea party was such a great theme. We had the most delicious tea party goodies to eat - cucumber sandwiches, curried chicken and egg salad sandwiches, scones, and the most divine potato latke cauliflower pie that Jeff Berman made...I will be posting this coveted recipe soon! We did, of course, have tea, but we definitely drank more wine than tea...
Melody Heidel and Dale entertained us with the most heavenly live music. Their jazzy tunes added the perfect ambiance for the festivities. We did face painting again for the kids and they all had a blast running around in the yard playing ball. It was truly the perfect party - simple, fun, and great vibes.
Peggy cracked us all up by rolling out with a mask that said, "Happy 42nd birthday to Me!"
Please enjoy these photos from the party...
Peg's Legs Photos on Shutterfly
Wednesday, June 4, 2008
HAPPY BIRTHDAY PEGGY!!!
Just got home from a fabulous day at Peggy's. We had so many visitors today...friends brought flowers, smiles, laughter, and love all day long. The house was bustling with kids (Indy took the day off for "Puna Day", which should be a national holiday!). Sawyer, Indy, and Kala'i played while Karen, Eric, myself, and the caregivers organized, cleaned, and puttered around.
With the help of a few very hard workers (Pat G, Pokey, Julie Percell, Suzanne Ching, Ania Hawajska, to name a few) we cranked out A LOT of work on the house and Peggy's room. You will see many great changes and wonderful additions to the room and beyond.
Here is a list of some of the improvements:
We now have Menehune Water service in the room. We have a hot/cold water dispenser with water delivery every 2 weeks! The hot water side comes out boiling hot, so be careful...the great thing is that it is child-resistant and pretty safe even with the keiki around. You can use the hot water to make tea, hot cocoa, cup o' noodle, etc.
The Peg's Legs Cafe is up and running. You have to see it to fully appreciate it - but we LOVE it and have already put it to good use today. There is a lot more storage and lots of goodies for all of you. We put lots of ziplocks and tupperware for storage so that ALL goodies can be sealed tight...we want to keep this area clean and ROACH-FREE! Please take the time to clean up and wipe down the stainless counter after each shift. We bug bombed Peggy's room yesterday, so we have a head start on keeping it critter-free.
Ann Weers donated a new refrigerator for the room! Thanks Ann!
Peggy's bathroom is now spic and span! It was cleaned VERY thoroughly by Suzanne & Julie! We cleared the counter and now have a dish drainer there to rinse/wash dishes,etc. (NO big chunks of food down the drain please!)
Eric worked more on the speakers in the house...now the receiver in Peggy's room controls the music in the living room too!
We organized all of Peggy's sorting projects. All of her plastic bins are located in the corner next to the fireplace. THE RULE IS - if Peggy wants to sort/work on the bins, you can bring them in, but they must go back out at the end of your shift! NO MORE BINS IN THE ROOM! (Except her gift giving bins which are under the small table). We've been getting such great feedback on how comfy, spacious, warm, and inviting it is in the room, so I think Peggy can see how this will be a good thing :)
There is a plastic stack of drawers in the room to the left of the TV. This has the private hire drawer, a place for medical/delivery receipts, a place for current projects (since they always go missing), a drawer for office supplies, a drawer for people's business cards and contact info, and a drawer for stuff to read to Peggy...there is room to grow in this shelving unit, since I'm sure more things will come up. Maybe we'll have to add a "stuff to sort" drawer?
We set up a bin in Peggy's room for her birthday gifts that she has been getting today along with a clipboard list of who gave what...birthday cards are being hung on the new ribbon by the window (please clip out the address from the envelope, tape it to inside of the card and hang, you can throw away the envelope).
That's it off the top of my head...I think you'll notice many more little things that we've done as you go about your day at Peggy's. This really is a gift to you and a thank you from Peggy for all the hard work and love you give. We want to make Peggy's room and house a comfortable and enjoyable place for all of us to be.
I know we are all going to work hard to keep things nice and tidy. As my mom always told me - it is all about MAINTENANCE! Let's do a little bit every day and put things back where we found them. We can do it, Team!
Peggy really enjoyed all the activity around the house, all the visits, and all the fun. We all just hung out in her room, eating, drinking coffee, drinking wine...she spelled out to Marvel, "This is my best birthday ever". That made my day :)
Hope to see everyone on Sunday around 4pm for Peggy's potluck High Tea birthday party! Be there for the presentation of Peggy's surprise! You also have to come by to see the amazing photo collage that Kelly worked hard on for Peggy's birthday.
One more thing for your calendar - we have set the Peg's Legs Meeting at HCA on Thursday, June 26 from 6 to 8pm. Clarence and his team from Hospice will be there to discuss what their role will be, how we can best support Peggy, and ways they can support you, the caregivers.
One final note - I ordered more Tobradex from Ty - this time it will be double the Rx and will be delivered from now on by Pacific Health Pharmacy. They are delivering the Tobradex on Friday. Please remember when ordering meds from PHP that they take a few days to deliver, so take that into account.
Thanks everyone! I feel so proud of all our hard work and so blessed to be a part of such an amazing group of people. Thank you for all your kind words, birthday blessings, time, support, and love that you give to Peggy and all of us Chuns. Life is good.
With the help of a few very hard workers (Pat G, Pokey, Julie Percell, Suzanne Ching, Ania Hawajska, to name a few) we cranked out A LOT of work on the house and Peggy's room. You will see many great changes and wonderful additions to the room and beyond.
Here is a list of some of the improvements:
We now have Menehune Water service in the room. We have a hot/cold water dispenser with water delivery every 2 weeks! The hot water side comes out boiling hot, so be careful...the great thing is that it is child-resistant and pretty safe even with the keiki around. You can use the hot water to make tea, hot cocoa, cup o' noodle, etc.
The Peg's Legs Cafe is up and running. You have to see it to fully appreciate it - but we LOVE it and have already put it to good use today. There is a lot more storage and lots of goodies for all of you. We put lots of ziplocks and tupperware for storage so that ALL goodies can be sealed tight...we want to keep this area clean and ROACH-FREE! Please take the time to clean up and wipe down the stainless counter after each shift. We bug bombed Peggy's room yesterday, so we have a head start on keeping it critter-free.
Ann Weers donated a new refrigerator for the room! Thanks Ann!
Peggy's bathroom is now spic and span! It was cleaned VERY thoroughly by Suzanne & Julie! We cleared the counter and now have a dish drainer there to rinse/wash dishes,etc. (NO big chunks of food down the drain please!)
Eric worked more on the speakers in the house...now the receiver in Peggy's room controls the music in the living room too!
We organized all of Peggy's sorting projects. All of her plastic bins are located in the corner next to the fireplace. THE RULE IS - if Peggy wants to sort/work on the bins, you can bring them in, but they must go back out at the end of your shift! NO MORE BINS IN THE ROOM! (Except her gift giving bins which are under the small table). We've been getting such great feedback on how comfy, spacious, warm, and inviting it is in the room, so I think Peggy can see how this will be a good thing :)
There is a plastic stack of drawers in the room to the left of the TV. This has the private hire drawer, a place for medical/delivery receipts, a place for current projects (since they always go missing), a drawer for office supplies, a drawer for people's business cards and contact info, and a drawer for stuff to read to Peggy...there is room to grow in this shelving unit, since I'm sure more things will come up. Maybe we'll have to add a "stuff to sort" drawer?
We set up a bin in Peggy's room for her birthday gifts that she has been getting today along with a clipboard list of who gave what...birthday cards are being hung on the new ribbon by the window (please clip out the address from the envelope, tape it to inside of the card and hang, you can throw away the envelope).
That's it off the top of my head...I think you'll notice many more little things that we've done as you go about your day at Peggy's. This really is a gift to you and a thank you from Peggy for all the hard work and love you give. We want to make Peggy's room and house a comfortable and enjoyable place for all of us to be.
I know we are all going to work hard to keep things nice and tidy. As my mom always told me - it is all about MAINTENANCE! Let's do a little bit every day and put things back where we found them. We can do it, Team!
Peggy really enjoyed all the activity around the house, all the visits, and all the fun. We all just hung out in her room, eating, drinking coffee, drinking wine...she spelled out to Marvel, "This is my best birthday ever". That made my day :)
Hope to see everyone on Sunday around 4pm for Peggy's potluck High Tea birthday party! Be there for the presentation of Peggy's surprise! You also have to come by to see the amazing photo collage that Kelly worked hard on for Peggy's birthday.
One more thing for your calendar - we have set the Peg's Legs Meeting at HCA on Thursday, June 26 from 6 to 8pm. Clarence and his team from Hospice will be there to discuss what their role will be, how we can best support Peggy, and ways they can support you, the caregivers.
One final note - I ordered more Tobradex from Ty - this time it will be double the Rx and will be delivered from now on by Pacific Health Pharmacy. They are delivering the Tobradex on Friday. Please remember when ordering meds from PHP that they take a few days to deliver, so take that into account.
Thanks everyone! I feel so proud of all our hard work and so blessed to be a part of such an amazing group of people. Thank you for all your kind words, birthday blessings, time, support, and love that you give to Peggy and all of us Chuns. Life is good.
Monday, June 2, 2008
Lots Going On!
We started working on Peggy's room and the house today! Wow! Between me, Karen, Lisa, Marvel, Judy & David Moody, Eric, and Sawyer, we got a good head start on Peggy's room re-do and general household organization/prep for yard sale! Phew!
Here's what we accomplished today:
We removed all the towering bins from Peggy's room (Peggy agreed to this for the comfort and safety of the caregivers!)
Peggy began sorting through all of it with Lisa and Marvel
We reorganized the corner where the wheelchair goes - by the way, I forgot that I removed the private hire drawer and have the time sheets in the office - I know I have to print more, sorry, I'll take care of it tomorrow! I will be finding a new place for the time sheets...maybe we should have cubbies for the private hires! :) Also, Eric installed a lamp in that corner...
Karen and Judy cleaned A LOT in Peggy's room and did the floors. We put in a new rug under Peggy's bed!
Eric installed new wonderful speakers on both sides of Peggy's bed so that Peggy will be able to hear the TV! This was Pat Gamble's fabulous idea and she generously donated towards the cause for Peggy's birthday. Thank you Pat! So awesome! Eric is also setting up the receiver to control Peggy's itunes so that everything will be controlled by one receiver - he's so handy :)
We organized the DVDs/CDs and shelves below the TV.
Also as part of the household improvements, we installed some solar lights along the pathway so that it won't be so dark when caregivers leave at night...
Last, but not least, Eric and his friends Casey and Ari trimmed the lychee tree in the backyard - it has so much fruit!!! See photos below. Please help yourself to lychee - we have lychee coming out of our ears!
I know that there is more, but that's all my tired brain can think of right now. Tomorrow we are going to bug bomb Peggy's room, tackle Peggy's "half-room" and bathroom, and try to organize the CHAOS in the living room that we created today. Ugh.
A few other things...
We have a PM gel delivery tomorrow. I know we've been running low and thankfully our hero, Recky, went out and bought some last night to get us through until our order arrives. I have a few things to say about our PM issue:
First of all, we have a theory on Peggy's eyes - they have been red a lot lately and it seems to have started when the fan was moved over to the hoyer side of the room (this is actually Lolo's brilliant theory!). So I have moved the fan, let's try it and see if it helps.
Second, we need to be a bit more conservative with the PM. At the risk of sounding like Elroy (ha ha), we have been going through over a tube a day of the stuff and it doesn't grow on trees!!! The thing is, when her eyes are so red and irritated that it just falls right out of her eye, it is useless. Please be sure to patch Peggy's eye as soon as it looks red (if she says OK). Perhaps we can also use more of the Refresh liqui-gel to flush her eyes instead of just lubing her up with PM all the time. Let's just be conscious of the cost of the PM when we're using it. I know it is a Catch 22, since her eyes NEED it, but we need to find the balance.
Also, I will try next time to order the PM more in advance. Please try to let me know when we are running low - let me know when we have about 10 or 15 tubes left since it could take up to a week for the order to come in. Also, if I have already put the order in to Pacific Health Pharmacy, please DO NOT call them to check on the order - I will do this. This can cause confusion and delay the order delivery. There was some confusion this time because they thought that they heard that she only needed some to get by and not the full order. Long story short, I will be their main contact for the over the counter meds like PM gel. Thanks guys!
One more thing - today a mystery was solved! Lisa told us that she knows how Peggy's trach balloon got stained! She said that Nurse Eric accidentally squirted the peridium (UTI med) all over Peggy - it is yellow and it went everywhere, including the balloon!
Here's what we accomplished today:
We removed all the towering bins from Peggy's room (Peggy agreed to this for the comfort and safety of the caregivers!)
Peggy began sorting through all of it with Lisa and Marvel
We reorganized the corner where the wheelchair goes - by the way, I forgot that I removed the private hire drawer and have the time sheets in the office - I know I have to print more, sorry, I'll take care of it tomorrow! I will be finding a new place for the time sheets...maybe we should have cubbies for the private hires! :) Also, Eric installed a lamp in that corner...
Karen and Judy cleaned A LOT in Peggy's room and did the floors. We put in a new rug under Peggy's bed!
Eric installed new wonderful speakers on both sides of Peggy's bed so that Peggy will be able to hear the TV! This was Pat Gamble's fabulous idea and she generously donated towards the cause for Peggy's birthday. Thank you Pat! So awesome! Eric is also setting up the receiver to control Peggy's itunes so that everything will be controlled by one receiver - he's so handy :)
We organized the DVDs/CDs and shelves below the TV.
Also as part of the household improvements, we installed some solar lights along the pathway so that it won't be so dark when caregivers leave at night...
Last, but not least, Eric and his friends Casey and Ari trimmed the lychee tree in the backyard - it has so much fruit!!! See photos below. Please help yourself to lychee - we have lychee coming out of our ears!
I know that there is more, but that's all my tired brain can think of right now. Tomorrow we are going to bug bomb Peggy's room, tackle Peggy's "half-room" and bathroom, and try to organize the CHAOS in the living room that we created today. Ugh.
A few other things...
We have a PM gel delivery tomorrow. I know we've been running low and thankfully our hero, Recky, went out and bought some last night to get us through until our order arrives. I have a few things to say about our PM issue:
First of all, we have a theory on Peggy's eyes - they have been red a lot lately and it seems to have started when the fan was moved over to the hoyer side of the room (this is actually Lolo's brilliant theory!). So I have moved the fan, let's try it and see if it helps.
Second, we need to be a bit more conservative with the PM. At the risk of sounding like Elroy (ha ha), we have been going through over a tube a day of the stuff and it doesn't grow on trees!!! The thing is, when her eyes are so red and irritated that it just falls right out of her eye, it is useless. Please be sure to patch Peggy's eye as soon as it looks red (if she says OK). Perhaps we can also use more of the Refresh liqui-gel to flush her eyes instead of just lubing her up with PM all the time. Let's just be conscious of the cost of the PM when we're using it. I know it is a Catch 22, since her eyes NEED it, but we need to find the balance.
Also, I will try next time to order the PM more in advance. Please try to let me know when we are running low - let me know when we have about 10 or 15 tubes left since it could take up to a week for the order to come in. Also, if I have already put the order in to Pacific Health Pharmacy, please DO NOT call them to check on the order - I will do this. This can cause confusion and delay the order delivery. There was some confusion this time because they thought that they heard that she only needed some to get by and not the full order. Long story short, I will be their main contact for the over the counter meds like PM gel. Thanks guys!
One more thing - today a mystery was solved! Lisa told us that she knows how Peggy's trach balloon got stained! She said that Nurse Eric accidentally squirted the peridium (UTI med) all over Peggy - it is yellow and it went everywhere, including the balloon!
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