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Originally uploaded by jippyjabber.

Look who made a friend. Zach went to watch his cousin dance at a festival down at the Rose Bowl. While we were there we petted a goat and oddly enough a chicken. Then Zach met a this guy. He's wanting to ride but he can't until his osteopena is better and fear breaking bones is less. How cute is my coybow and his friend? Oh and if you've missed me...... can you see how big he is now???? My boy is offically a teenager.

Toes

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Originally uploaded by jippyjabber.

I always start things off with a mani and pedi.

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Originally uploaded by jippyjabber.

The lines were down the block for this house and some others that went ALL out!

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Originally uploaded by jippyjabber.

Check out my Trojan warrior!

I just checked out.
Riding the tides of change I guess.
I didn't think drinking would help, it's not that kind of break I needed.


I am ok. Zach's great. The good always progresses with him. I know sure the bad keeps coming in various forms and doses but so what! The good marches on too.


I signed my divorce papers. We discovered that our final divorced never went through so after all these years we finally settled it. It's a good thing. Also, I mailed off the papers and signed up for another round of free trial of eharmony. I wonder if the curse has lifted and I can actually enjoy a social life.

I had a talk with the nannie. I just told her I was changing her schedule and that I value her help but she has to be reliable and I can't live around her schedule. It's been out of control for too long. I switched her to one night a week. I'll be going to a movie or a coffe shop or taking a class. A date maybe?

It's been in the tripple digits here. It's insanely hot and Zach's been utterly confused by a little problem called umm sweaty bum! Poor kid didn't know what was happening! A quick shower and he recovered. Oh it was funny and I could not laugh.....

I'm getting back on my feet. I think things have to transition and I will always land on my feet. I think it's healthier for me to just go through this stuff and not be so detached all the time. I just felt it and went through it.

Thank you for your kind concern.

What it all means......

When I took Zach for his EEG it was video monitored. There was some activity that was caught on tape. It is common for kids like zach to develope seizures aroung the on set of puberty. Needless to say this is upsetting. Mostly, becuase my brother died of a prolonged seizure when he was 15 years old. So, It worries me greatly.

So I gear up for this new problem. Hmmm first I think I should booze it up and write bad poetry and then gear up for this......it's only fair to take some time to roll in the dirt.


RIght?

THE GOOD NEWS IS SOMETHING SHOWED UP ON THE TEST
AND THE BAD NEWS IS SOMETHING SHOWED UP ON THE TEST............ HA HA HAHA HA...... DAMN YOU SALIZAR!

EEG TOMORROW 8am

I have to keep him awake all night so he falls asleep on his own when he gets there. They just called me to fill in a cancelation.
Zach can stay up for days and last time it did take three days for me to get him to be able to sleep on his own.
I am going to try it and see if it works. So here we are with no warning and no help off to the hospital tomorrow.

I better get some rock star for tonight.

Hard but good times.

UCLA is a challenge for us. Zach is feeling better which means he's cutting back on his meds which means he is going though withdrawls. He can't be more than two inches away from me! He needs lots of water and sleep is distrubed.

On top of this I can't breathe here. I want to get outside!

When I said I was on the five year plan ............. I really mean life time plan.



This is the real rain man and his father....

Hey! Check this out.....

Visual DNA Quiz This is so much Fun!
You click on pictures until you end up with a profile of yourself.
It's nice and I can't wait for Zachary to give it a try!

YOU HAVE TO DO IT! : )

I am starting a social network blog for families with mitchondrial disorders.

This would be really fun if it wasn't about genetics! LOL

You should check outNING It's easy to set up a social network and it's free!

All the families will have their own page and communicate on a main page.

Mutant Families Hey do you think it will offend people if I call it Mutant Families?

Please let me know if you think it is offensive???

I mean it's got to have some fun in there somewhere!

Go ahead and start your own! It's like your blog and all yoru favorite blogs would be in ONE PLACE! How cool is that!

POWNCE INVITES

I have some pownce invites.

Pownce is a new way to send messages, files, events, pictures, and
links to your friends.

Pownce is for large files 100 mb instead of the 10 through yahoo or less I think at AOL ( not sure but it's low)

I am just hanging on..... I am trying to get myself together.
I haven't been up on comments.
I am so sorry.

I think I am little post traumatic.
I know I am
I am also learning that I have the same faulty mitochondria as my son. ..... time to face that head on.

when I get back up to speed you'll know it.

Blogging is hard when you usually isolate when you are low on energy. I used to think I was depressed but I am always so optomistic and that's a conflict......so now I know I am not depressed I am just tired.

I think with all the information I have I can get over this faster than ever before.

Out of LA

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Originally uploaded by jippyjabber.

I love Los Angeles but I'd like to hit the road and get out of LA for a while. I might make a night trip to the beach. I am starting to realize how much Zach's Photophobia affects my life. I think we will start doing more at night and see if he can tolerate some living. We get stuck in the getto appartment and it's a spiritual death to me. I might go to see Bourne by myself. I have to force myself to get out and not let Zach's illness take me down too. I have been down and tired. One good thing ....I am too tired to worry about anything right now. LOL

Finally got zach to leave the house!
I was eating the Nanny's peanutbutter off a spoon.
I got food, cheap wine, cheap movie.


I also saved myself from buying a new Air Conditioner in Zach's room.
It was tilted inwards and water was dripping onto his bed. So we tilted it back out.
It's held in by duck tape. I am not kidding. I live in the getto property in a good part of town.
I would complain but Zach has torn the place up and nobody cared. I think he's getting over that now.
I noticed yesterday he straighted out the rug in his room!

ZACH READ THE NAMES OFF OF SEVERAL PRODUCTS AT THE STORE .....JUST FROM WATCHING TV.

WHY DID I WAIT SO LONG TO GET HIM CABLE?

I am still trying to get the Dmv to give me my name back.
I can't believe how many different people have told me different things.
I have to get my name changed. It seems that my divorce is still a mystery after all these years.

Nothing worse than speding days at LA county court house. The DMV needs to get the facts straight.


Zach is just growing before my eyes. I had to buy him three pairs of swim trunks this summer.

HOME SWEET HOME

I was house sitting for the past week. It 's so strange to come home. I want to live in a house now.
I liked having the dogs to take care of too. We got up and took the dogs out for a walk. We watered the yard early in the monring. Zach was so cute being in charge of the dogs. He picked out some bones and treats from them. He's known these animals from puppyhood so I wasn't scared at all. The big dog is a pit mix and I don't think I would oeffer to watch her if we didn't know her so well. Just some dogs try to over power Zach when he is in a non verbal phase. Zach is getting better at giving commands, from the animal planet addiction he has!

Tomorrow we swim with battery operated sharks.

Zach's pain doctor left. I was worried.
I went into see the Genetics doc. Suddenly things clicked.
He asked us to be in a study, He asked me to give my DNA. ( spit in a petri dish)
He asked me to speak to a commitee. We talked about a support blog would be great for families.
He cares about all the kids waiting to see him and the ones that will never get in.
He's working on a pannel of ten tests to give kids with issues to help rule things out or point them in a direction.
I would have loved a test and some information early on.
Change .........

HONESTY IS NOT ALWAYS THE BEST POLICY

But I am giving it a try anyway.

I have to tell the truth.

I mean I HAVE to tell the truth.

It's a horrible thing about me.

When I was a kid I would hear a lie cross my lips with no pre meditation.

I fought long and hard to rid myself of that habit.

Not that it wasn't frigging entertaining and funny as hell.

I mean an elephant stepped on my foot right! I got several gullable people to believe me......even with a known rep for storying telling. I was good.

Still, I wanted that stuff for the page and not wasted on some group of lunatics.

I trained myself to tell the truth. I just tell the truth. It is automatic, even to cops and now doctors.

Lets say, I might be able to go stealth in a game of poker but a full on sneaky lie to save my .......wait I can lie.

I just decide I better let these docs talk to each other for the best interest of zach's care.

Did you belive that bullshit about me not being able to lie?

I still got it!

DR. NICE NEEDS TRAINING


We talked we laughed he left the room.

I look at "the Nanny" and predict the futre.

The nice ones are scary. They leave the room all smiles and friendly and they come back and show you their power by ruining your world.

THEY SAY I AM DOCTOR AND HEAR ME ROAR

He comes in and tells me he is taking Zach off of this and this and putting him on low doses of we tried that and we tried that twice already.

JIppy falls into a slump and fights off nausea. Jippy falls apart, starts sweating and can't breathe. Finally,

Are you going to admit him for that?

Doctor nice flinches,

why? DO you think he'll need that?

Yes,of course. He fractured my arm and broke my windshield twice when he was 80 pounds. He's 130 now.
We can't do it. YOU ARE SCARING ME DR. NICE.

Well, for autism this is whats best....

AUTISM! I don't care about autism. On a day without pain and he's just a boy with autism, we are happy, those are the good days. I am not here because of autism.

What I care about is keeping Zachary living at home with me.

We want him on the anit inflamatory diet. Fruits, Vegies and seafood.

He has cylic vomiting syndrome, he'll throw up if I try to feed him that.

Try putting a small slice of paypaya on top of his apple slices.

Oh that sounds like that will work, I'll try it. ( this dude has no kids)

No white flour and no white sugar. ( wait! mitchocondrial myopothy without sugar??? )

Why don't we just slit my wrists, I am gonna die.

We will go slow, I am more flexible than you think.

Email, the researcher in a week, for your next appointment in four weeks.

No perscriptions written and a goodbye I don't remember.

I call old doc, still in town and leave message I need perscriptions.

He doesn't know I saw doctor nice.

Should I have him call doctor nice or should I jus tmake sure I get the meds?

Am I am breaking in a new doctor or am I am the end of the line?

I AM BRUTALLY AWESOME!

Zach has an appointment on Mon. with the NEW DOCTOR at UCLA.

The one I wasn't even offically on the waiting list for...

THe waitnig list that was six to nine months long with two hundred more patients being added. YEAH!

SEVENTEEN PHONE CALLS, THREE IN PERSON VISITS AND ONE MAD DASH ACROSS LA WITH MEDICAL RECORDS

I had three, yes, three minutes to spare! I was there with the medical records at 4:27 on a Friday, called from the parking lot to regisiter the appointent for Mon.....This Mon!!!!

I got him in!

So here is a recap of how it all went down.....

I figured someone had plans this summer and would cancel an appointment. So I routinely called to check on the status of the list.

Zach has a file and a hospital number ( from an emergency room visit.) Some faxes ( the ones I sent) have come in but not his complete medical records.

You can't get an appointment with out a complete medical history.

I told them about Zach's situation.

There may be a chance kind of soon. ( When someone says this .....it's inside info and they are reaching out to you....)

I will get the records to you. When is the opening.

There is one on the 23rd but............ There is one on Mon. at one.

This Mon?

Yes.

Can you schedule the 23rd for me?

Not without the records. (she hesitates)

I am picking up on something........so, should shoot for Mon?

I'd hate for you to have to go to all the trouble, but if you can get the records here it's best.

I will be there today with the records.

Good luck she says.

So, I called medical records dept. At Children's. They were just sent out on Mon. If they don't have them I'll make a copy and you can take it over.

Please call me when you are finished with the copy I will come and get it.

You never called me.

I found out I can't make you a copy.

I need them today there is an opening.

You'll have to pay.

How much and how long will it take.

Depends on how many pages one hundred fifty to two hundred dollars. but I have to wait longer to see if they recieve the copies we sent. Then I can put in a request to get a copy for you.

This is not what you told me before can I talk with your boss please?

She isn't here, I'll give her a message.

I call the boss, leave message.

I call the boss. Explain the situation and she tells me the crap the other lady told me ( obviously on her instruction)

I explain with some intesity that Zach needs to see this doc and if we don't get in on this appointment Mon. I'll be on a wait list for the next 6 to 9 months. She reply to me is ............. ARE YOU DONE?

I wasn't even yelling or being rude.

I'll call the hopital for you, it's on your request form and she hangs up on me.

I am told by Hanna, at UCLA that Children's want to give the mail three more business days....into the following week, to see if the records arrive.

I am stewing..........

I requested for the records to be sent on over May 8th. I have a copy of the request. That was plenty of time to have it done. I was told it was 10 to 15 days from that day. They sent them last week, it's been plenty of time and they are not there.

Besides, this is not about medial records. This is about my son who needs to be under a doctors care. This is not about paper. This is a boy you can not be with out medical care. He changes daily.

I contact the mail stops at two buildings at UCLA . They did not receive the records. I inform supervisor at records department. She tells me how it's over and they are waiting until next week.

I page her boss. Twice with messages and urgency. I am on my way there.

I am talking to hopital administrator ahe puts me on hold and then conferencce calls me with the supervisor to explain to me what my message sounds like on my cell phone to prove to me that she did return my call.

AT THIS POINT I AM DOWN THE HALL FROM THEM and believe it or not I am LAUGHING.

Thank you for returning my call. Please help me make this happen. If my son doesn't see that doctor on mon you will be seeing an attorney.

We are making the copies for you now.

I am here, I will take them to the other hospital immediately.

We told them we wanted to wait.

I know you did. They called and told me.

They know I am here and going to try to make it to them by 4:30

You'll never make it on time on a Friday with at this time of day.

It's 2:55 ( they are probably right)

How long will it take them to copy the records?

half an hour

Ok, please do it now

We have decided to charge this off to the hospital and you won't have to pay.

Thank you. I am here. Goodbye.

En route to UCLA

I call Hanna, I have the records I am on my way, can I leave them somewhere if you are already gone?

You have to fill out a new pt package before your appointment

I've made one up for you and your son

I am on Wilshire

You are gonna make it

not if I have to park

I'll meet you outside the building take the turn around.

Thank you, I'll call you from Tiverton St.

Loving her right now!

I go the building where the clinic is and not their offices ( damn internet!)

I figure it out fast and it's only around the corner.

I call her, she meets me outside.

We hand off the packages mine is three hundred pieces of paper.

Hers is about 50!

She points out I need to call to register the appointment by five today.

I call there is no record of the appointment yet.

I explain to them that I am outside with someone from the department right now.

I'll call the office.

Shiela, will know I tell her.

Yes, that's right Shiela.

I go through the hospiatl number issue and insuracne questions.......

I am registered. I hang up

I look at Hanna and smile. I'll see you Mon.

Do you know how lucky you are? She's smilling at me.

I laughed and said, Yessss, I do.

Seriously, this never happens. It's really hard to get in here. You've got a great doctor ( the inside scoop revealed) You are really really lucky!

That's why I am here. That's why I was willing to try.

We were speechless and bonded in the fact that only our personal vantage poitns in life would allow us to see with perfect clarity that we were in the midst of a miracle.

I am in and I've already made a friend.

Zach will see the new doc while it is still possible to pick up the phone and call the old one.....

I am feeling pretty good right now.

NO SLEEP, NO LOVE, NO BREAD


So I thought he was just buggin about the diet and NOPE.

He's got a problem, we have to go back to the hospital.

I am a crap mother .....

The space where the incisor tooth was pulled is gone his teeth are shifting soo fast that the gums are pinching. WHAT the hell?
I have never heard of this and I kept brushing his teeth thinking he had food sticking to that tooth. I didn't know this could happen.

His smile looks great. He's thinking I am into torture and doesn't want to smile at me.

I am not sure if I can wait until our follow up appointment Tues. AM.

Time will tell.....or we'll be at the ER. He needed pre-surgery doses and he did hurt his face a little. I didn't know he was in that much pain.

Sorry to Zach.

WE NEED MONEY FOR CHEESE ITS!

No, we don't but Zach thinks, the reason his favorite snacks are missing is because we don't have money.
Ok, try to teach an autistic child that you need to go to the money store AKA bank before you do anything else or your little world will come tubbling down.

With online banking and bill pay things are easier but when he was younger all those conviences were just getting started. ( damn that makes me sound ancient!)

It was hard to have to physically go everywhere but it forced me as a single mother to take him out into the world. I know a girl who was twelve before she was ever in a grocery store. This stuff happens.

Zach is figuring out.......mommy has put him back on "the diet" The wheat free gluten free no casin, no dairy AKA "the autism diet"
He had to change what he was eating because of his mouth so I thought, lets really change and give biemedical intervention another try.

I have done the diet before before it's hard. It sucks, it wasn't a cure for us. It made some things worse. It has hard won benefits. Those benefits sometimes are worth it all. I have always kept him on the diet at least 80%. Until recently, we fell from that. I blame the nanny! What it's always my fault so why not lay it on her! She does like the grilled cheese and the pizza. LOL

My main reason is to keep the good things he has been willing to eat in his diet. He is really hooked on the grilled cheese, chips and cheese its....... All while on a medication that makes you pack on the pounds, while in a wheel chair......... It's up to me to make sure he isn't carrying twenty five extra pounds while in therapy for foot drop!

He is going to hate me! He's mad and scared and he is already having trouble sleeping. I need him to leave with me before his follow up appointments and I have to drag him back to the hospital.

So here we go......

Do the diet and supplements........ Keep the good food. If he trys to kill us to have the bad food. or it's a birthday party HE IS GETTING THE PIECE OF PIZZA....... I don't care if some people think I am poisoning him and drugging him..... I will do what ever it takes to keep him living with me and that includes a chemical straight jacket......however, IT'S NOT AT ALL LIKE THAT !

SORRY for yelling but when the kid is on the diet mommy is too...... I am grouchy! It must be withdrawls...... Also it's three times more expensive than letting him have the cheese its..... ironically, the the bad food is cheap. IF he only knew. We need money for banannas!

Rocking Girl Blogger

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Originally uploaded by jippyjabber.

I Rock!

At least Amy @ A Family Story thinks so!

Thanks A Family StoryAmy! It's the best feeling to know that people are thinking about you and that they care. You've been so kind to me. I think you ROCK TOO! She really is a Rockin Girl Blogger. Her blog is just awesome! My fav is picture day!

A STORY FOR ZACHARY.....


Zachary is really having fun being " talked to " "told stories" via a blog post at The Show Must Go On, Kitty, AKA, cinemagypsy posted a picture of a castle. A special request for Zach. For Prince Zach Then the stories began. You should go add to it. OR pass on any myths or castle culture that you may know. Zach is home and healing well physically.......For some reason, he's been so bored and unwilling to leave his room. You won't know how cool it was to see him get so cheered up for Kitty's blog.
Zachary really is into his job as Prince Zach. Trust me, he's even called me Queen of the Night when he's super irritated with me..... ( of course it makes me laugh! ) Thank you so much Kitty and all your friends who contributed! Esp. Spanky's photo.
!

WOg Girl Meets WOrld

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Originally uploaded by jippyjabber.

I could live here! But, I would not be happy because I am wating on some people to get their books published.

Hey, Amira has a story online that we can read while we wait for her Wog Manual to hit the bookstores.

Wog Girl Meets World

Amira's story at Spinetinglemag

OH and if that wasn't good enough....I just read the titile of her latest post! Congratulations Amira!

Mom can I borrow your shades?

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Originally uploaded by jippyjabber.

He rocked out to the concert. His favorite part is when the helicopter took off from the roof of the hospital. I know they have gone as far as Hawaii to fetch a patient.

We have to have some good memories there or he'd never go back.
Right now he's afraid to leave the house in case we are heading that way. He also won't let momma out of his sight. ( oh well, one day I'll be begging him to come and sit by me)

free concert at Children's

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Originally uploaded by jippyjabber.

I don't know these two guys were but they do get some big names at Chilidren's Hospital! It was hot and they sweated it out for the children.

KithenAde Cook for the Cure

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Originally uploaded by jippyjabber.

Two of my favorite things. It's makes the slice and serve very easy.

Zachary has to buy eight apples. Five red and three green. He can change the numbers but he must have red and green.

This comes from watching Blues Clues and a story about taking eight apples to a picnic and it wasn't fair that ...............now both of them have four apples each to take to the picnic.

I am just glad he still eats apples. Of course he's very picky about the way I cut the apple. That's why these are two of my favorite things!

Remember this? He's crying for his chips!

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Originally uploaded by jippyjabber.

He really wants to eat chips. He's sick. I didn't let him know it was the 4th of July. I don't want him to know how much he is missing. He can't handle going out at all. He wants to eat food that will hurt.
ALso, he got to eat things that he should not because he was on so many pain meds. He's going back on the diet and some of those chips he won't get back at all. i've done the diet before. It's not a cure for Zach but it's worth another try to see if it can help him out now. He takes suplements from his genetics clinic. It's ironically the same that the autism diet recommends. So the swelling is going down but he's yellow from his cheeks down to his neck.
I think they did an excellent job. I am lucky I had the plastic surgeons.

Oh I am getting motivated like I always do.
I fully believe things are better and will be for a while.
It's just insane.
I can't stop myself.

I get a little break and I run for the finish line. Except the finish line has become the start line.

I want to start. I always do this. It makes the fall so much harder but I still do it.

Isn't his the very definetion of insanity? I think I do this by mere insanity. Now you know my secret.

I dream of a wonderful future. I make plans. I do things to make the plans seem very real.

I see Zach as fully up capable of being well and enjoying is part in my plans.

I swear that before my illusion is brought down again. I will at least visit the beach, watch a sun set, get some good wine to have on hand. I like a cold beer in the summer too.

I am an almond.

You have to hold out for Crazy .....it's awesome.

LISTEN TO THIS.......


You don't want to know what Brett Battles is thinking about you! Unless you think of some alternative you, out there living the life of an international spy or on the brink of a life changing challenge and you like the idea that the person in line next to you waiting for a latte just might be more than the average joe.

"alternate stories" a podcast by Brett Battles on Bantam Dell

If you want to know about the process of inspiration and making a muse out of the everday experience, listen to Brett's podcast on the Bantam Dell website.

Zachary's neighbor in the hospital

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Originally uploaded by jippyjabber.

I had to take this photo. Baby is coming back from a MRI. The parents are still in the waiting room outside the MRI. I thought this would cheer them up if I got a picture of how cute he is in his transport. Baby's parents kept me up all night praying for him. I didn't mind. The young new parents finally got some rest when baby got some medicine. It felt like a miracle to all of us!

Movies and Morphine

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Originally uploaded by jippyjabber.

Distraction is the second best way to deal with pain. He got to download the imperors new groove from Itunes before we went to the hospital. He patterns on tech stuff. He has to watch Ic e Age on his Ipod and then maybe he can watch something else. Ice Age was the first movie he watched on the Ipod. Was I smart enough to be careful what movie he watched on the computer first? Depends on if you think Aristocats is a good one or not? Only kidding I picked long ones with music to help him sleep. Sometimes it works. Could it be the morphine? why chance it, pull out all the stops.

Drink so they can take out the IV !

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Originally uploaded by jippyjabber.

Was mommy a little pushy? Drink so they can take out your IV. I did think of it in advance and came prepared with his own personal Turtle Cup. I got the little turtle sippie cup at Starbucks. It is the best seal I've ever had on a sippy cup. It' s my favorite cup I've ever gotten for him. He isn't into styrofoam ( who is?) and it's hard to find a nurse every time you need to get a new cup. It's a cute turtle and boy stuff is harder to find than cute princess paraphernalia. I think he did drink a little more and sooner with a nice cup. I get some green points for the environment too. Also check out the piano body pillow in the back ground. My sister told me she got lots of looks as she walked to our room. You know a pro family when they don't have balloons or flowers but they have comfy pillows and fun sippy cups! Alright so there is some pink on the pillow, Zach said it's still cool and so it is......

Ouch

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Originally uploaded by jippyjabber.

SWOLLEN

It's Friday and we made it home! OH his cheeks are are huge.... I'll post pics ASAP. He was pumped with sugar for three days and his kidney and liver were fine and he is still walking!

Just wanted to post that we made it home in three days!

when he sleeps
I look through his face
my mind can not believe
a presence
it chokes my soul
I can't breathe or open my eyes
a beautiful truth comes
twined together
I defend his life
his suffering is ancient
and so is my love

Thanks so much for your concern. We go in 5:30 am and get upstairs right away for an IV and then in surgery by 7am. This lessons the chance of getting bumped by an emergency. Also it makes it easier on his body. He will have D10 ( sugar) and morphine). I am kind of jealous.....just kidding. He has a great team of doctors and I feel ready for this.

My sister Kathryn has been so helpful. She is such a comfort to Zach during these times. She has a gift and knows how to come in and make him feel cozy. My BFF LoLo will stop by I am sure. And then of course he beloved MS. Thea will be checking on the cat Mon Cheri. As well as us. It would be great to be home by Friday.

CONGRATULATIONS BRETT BATTLES! THE CLEANER HITS BOOKSTORES TODAY!

THE CLEANER HITS THE BOOKSTORES TODAY!

I can't imagine what it's like to wake up and have it be the day your book hits the bookstores.....



Do you know who this is? CLICK HERE

My butterfly

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Originally uploaded by jippyjabber.

He choose a book, Butterfly and Moth.
So we are chilling, waiting for his surgery.
the pain is intense. He had his pre-op appointment.
He got really nerveous and passed out.
So I am on operation relax the boy.
I am feeling ok and slightly positive about it.
They call tomorrow and tell us when the surgery is.
We still have to go in first thing in the morning to get on an IV
that will be good because his pain will be undercontrol
Sounds like a lot of waiting for mom.
I want to come home by Friday and I want him to walk as well as he can now.

cousin came to visit

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Originally uploaded by jippyjabber.

Sister dropped off my nephew in the night..... he is supposed to stay a few days. I wanted to give him a pizza movie night for his birthday.
He's says he has a sore throat.... I called my sister.
she says oh he was sleeping with his mouth open it's just a dry throat.
hmmmmmm
he wakes up caughing and sneezing
I call my sister
someone will pick him up at 7pm..... tell him to stay outside.( what the hell?)
Zach can't have his surgery if he's sick. Zach can wind up in the hospital on IV's if he gets sick.
Zach doens't have an immune system that will fight this off.
My throat hurts.
My sister is going to die.

ZACH LOVED EVAN ALMIGHT!


I liked it.
I wasn't angry over slipping in a "shut up mom " or a grown up joke.
I wasn't put off by the moral message.
Morgan Freeman wasn't in the film enough..... : ) A little more god please.
I wasn't put off by the political message
It was tame compated to what we already get.
There was a little nail biting for Zach but he wasn't too scared or anxious.
His first action flick....well the ending was moving!
The funny was funny but really funny to a little boy....... I had to love it..... Zach laughing!

We will have to go again.....

OK I don't know if I liked it that much but I was thrilled watching my kid watching a movie!

A LETTER TO THE SURGEON FROM THE GENETICS CLINIC....

Zachary is followed by myself in CHLA Medical Genetics for an inborn error of mitochondrial energy metabolism. Clinical manifestations in Zachary include autism, cyclic vomiting, complex regional pain syndrome and rhabdomyolysis. Mitochondrial disorders decrease the ability to produce energy in adequate amounts, and typically involve those tissues with the highest energy demands. This letter discusses some precautions that are prudent to take when patients within this group of disorders undergo surgical procedures.

Patients with mitochondrial disease often are sensitive to fasting. Fortunately, the administration of IV D10 (with appropriate electrolytes) at least at a rate of maintenance has been associated with an absence of any fasting complications in patients with mitochondrial disease in my experience. The patient can be fasted overnight, with an IV placed and D10 administered starting in the early morning. The D10 containing IV fluid should be run throughout the pre-operative, operative, and post-operative phase until the child is able to adequately take enteral feedings. In the vast majority of cases, hospitalization for the night prior to or after surgery is not necessary.

The surgeon should be aware that cardiac, hepatic, endocrine, and autonomic nervous system dysfunction occasionally occurs in patients with mitochondrial disease. However, in my experience surgical procedures in patients with mitochondrial disease are safe if appropriate fasting precautions are taken. Because of the aforementioned hypothetical complications, it is prudent that surgical procedures be performed in a major medical center.

Based upon antedotal reports, there may be an increased probability of malignant hyperthermia when patients with mitochondrial disease undergo surgical procedures. However, this has not been my experience in a large number of patients with mitochondrial diseases that have undergone biopsy, as well as more intensive surgical procedures, including cardiac transplant, abdominal surgery, etc. Because of this hypothetical risk, appropriate precautions (Dantrolene) should be readily available.

First surgery he went into rabdo
second surgery he lost the use of his leg and foot
So here we go again..... the date is on June 27th
I am powerless ....... OK so come what may we'll deal with it.

Hospital Day

DSC04309
Originally uploaded by jippyjabber.

Things have changed... we have so many appointments....
We got the call the surgery is next week.
I 've got several appointments prior to that
lots of things to do .......

here we go!

three minutes people!

DSC04321
Originally uploaded by jippyjabber.

I have no idea where he see this or why three minutes?? It must be all the" making of" on the tale end of the DVD's He has always loved the marker board. I don't know why. At least he is having fun and he's playing! I guess I better get him a camera!

Take three

DSC04315
Originally uploaded by jippyjabber.

He's a little movie maker

Marker!

DSC04316
Originally uploaded by jippyjabber.

And the best director is Zachary

DSC04340
Originally uploaded by jippyjabber.

Zach is a winner!

Getto train

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Originally uploaded by jippyjabber.

You were wondering how I do it?
I pull from the front!
Mostly, I avoid this and plan accordingly but we ran out of his fav chips and I paid the price for it!

Zach is an excellent shopper!
6 bags or French onion Sun CHips
6 bags of Funions
8 bags of gummie Lifesavers
4 boxes of red vines
1 case of sprite
1 case of diet coke plus for mommy ( thanks Zach)
1 bag of cheetos for the nanny or any cousin stopping by.

DSC04290
Originally uploaded by jippyjabber.

Saved by the book! This is the first photo in a series, three waiting rooms and one very very very good book. This doc was over an hour late. He's lucky I had a good book ( a very very very good book) to read or I would have been fuming mad..... He has done this before... I set my next appointment for a little later in the moring, so next time he'll be able to wake up! Ok check out the book.....a link to a little moie trailer is below the next picture , it's in red.... Ok here is my three waiting rooms and one good book post.

DSC04272
Originally uploaded by jippyjabber.

TONI McGEE CAUSEY
watch a trailer at Bobbie Faye

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Originally uploaded by jippyjabber.

OK blogging is strange..... at least five bloggers I know, know the author of this book. Talk about a friend of friends... Lets see, Max, Pooks, Kitty, Brett, Rob..... Those are some quality votes for a book... so of course I put it on my list at Amazon......even though I am limiting my Amazon activity this one I am reading for pleasure. And It's like my addiction for Poker After Dark...(.I can't play the game but) the characters are awesome!

I am using Ms. Thea as model in this series I call three waiting rooms and one very very very good book.

DSC04273
Originally uploaded by jippyjabber

He can walk so much better and for longer periods at a time with a brace on his foot.
I found out I can have some extensions made on the straps of his shoes.
Just a visit to a quality shoe repair will save me the cost of buying two different sizes of shoes. This gets hot in the summer so finding high quality sandals was a priority.
I got some Hush puppies sandals in a wide shoe store. On sale for about $80.00. How much have I spent /wasted on trial and error, looking for something that will work out that he is willing to wear?
Lets say I could probably pay rent with the last years shoe budget.
Ps that's the beautiful and helpful nanny in the back .... she just wrote a paper on Zach.... I hope she lets me post it. : )

DSC04274
Originally uploaded by jippyjabber

He's grown so much this is our second brace.
I didn't know Complex Regional Pain Syndrome could last this long.
It's been a year and a half.

Now Showing

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Originally uploaded by jippyjabber.

I am haven't seen...... Is it good?

George Clooney

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Originally uploaded by jippyjabber.

Hollywood Royalty

BP Brad Pitt

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Originally uploaded by jippyjabber.

I kept saying I saw Jesus in this picture but honestly it looks like someone else ...... the left foot is the face....... Do you see it?

Jerry Weintraub

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Originally uploaded by jippyjabber.

Ultimate power

Matt Damon

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Originally uploaded by jippyjabber.

June 5th 2007 it's still looks wet

HAPPY FATHERS DAY

FOR ZACHARY I WOULD...........Zachary, I will be everything I can be for you baby

I would become a man
to father you
more than any mother ever has
I will father you
in the park
I will father you
at the zoo
I will father you
in the shadows
ward off nightmares
kill bugs
teach you to shave
I will father you
as deeply into your wounds as I can
to slay dragons there
my arms are stronger than a sailors
when they are around you
I father you
I love you

Go ask Alice

Go ask Alice
Originally uploaded by jippyjabber.

I have been freaking out but yeah..... I still get proactive and low and behold..... GOOD NEWS!

I got a surgery date of July 5th! With a plastic surgeon to work on Zach's mouth....removing wisdom teeth and hopefully placing an incisor into the right spot or pulling it..... this is the man who can save his tooth!

I went to the hosp. Got a new brace for his leg.....got a new perscription to increase his pain meds....stopped in to make them face me...... I looked the surgery scheduler right in the eye and said I had to come to increase his pain meds. Ok so there are seven pts. waiting for an opening. An opening came up today..... was she going to call me? NO! But face to face what can she do???
Listen, if someone said, this kid is more medically urgent than your kid...... I would wait.....It's just that competitive in to get good healthcare. I fought for it and I won. July 5th is in three weeks. I am ready and then we will recover and damn it .......this should be the last of teething issues!! ( I've said that for about four years now) This time I really mean it. Sometimes I wonder how the hell I can be such a mess and yet still do the right thing for Zach.... I just get so intense sometimes.... For lack of a better word..... I feel like saying a prayer....sending some love....to those seven other suffering kids waiting for their surgery..... Some mom's just can't call everyday and then show up when they feel tugged in that direction. But damn I am in tune! Rockstar mom! I took zach and the nanny and myself out for frozen yogurt on the way home! I did it...

Blessed+Art+Thou+lo

Blessed+Art+Thou+lo
Originally uploaded by jippyjabber.

This cracks me up but it also explains my day.....First I play saint and go to the hospital. We pick up a new brace for his leg. We pick up a new perscription because we are uping his dose. Then I have to take care of business. Zachary's TV broke and do did the lamp in his room.
My goodness defective or what? Over use still a lamp and a tv from the movie CARs should still be working. You know he uses movies to help him deal with pain. He watches animal planet waiting for the meds to kick in.
I wish I had the name of the arrtist that painted this photo ....I am going to come back and post the name.

I know what I have to do

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Originally uploaded by jippyjabber.

zachary is living dose to dose. Our main doctor is leaving.
I am forsee checking into the ER until they admit him and make the surgery happen.

He's bigger, he's suffering, I am scared for both of us.

I have one other choice try to get a waiting list at another hosp.
I am afraid the INS issue might get out of my control and get the authorizations canceled....it happens.

I have a new medication to start. I hate this process.
I think it's bad timing to do this. He's suffering and I won't be able to get a good read of this ....... It should work and it's very very expensive.! $4oo.oo...... it isn't covered automatically, I had to fight for it. I have to be careful because six perscriptions are covered and the rest I pay for...... I have to fill the expensive ones and pay for the cheaper ones myself.

Hug a whale

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Originally uploaded by jippyjabber.

He is getting so big!
Zach was going over his car colection from the movies cars.
I guess he leaned over to hug his whale and fell asleep.
Every now and then a sleeping child does wonders for your soul.
Hey, doesn't a nap sound soo good?

So mom gets a chance to read The Cleaner by Brett Battles

So mom gets a chance to read The Cleaner by Brett Battles
Originally uploaded by jippyjabber.

To help put me out of my misery, Brett decided to send me an ARC (advance reading copy) of his book The Cleaner! Aw how sweet!

If you go to his website by 6pm tonight Mon. ( whatever day it is today....OMG) Leave the name of your all time favorite book and you are entered into the contest to win an ARC of The Cleaner!

Today's Contest! 4 ARC of The Cleaner

In order to get a chance to read a good bit of it ( which you'll be burning to do) I took Zach to the South Pasadena Library. We have never been in that library. It's a tree that has playdates with all the local toddlers, teens sit to text, artist come to sketch and moms come to breathe and read.

Thank you Brett! Jonathan Quinn is one very intriguing man ( and ladies trust me you'll like him!) You want to rip through the book but then again.....no, you want him to be your friend just a little while longer.

If you think in pictures and like a book that will let your mind roll film in your inner theatre, You'll love the way Brett writes!!! I love it!

Westside of the Library

Westside of the Library
Originally uploaded by jippyjabber.

I have never been inside the South Pasadena Library.
They have a coffee shop across the street though and that makes it a good day for both of us.

favorite pastime

favorite pastime
Originally uploaded by jippyjabber.

picking up sticks

picking up sticks
Originally uploaded by jippyjabber.

He was three when he first played on these roots

He was three when he first played on these roots
Originally uploaded by jippyjabber.

Oh the Disney studio Fountain is heaven

Oh the Disney studio Fountain is heaven
Originally uploaded by jippyjabber.

What is better than the Disney Store? A Disney Store with Cherries!
I am so glad we are having some fun again! It's living dose to dose until the surgery but this is just minutes from the hospital. I can plan it out and make it work.....usually.....: )

Life is a bowl of cherries

Life is a bowl of cherries
Originally uploaded by jippyjabber.

Zachary gets VIP treatment, a bowl full of cherries. Then we finally found Sarge the car from the movie Cars! YAY!

OK, mom can we go upstairs now?

OK, mom can we go upstairs now?
Originally uploaded by jippyjabber.

Sometime in May ( after I got overwhelmed but before I started drinking) Rob had a contest..... Take a pitcure of yourself with his book. This is my attempt to pick up where I left off. Doesn't Zach looked thrilled?

He wrote the book

Rob and his buddy Brett made a Pod cast about their shared love, no, not about me, about writing, reading, story telling, well, it's about Character.

Episode 1 - CHARACTER IS KING
I begged for more

Vroman's bookstore completely rocks!

Vroman's bookstore completely rocks!
Originally uploaded by jippyjabber.

I had wanted to buy Rob's book at a Mystery Book Shop. I had never been in that shop and it was a good reason to go. I finally made it to the Mystery Book Shop. A man vaguely reminded me of the Captian from Giigan's Island was helping ....I have to say it....The little old Lady from Pasadena.... I wanted to hug him watching how sweet he was to her.....then I wanted to kill him because they only carry out of print Mystery Books...... Holy Crap I better get to Vroman's! I got the last copy on the shelve but bonus it was a signed by the author!
PS Rob was a doctor in a past life... No actually, it looks a bit like Brad Pitt's cement autograph..... A combo of those two...

Last one on the shelf.....

Last one on the shelf.....
Originally uploaded by jippyjabber.

You might know Robert Gregory Browne as my "blog crush" ( imagine link to blog crush post) Of course I ordered his book from Amazon the first week it was released.......after some drama at my local Borders.
Why didn't I read Rob's book? This is getto Jippy stuff here....I used his book as payment for my nephews friend who came to my place and did some work on some bookshelves that are taken over by zach's toys.
I had a bag of books for his mom and sister and he kept eyeing Rob's book and making comments like, " I like to read too" So let him have it, I could not hold back after he played cars with Zach and told Zach, hey! you have to put the car 'Ramone 'in front because that's my name too.

Jacaranda Trees

Jacaranda Trees
Originally uploaded by jippyjabber.

Spider City

Spider City
Originally uploaded by jippyjabber.

Zach and Thea caught in the web

HOLLYWEB

HOLLYWEB
Originally uploaded by jippyjabber.

HOLLYWEB only at the LA Zoo!

We made it!

A miracle just in time


I am starting to get into the idea of change.
The panic and fear all went away with the hangover.
I am really proud of myself for being honest about my feelings.
Before I just died inside
Just prayed to a god I was furious at and laughed like a crazy person at the irony

I have a strange and powerful optimism
it just shows up and I think bright good thoughts and forget the bad quickly
with no proof I believe things will shake up and land in a better place.......hmmmmm


Zachary is really gettting very verbal lately
he's quoting commercials and he is taking those words into the world and other conversations
I am floored by this.........
I always wanted to talk with Zachary........
He has been helping me pick out shirts for him.
Now I can ask him do you want to wear the shirt with the tree on it or the sword shirt.
What timing for a miracle

I am ok
we will be fine
I am going to post pictures soon
Don't worry
my strength will return
i'll do one thing at a time until then.

I never wanted you to know I could be this weak.

I just am nothing

I wait for some strength to show up

from I don't know where.

I am so powerless

I suppose that's obvious

I am terrified of his pain sometimes

I make desicions based in fear

I cried so much

I never wanted you to know I cried

I wait, I am always waiting

this day is my life

I try to convince myself

so I use love it covers the waiting

but never his pain

I have heard that the deifinition of insanity is trying to do the same thing the same way over and over again........ Well, I am insane......... I am actually going to attempt the zoo again this morning....

We will have our day at the Zoo!

I am still reeling but maybe the zoo will snap me out of it.

although, I am destroyed over it .....I have made several phone calls and emails.

I mean if a bunch of pts are getting cut off they are will be trying to get on the same wating lists as Zach and well it's sad to be competitive here but I want on that list ASAP and on top. I just need help. You know it's because Zach changes from day to day and sometimes hour to hour. I have to be proactive.