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!