New Neuro Doc - TSC Update

You heard it here....we have a new Neurologist!

Woot! Woot!

In October our Dr. Neuro...who was with us since day 1 of this seizure world...moved out of province. Of all the nerve! We're set up again though with a kind Dr. Neuro. Even better than I had imagined. Which isn't hard...because I tend to imagine all sorts of difficult scenarios when on our way to Dr's appts. That's just my way. Imagine the worst and be pleasantly surprised when it doesn't happen. Kinda like customer service, under promise and over deliver!

The new Doc Neuro was open to my concerns and questions. He asked what I wanted from him! I didn't have to push for anything as he listened and heard my concerns. Can you hear the angels singing? I could almost see them hovering!

Bup is less than enthused with Drs touching him...even speaking to him, yet R was friendly to Doc Neuro. Maybe it was the kind bedside manner. Just regular kid stuff that pediatric specialists should always follow...letting R use his stethoscope and such. There was not one tear shed by R throughout the whole appointment. That is a miracle!

So, what's the scoop?

Farewell Keppra! We HATE Keppra. It changes behavior and personality. No more intense, inconsolable tantrums. Gone will be struggling to get R to take the bitter, bitter pills.

Small increase in Trileptal. He's now at the top of the scale.

Hopefully these med changes will control the seizures because if they don't....well...the Doc is not encouraging that other meds will work. %10 chance.

Seizures...we are seeing seizure activity on a fairly regular basis. Quiet seizures. Brief seizures. Hurtful seizures. The wiggly hand still appears.

However, there is a new seizure. Which I don't like to think about because it's possibly stemming from a different area of the brain. Temporal Lobe.

(image borrowed from one of my fav blogging friends)

Possibly. We won't know for sure until an EEG and MRI are done. So, we wait...wait for dates for the MRI and Long Stay Video EEG.

This new seizure is brief as well and if you don't know R, it would probably be missed. He stops and looks at me with this look of confusion. I ask if he's okay and he quietly says, "I am fine."

"Do you feel funny?"

"Yes. In here. In my heart." and R pats his chest.

I hold him for a few moments until he lifts his head and says, "I'm fine. I'm fine." Then off he goes.

Not R's typical complex partial or myoclonic and atonic seizures. Something new. Something no one wants to see or have R to experience.

So we wait and celebrate... NO KEPPRA!

The Birds & The Bees for 3s

"That's Mommy!" says Bup while looking at this picture that is posted in our office armoire.

"Yes, that's me and I have a baby in my tummy. (It's Warner...but I didn't tell R that!) And when you were in my tummy to grow and grow we went to the hospital and the doctor took you out of my tummy, then we had baby Bup."

Later that afternoon, Bup and I were driving home from a ketchup run to Planet Organic when we were discussing what our weekly schedule was this week. Which includes a trip to our new Neurologist at Children's Hospital. R loves to go to the "hopital" as he thinks it's a personal play place. You know, with elevators, play areas and a huge aquarium...what 3 yr old wouldn't love it?

Then from the back seat I hear,

"Mommy, when I was tiny you ate me and I grew in your tummy. Then you went to the hopital and the Dr. took me out."

Oh! The perception of a 3 yr old!

Did I correct him? Absolutely not!

Did I laugh out loud? You bet!

Motion Therapy

Our boy W is a high energy fella.

He needs an avenue to release this...or there he'll create one which can lead to all sorts of excitement. So, my favorite husband and I have been talking about how we need to lead a planned structured life at all times. We also feel he needs to have more activity based items/toys at home.

Well, did I strike the jackpot today! Kijiji and $15 brought this little baby to us! A stationary bike with learning video games. A good reward item and expend some energy too. Considering it's winter and ridiculously cold right now, this is perfect.

It hasn't been hooked up yet and W and R have been taking turns riding it all evening and there's been no climbing, jumping or sliding down the banister.

It's a hit!

Clutter Control

Clutter is in my blood, Sista. It is. My mother has cupboards filled with mugs. 6 shelves of mismatched coffee mugs and drinking glasses. She has three closets of clothes. Most of which she does not wear. She displays almost every pic she has been given. With all this she lives ALONE in a tiny bungalow. Did I mention that her pantry cupboards...ummm, there are 5 different official ones and others that just have food randomly placed within....could feed the village she lives in. As long as past due salad dressing wasn't a concern for her fellow villagers. Seriously. I am not making this up and it's the tip of the ice berg. So, there ya have it. Clutter is in my blood.

For the past month or so I have been working on decluttering our home. I have purged my closet and do so every time I do laundry now. Maybe I should have only 7 everyday outfits. Wouldn't this cut down on laundry too?

There are now only 7 tea towels and dish clothes in their appointed kitchen drawer. One a day.

The sideboard has been purged and extras delivered to Good Will.

Same with the kids craft cupboard, yet it is still too full!

Too small children's clothes have been shared with friends and Good Will.

Kids toys have been sold, given away and 3 bags out of sight because no cute little creature would put them away! And you know what? They have not asked for them once. NOT. ONCE.

Even people. A person or two who feel toxic to me. That I don't receive warm-fuzzies from. This is extremely hard but necessary. A lot of tears, a lot of swearing and a lot of validation from others and this clutter control keeps on ticking.

Kijiji has been my friend in helping with the clutter control quest. Selling my clutter to add to some other poor saps clutter! No, not really. These castoffs will be another's treasure, right?

It's become a slight obsession, although by the state of my home one may think the opposite. It's still an unorganized mess!

Reading material is Life is Too Short to Fold Fitted Sheets, 10001 to Reduce Clutter, It's All Too Much, and so on. Now it's time to put all this knowledge into action so that's where Kijiji, Good Will, friends and family have come into play.

There's so much more to do and it's daunting. Oh! *sigh* I wish I could channel the Fly Lady. Or my sister in law. She is amazing. Their home is show home like, yet has a family's touch. Nothing extra and spotless. I need to hire her to come into my home and instruct me on what else can go.

What about you? Tidy, organized and habit following? What are your tried and true secrets?

Messy? Lived in? Clean? Too many goodies for your space?

How does your home environment make you feel?

Apparently, mine doesn't quite inspire me as I look to my right and see a folded basket of laundry that needs to be put away, a basket of the kids toys to find their way to Man's World, and a couple of dishes on the counter.

Tell me your deepest darkest clutter control secrets. I need help with this clutter gene!

Share the Love

Luvin' it! There's a thing or two on my radar these days. Maybe they'll inspire me to create something of my own. Or maybe I'll just continue drooling and dreaming. That's allowed too.

What's on your Luvin' List these days?

Silver baubles. Silpada. Love, love, looooove Silpada! This sweet hammered silver ring is a size 7. It's sparkly and wide and has no nickel in it. Perfection. However, it's too small for me. *sniff*sniff*

What size is your finger?

Cause I'm giving this one away! Just leave a comment or email me with a little info as to why you would love this ring! I'll draw and ship this beauty next Friday Jan 14th. A month before Valentine's. A treat for you!

Now, this is after a girlie-girls heart! If I worked out of the home I would be all over this! As it is, me stomping around the house, in stylin' heels and matching handbag, might be a little over the top. I realize the Fly Lady suggests a gal get dressed to her shoes every morning. Is this what she had in mind? Maybe I can justify a dazzling shoe or two!

Sheet Music. Vintage Books. This creation by Miss Mustard Seed is lovely. All her work is. There is a rectangular lamp in our living room with a plain ole shade that would be happy with a note or two modgepodged on. I think I may start searching for some sheet music.

I love that That's My Letter recovered these wing chairs with a drop cloth! Brilliant. Hmmm...there's a drop cloth in my basement right now. What shall I use it for? Wait a minute! I have 2 boys 5 yrs and under...there shall be no linenesque furniture in this house!

I'm Yours burlap banner by Craftomaniac. Except I think I was dreaming about creating a namesake banner for each boy and hanging them in their rooms.

That's enough luvin' for today!

Meds & a Stubborn 3 yr Old

Medicines are a part of our daily routine. Homeopathic as well as traditional medicines. It's a given that each morning and evening I or my FH am opening the red tin Med Box to start preparing "juices". We use a red "bread box" to hold all the concoctions our boys take. It's crazy the amount of product in there, but necessary.

Bup has thrown us a loop a time or two when it comes to his meds. As a toddler, he would take Trileptal from the syringe with a happy heart and sweet chubby cheeked grin.

Then a year or so later and that happy stage was over. So, we tricked him by mixing it in his bottle with either Rice Milk or Juice. Worked great for another 8 months or so.

Now...we're hooped. He has all the control and is making choices that are not good for his health. He can taste his meds in juice/milk and loudly professes,

"Yuck! This juice tasteses disgusting!"

I've tried hiding them in flavored applesauce and yogurt deserts and ice cream. The real stuff. Dairy even, with sugar, which we don't do, but I'm desperate right? No dice. Unless I keep the Keppra out. If it's just Trileptal, he'll take it. Keppra is bitter. Like chewing a handful of aspirins.

Giving the meds without a mix results in vomiting, not to ignore the amount of crying, screaming and struggling it takes to swallow the nasty culprits before they come back.

This is one more reason for me to hate Keppra! Not only does it change behavior and personality, it's a bitter pill to swallow... in more ways than one.

As a side note, we have been allowed to decrease the Keppra by 25mg and added 100 mg of Vitamin B twice daily to help with mood. It seems to be working! Woot! Woot! I'm still determined to get rid of Keppra all together, but in the mean time, how do I convince R he needs to take it?

Also, we FINALLY have an appt this month with a Neurologist. Ours moved to Nova Scotia in October so we have been without a Doc. Bup needs a full work up and testing as it has been over a year. He's grown leaps and bounds since then, plus we are seeing seizure activity that needs to be addressed and this is not just due to the med struggle. We have been seeing breakthrough seizures on and off for some time and have tried to tweak his meds with some success...but then those sneaky buggers/monsters seems to creep back in.

Any ideas?

Any tricks out there to convince young kiddos to take their meds?

I've heard about pharmacies creating gummy bear meds and need to research this further.

Shall I try crushing and mixing into a paste with Tang crystals? Desperate times...desperate measures!

Here I leave you with a stolen shot of a fevered R crashed on the couch this week on Fever Day. 12 hrs of fever. R slept ALL DAY on the couch. (Snuggled up in his dad's childhood camping blanket.) No other symptoms. Once the fever broke he bounced right back.

Talkin' Tuesday

Talking about Health Benefits today.

Now before my American friends and rellies, give me trouble here, I know we in Canada have it really good in regards to health care...in some respects. Health care for all right? And no monthly premiums! (Which I, by the way, think is bloody ridiculous that there are no premiums. No wonder everything is at a deficit! Anyway....) As you all know, this just covers "regular" health care, like doctors visits, and staying in the hospital. That's about it. Prescriptions, alternative health such as physio, naturopath, chiropractic, ambulance trips, dental and vision care are all at an added cost to the individual/family.

We are in the market for a new extended health and dental supplier because my favorite husband recently changed employment positions. So, Beny shopping it is.

Mark that up as frustrating too. Benefits and their suppliers are not new to me as in a previous life, BC (before children), my career was in HR which include benefit management. I know the game. The game keeps changing and getting more ridiculous.

The most frustrating one I heard today is that a supplier that we just left their group plan in the great west out here, and wanted to sign up on an individual basis does NOT cover Pre-Existing Conditions.

Uh...Pre-Existing...like TSC 's requirement of anti-seizure meds.

Gaargh!

What.

Is.

The.

Point.

So, our 3 yr old is being penalized because he was born with a condition.

Well, La -T - Fricken - Da!

Good lord, imagine if we were traditional medicating for W. We know those wouldn't be covered on an individual plan, but as a group/employer, no problem.

This just burns me! I get it. From the insurance providers standpoint. It's all business. All about money.

I also found one provider that only insures up to $1500 per yr in meds. That's their "premiere" plan. What a joke! We spend that in two months.

And I won't even start about the lack of coverage for alternative health. That's a whole other post.

A little Talkin' Tuesday rant. Hopefully tomorrow, I'll have more answers, and a prosperous provider who will accept a little 3 yr old that has no choice but to take nasty anti-seizure meds twice a day.

Knitting Invitation

Need a new hobby for 2011?
Or to hone lost skills?

Join my friend, master knitter, Karen at McKenzie Towne Hall on Wed evenings. She is instructing a knitting class that will set your sticks on fire!

Any level of knitter is welcome and will be successful. There promises to be lots of laughing and yarn about.

For more information go here.

Meals on Monday

Meal Planning.

Planning in general. I am not good at planning. I am a fly by the seat of my pants kinda gal and it gets me into trouble and stressed all the time. Stressed because I'm often behind...only minutes to get us out the door, strongly encouraging the kids to hurry, wishing I was wearing my whistle and wondering what the heck I'm going to feed us. Can you relate?

Last year...for a few months...I had set a very easy meal plan into place to streamline the dinner process. Do you ever find yourself at 4pm wondering what you are going to make for dinner? I certainly do and hate every minute of that. So, our meal plan was:

Mashed Monday - "mashed meat balls", mashed potatoes, veggie side and salad.

Taco Tuesday

What is It Wednesday - left overs

Thursday - hmmm....this was always a bit of Russian Roulette

Fish Fridays - homemade oven fried fish (usually cod) and oven fries

This year will very similar although there are a few tweaks.

Mashed Monday

Taco Tuesday - vegetarian style using the 7 Secrets Cookbook

Wednesday - Beef & Walnut Stirfry from Tosca Reno's Clean Eating

Thursday - Sweet Potato Patties - Clean Eating again

Fish Friday - Fish & Chips again

Clean eating, GFCF, dye free, preservative free, sugar free and aspartame free. What's left? Lotsa good stuff. Just takes effort....PLANNING. (Ugh.) You can do it!

Also, alternating a vegetarian days as well. Which is easy for me however I am always looking for additional protein options for W. Any ideas?

Lunches...Breakfasts....there's gotta be some muffins in our future, maybe a strata and a crockpot meal that will be utilized for lunches. Chili...mmmmm.. Streamline. Hearty. Tasty.

Do you meal plan? Do you have easy favorites that you serve weekly? Is there a cookbook or website that is a standby for you?

New Year 2011

A New Year.

A new blog.

Sort of. You'll find rwb is much the same style, content and thoughts as 3isperfect. However, I wanted to change the address for several reasons. So, here it is: rwbandme! Makes sense anyway, considering that's who we are.

A New Year. What does this mean to you? Change? Fresh start? Exhaustion after the holidays? Vowing to never do THAT again? Resolutions?

New Year's Day is one of my all time favorite days as it begins with a special breakfast shared with my New Year's Baby of a Sister. She is not my baby sister, but my 9.5 yrs older sister who happens to be a New Year's Baby of years gone by. It is our tradition to have a birthday breakfast date and we have started each calendar year this way for years and years. Ideally it is just the two of us and we are consuming gluttonous amounts of food, sprinkled with conversation and laughter. Some years this included a child or two in a bucket car seat or high chair. Thankfully, we can be completely selfish and go on our own. This year was no different and we gorged on delicious seafood and salad and sweets at a local hotel. Yes this is breakfast! However, we chatted and lost track of time only to find it was 2pm when we finally left our table. We even saw a staff shift change! Which is nothing compared to the years when we have been asked to leave...kindly...because there was a line up and our table was required for other hungry patrons. I kid you not. On more than one occasion in fact.

Resolutions. Yay or nay?

Nay for moi.

Plans...yes. Resolutions...no.

And weight loss is not one of them! Not that it isn't on my radar, but it always is a fleeting thought so why make it a resolution per say.

My plans include getting organized. I am so frustrated with not being able to find things, the house being a disaster zone, and too much stuff. I started decluttering by "Kijijiing" in Dec as well as delivering items to Good Will and every time I do laundry (which is not often enough) I pull things from my closet to give away.

Projects....there are many projects in my mind that I would like to complete. Such as this. And knitting. And a Visual Schedule of our household. And writing. And Photography.

Photography...a priority to be made. Even if it means taking a day to go on a photo walk. Now HOW I'm going to make this happen with R & W about? Not sure...but it's a worth a try right?

Honesty and Advocacy....always on the forefront with the family that I have been blessed with. It's bound to stay a priority for years to come. So be prepared to read posts in this area.

So, this is the beginning of my plans.

Hopefully you'll see some interesting changes to this blog in the weeks to come. Certain topics on particular days. Better photos. Continuity. Humor. This blog is personal to me. Private? It's a BLOG, yes, but that doesn't negate the personal nature, private thoughts at times. It's an outlet. And hopefully, for you it's informative and entertaining. As always, I welcome your comments and look forward to them. Keep them coming!

Here we go 2011. Bring it on!