Wong-tinez: A Cultural Phenomenon FINAL UPDATE Pg79 #1176 & 1177 NEW PICS

[Trentmom]

So, why Disney World? And why this summer?

I guess it all started with a girl. A miracle of sorts.

At the ripe old age of twenty-one, I discovered that fertility would be my mystery. I had just gotten married, hadn’t planned on starting a family and then due to some very horrid female problems I went to a specialist, who said it was now or never for my uterus!!! So, after six months of marriage we took the leap and started with drugs and bi-weekly visits to the gyno. Nuttin’….for months and months. So, we stopped trying after nearly two years without even an egg!!!

What is it all those people tell couples who are trying? Stop and it will just happen…well, it did!! A few months after ceasing all medications I discovered I was pregnant!!!

My miracle had finally happened!!! And she was not about waiting to get into this world. Her spirit was much too big for my womb!!! So, after three trips to the hospital for pre-term labor I was put on some meds to keep this little booger in!!

Then, I gave birth to an amazing baby girl. She was 5 lbs and 13 oz of pure joy!! She had a spirit that truly drew people to her!! She was bright and happy, beautiful and kind, and boy was this one smart!!(Of course I am biased, but all these things are true.)

As she has grown I have enjoyed the tremendous character she has become and the tremendous character she demonstrates. She was an uncomplicated baby, very easy going, and last but not least abnormally healthy. She never had the coughs and colds that I saw other children battling. She rarely ran fevers and when she did we dubbed them mystery fevers, because no one could find a source. Viral the doctors said time and time again. Nothing unusual, right??

Well, last summer Genius Girl’s fevers became something all together alarming! Spiking up to 106 and lasting for days at a time, her fevers started to show a pattern. They cropped up every 28-30 days and would stay above 103, even with rotating Tylenol and Motrin, twenty-four hours a day. Finally we got a doctor who was ready to look at it as something more than being just viral. This pattern got them thinking about other things….much more serious things that I was not ready to hear. They contacted an Infectious Disease specialist. I was so frightened. She was my heart and my soul all wrapped up into a neat little package, how could she be sick??

No one had a clue what could be wrong with my girl. Our appointment to see the ID was a few weeks away, so I did what I do best…I tried to solve this problem. I began researching and I searched and searched. Punching in her symptoms and reading medical jargon. I came across a condition that fit her symptoms to a tee! Periodic Fever Syndrome (PFS)!! There were five different types and she fit three of them. I knew in my heart this is what she was suffering from…but I am not a doctor, so I continued to fret.

Our appointment came and he confirmed my fears. He believed that Genius Girl was suffering from one of the fever syndromes. After months of charting fever and trying different steroids to combat the fevers we received an official diagnosis…TRAPS (TNF-Receptor Associated Periodic Syndrome). Yes, a mouth full…but I finally had something to fight. Something to call it and now we could find a way to treat it!!!

This is a condition that she will battle the rest of her life and it has many complications and a variety of symptoms that can crop up at any time. We are still learning about it, as is the medical community, as this particular genetic mutation was only discovered in the 90s. She will miss out on the ordinary things of life due to fevers and pain.

So, I made a choice that we would celebrate life whenever possible. We would do things that gave her a sense of normalcy; extraordinary things that would create enough amazing memories to block out all the needles and medications. So, I decide to crash a vacation…with the one person who had helped me see through the madness of this time and focus on the girl not the disease. My best friend….Goofyluver!!!

So, Genius Girl is the reason for our trip. Really she is the reason for everything!

She is beautiful!!!

I love the way her shirt matches the flowers in the background!!

If you don't mind me asking, what kinds of things will she have to miss out on in life?

I never heard of the fever syndrome......That must be scary........

 

[WDWHeather]

I'm glad those pictures popped up again because I don't think I ever said that your kids are absolutely precious! Just want to give them a big hug!

 

[Trentmom]

Hey Red and Dippy!!!

Luvin the trip report!!!

You two are cracking me up!!!

I have read the first 20 pages.....doing good!!!

Only 11 more go..

I love target, too, as does DH....He actually has a routine when he goes to the store and if I take him the wrong way to look at something, he HAS to go back to where he was and follow the right path around the store....

 

[Goofyluver]

Hey Red and Dippy!!!

Luvin the trip report!!!

You two are cracking me up!!!

I have read the first 20 pages.....doing good!!!

Only 11 more go..

I love target, too, as does DH....He actually has a routine when he goes to the store and if I take him the wrong way to look at something, he HAS to go back to where he was and follow the right path around the store....

Hurry up!!! The next chapter cometh...

 

[meeskamouska]

She is beautiful!!!

I love the way her shirt matches the flowers in the background!!

If you don't mind me asking, what kinds of things will she have to miss out on in life?

I never heard of the fever syndrome......That must be scary........

The most common feature of TRAPS attacks is a fever usually greater than 38o C and lasting more that 3 days. Fever accompanies most attacks in pediatric patients but can be absent from attacks in adults. The other most common symptom of a TRAPS episode is a cramp-like myalgia or muscle pain. This pain can vary in severity from uncomfortable in its mildest, to incapacitating at its worst. The myalgia waxes and wanes throughout the course of an attack, affecting primarily the limbs and torso, but also the face and neck. A rash is commonly associated with inflammatory attacks, often occurring over the site of myalgia, with the affected areas being warm and tender. A unique feature of TRAPS is that the rashes can migrate along a limb along with the myalgia. Joint pain (arthralgia) can also occur during these attacks, most often affecting large joints such as the knees, hips and ankles. Arthralgia can accompany the migration of the myalgia or be completely separate from it. Abdominal pain also commonly accompanies a TRAPS attack and is often associated with nausea, vomiting, diarrhea or constipation. Some attacks are characterized by the occurrence of fevers and abdominal pains with no other symptoms. Patients can also experience eye involvement with conjunctivitis, or swelling or pain in the periorbital space. They also may experience chest, testicular or scrotal pain.

The most serious complication associated with TRAPS is kidney amyloidosis (insoluble proteins deposited in the kidney). Proteinuria is a sign for kidney amyloidosis, so this situation can be detected early on, which is important since many of the patients with kidney amyloidosis experience renal failure, a life-threatening complication.


This was taken from the Wikipedia site. Kaia currently has missed over three weeks of school this year. We are very lucky that it has been due to the fevers and not so much the pain. Kaia's symptoms vary each episode, so we are never sure what to really watch for yet. She has experienced most of the symtoms listed just thankfully not all at once. I have been able to find an amazing online community of parents of children with this condition and many of their children miss out on the everyday things we as parents take for granted.
Please feel free to ask me any questions... I am learning as well.

 

[Trentmom]

The most common feature of TRAPS attacks is a fever usually greater than 38o C and lasting more that 3 days. Fever accompanies most attacks in pediatric patients but can be absent from attacks in adults. The other most common symptom of a TRAPS episode is a cramp-like myalgia or muscle pain. This pain can vary in severity from uncomfortable in its mildest, to incapacitating at its worst. The myalgia waxes and wanes throughout the course of an attack, affecting primarily the limbs and torso, but also the face and neck. A rash is commonly associated with inflammatory attacks, often occurring over the site of myalgia, with the affected areas being warm and tender. A unique feature of TRAPS is that the rashes can migrate along a limb along with the myalgia. Joint pain (arthralgia) can also occur during these attacks, most often affecting large joints such as the knees, hips and ankles. Arthralgia can accompany the migration of the myalgia or be completely separate from it. Abdominal pain also commonly accompanies a TRAPS attack and is often associated with nausea, vomiting, diarrhea or constipation. Some attacks are characterized by the occurrence of fevers and abdominal pains with no other symptoms. Patients can also experience eye involvement with conjunctivitis, or swelling or pain in the periorbital space. They also may experience chest, testicular or scrotal pain.

The most serious complication associated with TRAPS is kidney amyloidosis (insoluble proteins deposited in the kidney). Proteinuria is a sign for kidney amyloidosis, so this situation can be detected early on, which is important since many of the patients with kidney amyloidosis experience renal failure, a life-threatening complication.


This was taken from the Wikipedia site. Kaia currently has missed over three weeks of school this year. We are very lucky that it has been due to the fevers and not so much the pain. Kaia's symptoms vary each episode, so we are never sure what to really watch for yet. She has experienced most of the symtoms listed just thankfully not all at once. I have been able to find an amazing online community of parents of children with this condition and many of their children miss out on the everyday things we as parents take for granted.
Please feel free to ask me any questions... I am learning as well.

wow.....God Bless her!!!

I didn' realize all of the pain associated with the fevers and possible damage to the kidneys, too.

Does she undersand what is going on with her body? Do you try and explain it to her? I can imagine that would be hard with a 4yr old...

Is she in pre-k? Her teacher must adore her, she looks so spunky and loving, just looking at her......

I just want to pinch those cheeks!!!

 

[Trentmom]

Hurry up!!! The next chapter cometh...

I am trying....

Post slow, so I can keep up...

 

[meeskamouska]

wow.....God Bless her!!!

I didn' realize all of the pain associated with the fevers and possible damage to the kidneys, too.

Does she undersand what is going on with her body? Do you try and explain it to her? I can imagine that would be hard with a 4yr old...

Is she in pre-k? Her teacher must adore her, she looks so spunky and loving, just looking at her......

I just want to pinch those cheeks!!!

This has been a part of her life for a while now and she has no idea that she is different from anyone. She is not a complainer so it is often hard to gauge her pain level. We try to keep things as normal and as ordianry as possible. We do everything possible to keep her fevers to a minimum by giving her a steriod as soon as her fever reaches 103.5. But, her fevers climb so high that her body has acclimated and at 103 you would most likely not know she is sick (accept her bad attitude!!) We are currently working with her DR trying to get some new treatment ideas from the National Insitute of Health were they are doing a research study on the fever syndromes. There is so much they are still learning about this condition that we will continue to learn for a while. My only concern is her kidneys and I will do whatever they suggest to give her a long and happy life!!!

 

[WDWHeather]

This has been a part of her life for a while now and she has no idea that she is different from anyone. She is not a complainer so it is often hard to gauge her pain level. We try to keep things as normal and as ordianry as possible. We do everything possible to keep her fevers to a minimum by giving her a steriod as soon as her fever reaches 103.5. But, her fevers climb so high that her body has acclimated and at 103 you would most likely not know she is sick (accept her bad attitude!!) We are currently working with her DR trying to get some new treatment ideas from the National Insitute of Health were they are doing a research study on the fever syndromes. There is so much they are still learning about this condition that we will continue to learn for a while. My only concern is her kidneys and I will do whatever they suggest to give her a long and happy life!!!

Well, I think it sounds like you're a great mommy!

 

[meeskamouska]

When I began exploring the DIS, I came across a thread that made me laugh!! I instantly knew that I could fit in with this crazy crowd and decided I would join the shenanigans and become a Focker Watcher!! I was stoked…how fun would it be to give the sign to random internet peoples in the hopes that they would understand my obsession!! TFW peeps…you had me at hello, you had me at hello…

This was before Jennifer was really deep into her obsession and I had more posts than she did. Way more.

I called her up and this was our conversation: (please be aware that due to our TFW scandal I will refer to the act as platypus)

Me: Hey, I think we should platypus people in the parks!!!!
Jennifer: *cough* *choke* WHAT?
Me: Today on the DIS…(I proceeded to explain how one might platypus).
Jennifer: Are you crazy!!!? I am not going to platypus a complete stranger!! I may be lots of things but I am not going to be one of those internet crazies that platypai strangers!!!
Me: Well, I am one of those crazies apparently and it is my mission to platypus at least one person on this trip. Maybe, several. If you aren’t gonna platypus they will stare at you and you won’t be a cool kid.

You see peer pressure can often get you what you want. So, I told her where to find the thread and to read over it and see what she thought. What do you know….after a few days of reading the thread and getting acquainted with the platypus gesture she was game!!!

Our new favorite color became lime green and I even wrote a theme song for the group…which has been lost in the aforementioned scandal. Here is a taste:

I’m Bringing Platypus-ing Back
I’m bringing platypus-ing back, yeah.
LGMHs are on attack, Yeah
Baggalini strap around my bag, yeah…etc.​

We became increasingly drawn into this cult-like group; learning code words such as FDM, ADR and what and why people got tagged. Like sponges we absorbed all of the knowledge that was being passed around and like a crack addict we wanted more!!!




Okay…so when Tera says I was “game” for this whole platypaiing thingamabob…she is sorta over exaggerating.

Okay…not sorta…she IS over exaggerating.

My biggest fear is that I’m gonna be taken down by security

for making some obscene gesture to a perfect stranger. I’m wearing padding on my backside just in case I’m taken down from behind. Okay…so my backside is naturally padded…I have a J Lo booty…it’s a gift…

What if we go up to some poor unsuspecting person who hasn’t a clue??? What would you do if I platypaied you from afar and you had absolutely no idea what I was doing or who I was???

If it were me…and Tera had never forced me to join the platypus thread…and someone platypaied me…I would grab the enforcer…shield his eyes…and run the other direction as fast as I could.

But…as I began to read more and more…it became soooooo funny. Yes…this adult group of total strangers has come together. We’re mothers, fathers, professionals, family people…and we loooooooove to platypus. In fact…we apparently had way too much fun platypaiing with each other…because the mod Gods came and took our furry platypus away. (Are platypai furry???)

But…like Steven Segall…we came back again and again…even if people didn’t want us to. Did ya’ know there is a platypus shirt? There is…PM us if you want the info.

My dream??? I want to platypus Goofy…and I want him to do me back! (channeling Barbara Streisand) Goofy…can you hear me??? Goofy…can you heeeearrrr me???

Tera and I are proud members of TFW…Disney siiiiide (that’s my gang shout out)…we’re watchin’ you and just for fun…we’ll give you a quickie (platypus that is)!!!

So…there we will be…walking down Main Street decked in lime green from head to toe. We’ve got it all…the lime green baggallini, the LGMHs. I’m totally taking over the laminating machine at work…watch out on Thursday ladies…your bees and flowers won’t be shiny on that day…

I ain’t skeeered…I’ll platypus you fast and I won’t call you the next mornin’ neither…I don’t even want your number…

Okay…I may leave you my card…(oooooops…did I just spill a secret???)

***For a good time…click here…http://www.disboards.com/showthread.php?t=1399648&referrerid=&highlight=Team+Focker+Watch

 

[WDWHeather]

Disney siiiiiiide!

 

[gnbuggy]

1. A mouse trap, placed on top of your alarm clock, will prevent you from
rolling over and going back to sleep after you hit the snooze button.

2. If you have a bad cough, take a large dose of laxatives, then you will be
afraid to cough.

3. Clumsy? Avoid cutting yourself while slicing vegetables by getting someone else to hold them while you chop away.

4. Avoid arguments with the Mrs. about lifting the toilet seat by simply
using the sink.---(okay...you know this one would not fly!!! )

5. For high blood pressure sufferers: simply cut yourself and bleed for a few minutes, thus reducing the pressure in your veins. Remember to use a timer.

6. Have a bad toothache? Smash your thumb with a hammer and you will !
for get about the toothache.

Sometimes, we just need to remember what the rules of life really are:

You only need two tools: WD-40 and Duct Tape. If it doesn't move and should,
Use the WD-40.
If it shouldn' t move And does, use the duct tape.

Remember:
* Everyone seems normal until you get to know them.
* Never pass up an opportunity to go to the bathroom.
* If you woke up breathing, congratulations! You get another chance.

And finally, be really nice to your family and friends; you never know when
You might need them to empty your bedpan.

Have a Great Day!

How did you get my life code??

 

[Trentmom]

Maybe I should have done like a "dododododo" kinda theme on the end...ya know like in Jaws when sompin bad is gonna happen!!!

Hey Red!!!

I like the dododododo way better!!!!!!!!!!!!!!

 

[Trentmom]

Okay...so where did I leave off?? Yea...that's me...hunting around the itty bitty parking lot for a car that is oh so definitely not there!

My first inclanation is to run back into the bar and get all of my co-workers and have them help me search...and that's just what I do! I run...okay...I don't ever run...but I walked really really fast back into the bar and straight up to the teachers.

Me: My car is gone!!!
Teachers: (in fake caring voice) Oh nooooooo!!! Whatever must have happened?
Me: My car is gone...let's go search the itty bitty parking lot for it...I think there may be a gum wrapper that I didn't look under!
Teachers: This is sooooo strange...we don't know what happened!

So...fast forward to us all staring at the now empty parking space where Herman the HHR used to sit...

I pick up my phone to dial my brother (he's a dispatcher) to tell him Hermie is gone gone gone!

Suddenly...laughter!

Me: (now practically in tears and beginning to get on the clue bus!) WTH???
Teachers: (laughing hysterically) Ermmmmm...us and hottie had your car towed!!!!
Me:
Teachers: (still laughing hysterically) Isn't that funny???
Me:

Teachers: (still laughing) It's at the school!!! Isn't that funny?
Me:

So...I had to entrust one of the drunk ladies to drive me 4 miles to my car. By this time...I am steamed...and I do mean steamed.

Apparently...hottie and the teachers thought this would be "funny" and apparently...I didn't! Hottie works with a teacher whose husband owns a tow company... ...so they just picked up my car and moved it 4 miles away!

Hottie is on groundation...hottie is cut off!

What did I do to hottie to get him back???

I strategized on the dis...that's what I doed! That's what I doed...

OH MAN!!!

What was he thinking??

I would have killed him and all of those teachers for thinking that was funny!!!

I can't wait to see what you did for revenge!!!

It must be good, considering you are a Gutter Chic!!

 

[Trentmom]

Did you ever see the Kings of Comedy???? I love that one...I can watch it and laugh over and over every time. Now...I don't like potty jokes...but I love Cedric the Entertainer...he is not unnecessarily dirty! Anywho...on the Kings of Comedy...he talks about how he is a grown-*** man! (Here's hoping the filters work)

Well, that's me...I'm a grown-*** woman! And...I am soooooo ashamed of myself! I am horrified at my behavior! I am a mother...a therapist to children...an adult woman...I'm a grown-whatever woman!!! And...I have stooped to this????

Before you judge...please to remember that he stole my car...my entire barely a year old precious precious car!!!! What would you have done??? I think he is getting off easy...











Mmmmmmkay...so I waited till lunch time...he usually leaves at lunch...he would call me once he saw the note and hopped into his stinky car!

NO CALL!!!!

I call my friend at his school. He didn't leave for lunch.

I wait...the next time he will travel to his truck will be after school. 3:00 rolls around. 3:15...nada...zilch...













3:20...Hottie Calls.

Apparently my "friend" has passed the word around...I had to let her in on it since I was inquiring on his whereabouts at lunch...

Hottie has found the note...he wants to know why I am comparing him with cheese and why all 45 female teachers are standing around staring at him.

He has the nerve to say: "What did you do to my car??? I'm looking at it...what did you do to my car???"

There is silence while he searches!

Then...a scream! A high-pitched girl scream...not from me...but from him!

His words...minus the ermmmmm...yucky ones....went something like this:

"OMG...what did you do??? Whatisthis??? It'ssticky...it'sstinky...whatisthis??? It'sattachedtomymuffler...omgomgomg!!! Whatdidyoudo??? Whydoesitsmelllikethat???"

He calls us "even"....

I am so ashamed....I'm a grown woman...behaving like this????

He asked me where I got this idea...

I tell him on the DIS...

He thinks you're allllllll crazay...the whole lot of you!

I'm sooooo ashamed

That was pretty funny!!!

Tell him steal your car again, and you wil leave the cheese inside his truck inside(you got to get yourself a spare set of his keys in the meantime), in the hot sweltering sun.....That would be good!!

 

[Trentmom]

Hurry up!!! The next chapter cometh...

I'm almost there...

one more page!!

 

[Trentmom]

This has been a part of her life for a while now and she has no idea that she is different from anyone. She is not a complainer so it is often hard to gauge her pain level. We try to keep things as normal and as ordianry as possible. We do everything possible to keep her fevers to a minimum by giving her a steriod as soon as her fever reaches 103.5. But, her fevers climb so high that her body has acclimated and at 103 you would most likely not know she is sick (accept her bad attitude!!) We are currently working with her DR trying to get some new treatment ideas from the National Insitute of Health were they are doing a research study on the fever syndromes. There is so much they are still learning about this condition that we will continue to learn for a while. My only concern is her kidneys and I will do whatever they suggest to give her a long and happy life!!!

Wow, she is quite a little trooper!!

I hope are able to find better treatments to keep her fevers down and her pain at a minimum.

She is so precious and is going to love meeting Cinderella!!!

 

[Trentmom]

I Did it!!!

I made it to the end!!!





Heading off to bed!!

Will look for further updates tomorrow!!!

Nite all!!!

 

[Parla]

That was pretty funny!!!

Tell him steal your car again, and you wil leave the cheese inside his truck inside(you got to get yourself a spare set of his keys in the meantime), in the hot sweltering sun.....That would be good!!

That's actually what I was thinking she was going to do except I didn't think she had keys. It was bringing back memories of Everybody Loves Raymond and the cheese in the suitcase.

 

[Trentmom]

That's actually what I was thinking she was going to do except I didn't think she had keys. It was bringing back memories of Everybody Loves Raymond and the cheese in the suitcase.

Well, we will have to make sure she gets an extra set just in case he ever loses one or if he stelas her car again, so she can put the stink in the car!!



I have never seen that episode of Raymond....care to elaborate?