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.