Wednesday, May 28, 2008

VENT ! Ok now Breathe in 1 2 3 ... Breathe out 1 2 3

For those of you that have the wonderful and blessed opportunity to "chat" with me on a regular basis you are aware of some of the "drama's" that have been occuring here over the last year concerning my youngest son.

Today I want to say ............

I HATE SCHOOL !

Seriously I am starting to think it's wayyyyyy overrated !

Ok Ok .. Now I will Breathe In , Out , In , Out ... Better now TY !

Of course education is important .. vital even.

It's the GETTING one that is not always as easy as one in this great country of ours is led to believe.

I had the sad experience of reading and listening to a story about a teacher in FL who had her kindergarten class "Vote" as to whether they should keep a student in their class.
5 and 6 yr olds. What the hell was she thinking ???

According to the Mother the teacher also encouraged the other classmates to give reasons "why" this student should be cast out. Even with their limited vocabulary they were able to come up with some very hurtful adjectives.

Not surprisingly this child has recently been tested for Autism or more specifically Aspergers disorder.
Aspergers is on the Autism spectrum. In laymans terms at the high functioning end.
I am not going to go into what it is or how it presents itself as most of my blogger friends that read this already know.

Thats amazing too as they have taken the time to educate themselves on it. Not because all of them had too personally but because they are our friends and family and have taken the time to try to understand our child.
I do need to note that "High Functioning" doesn't mean "less affected" it just means affected in a different way than others may be on the Autism Spectrum.

I am dealing with this myself as the parent of a "A child with Autism on the High Functioning" end of the Spectrum.

Fortunately for us with the exception of a few, we have had wonderful teachers.
Kind, caring teachers who listen to your concerns and try to address them.

That said it is my experience that the school districts themselves would rather spend tons of the districts tax dollars ducking and dodging the services these kids need instead of addressing them before it gets to that point.
They seem to forget that WE TOO are taxpayers in the district and are only asking for an appropriate education for our children by qualified teachers.
I can't even count how many times I have had to "educate" some of the professionals within the school district on just what Autism is.

Sorry crazy teacher lady in FL these kids are here to stay.
Deal with it and if you can't, then you need to find a new profession.
Preferably one that doesn't involve empathy for another human being.

FAPE (Free Appropriate Public Education) is a right granted to EVERY child not just the ones that you find "less annoying".
The services that should have been provided to that child in FL are now going to be on the front burner.
Sadly at the expense of the child and his family.

As I type we are still in that process ourselves. Trying to get an IEP together that works for my son and can and will be implemented as well.
It is frustrating beyond words but we continue to march on ... we have too, My son's future is depending on it.

Saturday, May 24, 2008

Memorial Day


Wednesday, May 21, 2008

To the Max !


So today we finally reach the Max/Maintainence dose of Nicks Increlex treatment.


It has taken 3 weeks with 15 cc incremental increases each week to get to this point.


He now gets 46 cc of Increlex 2 times a day via injection. So far we have not seen any huge side effects, the occasional headache but that can be helped quickly with a shot of Orange Juice or a fruit roll up and sometimes a Tylenol.


Now one would think that after 3 weeks of doing this I would be comfortable giving him the injections by now.

Not so much 0_0


So I had read of a device called "Inject-Ease" on a IGF-1 message board ( yes there are message boards about EVERYTHING on the net ! ) and thought I WANT ONE .

Anything with the word "Ease" in it is MINE !!


It's a device that looks like a bloated pen that you drop the syringe into which then gets locked into place.

The good part of this device is that the "needle" itself is hidden from view so that everyone is less anxious waiting for the initial injection.

After placing it on the skin and giving it a few twists around to add pressure you hit the button to release the needle into the skin.

You still have to slowly push the plunger down to get the meds into the injection site but at least the needle is always delivered at the same depth and rate of speed each and every time.


The first time we tried it last night Nick was not impressed with the looks of it.

I think he was thinking the whole device was the shot and he wasn't having it.

After convincing him that it would be "better" this way he let me try it out.

It was almost as nerve wracking as the first shot I had to give him but in the end he was really shocked that it did seem to hurt less.

What I loved about it is that the amount of Meds in the syringe is also no longer visible to him.

This was starting to become an issue because he knew there was one more increase coming and he wasn't looking forward to it. (the med does sting some when going in)

So this morning with the first max dose cocked and loaded I gave him his shot and he never knew that the increase had taken place and I have no plans on telling him that either ;)

We haven't measured him yet to see if he has grown any. I really don't want to make him overly anxious having him anticipating "growing" everyday or week.

Not to mention everyone's height chart is just a tad different.

Normally this wouldn't be a huge deal for a child that is growing normally , but for a kid like Nick 1/4 inch is a huge deal to be off by.

He goes back the first week of July for a recheck and I told him we may wait til then to check on the doctors height chart so that we definitely know if its working by then he will have been on the meds for about 2 months.
...NOW if only they could make an "IEP-EASE" my world would be complete.
That is a whole other blog post in itself. 0_0


Tuesday, May 13, 2008

Leaving these wheels behind ....


Yes .. tomorrow I do believe I will take him for his learners permit.
I know doing this will put that skateboard on a shelf in the garage where it will now collect dust.
He is 16 1/2 and I have held him off as long as I could but it's time.
I must admit for somewhat selfish reasons too.

Hey I need some milk .. go get some.
Pick up your brother from school.
Do the Mickey D's drive thru run for me tonight.
AHHH to have another driver in the house besides myself during the week.
There are benefits YES but all the same ...

I know I will miss the skateboarding days.
ps .. thanks Mm for the picture posting tips !

Wednesday, May 7, 2008

Superman lives !


We have an ending to a previous drama.

My son's meds were approved by the insurance company !

Wooo Hoo !!

He can now begin "growing" again.

Thats the good thing ... the iffy part for him is just how that growing gets done and who is responsible for making that happen.

Me .. I am the one that "makes it happen".

Me, coming at him with the meds to make it happen which involves ultra fine needle injections 2 x a day.

It's not the kind of growth med that the athletes are using to improve their bodies and their game. If you are an adult and have already stopped growing, this will do nothing for you. Due to that there is only a limited number of years, depending on your childs age and development, that this therapy can be used and be effective. It will only work in children that have been diagnosed with Severe Primary IGF-1.

He has been prepped for this for months. We have talked at length about having to "get a shot" 2 times a day so that he knew there would be no delusions when and if it started. He is totally onboard for it because he realizes this is the only way to help him catch up in his height and be able to meet eye to eye with "Joe" at school.

Joe the kid that has come up with all kinds of descriptive monikers (insert sarcasm here) for his height.

The starter kit of medications arrived last week. It was shipped overnight in a HUGE box with all kinds of goodies in it from alcohol pads to needles to the actual medication.

Yesterday afternoon we went for our "shot training".

I was quite nervous, afterall I am not the RN here my sister is. Why isn't she here ????

The instructor for this class was wonderful, young gal in her 20's.

She is an insulin dependent diabetic and is comfortable with the drill and very at ease with showing others how to do it.

She showed me how to prepare the injection. This took a few practice runs because the first 2 times I bent the needle. SIGH I guess I was more nervous than I thought.

My son's confidence was waning while he watched me screw that up 0_0

Finally after practicing the actual injecting into a rubber pad that is supposed to resemble the feel of something human I was ready for the real thing.

My son was nervously wiggling all over the exam table as I approached him with the needle.

With the instructors help on how to pinch the skin to prepare the area my son began saying ..... OHHH NO THIS IS GONNA HURT !

We counted to 3 and then I went for it.

His eyes were as big as saucers as I know mine were too while I waited for his reaction.

After finishing injecting the medication and removing the needle he said "Thats it ? "

He kept looking at his arm trying to find the spot where he had just been injected and said

"Wow that hardly even hurt !"

That is as close to a WAY TO GO MOM as I was going to get.

I felt the weight of the world being lifted at that point as the instructor said I had done a great job.

After leaving the office and watching him for possible side effects I felt more confidant that I could do this .. heck I have to do this, I am just glad it wasn't as traumatic for my son as I feared.

This morning as I was preparing his injection my husband was just about to walk out the door on his way to work.

I said .. You know , you have to learn how to do this too.

He responded by saying "Yeah I know, I will" but I could tell this was not something that was on his list of things to do right away.

I have a feeling he wants to see that our son will really be OK with me giving the shots before he has to do it.

I have a few other caregivers that will have to know how to do it too in the event that I am not able too some days. I know they are nervous as well but trust me folks if I can do this ..... anyone can !
Or ..... Call my sister !

Thursday, May 1, 2008

Fabulous and the Pea Coat


After a whirlwind year of dramas, my husband and I along with "Mr and Mrs Mormon", finally got to jump on the Celebrity Century and cruise to somewhere FABULOUS which we had planned almost fully a year ahead of time.

Fabulous for me is somewhere where turtlenecks are foreign clothing. Something people snicker at while they are pointing you out to their friends on the street.

In this case Fabulous was going to be Key West, FL and Georgetown, Grand Cayman.

Those who know me well know that getting on an airplane is a big deal for me.

While I appreciate that they can get me there in a fraction of the time it would take me to drive there we still have not bonded.

I like to drive ... if anything I am a control freak when it comes to transportation. The pilots on these flights would benefit greatly from my assistance but they have yet to take me up on my offer. Whatever !

Philadelphia airport is our first step toward fabulous. Checked bags get checked and then on my way to Security for a screening.

Once again I am pulled over by a member of security who is holding up my large green monogrammed tote bag and asking if it belongs to me. "Yes, that's mine."

"Please put your shoes back on and join me over here."

Geeeezzzz what now ????

50% of the time I have flown I am pulled aside for a secondary screening of some sort. Me, 5'3", 40 something, Me.

Maybe it's the look on my face when I am standing in line to go through security. Perhaps I should clear that up. It's not the look of a potentially dangerous individual .. it's just the look of fear. The look on my face is really that of " I can't believe I am going to get on that thing again, and that I actually paid THEM for the opportunity to do so".

I had meticulously gone through that bag to make sure there were no WMD in there before I went to the airport to avoid just this moment.

No nail files .. no fingernail clippers.. no lighters.. nothing that might be used as a weapon against my husband when he falls asleep on the plane and starts snoring ignoring my obvious panic while sitting in a tin can 30,000 feet above the ground ... NOTHING.

Mr. Security starts to pull things one at a time out of my tote bag.

People magazine ... Enquirer ... Ohh and Time magazine which was featuring a story of Barak Obama's Mother on the cover. While some may consider the Enquirer a WMD I find it a wonderful form of distraction while flying. Beyonce had a beautiful wedding and Britney's hair is growing back. :)

My big faux paux at the Philly airport this time ..... Sunblock.

A brand new, never been opened, #15 Sunblock in a tube that was OVER the allowed 3 oz max.

That's what I get for trying to be a responsible Irish heritage sun worshipper.

Mr. Security holds it up and says .. "This is the problem" and quickly tosses it over his shoulder into a bin holding lots of unopened sunblock tubes and hands me back my tote bag.

I was a tad ticked. I am not ticked at the security guys for doing their job, but I am ticked at the folks that are responsible for these "New rules" in the first place.

Thats a whole different blog post I suppose but I hope the security guys at least benefit from all these tossed sunblock tubes and are not just throwing them away.

I envision a security locker room sunblock swap at the end of each shift....

"Hey I got some #15 over here."

"I'll trade a 30 for that and throw in a tube of after sun Aloe !"

Soooo we finally get through the airport, on the plane, take flight and land safely in Miami.

We meet our Celebrity cruise line transfer rep and are shown where to go to meet the bus that will take us to Fabulous.

Before we board the bus we add locks to all of our suitcases because they will now be in the hands of mystery people for hours before they land outside cabin #1246 on the ship.

I should add Mr. Drama added locks to all of them but 1 small rolling suitcase.

It was the bag with all of our toiletries. When I asked him why he didn't lock that one he sighed ... "Really who wants our deodorant and shampoo ?"

Hmmmm Not sure but someone DID want my #15 Sunblock didn't they ?

Wooo hoooo ! We have made it through all of the ships security points and we are now on the SHIP !

We are greeted with a glass of champagne and start to wander the decks of the ship trying to soak in the scenery and keeping an eye out for Mr and Mrs Mormon to get onboard.

After a few hours of wandering, meeting up with the Mormons and surviving Muster Drill we go back to our cabin and sitting beside our door in the hallway stacked up on one another are all our our luggage bags.

Great we can finally unpack and get Fabulous started.

I hang the hangables ... put away the drawables and then grab the bag full of toiletries to load the bathroom up.

When I unzip the top of the bag a black wool like poof of material pops out.

I was stunned for a minute .. geez maybe I have someone else's bag ?!?

This black wool thing has been jammed in my bag, barely allowing the zipper to close.

Underneath it are all of my things so yes indeed this is my bag.

When I pull it out I realize it's a black Pea Coat. Upon further inspection I can see it's a size 22.

From the rips and tears scattered around on it I can see that it has been a rather heavily used Pea Coat at that.

I ask my husband ... "Is this yours ? "

Now I already know the answer to that but it's one of those situations where you have to ask anyway just because you HAVE too.

He replies .. NO.. where did that come from ?

Me : It was in the toiletries bag.

How thee heck did it get in there ???

Somewhere between the Philly airport and the cruise ship I have picked up a tattered size 22 Pea Coat.

MARVELOUS ! So much for all the super duper security systems I was just put through.

Now folks I ask you what does one do with a tattered size 22 black wool Pea Coat on a cruise ship headed for the Caribbean ??

You torture your next door cabin mates who just HAPPEN to be your Mormon friends with it.. thats what you do ;)

Mr. Drama tosses the Pea Coat over the wall that divides our balcony from theirs and says nothing. Sooner or later one of them will find it.

Sure enough ... Mr. Mormon discovers the Pea Coat laying on his balcony.

He shows it to Mrs. Mormon who has no clue where it came from and she in turn asks us about it.

We laughed about it and told her the story of how it came to be.

We all leave for dinner and more deck perusing and when we return to our cabin there on our balcony is the Pea Coat with a note attached.

"Let there be PEAS on Earth and let it begin with me"

Ohhhhh No what has that MamaMormon started now.

There is no way that Mr. Drama is going to let that one go unanswered.

The Pea Coat has now become a one upping tool.

For the next few days it gets tossed back and forth from balcony to balcony with new notes attached to it each time.

Notes from white note paper .. notes from the backs of discarded receipts ... dry cleaning request forms, pretty much anything that could be written on.

Each note was added to a new spot on the coat with the previous notes remaining where they were.

The one Mr. Drama was most proud of is when he added some artwork to it as well.

He took my Dark Pinkish Nail polish and painted a blood stain on the coat in the area that would cover the heart and wrote:

"Shot through the heart and your to blame, this coat gives outerwear a bad name"

Damn these two were on a roll and it was hysterical.

Mr Mormon and I just sat back and observed .. on that we megged.

Let these 2 crazies go at it.

Seriously a battered Pea Coat , Who knew what power it had ?

About the 4th day in Mr. Drama tosses the Pea Coat down to Mrs. Mormon while she is eating breakfast on the deck below us.

She gives it a spot at the table with her and Mr. Mormon by placing it on the back of a chair at their table.

There it hung.

For 2 full days no one else sat at that table because they thought it was taken due to the Pea Coat hanging on the back of one of the chairs.

In a way it was great for us. We always had a table to sit at when we went to that deck.

We were the only ones brave enough to sit at the table with the Coat.

Because our balconys were right above this table we could observe our Pea Coat anytime we wanted too and laughed when the rest of the tables were full .. but that one was empty.

The last morning of the cruise we had to be up early .. 6 am to get ready to disembark.

I went out to sit on the balcony one last time and at first I didn't see the Pea Coat.

I thought, well finally someone threw it out.

After a few minutes of taking in the view I see two Ship officers inspecting the deck below us.

Thats when it happens. One of them yells something over to the other one in their native language ( I have no idea what it was but it wasn't English) and he is holding up the PEA COAT.

The other officer walks over and they both begin trying to read the notes that are attached to it while holding it up in the air like they might just catch something from it.

I begin to summon Mr. Drama from bed to get out here NOW. He is not happy that I am making him get up in such a hurry, especially after his last late night at the bar with Boris and Eric the previous evening but when I say HURRY UP as loud as one can say under your breath he comes out on the balcony.

When I point down he starts laughing and steps back so he can't be seen.

There are 2800 passengers on this ship and there is no way these officers can know we are responsible for this wayward Pea Coat but still I am feeling pangs of guilt as they are trying to figure out what it is and what happened to it.

Then with no ceremony at all .. they throw it away.

Poof .. just like that it's gone.

Had they no idea what source of entertainment that beat up Pea Coat could be ?

It was FABULOUS !