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

[Goofyluver]

I started this 45 minutes ago and haven't stopped laughing. My poor dog went and hid in the kitchen Keep it coming

Well, if we have scared the dog...then we've done our job!

This is such a great TR and you haven't even gotten to the trip yet!~

Rene'

Welcome to our TR!!

Thanks for sharing. I can't wait to hear more info







Darn, because it would be good reading. At least I can read some here

You don't want us to write a book! We're too self righteous for that. We think we're the only 2 in the whole wide world who are right!

 

[meeskamouska]

Glad to see the action didn't stop while I was out of town!! I see some new faces and some more of Goofyluver's stories from our youth!!! Hope that you all had a great Easter weekend!!

 

[Miz Diz]

Having a good time on this TR!

 

[OregonDisneyFanatic]

Oh Jen....

 

[Goofyluver]

Oh Kristiiiiiiiiiii!

 

[PaMom001]

Oh Jen....

Oh Kristiiiiiiiiiii!

Where are the paper towels?

 

[Goofyluver]

Okay…so Tera and I are obsessive planners. Tera…the mom who is perfect in every way, and me…Miss OCD. We are girls that wanna have fu-un! O-oh, girls just wanna have fu-un! (I was singin’ there…did ya’ like it? Luvz me some Cindy Lauper…yes I do!)

There’s another reason that Tera and I want this trip to be perfect and I think we should share it with you. I’m not gonna write for Tera, she’ll add her explanation on her baby genius. But, you’ll see that we bond on many different levels:

Tera and I are both parents of very special children. Extraordinary children, dawlings! Both Tera and I have special needs children. They have different needs, but both have medical bizness goin’ on! We try to keep positivity at all times…but we both know how hard it is to parent these kiddos.

My son, Jon, was born almost 11 years ago. 5 days after he was born I knew something was wrong. I knew it…felt it in my bones. Jon was severely developmentally delayed. He couldn’t hold his head up until he was 4 months old. He didn’t crawl until after a year, etc., etc. He has been in Speech, Occupational Therapy, and Physical Therapy since the age of 2 months. I searched for years for a cause. I got my answer when Jon was 4 years old, after years of doctors, tests, pokes, and prods.

Jon was diagnosed with Agenesis of the Rostrum of the Corpus Callosum (ACC). ACC is a malformation of the portion of the brain that transmits information between the two hemispheres of the brain. Therefore, any message transmitted between the two hemispheres is affected, either transmitting slower than normal or not being transmitted at all. In addition, Jon has been diagnosed with Static Encephalopathy (a neurologic condition meaning that neurologic functioning is impacted), Sensory Integration Dysfunction, Hypotonia, depressed immune system, slowed growth, asthma, and allergies. He also has orthopedic needs…he was in leg and foot braces for years. However, they didn’t help and made it difficult for him to walk and run, and we decided a year ago to forgo the braces. In addition, Jon has speech and language delays, fine motor, and gross motor delays. We were told a bit over a year ago that Jon’s disorder (ACC) places him most probably somewhere on the Autism Spectrum. However, I have chosen to stick with the medical diagnosis that we have, and not pursue a diagnosis of Autism. Hey…doesn’t the kid have enough labels? Quite a lot for a teeny, tiny 10-year-old, huh?

ACC is the same diagnosis that the real-life “Rain Man” suffers from. ACC affects all persons differently. There is a wide spectrum of symptoms and manifestations of this condition. Jon lies somewhere in the mild to moderate section of the spectrum. Jon is 10 and is in the 5th grade. However, Jon is functioning in the 1st to 2nd grade academic curriculum. He recently tested on a mid-1st grade math level and a mid-2nd grade reading level. Jon is impacted academically, cognitively, and socially. He functions about on a 6-7 year old level cognitively. He struggles with academics…things that came so easy to me as a child, take Jon years to comprehend. Jon has many friends…and kids seem to enjoy him. But, he is not on the same level as his age-peers.

Jon has struggled his entire life. He was very sick for many years, due to his depressed immune system. He was in the hospital and at the doctor constantly when he was younger. He still gets sick far more often than most children, but he is nowhere as ill as he was as a young child. His asthma and allergies also make infection a constant risk. He has recently been diagnosed with depressed growth. We will have to make a decision in the near future about growth hormones, depending on how much he has grown by the time he goes to the next appointment.

A lot to handle? Absolutely.

But, Jon is amazing. He is amazingly sweet and amazingly funny. He will never know the extent to which he has affected my life. He has taught me far more than I can ever teach him. I would have 1,000 Jons. (Remind me I said that when he is in his bratty moments)

I think parenting is the most difficult J-O-B in the world. Being the parent of a special needs child magnifies the difficulty of being a parent in general. But, the gifts far outweigh the negatives. Jon has taught me that we must relish the small things in life. Things like taking a trip to Disney…may be just a good time for some, but for us, it’s a life experience. It’s something to bring a smile to our kiddos faces!

Over Jon’s lifetime, we have been told what he will never be able to do, or what he can’t do…by several doctors. Here’s a short list:

1. Jon will never walk…and if he does walk, he won’t run…and if he does run, he’ll fall down all the time…(guess who is a speed demon now!)
2. Jon will never read (guess who’s a great reader?)
3. Jon will never write…his fine motor skills won’t allow him to do so (guess who has gorgeous handwriting?)
4. Jon will have to use a computer to communicate because his speech will be limited as well his written abilities (Jon uses a computer all right…to play video games!)

I have never listened to the “He can’ts or he won’ts!” If I did…where would he be now? I’m a fierce mommy! I am a strong advocate for my son. I owe him this. Because he has paid me in unconditional love that only he can give! It’s hard…it’s the hardest thing in the world. But, it’s miraculous to watch. Jon brings me more joy than I could ever put into words. I am amazed that I was blessed enough with the honor to be his mother. He amazes me on a daily basis. I am so lucky. He is truly a gift in my life.

So, you see, when you think I’m a psycho planner lady…remember, in the back of your mind, that I’m doing it all for him. And, who’s been by my side the entire way? My very BF…Tera…the most perfect mommy in the world. Take it away Tera…luvz you girl!

Here is the enforcer at the Albuquerque Balloon Fiesta!

 

[meeskamouska]

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!

 

[ProudMomTo3Boys]

You guys are such great moms. Thats all!!!!! Great moms who are doing such great things for their kids!!!!

 

[puggymom]

I just read this whole TR and I laughed and cried and think you 2 are the best moms. You 2 sound wonderful and are blessed to have each other.

Can't wait to read more.

 

[luvngoofy]

Your kids are beautifu! They are so lucky to have great, determined moms like you two! And, you both are so lucky to have each other.

 

[twob4him]

OK, I found ya...I am only on page 2 but fading fast...its 11:30 pm...so I am subbing and reading the rest tomorrow.
This is gonna be good!

 

[WDWHeather]

Oh, you guys have been cracking me up!!
I love the picture at the balloon fiesta!

 

[Goofyluver]

You guys are such great moms. Thats all!!!!! Great moms who are doing such great things for their kids!!!!

Thanks hon!

I just read this whole TR and I laughed and cried and think you 2 are the best moms. You 2 sound wonderful and are blessed to have each other.

Can't wait to read more.

Thanks...and I promise our next installment won't be nearly as depressing!

Your kids are beautifu! They are so lucky to have great, determined moms like you two! And, you both are so lucky to have each other.

We are sooooo lucky...don't let our troublemakin' fool ya'!

OK, I found ya...I am only on page 2 but fading fast...its 11:30 pm...so I am subbing and reading the rest tomorrow.
This is gonna be good!

Okay...now I showed you mine!

Oh, you guys have been cracking me up!!
I love the picture at the balloon fiesta!

Thanks buddy!

 

[Disneyland_Mama]

Awww!!! What beautiful children!! They're very lucky to have Mama's like you both!!

 

[Illuminations_Rocks]

Gorgeous children to match their moms' gorgeous hearts.

 

[gnbuggy]

Jen and Tera. You will have so much fun at WDW! I think its great that you two are going to be able to share the experience with your kids together.

 

[DisneyJo]

You both have such beautiful children!

 

[Grumpy's Wife]

Both the children are simply adorable. I know this trip will mean the world to them when they look back on it as they grow older. You are both wonderful moms.

 

[PrincessV]

Beautifully said by both of you! I sometimes struggle with my job as my DS's advocate and he isn't even considered special needs. By supporting your kiddos and encouraging them to do all they want to do, regardless of what the "experts" may think is possible, you're creating some extroardinary future grown-ups And goodness knows we need more of those.