Recipies from the Olaf Garden

Chocolate Lefse
7 layers of Minnesotan Chocolate Heaven.

Layer 1- Lefse
Layer 2- Mint chocolate fudge (1/2 cup sweetened condensed milk, 1 c chocolate chips, 1/2 tsp mint extract, nuked and stirred)
Layer 3- Lefse
Layer 4- Cinnamon Cream Cheese Chocolate (4 oz cream cheese, 1/2 c chocolate chips, 1 tsp cinnamon, nuked and stirred)
Layer 5- Lefse
Layer 6- Sliced bananas and chopped walnuts
Layer 7-Whipped Chocolate Cream (3/4c whipping cream and 1/4 c chocolate chips melted together, cool in fridge, then whip like normal whipping cream)
Top with a layer of shredded coconut.

Other Menu ideas for the Olaf Garden Include:

Linguni with Swedish meatballs
Lutefish Scampi
Braised Bambi

Remarkable kids

My kids are a rather remarkable group. People just keep remarking on them. Galen has been the case study of several autism studies and I am sure Ian is making his way into medical journals as we speak. Ewan gets remarks about his compassionate character and Clay- well he is just so cute...

But most of the remarks happen when we are all out together and they go something like this.
"Beautiful children, 4 of them?"
"Yep," we say."
"All boys?" they ask as they examine the faces closely.
"Yep." we say.
"You must have your hands full."
"Yep." we laugh.

Of course, the alternative ending happens quite often too.

"Going to try for some girls?"
"Thinking about it," Mike and I laugh, exchanges meaningful glances.

These conversations probably happen about 10 times per day when we are out as a family. I never would have thought that we would draw so much attention doing everyday thing.

Raise your hands if you want the notes from today.

Sorry, You didn't raise your hand, You thought I would just give it to you anyways. Sorry too late.

Oh, you're raising your hand now? And you think I will be forgiving and compassionate? Or maybe just practical.....

Well, it was a long day with only 1 Dr appointment. We met with Dr Moir of general surgery. He said he only had 2 things he wanted us to take home from the discussion- but I took notes and made lots of other connections he didn't guess I understood.

Anyways, Dr. Moir's job is to get to the area where Dr Raffle does the work. So they basically plan to give Ian a C section (says he will do this with out cutting any muscles), and push everything out of the way to Dr Raffle can get to the lower spinal cord and fluid sack. There is also a potential secondary incision going in the crease to the back side of the rectum.

Ian's official diagnosis is "neurogenic bowel", and what most of the long term care issues will be with the functioning of the bowels. For most of these issues we will be dealing with Dr Freese of GI. Removing the fluid sack, detethering the spinal cord, tightening the rectal muscles will all help with this process of gaining continence with his bowels. (the GIs will work with us on laxatives, bowel training and whatever else is needed)

Meanwhile, before they open Ian's belly they want to have a list of everything that should be done at the time, so we are off to see more Drs. This time we are seeing Dr Hughsman of Urology. On April 3rd he will have urinary x-ray, renal ultrasound and a urodynamic study. Then on the 4th, we will be meeting with Dr Hughsman and then hopefully Dr Raffle and get a very clear understanding of how everything is functioning and what things should be done, and probably schedule surgery at that time.

Dr Moir says that most kids are mostly healed from this kind of surgery in 1 week, and that the vast majority of that week will be in the hospital.


Meanwhile, I have made sure to get contacts on every Doctor I am working with and am writing down lots of questions to ask. And I have secretaries in 3 divisions at the Mayo that have promised to help us anyway they can. I think Ian must charm them, of course the other option is that they feel sorry for us when we march all 4 beautiful boys around their waiting rooms and offices until things get done:)

While talking on the phone with another Doctor, Moir explained that they had a 4 year old boy with an "impressive case of internal myelomeningocele."

What is really increadable to me though, is how well he has and is doing with what his spinal cord looks like.

more I forgot until now

Ian also has fluid in the middle of his spinal cord (almost like a dual/split cord in some areas) and some other cord abnormalities. I am not sure what that means for function or treatment. I will be asking questions.

at the mayo

Ian's case is slowly being striped down to the bone (so to say). It turns out his tethered spinal cord is not a big deal- although they will fix that when they handle the rest of the things. The fluid sack is a bigger thing. And due to gravity they tend to grow and press even more on the rectum over time. He also has some loose muscles in his rectum and butt that will be taken in, and it looks like there is some kidney issues.

He will be seeing a urologist and have a general surgery consult tomorrow. We are staying at the Radisson. Our first appointment tomorrow is at 2pm. So I don't think we will have too much scheduled for this weekend.

So, we like the mayo keep learning more about him before there is any action (besides the learning type).

Plan

For those of you who wish to know our plan for tomorrow is the following:

We leave home about 7:30 am drive south and east for 5-6 hours, eat lunch, sit in a waiting room, consult with a doctor and then make plans for the remainder of the weekend based on the doctor consult.

pain

The forest is in pain. It feels betrayed and used. Somebody took a truck up the trails and cut down living trees, and then left the ruminates of the trees strewn across the trails.

The trees themselves are strong, for their roots go deep and they drink from the joy of the heavens.

Do I have to build a gate?

Finally

We have an appointment with Dr. Raffle. On Thursday March 22, 1:45pm. At the Gondola Building 8 South. (why did I give you all this detailed info?, So I can find it online when I misplace my note paper).

This appointment is a "consult". That means we have no schedule of events until after this meeting. So we will pack for 3 days and if we don't need it all that is fine, if we do need it then we can stay as long as necessary. And if we have free time after the appoint a visit to the Science Museum with the kids and the Temple without the kids may be in order (assuming we find a sitter).

Of course I am not against getting everything all done and squared away as soon as possible, but that it just the type of person I am.

Pictures

Today we took all the boys to a place to dress up in costume and get their "Antique" style pics taken. If they are half as cute as I think they will be we are all in for a treat. There will be group pics of all my 4 boys and individual pics of each.

The previously posted pictures are just some I did at home. I will probably not see the ones taken today until April 10th. And Galen and Ewan didn't pose for me today- but the pros got them.

I am planning to call the place who does the pics and tell them what I would like to see of each of these pics so you may all have nice pics of my boys again. They would be stupid not to listen to me.

and what did you do with your saturday?

playing in black and white

caution blogger with pictures

The new reality

I'd never thought I would tell Ian the following:
"Now Ian, Either you have to go back into the bath tub and poop, or I will shove this up your butt." I say as I'm holding a suppository in a rubber gloved hand.

He elected to climb back into the bath tub. It is really weird knowing that the nerve control he has down there makes it very challenging to produce a bowel movement. But one thing we learned long ago is that baths seem to make it easier.

Someday, when this is all taken care of we are going to celebrate with a new bath tub (and a good drain cleaning).

angels

Here are 2 little angels for your viewing pleasure.

So far no words from any doctors today.

The Doc Called

And here are the notes I took while on the phone:

Dr Freeze- fairly significant abnormality in spine- causing stooling abnormality and urinary- tethered cord- spinal cord attached to bottom of rotibral (don't know right spelling here) column- stretched more and more as patient grows taller. Perminate neuro damage and nerves stretched. Nerves too stretched to signal rectum to work right

Pooched out area of spinal fluid in front of rectum- big sac of fluid is pushing in on rectum.

Needs to see a neurosurgeon- snipped tether- fluid sac needs to be fixed so not to cause major problems. – request for Doc Raffle (pediatric neurology)- appointment for spring break?

http://cpmcnet.columbia.edu/dept/nsg/PNS/TetheredSpinalCord.html

yesterday

I am still trying to get a hold of the doc for test results and maintenance meds.
The trip home was smooth and long. We didn't stop even once. Mom fed us when we got in and I took my boys home, read to them and sent them to bed.

Yesterday's MRI lasted all morning. Before they did the MRI they wanted to make sure that he was absolutely metal free, so they did a few more x rays, which I have learned to get a sneak peek of when they first come out. (it is all digital now, and all you have to do is have a good look the the computer screen when it comes up).

Then, of course they had to put him to sleep, and gave him another IV. He didn't want to wake up, but when he finally did we were out of there like a bat out of hell. We got him dressed and dropped him in the stroller and packed up and left the hotel all with in 45 minutes of him being awake.

Today I have been trying to pick up some of the balls that were dropped as the result of the long stay in Rochester. It's a slow process.

we are scadadeling home- the docs will have to catch us by phone. I will talk more later.

How much is a butt load of money?

$.80 and 2 apricot pits.

That's right. Today they pulled out 3 quarters and 2 apricot pits, for a grand total of $.80. The most recent date on the quarters was 2002. So anytime after he was born.

We are back at the hotel and the MRI is scheduled for tomorrow morning. Ian is allowed to eat now. So he just downed 2 yogurts and is now working on a chocolate muffin.

The doc came back to us after they pulled out the quarters and said they were done when she handed them to me, so we waited and waited to go back to see him as he woke up, another hour later she came back and said that she saw some other hard oppaquish things on the xray and then brought him back in the OR to remove those. They looked like apricot pits, but she sent them to pathology to be sure. And then Dad got to go in to be with Ian while he was waking and Clay tried many time to go find his brother, but was always intercepted before he reached the OR or recovery rooms, but he obviously knew the way. Clay fell asleep just minutes before we were allowed back there with Ian.

So now we can rest until tomorrow's procedure.

What Sundays are for

Clay is working fairly quietly on making our hotel room into a disaster zone.
Galen and Ewan went home to with Mom and Dad. They are going over to Ethan's house for dinner. Galen and Ewan really missed us, and will miss us more before this is all over. Galen had to have a hug from me every 5 minutes last night, and Then he and Ewan ganged up on Ian for a "huggie".

Mike and Ian are napping and I am just taking it easy- we must be in the eye of the storm. In the eye of the storm there are no winds and the sun can shine- but it only lasts so long.

I gave Ian his meds today and so far they have produced enough poo/water to soak through 2 pairs of pants- good thing the laundry here is free. Meanwhile Ian's last diaper reminded me a little of bitty baby diapers- kinda looks like somebody sneezed in it.

After Mike's nap we will go on a walk and maybe find something for dinner.

Ian grabbed 2 cheddar bunnies about an hour ago. I made him spit it out of his mouth and tried to explain to him that he can only eat a clear liquid diet. He cried on the floor for a minute before finishing his chicken broth. He says he's hungry, and I understand.

GO TO SLEEP

My kids are here. We had a fun time asking some of the small hotels around here if they had room for a family of 4 small boys. You should have seen the expressions on their faces when I asked.

So we are staying at a chain hotel. There is less personal responsibility for clean up by the front desk staff, and they have the room we need.

I still haven't had a chance to shower yet. I am hoping that the crib gets here so I can put Clay down before showering.

The other boys are still very full of energy.

Ian is enjoying being with his brothers. He is still on a clear liquid diet until Sunday night when it changes to eating nothing.

Monday morning he will go in for an xray, and if the coins are still there they will take another little look up his butt with the flexible signophy thingy. Basically one way or another the coins will come out on Monday.

And Tuesday morning is his MRI.

of course if you all don't let me know you are reading these updates, I may feel as if they are serving no purpose and end them.

discharged

We are being discharged for 18 hours. That's right he is now an outpatient. (right after his bath, medications come in from the pharmacy, and official instructions are given).

He is free of tubes and IVs. And enjoying his bath.

Off course he can still only have clear liquids to drink, and will need lots of diaper changes and can't drink anything after midnight Sunday. And on Monday morning he will come in again at 7:30 for another extra and a determination of what to do next.

But at least we have 18 hours to sleep with out nurses.

afternoon update

well after waiting forever (it felt like) he finally got his xrays. His bowels are looking better, but some coins are still there.

The doc was surprised that his xrays weren't done when she came around, and because it is Saturday I wouldn't be surprised if we didn't see her again today- Saturdays are hard to get anything done in hospitals. All the B staff is on.

But Mikey and the boys are coming down. So we got a nice room across the street at the Marriott Courtyard.

clearly better

Ian's poop has reached that mark called clear. And he is going without his nose hose until after the xray to decide if they need to do more.

he ate all his breakfast- maybe drank is a better term. He had chicken broth, lemonade and raspberry ice. He liked the lemonade and played for a while in the playroom.

He has just been invited down to the playroom at 10:30 to go with the group to visit the helicopter. I think we will go if we can.

useless update

well,
I can't tell you much about what happened during the night. I only remember 1 changing of Ian. And so far nothing has happened today. I will let you know our status when I find out.

well, we can't sat there isn't progress. Ian managed a very watery movement today in the playroom. They don't want him back in there until he is done with the Golightly, this is of course much to Ian's dismay.

He didn't want to crawl back into bed to go to sleep. He wanted to be cuddled by me. And he fell asleep on my bedish thing.

now most of his movements consist of water mixed with old chips from the interior buildup in his colon.

Mom is having us move hotels tomorrow- to a place across the street from here- then I might be able to get a shower and nap.

I am hoping if we don't go home tomorrow that my family will come here. My other rug rats are growing up with out there laughing.

Well I better sleep while the sleeping is possible. This hospital wakes up at 7 am. And of course at least once every hour.

slow bowels

slow
the xray showed that he might have pooped about 1 coin and 1/3 to 1/2 of his bowel content during the night. That means there is still alot to go.

He is on the second gallon of Golightly. And right now his is still out like a light during his nap time. The nurses and doctors are emptying the hospital for the weekend. And I have lots of questions, but none are answerable now.

The doctors, nurses and us are all waiting on slow bowels.

noon update

well it is noon. Time for another update. Nothing exciting today. More poop, some very watery poop. That means he is getting closer to being thoroughly cleaned out.

At about 7am he had some more xrays this morning. So far I have not met any of the doctors that I know are working with him on this to ask about them. (I think we met a bunch of interns or something). He is filling and overflowing diapers while playing with trains on the floor; mostly happy.

Mom is still missing, and hasn't come around this morning yet. She is having fun with some purchases now that her appointments are all done.

We are hoping that we can see our own beds this weekend, but no promises yet. At the moment it looks like we could be back here next week for an MRI- My minds goes into a blank protective state when I think about that (don't want to think about schedules in relation to this)- so have a good afternoon. I am ready for lunch.

things that go PHTTTT ! in the night

the nurse has been checking every hour and she even told the orderly the suppository didn't work. But at 5:30. There was quite a little mess under my Ian, and around my Ian, and through my Ian, and...well you get the picture. So they sponge bathed him, changed his sheets and got it all ready again. This time Ian woke up, but only started talking in complete sentences after they had him standing.

They started the golightly again, they are trying to run it until he poops clear. There is still more to go, but his belly is no longer a beach ball. They didn't check his poop for coins. I would have done it. But they are already planning xrays tomorrow.

ever treid to type in the dark?

we have mostly been to sleep for about 4 hours, with the nurses flitting in and out quietly and with a flashlight, as not to disturb Ian.

This last time they decided to talk. It is 2:30 am, and because his abdomen is severely distended the orders came in to stop the golightly and give him a suppository. they pulled it off quickly, with just the flashlight, and Ian slept through it with no peep. They did expect screams.

pray for poop

well, Ian has been hard at play these last few hours. He has made good use of the play room, that is until they closed it a few minutes ago. Then the doc had to bribe him with juice to go back to the room for a quick finger exam of the rectum. She said that everything (except the coins) felt soft in there. And they expect him to poop it all.

But so far we haven't had anything unusual for Ian's diapers. Just 2 dirty and 1 wet. So pray for poop. If he poops it all tonight then he can have his MRI tomorrow and we can all go home.

Right now home sounds really good (and just out of reach)especially as I am approaching the most arduous task of trying to sleep in a hospital.

Ian was not a happy camper

but you wouldn't be either if woke up to air in your belly, 1 coin removed from your anus (the other 3 or 4 are still in there), a tube up your nose, arm restraints on and an IV in your hand.

He also hasn't eaten or drank a bite since 9pm last night.

The procedure was only partially successful, as only 1 coin was removed. He has a shelf of skin inside his anus that made it hard for the signoid thingy to maneuver.

So he was placed with nose hose so they could force lots of goldsomething fluids down him tonight and try to get him to poop everything out.

Once moved to his room (number 3-101 ST. Mary's in Rochester) he was having a fit and then pulled his nose hose out and promptly fell asleep. He is asleep now but in just a few minutes they will move him to a "procedure room" to put it in again and fill him with liquid.

I will keep you updated on what comes down.

if anybody still reads this blog, I thought you would like an update

Ian is going into the hospital tomorrow. St. Mary's at the Mayo Clinic there he will have a flexible sigmoidoscopy. That means they will put him to sleep, stick something up his rear end and pull out about 4 coins/magnets or whatever it is that is in there, along with a bunch of compacted poop.

Then they are going to flush him out. and keep him all night while flushing him out.

While he is under they will bring in a neurologist who will poke and prowd a little to see what kind of neuroresponse he has in that region. Why are we wondering about neuroresponse? Because from the xrays it looks like he has sacral agenesis- or the last few of his tail bones are missing, and that could mean spinal cord could have a few issues down there too.

Cabin Fever Delusions....

If I sold my business today for $10million we would......

buy a Toyota Hybrid SUV (family size), and the best in camping gear and spend the next year flirting from national park to national park. With of course a little bit of Hawaii and Disney world in the process.

And I recognized as a cabin fever delusion because it has 3 distinctive characteristics:
1-involves spending a year out side in sunny locations
2-involve delusions of grandeur (having a biz worth selling for $10 million) and
3-the unlikely circumstances that it would happen quickly, smoothly and that I would be off the hook and free to roam.

But is was a very interesting spontaneous conversation this morning.