Sunday, May 31, 2009

Hell hath no fury like a woman who has sworn off fudge and chocolate.
May 30/31

I'm once again waiting for a phone appointment with Dr. F. I'm not nervous this time. Actually, I'm not expecting much out of the appointment. I have a feeling he also has no idea why Jess continues to vomit. But it would be great if he did. Jess and I will both be talking with him. I think there are questions that only she can answer.
Jess has an appointment with Dr. Matchell a week from tomorrow. I don't suppose he will have answers either unless he's thought of something since she was in the hospital. This Wednesday she has an appointment with Dr. Matt. I think we may be holding out more hope from him than from anyone else. His treatments have helped with her gall bladder pain. I took treatments from him for awhile when my meds for Crohn's didn't seem to be working as well as they had previously, and things improved. I've know that some people seem to think this kind of chiropractor is just a quack, I think different. He has helped a lot of people in our family.
Dr. F says to up her Florinef and see if that helps with the vomiting. And they both need to get labs done and a UFC. I also need to call the hospital and get J&J's records from their surgeries. Need all Jess' labs from her hospital stay here. Need to fax the path report to Dr. F.
I have no idea what it means but Jess ate half an orange more than an hour ago and so far it's stayed down. She's trying an anti-nausea patch. While it doesn't keep her from vomiting she is not doing it as much. Maybe that's helping with the orange.
She said tonight that she doesn't think about having had a BLA about a month ago, she thinks about it being almost a month since she ate food. I told her I think the same thing, but I think of Justin as having had surgery a month ago.

Friday, May 29, 2009

To make chocolate shavings, warm the smooth back surface of a chocolate bar by stroking it with your palm, then scrape the blade of a paring knife across it at a 45-degree angle.
May 29

Jess is still having some trouble. We're working on some doses to see how she does with higher hydro. Tomorrow we're trying a different kind of anti nausea meds. I told her it was a lot like being pregnant!
We're not taking Dad to lunch tomorrow. I know Jess isn't up to it and I'm not ready to leave her home alone for that long when I'm not close to home. I work just four blocks from the house, so I don't see that as a problem.
I have a phone appointment with Dr. F Sunday night. Wonder what he'll have to say. He requested the appointment after getting the report from Dr. Chiang.

Thursday, May 28, 2009

The cocao plant is indigenous to Central and South America and produces a multihead pod that is shaped like a mini football.
May 28

Wednesday, May 27, 2009

Supplementing the average American diet with half an ounce of dark chocolate and four tablespoons of cocoa powder per day may have a health effect on blood cholesterol levels.
May 27

And the beat goes on............................nothing has changed.

Tuesday, May 26, 2009

Shannon: As if I'm going to start eating chocolate.
Boone: Shannon, we may be here for awhile. - From the TV series Lost
May 26

It rained all day today.
Nothing much different with J&J today.

Monday, May 25, 2009

Grasshopper pie has a chocolate cookie crumb crust and is typically a gelatin and whipped cream dessert with creme de menthe, drizzled with chocolate ganache.
May 25

I've been having a hard time today remembering that it is Monday. I kept thinking it was Saturday. Three day weekends don't usually confuse me like this. I think it has something to do with Jess having been in the hospital.
Today my dad turned 90. His official party was last Sunday. Elsie brought him to town today and we went and ate lunch with them. Sue & Shan were there too. Jess just stayed a little bit and then had me take her home. As we were driving out to Village Inn, I thought she didn't feel too good. She had seemed better when she first got up this morning.
Before she asked me to take her home she took 20 mg of hydro. We can't be sure whether she needed that much extra or if she lost the other when she vomited this morning. She had drank too much water in too short a time period. She seemed to feel better after she took the 20 mg. Definitely a learning process.
I haven't seem Justin for a couple of days. I should call him tomorrow and have him come by.

Sunday, May 24, 2009

Among life's mysteries is how a two-pound box of chocolate can make a person gain five pounds. - Anonymous
May 23/24

Jess is home from the hospital. It seems like it's been a long week. Probably a lot longer for her. I'm glad that tomorrow is a holiday and the store is closed. Now I need to seriously start cleaning, or at least considering cleaning my house.
The first week home after BLAs has been eventful. Thankfully they didn't both have problems. So far Justin seems to be doing pretty good. Probably the most noticeable think is that his shoulders are straight. He never had a true buffalo hump, just terribly slumped shoulders that would periodically straighten up. Actually, I found a picture on some medical website about Cushing's that showed a hump that looked just like Justin's. I used to walk past him and poke him in the back and tell him to straighten up having no idea what was really wrong.
A whole day off tomorrow and nothing that I have to do, wonder what I will do.

Friday, May 22, 2009

Chocolate Black Russian
1 oz. Kahlua
1/2 cup chocolate ice

1/2 oz vodka
Blend ingredients and pour into
a large cocktail glass -

May 22

Jess is spending her third night in the hospital. I'm home for just a bit. I was in and out of her room all day. When I went back about 5 p.m. she seemed better than she has in days. Although I could hear her throwing up as I came down the hall. She said she thought that she gagged on a pill she was taking. She was pretty animated after that, ate a little sherbet and was talking and watching TV.
When I left last night she seemed pretty good. I got there around 7 this morning and she looked sick. I was shocked at how bad she looked. Then 8:00 came around and she couldn't get her hydro down without vomiting. The nurse wasn't too concerned even though I'd told her why it was critical that she get the hydro. I asked if she could have an injectable. hhmm, hhmm, hhmm. She'd have to call the doctor and he'd have to okay it, etc., etc. Right, okay, call the doctor. I was starting to get upset, Jess was getting worse and while I don't think she was in a crisis, I think she would of been headed there fast.
I can't remember where I was going but I ran into my sister, Sue, who works in Human Resources at the hospital. She asked me what was wrong and I told her. By now it's a half hour to forty five minutes after she should of had her dose, and I was getting a bit panicked as I wasn't sure she was going to get anything before she had a major medical meltdown (or I did). Sue said we needed to talk to Kelly who is the social worker for the hospital. I had no idea she could help me. Kelly was right there in the hall and Sue went over and explained my concerns and Kelly went and had a talk with the nurse. I guess the nurse then went ahead and called the doctor and they got him out of an exam room to talk to her. I did understand later that there are certain times (that would be clock time) when you call the doctors unless it's serious. I hadn't yet convinced her it was serious (!).
Dr. Matchell showed up a few minutes later (his office is just across the lawn from the hospital) and one of the first thing he said was that they should give her 100 mg of solu-cortef in her IV. YEA! That's what I was hoping for. We decided that he had studied up on this as he seemed sure of himself and yesterday when I had mentioned it he heemed and hawed. So good for him, he might start to redeem himself for the way he treated Justin and I when I was first looking for a dx.
By the time he had showed up I had gone to Sue's office and found Dr. F's emergency letter in my email and printed it out. I had not brought one with me as I didn't believe she was in crisis, but by now she could of been headed there. After he had ordered the IV I handed him the letter and he glanced over it, nodding his head. Guess what he'd found agreed with Dr. F! He gave the letter to the nurse and as they were all leaving the room later I heard her telling someone to copy it and one should stay in her file at the hospital and one go to the doctor's office.
I felt much better after they got the IV started. I had been afraid that everything she had gained with potassium was going to be lost. Her labs gained the most in potassium today after she had the IV.
She also had another x-ray today and he said things were cleaning out. He also ordered an abdominal CT to make sure everything was okay there. Must be as we never heard any results.
Well, headed back to the hospital, Bill's just leaving for work. This morning as I ran this all through my head, I think I figured out how this all came about.
10:40 p.m.
Just left the hospital. Jess seems to be doing very good. She hadn't vomited again and did keep down the sherbet she ate.
So here's what I think. While in Milwaukee we used a lot of stool softeners and suppositories. They seemed to be working, not as fast as I thought they would, but working. She was keeping nothing down so when she quit having BMs, I presumed she was empty. I had originally thought that she was vomiting because she was constipated and there just wasn't room for anymore (!). But when I thought it was all out and she was still vomiting I was stumped. But from the x-rays at the hospital we know there was a lot more in there. So I think it was a vicious circle. She was constipated, nothing would stay down so she got dehydrated, because she got dehydrated nothing would move in her bowels, because nothing would move, she could keep nothing down, because she could keep nothing down, she got more dehydrated, and on and on and on.
I'm also wondering if she was absorbing her hydro okay. And of course if she wasn't feeling good she might of been using it up faster. I'm guessing her solu-cortef IV has a lot to do with how good she is feeling now. And of course all the IV laxatives. So we are definitely learning things here. Her mood was very good tonight, almost like her good days before surgery. I'm thinking she might be discharged tomorrow.
This morning really was frustrating, I just could not make the nurse understand - THE HYDRO IS VERY IMPORTANT TO HER LIVING! And I was very nice about it, maybe she would of believed me if I'd been really cranky about it all, but just didn't have that in me. I just wanted Jess to get her hydro.
I think what has thrown me all along is that she has never had any abdominal pain. I had presumed that if she was still badly constipated there would be pain.

Thursday, May 21, 2009

At first, cocoa beans are creamy beige in color, but they change to purple when exposed to air.
May 21
One more night in the hospital for Jess. If the laxatives (sorry Jess) work and if her potassium stays up, she will be released tomorrow. We'll have to keep on top of things and hopefully things will work themselves out.

Wednesday, May 20, 2009

What you see before you, my friend, is the result of a lifetime of chocolate. - Katherine Hepburn
May 20

Took Jess to the ER earlier. They ended up admitting her. Some of her labs were off and she's still vomitting. I think we may have a handle on it. While she seems to feel pretty good, I think her hydro dose is too low. We're going to switch things around a little and see what happens. Of course while in the hospital they will only administer the meds as they were prescribed. Guess it won't hurt if they don't know that I gave her 5 mg of hydro before I left the hospital. If I'd gone through proper channels, we would of had to talk to a doctor that has no idea what is going on. I hope my instincts are right. It seemed that the labs that were off would indicate AI, even though she really isn't exhibiting many signs of that.
I came home and will go back as soon as I finish papers in the morning.

Tuesday, May 19, 2009

Boston Cream Pie was created by chef M. Sanzian at Boston's Parker House Hotel in 1855. This cake has two layers of sponge cake filled with vanilla custard, topped with a chocolate glaze.
May 19

I've cleaned the inside of my fridge. Looks good, wonder why I didn't do it ages ago. Have sorted some of the junk mail and done a little laundry. Too bad that's just the tip of the iceberg.
My niece, Tanya & her three month old son, are visiting her mother this week. She brought Oliver in the store today to order some photos. He is so cute and he laughs a lot. They're moving from South Dakota to Kansas City so we might see them more often.
Jess is still vomiting some.
Once again my cell stayed in my purse at work and I never even noticed until late in the day. Obviously, I don't get a lot of calls!

Monday, May 18, 2009

Chocolate stain removal: Rinse stain with cold water. Rub in liquid detergent: let sit for five minutes. Soak for ten minutes in cold water and rub every three to five minutes. Rinse thoroughly.
May 18

The few days we've been home since J&J's surgeries seem kind of strange. It's as if I've walked back into my life after being absent for a very long time. I don't quite know where I fit or what I should be doing. Well, I guess it's pretty obvious what I should be doing at home - cleaning house. I must of been half blind! If I think about cleaning the house as a whole, it's way to daunting. So I'm just starting to do a little here and there and it'll get done. It'd be easier if Bill didn't sleep days. With Cushing's, his sleep isn't the best and I hate to make too much noise and wake him up. So I don't get a lot of cleaning done while he's home.
Today, I was half way through the workday when I realized I had never taken my cell phone out of my purse. I would never of done that before surgery. I always wanted the phone with me in case I got a call from a doctor's office. As I was working, I felt really strange - it occurred to me today how much time I have spent thinking of things related to Cushing's. I would run scenarios through my mind in regard to setting up appointments, the appointments themselves, what would happen if the appointment went this way, or if it went that way. I think I was totally consumed by Cushing's. Today was so different. I could keep my mind on what I was doing, I didn't have to check and double check what I had just done.
Yesterday at Dad's birthday party, no one (meaning my sisters) would ask me to do anything. They just let me wander around and take pictures. I thought about going to help a few times, but was pretty sure they would tell me to just take it easy. So I just decided I'd do that. I felt a little guilty, but not much. They were probably afraid they'd send me over the edge!
Jess came down to the store for a little bit today. Think she just wanted to get out of the house.
So starts our first week home without Cushing's, at least for the kids.

Sunday, May 17, 2009

Any sane person loves chocolate. - Bob Greene

This was a big weekend for the family. First, J&J & I got home about 12:30 a.m. Saturday. The rest of the day was pretty much a waste. Jess slept most of the day. Not sure what Justin did as he went home.

Yesterday morning there was a baby shower for my niece and her little boy. Last night my sister and BIL had a party. Today we celebrated my dad's 90th birthday. His birthday is a week from tomorrow. We opted to only attend Dad's party. I wasn't sure Jess was up to too much activity.

There was a good turnout. It was a lunch at the church. His church gets out about noon, so that worked really good. Only three people out of our entire family weren't there. That's pretty good. A lot of church members came and quite a few from the community. Dad's only living sibling, Arthur, was there and one of their nephews, Dave, from the Black Hills came down with his wife.

My sister, Myrna, decorated a cake for him. Had to get a picture of Dad and Vivian. Vivian and her family were our neighbors for years. Dad and her husband helped each other out with farming and chores, etc., when needed. Mom and Vivian were good friends. They saved each other many a trip to town by lending each other things or picking up something in town for the other one. Our families were in 4-H together. Vivian sold her farm and moved to town several years ago. Her husband had died many years earlier and it was just too hard for her on the farm by herself. Dad, Dave & Uncle Arthur Dad & us kids - Bob, Sue, Sam & me (in back) Elsie & Myrna are seated Justin was helping do dishes! Really couldn't pass up that shot, even though he kept his face hidden. Jess left early with one of my nieces and went with her to visit her in-laws for a bit. I think it was good for Jess to do something "normal." I had really hoped to get a photo of all the family that was there. But some had to start leaving early and it just didn't work out. Jess left before any of the group photos were taken. In fact I only got a couple of photos of her. I didn't post them because I wasn't sure she'd like them. She actually ate a little today, very little and very slowly. But it has stayed down. I think things are turning around for her, she has kept everything down for about 24 hours. Of course it isn't much, but it's a good start. I always thought it odd, that while she couldn't keep anything down, she never felt bad and wasn't weak or shaky. She also has stayed up longer today than she has since surgery.

After we got home from Dad's party we went to a graduation reception for a little bit. Shelby, the twins' older sister graduated from high school today.

Friday, May 15, 2009

If one swallows a cup of chocolate only three hours after a copious lunch, everything will be perfectly digested and there will still be room for dinner. - Anthelme Brilllat-Savarin (1755-1826)
May 15

Almost packed to go home. Taxi arrives in one and a half hours. Jess is getting her packing done. Justin packed overnight. I thought he was just going to stay up until we left, but he laid down a couple of hours ago. Won't be fun waking him up!
We should get in to Denver about 6:00 tonight (that's 7:00 our time). It's only about a three hour drive home from there. We'll see how we feel when we get there and then decide whether we make it home tonight.
This is a big family weekend. There is a baby shower for my niece. And most will be meeting her little boy,Oliver, for the first time.
One of my sisters and BIL are throwing a party (which is something they rarely do). It's to celebrate several things - Ronnie just turned 60, he's one year cancer free and their 36th anniversary was a few days ago.
Sunday is a party for my dad's 90th birthday. His birthday is the 25th of this month.
His party is the one event I want to make sure we get to. I think the whole family will be there.
Well, we're out of here in a little bit. I hope the kids do okay on the trip home. And of course after we get home.

Thursday, May 14, 2009

"How Chocolate Can Be Good for Your Painting" is an essay on that suggests painting a monochrome picture using only "chocolately" browns or a three-tone painting using the colors of white, milk and dark chocolate.
May 14

I did some of our laundry today. It seems easier to pack if most everythng is clean. I've been crocheting and getting a lot done on the baby blanket. The kids have both been sleeping.
We see Dr. Chiang today for our follow up appointment. I imagine it will go good.
Checkups were good. Jess got a stronger prescription for nausea. She should follow up with Andy and have her liver panel checked. Dr. C said he would be glad to talk to Andy if needed.
Justin is doing fine.
When we left Dr. C said that there was begining to be a parade of "us." I told him that it was because he was so good. And he is. I'm thinking we may see him again at some point for Bill. We'll have to see what his pit surgery brings first. Maybe with luck, he'll get a cure first time and his adrenals will quit overproducing aldosterone.
Leaving for home in the morning.

Wednesday, May 13, 2009

It was at Prince Albert's Exposition in London in 1851 that Americans were first introduced to bonbons, chocolate creams, hand candies (called "boiled sweets") and caramels.
May 13

Tired, bored, not much to say tonight. Justin seems the same. Jess still vomits some and sleeps a lot. We met Terry, from the Cushing's board, and her daughter. It was nice to get out of the motel. They seem really nice.
Tomorrow we have our follow up with Dr. Chiang and then go home on Friday.

Tuesday, May 12, 2009

In Mexico, the caliber of the cook is often judged by the volume of their chocolate foam. The foam represents the energy of the person who makes the drink.
May 12

When J&J were getting prepped for surgery last Wednesday morning they were right across the hall from each other. I just had to take photos of them from the others room. Jess' room was considerably smaller than Justin's. Here they are last Thursday night after we got back from the hospital.

The shirt that Jess has on is now a little baggie. Justin no longer had as much of the Cushie look. It disappeared around the time he started actively testing for Cushing's. I think there are degrees of highs and lows. I think he has been in an extended low for quite some time now but still is able to pull down highs. Son that must mean he is high for a "normal" person but is lower than what he had originally been.

Does that make sense to anyone but me?

Jess & I went to the hospital today for her to have labs drawn to compare to yesterdays. Dr. C wanted to make sure that her bilirubin wasn't on the rise. He called me late this afternoon (surprised me, I didn't expect to hear from him unless there was something wrong) and told me her labs looked good. Her white blood count was down and the numbers for her liver that were in the 400s yesterday were 99 today. He said all he can figure with her not having been able to keep anything down is that she had some kind of reaction to the anesthetic.

He asked how she was feeling, and said that was really the most important thing. I think she's doing pretty good, at least she acts like it. She's not really eating much yet, just some apple slices and orange juice and some kind of Italian ice when we were at the hospital. But everything is staying down. She has been taking the anti nausea medicine. When she first started taking it, it worried me because she said she no longer could vomit but it felt like she had too. Finally she burped and things were much better then.

I'm hoping things are getting on an even keel.

I've been reading. Finished three books since I've been here. I used to read a lot but haven't much in the last two to three years. While everyone was testing, feeling sick, etc. I just couldn't make myself care about what was happening in a book. I've also been playing on the computer and watching TV.

And I've been crocheting. Below is a baby afghan I'm making for a great niece of mine. I'm just a few months late with it. Then I need to get busy and get another one made for a great nephew. It's also a few months late. I'm using two strands of cotton crochet thread. I've made a few like this already. It makes a pretty stable blanket but I like the look much better than with yarn. And they are so easy to take care of, just throw in the washer and dryer. I have one I made for myself to use on the couch and I really like it.

I'm using a shell stitch and it makes it very pretty.

Monday, May 11, 2009

The Hershey Kiss machine can wrap 550 pieces or more a minute.
May 11

Been a long day. Jess and I spent most of it back at the hospital. She had been keeping nothing down since late Thursday when we got home from their surgeries. What seemed really weird was that she felt good except for vomiting up anything she took in. I know her well enough to know that she really didn't feel sick. So it was a mystery to us.
I know that vomiting is one of the signs of adrenal insufficiency. If she would of seemed like she was actually sick I would of been very concerned. As it was it was just a delema. I finally settled it in my mind that I was waiting until today and would call Dr. Chiang's office for direction. That way I knew he would be in charge. I wasn't sure who would be if we went to the ER.
Turns out they have found nothing. She was dehydrated and had three IV bags of fluid. They did blood test, HIDA scan for her gall bladder, CT of the abdomen and x-rays. Her bilirubin was high but Dr. C also said she had an enlarged liver. We presume that is from the Cushing's but he is going to have her tested agin tomorrow just to make sure it's not on the rise.
He also gave her 25 mg of hydro just to be on the safe side. She also has a prescription for an anti nausea med.
I read and crocheted while I waited.
Lucky Justin got the whole room to himself all day. I never heard him complain about it!

Saturday, May 9, 2009

Dad is great! Give us the chocolate cake! - Bill Cosby
May 9/10

So, whoever put together the calender I'm getting my chocolate quotes from, wasn't real smart. Do they not know that today is Mother's Day? So why a quote about dad?
Things I've learned while J&J are recovering from BLAs:
1. Keep reading glasses by the medicine - if I'm called in the middle of the night, I don't have a pair hanging around my neck.
2. When the body is swollen from surgery, it's the whole body, not just the chest cavity - medic alert bracelets that fit before surgery don't fit anymore. But they should soon.
3. With three people living an one motel room there should be more seating than the bed, couch and office chair. The bar stools (with backs) don't really count as seating. No one could sit in them very long.
4. Recycling is very ingrained in my system. It drives me crazy to just throw things away while we are living here.
5. Waste also bothers me. For instance we could of bought a pint of mayo for $2.49 (or close) or a quart for $1.99. Well, I'm going for the cheapest which then leads to waste. It was also cheaper to buy a jar of 100 suppositories than to buy a jar of 50. Of course, we may really use those 100!
6. The game Chain rxn is fun and a great time killer.
I'm not sure I want this crash course in BLAs but I have to take it. Sort of scary to be in charge of someone elses life in this particular way.
For the kids, it seems that pit surgery was much easier. Of course in the end they didn't have a cure, so..........

Friday, May 8, 2009

The way you eat an Oreo reveals your personality: If you eat one slowly and methodically, that means you're tidy and orderly to the point of being anal-retentive and irritating to others.
May 8
Having nothing to do is always better in theory than in practice. I do have things to do, computer for entertainment, books and crocheting. But all are better when there is somethng waiting that you should be doing.
But I won't really complain. We need to be waiting here for the kids. Hopefully this is our last stop on the Cushing's journey. Both kids are sleeping, or at least appear to be. Sometimes I've thought Jess was asleep and she wasn't.
I may have to get something stronger for Justin to use besides just stool softeners. Pain killers really have an affect on him. I'm not sure about Jess, might need to question her about this. Justin opened his eyes for a bit and told me to wait to go get anything, said he might not need it.
I've done the dishes, messed around on the computer and read some. Must be about time to start with the crocheting. The projects I have really need to get done.
1:30 p.m.
Jess has been up and showered. She'll need to get up to take her hydro soon. She says we'll take a walk then. I guess I'll need to get Justin up for his hydro also. We'll see if he wants to walk with us. Doctors orders, walk a few times everyday.
I've had lunch, read some more. Still contemplating that crocheting.
Made a quick trip to Kmart, needed a few things. Seems to be working for Justin but not so much for Jess. If we ever get this to work, I'm sure she'll start feeling better. Pain killers can cause severe constipation (such a lovely subject) which causes severe pain, which then makes you want more pain killers. Vicious circle. When it makes you vomit, somethings got to give! Soon I hope.
Got busy watching movies - The Object of My Affection & Picture Perfect. That's more movies than I've watched in a long time. Started on my crocheting, talked to Bill and talked to my brother, Bob and talked to my boss, Ardath. Guess it's been raining every night since we left. Bill's rig hasn't moved yet. UGH

Thursday, May 7, 2009

The three best pleasures in life are scratching, sneezing and eating chocolate. - Anonymous
May 7

J&J were discharged from the hospital this morning. We've settled back in to the hotel room and it feels much better than the hospital. I slept at the hospital last night, not very comfortable. There was a chair that pulled out into a bed. It was about as comfortable as those type can be. But it was better than having to sit up.

Both kids seem to be feeling pretty good. They were released on the dose of hydro that Dr. F prescribes. It seems that others have needed more. So far, so good. I'm sure they/we will recognize if they need more. Both are somewhat swollen. Justin doesn't think he is but he can't put on his medic alert bracelet, and it should be a little big on him. Jess' doesn't fit at the moment either. But you can tell just by looking that she is swollen. Yesterday after massive doses of hydro, her eyes looked like slits. Was almost hard to tell if she was awake or not.
Seems Justin is actually in more pain than I thought. Mostly his shoulder. Hope it doesn't last too long.
Everyone is mostly laying around, watching TV, reading or on the computer.
Hoping tomorrow their pain goes down some.

Wednesday, May 6, 2009

Butter is an essential ingredient in baking. It enhances flavor, texture, moistness and even leavening. Grade AA unsalted butter is a must for your chocolate baked goods.
May 6
It's sorta been a long day. Taxi arrived at 5a.m. and we got to the hospital a few minutes later. Both surgeries went very well. We have photos taken "inside" during surgery. They really aren't bad but they aren't that great either so I'll refrain from posting them!
Everyone at the hospital is very nice. The kids did get put together in a double room. Jess is eating supper and Justin ate half the skin off his chicken and about half his mashed potatoes and went back to sleep. I have to remember that he's a few hours behind Jess and he also never slept last night. Both look great compared to what they looked like after their pituitary surgery last year. I think I understand why we have been told that the BLA is much easier than pit surgery, at least as far as the surgery goes. We'll have to see how everything else goes.
Saw an interesting fashion statement in the cafeteria (Jess says she's seen it before) - black eye shadow, yes black! Wow, looks like a major trauma occurred, especially when she also used about 1/4" of black shadow under her eyes! Interesting to say the least.
Oh, I'm tired, I'll tell more tomorrow.

Tuesday, May 5, 2009

Chocolate Margarita

1 1/2 oz. tequila

1 oz. Godiva chocolate liquor

3/4 oz. cream

1 tbsp. chocolate syrup

2 oz. orange juice

Combine in a shaker and pour into a
margarita glass.


May 5

We met with Dr. Chiang this morning. He is just as nice as everyone has said he is. They each had a short appointment by themselves and then we all met together to go over the actual procedure. Since I didn't feel like Justin was going to need any defense (as in no doctor was going to question what was wrong with him) I didn't even go in to his appointment with him. Figured he was old enough to handle it on his own. I'm progressing!
I asked Dr. Chiang if I could get a photo of him and the kids together. After all, he's going to be the one putting an end to Cushing's for them. So here they are.

We went back to the room then because our appointment with the endocrinologist wasn't until late this afternoon. The kids sacked out. Jess, just for awhile.
This afternoon we met with the endo. Not quite what I was expecting. While he did eventually tell us he was just for after care (if needed) he seemed to doubt Justin's dx of Cushing's, questioned whether we were actually doing the right thing by having a BLA. Wondered if there wasn't meds available for them to take. I told him there wasn't anything that could be taken long term. He wanted to know if there might be in a few years. A few years?! Right, like I'm going to keep watching J&J suffer from Cushing's and get progressively worse. I don't think so. I thought that he truly doesn't understand Cushing's, especially cyclic. He was questioning their lows and normals. Thankfully he was nice about it, but I felt like we wasted time there. Not even sure that he has learned anything about Cushing's by studying the charts of all the patients that have come through his office in preparation for surgery with Dr. Chiang. Thankfully he doesn't have veto power!
We need to be up and at it early tomorrow. The taxi comes at 5 a.m. and Jess checks in at 5:30. While doing their pre op stuff over the phone today, I did ask if there was any chance of them being in the same room. The gal I was talking to said she would talk to admissions about that to make it easier. Hope that works out.
Tomorrow will be a long day with two surgeries to wait through.

Monday, May 4, 2009

Black Bottom Pie is a rich pie with a layer of dark chocolate custard, topped with a layer of rum custard and garnished with whipped cream and chocolate shavings.
May 4

We made it to Milwaukee today and are settled into our room. We've eaten and bought groceries. Now we're just sitting around. Tomorrow we have doctors appointments.

When we went to get groceries we decided to eat out first. The rest of the meals will be in the room. We thought about eating here but it's closed. Love their sign though.

When Justin started digging through our stash it occurred to me that we have an awful lot of drugs with us.

Only a few are mine.
Tomorrow will be a long day. J&J each have two doctors appointments. But I hear that the endo appointment isn't bad. He doesn't try to tell the patient that they don't really have Cushing's
Update tomorrow.

Sunday, May 3, 2009

Oh no, when I wake up in the morning it will really be time to go. I don't know if I'm ready!!!!!!!!!! Yes, I'm packed except the things I need in the morning but mentally, I'M NOT READY. But time isn't waiting for me to get my stuff together.

Saturday, May 2, 2009

In 1730, cocoa beans had dropped in price from $3 per pound to being within the financial reach of those other than the very wealthy.
May 2/3

Well, since we leave for Milwaukee in less than thirty six hours you'd think I was getting things in order. Nope. Haven't packed a thing, have barely made a list, have cleaned no house or done any laundry. But I suppose that everything that really needs to be done, will be.
I'm not sure why I'm dragging my feet. I really want to put the kids' Cushing's behind us, yet I feel reluctant to go. I'm not sure what's up with me at the moment.
Justin is off work now until sometime after his surgery. He went with us to take Dad to lunch today. Good timing on my part since I was planning on cleaning up Dad's rosebushes. He was a big help to Jess & I. Maybe I should say that we helped him. The bed looks good and there are a few new growths coming up. I really hope the bush comes back to all it's glory. My mom said it was there when she was a kid and she would be close to ninety now. I grew up on the same farm my mom did.
I suppose these roses would be considered antiques but when I have looked at sites featuring antique roses I've never seen any that look like these. They have hundreds of petals and smell so good. I wish I had a photo to send to some experts on antique roses. I'm sure there will be no roses on the new growth this year and would wonder if there will be any for the next couple of years. I hope Dad gets to see them bloom again. He always liked those roses. I'm going to try and transplant some to my place some year. All my sisters have tried and never had any luck, but they told me they never worked too hard at it. They all are much better gardeners than me, so I'm not sure why I think I can do something they couldn't. But we'll see.
Somehow it's easier to talk about roses than it is to get started on the things I need to get done.

Friday, May 1, 2009

SpongeBob: Let's think of some ideas to sell the chocolate bars.
Patrick: I know, let's get naked.
SpongeBob: No, let's save that for when we sell real estate. - From SongeBob SquarePants
May 1

It's late and we have a long day tomorrow. We're going to cut Dad's rosebushes when we go out to take him to lunch. The grasshoppers stripped the bushes last year and it seems it must have pretty much killed them as there is nothing green on any of the canes. Last week I did see there was a few little tiny new shoots, if that is what they're called, coming out of the ground. I hope the bush makes a comeback, it's been there since my mom was a little girl. So it's probably well over eighty years old.
Justin is done working until sometime after surgery. He's going to go to lunch with us tomorrow. He hasn't seen Dad for quite some time.