TSC Tuesday - Rapamycin Quest

The quest for Rapamycin continues.......and now I laugh;  laugh in the face of our medical system, laugh at medical care for all........that does not include topical meds.

I shall laugh like a maniac so that I truly do not lose my mind. Right Bup? 

Mwuhahahaha! 

There is a pharmacy in Canada that will fill this prescription. Granted it is three provinces away in Ontario.

Muwhahaha!

The cost is approximately $900 per month give or take a $100. And is not covered by our insurance. But then I didn't really expect it to be since Bup's Trileptal isn't covered. These crazy elective meds! Trileptal, Rapamycin.........really! Let them eat cake! I liken gov't insurance programs to be akin to Marie Antoinette.

Mwuhahahaha!

I laugh and laugh in the face of all this ridiculousness....as I gather a deep breath and prepare to advocate and obtain this diamond dust.......feels like it!........without bankrupting our family. 

Excuse me......but I cannot write any further as I am laughing too maniacally and the screen is blurring from the tears. {{wink}}

I Like It.

What was I attempting to do today when I kind of, out loud, groaned and R asked me,
"Is it gone?"
ME: "What gone Bup?"
R: "Your mind."

LOL! Apparently when I growl at the children and tell them I am about to lose my mind....they listen to THAT.

Watching W rock out to Enrique's I Like It....
W: "Turn it up LOUD!"
... and Bup refusing to dance with him.

There's some funny moments with these boys of mine today so with that I leave you with this....

Wakey, Wakey!!

Sleep is a pain in the butt at our house these days!

W cannot get to sleep. Last night it was almost 1am.....and he ended up in my bed.

R cannot sleep in. Today he slept in until 630am. Thank you!

I never want to get up! Which is why I want this alarm clock. 

BUT....$250!  "Gag-a-maggot!" [as my sister used to say]

I wonder....will it bring an ice cold diet coke to my bedside? I would pay $250 for that!!!

Bicycle Brakes & Tears

This afternoon is tear filled due to the bicycle brakes.
My tears.
W's brakes.

You're thinking....look ya big baby, why are you letting the kids ride their bikes in the winter?

Well, it's all about the ADHD....AGAIN!
 (Have I ever told you that I LOATHE adhd....due to some parts of it? I do. Grrr!)

ADHD is akin to having a Ferrari (brain) with bicycle brakes (impulse control).

So, yesterday W had the BEST day at school according to his teacher although he informed me it was awful because he got into trouble for playing with a shopping cart during lunch recess.

Gah!
What was a cart doing in the playground? And what little boy wouldn't play with it? And why did he have to sit on the bench for playing with it? Did you hurt anyone? No. Did you call people names? No. Then, why, why, why.
So, this mother sends a note to the teacher asking who she could talk to about it.....
only to find out that he LEFT the school grounds to get said cart.
Gahhh!!!
TODAY.
Upon pick up W again tells me it was the worst day ever because he was SENT TO THE OFFICE. For play slapping two friends in the face with his glove. "I wasn't trying to hurt them. I was trying to be funny and he did it to me the other day and he is a tattletale and all the teachers are wrong and this is the worst day ever."

Bicycle Brakes....with the lines cut!!!

Frick.

So....who's in tears?
Me.

What do I do to help this kid?
I'm ready to homeschool.
I'm ready to keep him home next week.
I'm ready to forgo my retreat and vow of silence (more on that later) and take him to my mom's for a week.
I'm ready to throw in the towel.
Where is the support?
Shouldn't the aide be working with him on social stuff? Social Stories?
Does he know the playground rules of not leaving? Is it discussed? Posted? What?

Yes... I know this is typical adhd stuff and we will come up against it again and again and again over his/our lifetime.

But what do I DO about it? How do I help him? His self esteem is already suffering. This morning he was saying he "I am stupid cause I always get in trouble." Heartbreaking....

So...until I figure that out....I'll just cry a little...or a lot....phone my husband and get him out of bed despite the fact that he is working night shifts and is on number 12 in a row....and then vent here.

Gahh!

ADHD Thursdays - Sleep Deprivation

The brain just does not shut off for some of these kiddos who are blessed with the gifts of ADHD. Creative thinking, plotting the next lego build, rehashing the day's events, worrying about becoming an adult, revisiting school situations in which it was required to sit on a bench and not play, and the pictures play on in W's mind as he lies in bed, wide awake, trying to sleep.

Snuggling with me, putting cold feet on my legs, listening to me read and read the latest Little House on the Prairie book, deciding he's hungry, and then falling asleep at some point after his mother has lost her last bit of patience. (Which by the way....helps NOTHING! And just adds to self esteem challenges and guilt...on both our parts!)

W's nights have been a bit of a challenge lately. Tucked in on time, read two stories, listened to his Adventures in Odyssey CD, and then.....then I heard the telltale sound of lego swishing through across the lego table.....and here we go again. Another meal, sleepytime tea...and as I write this, it's 11pm, and he's still up.

I curse the sleeplessness of ADHD.

Curses! Curses!

But oh how I would bless sleep. Beautiful sweet sleep.

Any ideas? Suggestions? Tried and true successes?

TSC Tuesday ~ Topical Rapamycin Where Art Thou?

Those pesky angiofibromas on Bup's fluffy cheeks are getting more pronounced all the time.
If he's hot, or sad or had a seizure they are really obvious. Right now they just look like little dots and no one realizes they are tumors.

Ignore the ketchup...but you can really see the angiofibromas in this pic.

Although one day....when he's a teen, they will look horrible. Angry red like deep cystic acne. As if life doesn't have enough challenges! And yes...I'm vain that way!

An example of angifibromas in a young teen.

There have been days when R has scratched them until they bleed. Scar tissue? No thank you, we're not interested in fostering that either.

In the very recent past, the only option for the angiofibromas has been laser surgery. Ever tried to get a 4yr old to sit still so someone can laser his face........which may feel like being snapped in the face with a rubber band?  Ever tried to sit through laser hair removal of ...well, any area? Super fun.

I. Want. Rapamycin!

We learned of Rapamycin through a TSC Teleconference last year.  Wuhoo! A topical ointment compound which eliminates the facial skin tumors while being used. They return after discontinued use.

You know what else I determined today? It's easier to secure brain surgery than a topical ointment to diminish angiofibromas. How's that for a kick in the tucas?!

Storybook Sunday...and a Pancake!

Today I had the pleasure of taking the boys to Storybook Theatre to see the Munsch Ado About Nothing production.
Who was more excited.....the momma or the kiddos? Toss up!
I loved that they were attending their first live theatre production! **( Maybe 'cause I enjoy live theatre...and miss it. Pre-children life I went often. Now not so much)**
Watching their faces light up and smile as they caught the play on words, or slap stick comedy....it was purely joyful for me. One of those fascinating mothering moments that one wishes would freeze in time.

Circus Boys!

Tiger W.

Bear Bup.

 ***************************************************************************

Sunday dinner. Growing up this was supposed to be something more than the average week night dinner. Roast beef probably. Maybe a late afternoon dinner.

 But here, in RWB world, we quite like to serve breakfast for dinner on Sunday's. Easy. Welcomed by all.
(My sister serves popcorn and a movie for dinner on Sunday nights. It's family night at their house and they ALWAYS have popcorn and a movie!)
Tonight, our island was graced with an Dutch Baby. Apple-oven pancake and bacon. Oh yeah....heart-attack in a frying pan. Mmmm,mmmm!
The pancake was delish and I wish there were left overs for breakfast. No leftovers? That's a good sign! So, I shall share this recipe with you.

Dutch Baby

Oven (apple) Pancake
Preheat oven to 400 degrees.
Place a cast iron frying pan or oven safe pan in the oven to heat.

Mix pancake batter. I used a GF pancake mix and added a TBSP of apple cider vinegar...the key to fluffy pancakes.

Peel and core two apples. Mix in dish with 2 -3 tsp cinnamon and 1/3 cup agave (or brown sugar or sweetener of choice).

Pour apple mixture onto bottom of hot frying pan and pour pancake batter on top.

Bake in oven for 17-20min.

Serve with sour cream, or maple syrup (that was us!) or nothing....it's THAT good!

Lego Mania

W...intent on creating. Notice the tongue out? That's major concentration!

This is a house of boys so guess what you can find on our floor...in any given room...at any given time....LEGO!

Somewhere I once read that the only toys you need for boys are lego, sting, tape and empty boxes. There is something to this!  However, I wish the lego would make it into an empty box.

I wish lego never dug it's way into the bottom of my feet.

Or was sucked up by a vacuum.
But if I was being honest about this....the vacuumed lego is just one more brick that I do not have to pick up. Yeah!

How many times I have reorganized the horde of lego in Man's World??
 It's never quite right though.
Sorted into canisters. That didn't work.
Regular lego on one side and Star Wars on the other. That didn't work.
 Just dump the whole load in the drawer and rifle through it. That's the ticket!

Two days past there was a mini-melt down and detailed search for a small two block piece with a speciality end. It was not found. W was very frustrated and SAD. Sad. Tears. Sad. Sad. Sad.

Time to revamp.

Today I spent all afternoon...did you catch the ALL part?....sorting by color, people, vehicles, and speciality pieces. Using our current storage system, from IKEA purchased on Kijiji...holla!... to house said pieces. And tomorrow we're off to pick up a few more bins...cause W's floor is covered with the toys I dumped from the drawers needed for this new plan.

courtesy of All for the Boys.
Check out her blog. It's awesome!

Let me tell you, if these boys do not adhere to the new system???? Well, guess what the spare room is going to be? And don't even try to walk on the floor!

ADHD Thursday

One of the many challenges with ADHD is keeping these bright kiddos interested in learning. Couple that with a challenge in focus and staying on task and well....our work is cut out for us.

It's half way through year one of 12+ years of schooling and our W is already "BORED".
Ugh...b-o-r-e-d.

The Home Reading books are read with distaste and the "blah-blah-blah" attitude.  Now if I gave him a book on war or zombies or something else gross and morbid he would be all over it. But to find one that is age appropriate and at his reading level???? Not. Happening.

Any ideas? How to re-motivate this kid?

******************************************************************************

......and here's a little video of the boys getting ready for bed. Excuse Bup's cute bouncy tush!

TSC Tuesday - Planning for Kindergarten

Kindergarten registration already!  What to do, what to do?

I am not ready for Kinder in a big school. I am not ready for R to be 5yrs. It's all about me....right???

Considering that we just secured PUF for Bup and where he's at emotionally in regards to school, let alone the need for assistance and therapies.....well, I'm just not convinced a regular kindergarten in the public system is the place to go. Plus the public school system would use his funding as they see fit, not necessarily as it's intended.

Thank goodness I had a brain wave!  And no it didn't hurt!

What about another year in pre-school, 4 1/2 days a week, able to utilize the therapists, SNA and home visits?
That's the ticket!
Even better was that I didn't have to plead my case with I'm 4 Kids and the pre-school. They were in complete agreement!

Does this mean that Bup will be enrolled in kindergarten when he's 6yrs? Nope. It means we bypass it all together as it's not mandatory here. Another year of close one-one instruction and therapies should do the trick and prepare R for a "big school" environment.

WIWW Plus Size Canadian Edition

There is no way I am documenting with 'film" what I wore this Wednesday.
Because it's simply ARCTIC here. -30 C



Annnnnndddd....we are having a home day.




AKA....uncombed hair, and pj's. All three of us.


How about What I DIDN'T Wear Wednesday? I didn't wear this outfit, but would enjoy doing so....one day! {{wink}}

image from Pinterest

Baby, It's C-c-cold Outside!

-29 degrees Celsius.
That's -20.2 F for all you non-metric readers.
Regardless...it's BRRRRR!
And only getting colder.
Hello Winter! Where have you been and why did you arrive with such a vengeance? My children still don't believe you must zip your coat and wear your hat when leaving the house yet complain that their "knees are cold" in the vehicle. Yup! That's why you are wearing pyjama bottoms under your pants and still wearing snow pants too!
By the way, keep your tongue in and away from all things metal. Eeesh!
And...whose idea was it to enroll in January swimming lessons? Thank heavens the boys fit under the hand dryers in the change room to get a little warmer...a little dryer before heading into the crisp outdoors.
This weather gives Manic Monday a whole new meaning!

Project Dreams

Sometimes I am a thinker...not a doer.
Which I'm sure drives my husband bonkers...and was inherited from my father. I'm sure of it!

There are projects rattling around my mind. Projects I dream about seeing completed and on display in our home. Dream does not equal do.

Do you do this? Dream and plan...and that's it? If NOT, how do you get up the energy, "gumption" (as my father would say).

Here's my top eight:

Frame our Masterbath Mirror...in white.

Wear super shoes...everyday!

Still dreaming about those fireplace built ins....

Would love to pierce my nose again. But yowza!

Dress super cute...all the time. Well, and have the body to do so...but that would REALLY require effort!

Batch cook...again.

Create a wool patchwork blanket from my grandmother's wool  blankets.,

Pantry Door from Pinterest
The challenge is that our door is small and would need to be a custom fit.

All photos courtesy of Pinterest.

So...what's on your dream project list?

ADHD Thursday

Our 6yr old son was diagnosed at the age of 3 with "severe ADHD". Over the past 3 yrs we have Incorporated many dietary changes, behavioral strategies and the like to help W. Through all these "experiments" (cause really...it is always a trial & error strategy), my heart goes out to W....even when I have felt frustrated and at my wits end.

Yesterday was no exception. In regards to my heart going out to W.

School was a challenge for W yesterday. He was just full of life....the hyperactivity and silliness was taking over....so it was hard to stay focused, sit still and not goof around in class.

This resulted in some time in the Break Out Room and even the hallway and heavy jobs, carrying,  in an attempt to slow his engine down. During the job or task, he was fine and could complete it....but as soon as it was over...well, the goofiness, distracting others, being silly, etc surfaced strong and fast.

The saddest part of all this. W DOESN'T like being this way. He knows when his engine is fast and can't get it to slow down to Just Right.

Because I was volunteering in the classroom I was able to witness some of this and talk quietly & privately to W about working hard to slow his engine down, that it's not his fault...his body just takes over, and that he can do it and have a good afternoon at school.

And he tries! He chooses to stay at his desk when the others are in Circle Time because he knows he can manage better at his desk. He tries to self regulate but that hated hyperactivity takes over.

Did my heart stretch and throb when he asked to come home with me? Requesting to NOT stay at school even if it meant missing a cool outdoor Science Experiment and afternoon art project.

Yes!

Did I feel like the meanest mom ever when I advised he must stay at school because at home meant nap time? Only to see his sad little face fall even further?

Yes!!!

Did he stay and have a successful afternoon?

Yes!

W in August. Photo by Blue Lilly.

Do I absolutely LOATHE hyperactivity?

Yes!!!

What would you have done? Do you have any "new" strategies for hyperactivity?

What I Wore Wednesday ~ Plus Size!

WIWW is a popular blog topic  in the blogosphere.  Have you seen it before?

I'm always interested to see what style people portray and how they put it together. However it also frustrates me that there is a small representation of "plus size" ladies. Most WIWW gals are slim and trim and I am oh so jealous! {{wink!}}

Sooooo.....rather than be frustrated, I am going to join the masses. Sort of. To start with I will only blog about WIWWednesday....not everyday of the week. Frankly, I'm just not that organized or put together to show what I wear everyday. Having said that....I imagine you all would get a good laugh or gasp if you saw what crazy hair and outfits grace this girl more often than not!

Not only is this a shortened version, a Plus Size edition, but it's also a Canadian edition. Whoot! Whoot!

Please excuse today's photography skills....or lack thereof....as I seemed to have misplaced my camera card (ahem....little boys!) and used my IPOD which means crappy pic. Oh well, the jist is there!

WIWW Plus Size Edition!

Red beads - my fav beads - from Winners
Watch - Fossil...purchased in Las Vegas last winter
Polka dot top, white tank, and skinny, stretchy jeans - all from Penningtons
Love the flowy, chiffon-ish polka dot top. So comfy.
Volunteer Day in W's Grade 1 classroom.

Here's a little Linky-Love that I've linked up to. Feel free to peruse their blogs for more stylin' attire.

I'm linking up with the Pleated Poppy!

I'm linking up with Momma Go Round

TSC Tuesday - Program Unit Funding

A New Year and a New Beginning in many ways!
This week R starts pre-school with Program Unit Funding, PUF, which is granted through Alberta Education. It took a few months, many hoops, and a tear or two on my part to get this in place.

Thank heavens for PUF Coordinators, the Director of I'm For Kids Team and the Preschool Director believing in Bup and our family!  The Director Ms.J literally spent all day on the phone, the week before Christmas, presenting Bup's case to the AB ED. Now, this is a Christmas present!

One would think that a Moderate Speech Delay, Moderate Fine Motor Delay and Severe Gross Motor Delay, a little brain surgery, the unknown future of TSC's effects, would be enough to grant PUF. Nope.....all this and it still took additional letters from the behavioral Pediatrician and an all day phone call.

What is PUF you ask? For those of you who are not familiar. This funding is granted until the age of 6yrs and is all about early intervention for children with delays and disabilities.  For R, it means he will have a Special Needs Assistant in the classroom with him and the SNA will also be in our home on the days Bup does not have scheduled class, for the same amount of hours as his class time. He also receives Occupational Therapy, Speech Therapy, and Physio Therapy. His parents...c'est moi!... receive Family Oriented Programming. FOPS. Topics range from here to there....anything that is education or behavioral related to assist us with caring for R and helping him to excel in the classroom.

As I explain this there is a slight anxiety in my heart.....about introducing yet another team of people to R. Change is hard for anyone, especially Bup.  Plus, there's the scheduled life we will now lead. HAVING to be home on non-school days for therapy time with the SNA.  Invaluable time...but now, not "my time".  {{sheepish smile}}

So, there ya have it. More than just 2012 for us. It's a PUF New Year!

Breakfast Ice Cream

....or in our case, for dinner tonight!

W is increasingly fussy about fruit. It cannot have a spot or softness in the tiniest form at all or he refuses to eat it. Lately, it seems as if apple slices and raspberries are the only fruits he enjoys, so here's a sneaky way to increase his fruit intake.

Yum!

To Tell or Not to Tell....That Is Thy Question.

Opinions please....

Those who are close to us know all about R's Tuberous Sclerosis diagnosis and struggles. The seizures, the surgery, the meds, the speech, fine motor and gross motor delays and all that comes with TSC.

Most are understanding, sympathetic and encouraging.

The question is do I explain and tell others? IE: gymnastics coaches.

 I don't know why I'm hesitating to do so.

But I feel I need to...yet don't want to. I want the coaches and others to see how great he is doing....to realize he has anxiety and needs extra encouragement...that when he hangs back and doesn't join in, he's scared and needs help....that the fact that he can do a somersault  and balance on a low beam is amazing.

That his funny baby calf let loose jumps on the trampoline is a big deal!

 That he just learned to stand on one foot and cross his fingers on one hand over the Christmas break and is SO PROUD! 

That he needs smaller, shorter, simpler directions.

B would tell. B the D...the awesome dad. HE keeps a pic of R from ICU, post surgery, and has been known to show it to people....like the PUF Intake Coordinator and R's coach last session. I don't have said pic on my phone. I keep it in.

Yet, part of me doesn't want to keep it in. I feel like I'm making a big deal of something....attention grabbing or something....I just don't know....

What do you think you would do if you were me?

Mixed Blessings

This little sweetie has stolen our hearts. Yes she has. Especially mine and Bup's. Bup tells people that he has a "special baby" and that "she's all mine." He loves to kiss her head and insert her "toque" ..... um, aka soother!.....when she's sad.

Happy girl....smiles for W.

Little Miss S is now almost three months old. She smiles and coos and chats and giggles. Sometimes she is so loud! It's hilarious. She loves to be snuggled and is completely at home in the sling. And now! Now she sleeps from 8pm - 4am straight through. Wuhoo!

Prayers have been answered as Miss S's momma is out of the hospital and doing really well. Amazing!  The time will come soon when Miss S gets to go home to her "real" family, her birth family. This extended family that loves her will be so sad (and THRILLED) to see her go home. The thought of packing up her clothes already makes me a little sad. Maybe that's why I'm avoiding it. And then there's R. He just loves her. This morning the first thing he said was "I just love Baby S. I want to see Baby S." ****sigh****I know he'll be fine, but it's sad for me that he won't see her so much anymore.

A complete mixed blessing. We are all so relieved and thrilled and in wonder that she is able to be with her family. Words don't even come close to expressing this.

Miss S...sleeping sweetie.

Yet, at the same time.....boo for us! She's such a doll and we'll miss her dearly when the happy day arrives.