Pains in the...

Wiggles has never had an ear infection.  Not once in his life.  Last Tuesday he came down with his first.  And his second. 

That's right.  A DOUBLE ear infection.  It's apparently all or nothing in this house.

The next day B hit his head on the bleachers at school while playing indoor soccer.  He vomited not ten minutes later, so I received a phone call from the school relaying this information to me as;

B has head-trauma.

  So I race to pick him up with my new leg brace, that I am not supposed to be driving with, on.  I rush him to the doctor and low and behold, he's fine.  However, after doing a cursory exam, his pediatrician believes that he has the beginnings of strep throat.  Really?  I need this!  My other kids and my husband need this too!  In fact I am totally stoked!

The next day we call for the overnight culture results so that I can figure out how long B will be out of school.  That's when we find out that the test kit or strips or whatever they use for overnight tests was expired and they need us to come in to repeat the test.  I decide to take Wiggles because he just isn't quite right.

It is decided that Yums has a double ear infection.  B still cant' take the strep test because they now realize that ALL of the overnight tests are expired and they won't have anymore until Monday.  Really??? 

Friday B goes back to school because he seems to feel okay.  We all make it through the weekend pretty well.  Monday morning, I am awakened to the sound of my twelve year old crying almost hysterically at my bedside because his throat hurts.  Yums feels better, he goes to school.  (L is still miraculously healthy through all of this mind you)  J and I load B up and take him to work with us until 2:00pm then it's back to the pediatrician we go.  Once again they believe he has strep because now we add a fever to the mix...

So that is where we are now.  Waiting on the overnight results...again.  
And you know what...?
My throat hurts. 

IT continues...

JULY 2010

Ultrasound results are ...normal.
Upper GI results are...NOT.

I get a call from the GI doctor about one hour after having the tests performed.  He says that he is sorry to say this, but my son has a serious potential problem.  He stresses the fact that this is indeed SERIOUS.  I am hesitant and afraid, but I tell him I understand and he proceeds.  "Your son is presenting with a malrotation of his small intestine."  I ask him what the f#*% is that!!!??? I say, sure and that means...?  "It means that he has a crimp in his intestine that could ultimately cause a blockage that could then in turn, infect his intestines which could whereby result in removal of his intestines and that would most likely result in death.  Um, yeah.  I didn't know how to reply really.  He went on to tell me that I needed to immediately contact a pediatric surgeon, did I know one?  Apparently I, having been told my child might have spontaneously combusted at any moment in the last nine months, was still silent because he added that he would recommend the following doctors and that after hanging up with him, I should contact them (here comes that word again) immediately.  At the mention of one of the surgeons names, I remember that this is in fact a conversation I am having with this man and not a voice mail that he has left on my phone,  and I recall this was B's surgeon from when he had appendicitis.  I thank the GI and hang up.  I then call immediately to speak with the surgeons office.

The surgeon I know is booked solid for three weeks.  One of the others the GI had mentioned is available as soon as - get this - next week.  Next week!!!  I go over everything that the GI told me and make sure they understand he said IMMEDIATELY.  They understand and said our appt for the next week.

I call the GI back to make sure this is acceptable, somehow it is.  I may have to relearn the definition of immediately.  It seems my children also have the same definition as the GI.  It would be nice if someone had told me that no longer meant; NOW!!!

After making the above calls, I lose it.  Completely.  I HATE to cry.  I cried.  A lot.  I hated myself for crying.  I cry again.

Next week we meet with the surgeon who agrees with the GI, who agrees with the radiologist at CHOA, he has a malrotation of his small intestine.
What now?
Surgery.
Surgery with a minimum of five days in the hospital.  Scheduled for...you guessed it the week school starts.  Wiggles' first year of full-time DDPK (Head-start Program). 
We had a scare to begin with already with his IEP and some people feeling like he needed to be in the "medically fragile" class.  I do NOT need this.


AUGUST 2010

Two days after turning three, Yummie has his surgery.
His surgeon comes out to tell us that this surgery definitely saved his life they were wrong and his small intestine was not malrotated. 

They
did
this
surgery
for
NO
reason.

Every hope that I had for a cure for IT slowly drained from my body.  I held it together but only with the never ending support of my family and one of my best friends AM.  I will talk more about this at a later date. 

Three days after surgery IT comes back.


SEPTEMBER 2010

School is going great for Wiggles!!  Transitioning was REALLY difficult for him but now he is doing AWESOME!!  He has OT, PT, and SP at school during the week as well as at Essential still.  This makes for a busy week not even including our other two boys.

B and Lubee have soccer three days a week.  J and I have softball two nights a week.  We will talk about that again later too...

IT only happened once this month.


OCTOBER 2010
Ha!  I made it!! 
I will never again get so far behind with this blog.  Laundry maybe, but never again the blog!

Yummie knows the difference in his colors!!  You can ask him which one is red, green, yellow, etc. and he KNOWS!  Of course he will only point at the correct answer, but he KNOWS the answer!!  He says............................MAMA!!  I could die happy right now.  Even if he screams and yells instead of trying to talk.  Everything I have been through...I would go through all over again just to hear my precious boy call me Mama. 

Everyone who knows me, knows that I have a saying when it comes to patience.
I prayed for patience, and God gave me Wiggles. 
I have tried to tell God that I get it.  That I understand and that I have learned this lesson.  That he can "fix Yums" and I will never forget what my trials have taught me.  When my prayers seemingly go unanswered, I can't help but wonder, will this ever end?  For Wiggles?  For us? 

Speaking of speech (hahaha), I wanted to take a moment and list all of Yummie's words for y'all;
I
Hey
Bubba
Mama

Okay, that's it.  Yep.  That's ALL!  Granted he can almost say a few more, they don't come out clear and he is not consistent with them.  Oh, but my favorite is when he adoringly looks at me after a major tantrum and what feels like FOREVER in the timeout chair and says, "Mama, I ove uww."  I want to cry.  Maybe, I have.  I just know that occasionally out of the blue he says things.  He walked into the kitchen last month and saw his daddy.  He says, "Hey dada!"  I watched as J was instantly transformed into putty in Wiggles big little hands. 

Other than signing he pretty much refuses to speak unless he feels like it.  His teachers and therapists say that for the most part he is very quiet.  that is unless he sees me and then the tantrums ensue.  I have heard he does this because he loves me so... Nothing like showing how much someone means to you like screaming, crying, gagging, banging your head into the wall-floor-ground-hard surface.

But that's Wiggles.

Textures still piss him off.  He hates new ones.  He still avoids grass, leaves, and certain animals.  Although he can now ride a pony... not by himself but he does sit alone.  He will even pet this pony and lead it around behind him like a puppy.  He has also petted a bunny and a bird after mucho begging from me and his Nana.  He likes puppies and small dogs but nothing else right now.  He will play in pudding and mud and even dirt now, so we have made progress.

He is still highly sensitive to smells and sounds.  He spins and flaps his hands continuously, making me very upset.  We believe this helps unleash IT. 

We had a life test done on him a couple weeks ago, remind me to tell you about that experience later as well.

Lubee turned 10 in August and B turned 12 last Saturday.  WOW!
I will keep trying to remember more to post.

The beginning of IT

                                                                All my BOYS!!
                                                             (ignore the time stamps)


I know, I know.  You wonder if you should have your vision re-screened.
Yes, this is REALLY me.
I was NOT abducted to the best of my knowledge (except now that I think about it, my kids have been monopolizing all of time until lately).

I will attempt to briefly brief you (hahaha) Sadly this made me laugh so I will keep it, even though I see you rolling your eyes...it's my blog, so bite me... on the past year in the Wigglehams' world:

NOVEMBER 2009

Wiggles begins getting nauseated and falling down a lot.  He deteriorates right before my eyes.  He gets too weak to walk, too weak to stand, then he can only lay on the ground screaming in...pain?...frustration?...fury?...Hell if I know.  But it KILLS me to see him this way.  Nothing we do seems to help.  Nothing comforts him.  After hours in a downward spiral, he crashes.  Throwing up for hours afterward.  It takes him days to return to "normal".  I feel helpless to this invisible vice that rips my child from my arms and renders him helpless and hurting. 

Three days a week.
Then one day a week.
Then IT was gone.


DECEMBER 2009

  Bad times people, BAD times.
 This was a very humbling experience for J and I.  We literally used up the last of our savings trying to stay current on our bills.  I should probably elaborate on that a little...our normal monthly obligations AND Yummie's medical expenses.  (For all of you who know; what is considered "medically necessary" from various doctors and specialists to find out what plaques your mystery child, and what said child's insurance company deems "medically necessary" are quite often never the same.) 

We were once again DENIED by Medicaid. 
I know, SHOCKING!!  In October I applied for [benefits] for Wiggles.
On December 24, 2009 our lives were changed when, he was approved!!
YES!  I cried and laughed and gave the Medicaid office the one finger salute from my driveway!!  Because not only was he now getting [benefits] but full Medicaid insurance benefits too. 

IT came back.
Last week of the month for only one day.


JANUARY 2010

Sotos testing came back...negative.
Geneticist swears that he has the syndrome however.  She says she will begin talking to her peers at conventions about Wiggles and show his picture to all of them as well...I don't know how I feel about that.  On one hand, I am glad that she feels compelled to classify my child.  On the other hand, it sucks knowing that that is what she is trying to do, classify my CHILD. 
We added another geneticist to his cause. 
What is her initial impression????  She thinks he has Sotos Syndrome.  Of course, right?  We said, "Sorry, but he was tested for that and it came back negative."  Much to our dismay she asked, "which test did he have?"  Um................the new one...??? 
Apparently, there is a test for deletions which thankfully, we had negative results from already (meaning we wouldn't have to repeat this test) and a test for mutations, which we had not been informed about.
So you want to know what the results to the second test are, right?
Yeah, me too.
Only I am too much of a chicken s*#@ to go and have the second test.  I have put him through the agony of test after test, doctor after doctor, and now that the end may be in sight... Now that we may be able to put a name to this face that has tortured us relentlessly (not literally--although...) for years, I cannot bring myself to do it. 

I think I am afraid of knowing.  Like, as long as we don't officially know then there may be a cure, there may be hope for him to be normal...  Give me another test, I will take him tomorrow.  But this one... It scares the hell out of me. 


IT came back again.
Three times a day, once every week.


FEBRUARY 2010


IT is still here!
We spent all night in the ER one night because he lost too much fluid.  He threw up eight times in one day alone!!  Not to mention that was the third time that week that he had been sick!
The doctors are NO help!  They are stumped.  We don't know what IT is.  Is it a new symptom?  Is it a new condition altogether??? 


MARCH 2010

At this point we were directed to a neurologist.  We had an EEG done.  Want to guess???  Yeah, normal.
She thinks that maybe he is having migraines.  Okayyyyyyy.  How do you know if your child who can A: not speak B: not point and C: not draw you an effing picture is having a migraine? 
You don't.
So we tried medication for migraines and nausea medication for well... nausea.


APRIL 2010

IT still lurks beneath the surface.  We tried the elimination diet for two months to no avail.


MAY 2010

We try a different migraine medication.  It doesn't work either.
IT comes once a week now.


JUNE 2010

Now we have a GI doctor.
He orders an Upper GI series and an abdominal ultrasound to start.
IT only comes once this month.

(We still managed a beach trip)

WALKING!!

Who is walking??!!

Yummie is!!!

Friday, when Jay and I got back in town the most amazing thing happened. Wiggles walked like ten feet and remained standing! No dive at the end this time! He stopped! All by himself! We were SO happy. Words cannot even describe how great we felt. And every day since, Yums has continued to walk further and further. He still prefers to crawl of course but he actually substituting crawling for walking a lot! He can walk with a cup in his hand even while he is drinking from it! AMAZING!

Wiggles is also signing!

He can sign More, Milk, Eat, Please, and he is learning more every day at school! We are really proud of him.

He had two shots and the 'flu mist' today and he was extremely mad at everyone. He remained upset for the rest of the evening but a small price to pay for health. Tomorrow we go for his blood draw for Sotos. Finally, we get the one test that we have needed now for three months. Next week, it is on to Dr. Kendall, our other geneticist. And two weeks later to the Neurologist.

His Pediatrician is going to diagnose him with as many diagnoses as she possibly can so that we can try to get him on Medicaid before our appt at Marcus in November. Otherwise, we are going to be eating Ramen Noodles and Dairy Queen for a VERY long time. Wait, we already do that. I guess we are going to be looking at second jobs if this insurance doesn't come through :(

I applied again for Medicaid two weeks ago, and we haven't heard back from them yet. The last time that they denied us, we heard back from them almost immediately, so maybe this is a good sign...

I don't know what i would do without all the support from husband, my family and my best friends in the whole world! I love all of you so much!

Lemons

Outrage.

That's the only way I know how to put it.
I am 100% completely outraged.
There are only a few qualities in people that have the ability to frustrate me to this point.
Liars, Cheaters, and Human Beings with a total disregard for anyone other than themselves. (We will call them selfish pricks.)
They will hurt anyone and everyone in their way to self-gratification.
Whether or not that person is friend or foe or even family. They are non-discriminatory. It doesn't matter to them who they hurt as long as it is not them that suffers.
It is them and their enablers that really do me in.
Enablers are incapable of justice. They are only supporting a lost cause, contributing to the inevitable downfall of their charges.
Is it Love?
Is it stubbornness?
Mercy?
Or blind faith in a perpetually evil being that causes them to ensue this devastating course of action?
I do not know. But I do care. I want to know WHY!!??
Why can moral and decent people with strong values and principles be cast aside by the same people that choose to devote their support to those unworthy of it?
After a time does this not become predictable?
Do they not grow tired of this twisted game?
Are the enablers themselves weak?
So many questions...


And yes, I need to know. I need to know so that I can accept what I cannot understand. Without acceptance, my mind rages with an inner war.

First and foremost, I have this great desire to "help" people. Unfortunately, I have yet to meet anyone with these qualities that wants to be "saved". In the past, the only thing this has brought me has been inconceivable amounts of pain. So now, normally, I would choose to "escape" these tragedies of life by avoidance. I would simply, not allow myself to be associated with them. I would avoid them, pray for them, and leave well enough alone.


But what about when certain circumstances or relationships bring these people to you for good? What if avoidance and ignorance are no longer available options? How can you live with them everyday in your life but not be affected by them? Can you? How do you prevent them from dragging you down with them or at the very least, stop the ever increasing aftershocks they leave in their wake? It seems that everyone they come into contact with is a little more empty, a little less happy than before. How can you be so relatively close to them but not harbour hostility? What about the enablers' themselves? Can you not hold them accountable for their actions either? Do you simply dismiss them as well? How long can that go on before pandemonium strikes? How long before it has affected you in such a way that you are changed? Bitter? Resentful? Is there anyway to not let this happen? They sure as hell don't deserve the credit you are giving them by letting them "get" to you but how do you write them off?


I am usually a lemonade maker...
But today, it is pouring lemons.

Yummie's 1st Day of Preschool

What a wonderful first day of school!

William has two GREAT teachers, and I am so happy they love him already! Jay and I dropped him off at 9:00am and picked him back up at 12:00pm. It was definitely the longest three hours of my life. Apparently, Mommy was the one with the attachment issues. He did GREAT!

There are three other children is his class right now, so he gets extra special attention from them. Hopefully this is really going to help him progress.

Let's all pray that he continues to do well and enjoy school this much all year long!

DR. Mommy

Where do we go from here?

Pediatrician = check

Neurosurgeon = check

Pediatric Optometrist = check

Geneticist = check

Ear, Nose and Throat doctor = check

Ultrasound = normal

Audiology = normal

Blood work tests = normal

CT Scan = normal

MRI = normal

Vision Screening = normal

So, I put in a call to our Pediatrician who obviously, is supposed to be in control of this three ring circus that we call our lives now. What does she say to do? "Oh, it sounds like you are doing a great job Ashlee, just keep doing whatever it is that you are doing." WHAT?! Excuse me, but ARE YOU SERIOUS?!!! Just keep doing whatever it is that I am doing?! I am confused. Do I have a medical degree that I was unaware I possessed? I think not. I have no idea what I am doing here. As if it wasn't bad enough taking on the responsibility of getting him to all these doctors and taking him to all these testings and then dealing with all the results that they wield, now I have assumed the responsibility of being his advocate and doctor?! WTF??? Who does that leave me to blame if his "condition" isn't properly assessed? Who can I depend on to do everything humanly possible to help my son? Myself? This is not fair. To put a mother through everything that I have been through so far and then to give her the added responsibility that if she doesn't adequately diagnose her son then that is "her problem" because she wasn't good enough, didn't try hard enough, didn't know enough to do a good job?!

As if the weight of the world wasn't already on my shoulders.

Now if I "F up" what will happen to my son? My Amazing Little Wiggles?

What will become of him because I was judged and found lacking?

I think I need a new Pediatrician.

And I can only guess that that will mean NEW testing, NEW theories, and NEW specialists. What am I doing?

I just wanted someone to help Yummie. To help him be "normal" in every sense of the word. To help support us, his family, when we feel like we have failed him. To keep us looking up but also to prepare us for the times that we have no choice but to look further down.

Their job descriptions must have changed in the past few years. Or maybe I had an idealistic picture in my mind of what a doctor was supposed to be like.

Stumbling into all of this head-on was hard enough, now I have no one else to blame for any shortcomings besides myself. It seems that his doctors want no part of it on their shoulders. Is something wrong with him? They are quick to point out YES. Do they know what "it" is? No. "Just keep looking", they say. Thanks, I appreciate the clear cut advise.