Thursday, June 30, 2011

Temporal Lobe Resection

It's day 2.
The last few days have been so emotional. We have cried so many tears.
I have never been so happy to hear a little boy say my name.

On Tuesday morning Bup went into surgery to have his right temporal lobe and hypocampus removed due to TSC tubers/tumors and their affect of seizures....that were not responding to meds. (Trileptal and Topomax)

5 hrs later, our little guy, was in recovery and we were still waiting to see him. Meeting him in PICU was the epitome of bittersweet. I cried and cried and could not talk to the doctors. I just wanted to crawl under all those wires and lines and hold him. Thank goodness my sweet husband was there as he had all the wits that escaped me!

We seem to tag team on that. When one of us is super emotional the other is calm and has it all together. Then later for whatever reason, the roles reverse. Thank heavens!

Bup is a star! Within hours of surgery, with eyes still closed, one swollen shut, he is eating popsicles, drinking apple juice and quietly telling his auntie that she cannot eat his popsicle!

His first night in PICU, he woke up and requested to watch Dora!
This kid is amazing!!!

Today the pain meds have been decreased dramatically and tomorrow we are hoping to take the bandages off....scary! Move his lines so that he can have a bath and get out of bed a little bit.

It's been a crazy two days. I cannot believe we are here. In some ways it is so surreal. In other ways it feels like it's been forever, not 2 days. In fact Rhett asked if this is our home. Poor buddy.

Right this very moment....we are all calm and okay. But that is subject to the weather here in Calgary....every 5 minutes!

Monday, June 27, 2011

Surgery Eve

It's after midnight here. B and I are still awake.
R is sleeping peacefully in his cozy little bottom bunk.
W is sleeping peacefully in this cozy little bottom bunk, camping in BC with dear friends; chosen family.

It's the eve of neurosurgery to removed R's right side Temporal Lobe. Definitely not the same kind of eve has we sit up late and organize ourselves for Santa's arrival.

This is much more stressful. No presents to wrap.

This is a night of trying to ignore what tomorrow will bring. Wishing we could sleep tomorrow away. Praying R will come out on the healing side. Stronger, chattier, with this amazing memory and no TL Seizures.

Pray with us won't you?
We need every line to the big guy upstairs that we can get.
Thank you.

Tuesday, June 21, 2011

Medication Station

Oh the clutter of meds! It's enough to drive one around the bend.
I know my friend, Trevy's mommy, agrees.
It's inevitable in homes like ours though.
Bup is on a little seizure cocktail of Trileptal and Topamax and Vitamin B6...when I give it to him.
W on the other hand has a plethora of homeopathic remedies such as Grips, Engystol, a detox kit from Heele, Euphorbium, etc, etc.

I've tried containing these in a basket in the cupboard, but that cupboard runneth over and that maketh me mad! It's annoying to open a door and have things fall out. It's annoying to take one out and others fall too. It's simply annoying.

Plus they often don't seem to make it back into the cupboard/basket and sit on the counter as they are used several times a day.

So, one day while junking/antiquing/thrift browsing, I found a vintage-ish bread box. I love it! Originally I bought with the idea of turning it into a media station for phones, IPODS, etc cause I hate them on the counter too. But the meds were more pressing, so here it is housing all our daily meds.
Notice the Tranquil Motherhood book...a gift from my MIL who knows I need tranquil moments....and the sign above the med box about a vodka valium latte?! No further explanation needed.

What's your remedy? Do you chart whether meds have been given? Or do you go by memory and trust that you're the main med-giver so all is taken care of?

Would love to hear your ideas/solutions!

A Blood-y Donation Disappointment

With R's upcoming neurosurgery, it was determined that I am a blood match to him. So, in the event that a transfusion is required, I signed up for directed donation. Anyone who knows me well, knows that blood draws are not my thing. It freaks me out. Not because of the needle or blood, but because it usually takes several tries before a vein is found and then it's out of the back of my hand.To prepare, I drank copious amounts of liquids and took Fluoridix to up my hemoglobin levels as they were low, 118 (sb 125). I felt pregnant again I had to pee so often! But my hemoglobin was at 131. Score!

So, with an emotional and scared heart off I went bright and early Monday morning to Canadian Blood Services for my appointment.

Wouldn't you know they were being audited that day? The audit team asked if they could follow me through the processes of donating. I shrugged my shoulders and said Sure, but when they heard this was a directed donation for my son's brain surgery...well, they changed their minds. Which is a good thing as I was a wreck.

Preparing to donate, just made this surgery all so real.

I was crying in the waiting area. Crying! Almost 40 & crying over donating blood! The poor staff! Each time someone would ask "How are you today?", I would respond with "Emotional and scared and I'll probably cry." And often the tears would start.

Dennis was my phlebotomist and he is a superstar! He hit a vein on the second try with that giant 16 gage needle. Plus, he was so kind and supportive of me crying in the recliner. Told me to go ahead and have a good cry. That R and I both are in good hands, but to let it all out.
I laughed & commented that hear I am crying to the guy who has two full sleeves of tattoos! Dennis told me he's also diabetic so used to needles. Boohoo to me!

My own personal support system at CBS. The elder gentleman next to me, who has donated 180 times!!!, told me to look at him, not my arm, and kept reassuring me that I would be okay. When he left, he tweaked my big toe as he walked by and wished me luck.

Then the 80yr old volunteers in the cafeteria section served me and took care of me to no end.

Plus, a lady in the elevator made a point of telling me she overheard about my son and wished us luck.

The people at CBS were all so incredibly kind!! To this teary, crying, wimpy lady.

Oh, by the way, my vein rolled and the blood flow stopped. So, I was only able to donate 1/4 of a unit. I was so upset. I wanted to do this for R...just in case...and was unable to do so. They should have taken blood out of my foot. Bet those are good veins.

So, here's hoping that R will not need a transfusion. Yes, the blood-bank blood is just as safe as my own, but still, I hope he doesn't need one.

Cardiology Superstar

Bup was a star Cardi patient today.
No tears!!!
That's a first!

Of course, we have no results yet either. That will be a couple of weeks, I'm sure.

Tomorrow...MRI & Interictal Spect & bloodwork. However, I convinced all parties involved that the bloodwork could be done while he is under anesthesia. The less trauma the better, I say. all worked out. I'm pleasantly surprised. Yay!

Sunday, June 19, 2011

Bup's Bath

Sweet little cutie!
I just couldn't resist posting a pic or two of Bup at bath time tonight. He was just so squishable and funny.
There's a video to share of Bup singing away...but for some reason I can't get it to load here. Hopefully I'll be able to share it soon.

Saturday, June 18, 2011

W's (early) Birthday Party

(Craft paper on table with crayons & a few birthday wishes. One girlie commented "This is a great activity!")

Normally, at our home, birthday's are celebrated on the actual date. However this year, we celebrated W's 6th bday this weekend, with his school friends. This little group has done so well together over the year and it's sad that they are all parting ways next week. So, in order for W to have one last hurrah with his buddies, we celebrated his birthday today.
(The happy bday boy with his cupcake-cake!)
The Fire station theme was a hit! We toured our local fire station and the staff there were fantastic. The kiddos loved being able to sit in the trucks, hold the hose, lay on the stretcher, etc, etc. Well worth the effort! So cute to see these little ones enthralled with all the fireman and equipment!
(Did I take pictures at the station? No! That would make too much sense. In fact I didn't even take my camera along! And as you can tell used my IPOD all day. Uh...charge the battery? Oops!)

Next it was home for a rockin' game of pin the hat on the dalmatian. Which I free-handed by the way...and I am NOT an artist. The kids loved it! They were cheering each other on and Bup was too cute trying to pin the hat to the cubby. I'm just thrilled that he participated!
After a hip swinging crazy frog, dance party..."Stop Drop and Roll" was meal time. W was so wanting to tear into his presents and eating was the last thing on his mind, yet he managed to eat a little, huff n puff on the candles& allow us to sing (wuhoo!!! this is a FIRST for our sound sensitive guy. Did I mention that he helped himself to ear plugs at the Fire Station?!)

Now, they are fast asleep, the house looks like a bomb went off, there is frosting in R's hair (how does THAT happen?), and I need to get at it!
(The birthday table AFTER lunch & cake...notice the eyeball? ~ Bomb, I say.)

Next time, I'm planning a birthday party with 8 kids all with special needs, please remind me to include another adult! I didn't lose anyone in the pond or at the fire station, was a little loud and crazy at times!

(BirthdayW & R in their ugly teeth...courtesy of the loot bags. Notice W's 6 shirt? Appliqued my moi. It's kind of a tradition now. I was too procrastination-ish to create an R one for Bup...ah well... )

Thursday, June 16, 2011

Seizure Sleep

Yesterday, as I was tucking R in for his nap; the songs were sung, his long lashes were resting on his cheek, breathing sweet, snuggly, peaceful...
...then R turns his head towards me and says,
"I have a wiggly hand Mom. I need Trileptal"
"You've already had your Trileptal Bup"
"I need more Trileptal."

Oh. Sunk my heart to witness that seizure right when he was falling asleep and have him request meds. This kid does not like his meds. "They tasteses awwwful!"

Also, knowing that this upcoming brain surgery will not have any effect on his "wiggly hand" seizures. Wrong side of the brain.

It's just never ending. This maybe disease, TSC.

Tuesday, June 14, 2011

Warrior Brothers

Okay, I'm one of THOSE moms who does not want her children playing with toy guns, pretending to fight, war, etc. TV viewing has been declined.

I have found it is inevitable.

They do it regardless of whether they have the weapons or not. Hockey sticks become shotguns. Trio blocks and lego build guns, missiles, and lazer beams.

Recently, I have given in .... a little. There are now light sabers and nerf swords in our house. They're fantasy right? So somewhat better than guns, but now there are two nerf guns as well....with rules. Am I justifying...maybe. No shooting each other, artwork, or parents.

Last week, the neighbor children engaged in a nerf war in the back alley and side street. W joined in and was THRILLED. I let him. Happily. I sat on the garbage box in the back alley while R rode his Hot Wheels bike and watched. It pleased me to see my son included and so, so so happy.

Am I crazy? Maybe.
Hypocritical...maybe that too.

But when you see the joy of a child who is included and making friends and the hilarity in one naked warrior brother, it's hard to resist.
There is no easy answer in this subject. I've discussed it with my sister and our psychologist many times...both tell me to let it go, set parameters and let my boys be one of the boys.
So, sometimes my boys are one of the boys and other times they have the crazy mother who blocks You Tube and YTV and keeps nerf guns on top of the fridge where they are handed out at a mother's discretion. Does it matter? Only time will tell....

Kindergarten Field Trip

Today I joined 8 rambunctious 5-6 yr olds at Kayben Farms. What a super place!
We petted lambs named Molly, cows named Daisy, fed horses, laughed at ducks waddling together, jumped on these massive pillow trampoline things, rode on gunny sacks down huge slides, rode pedal powered go-carts, ate, snacked, played and played.
All in the sunshine! Hal-A-lujah!!
There are already plans in my mind of returning with R and B in tow for a farm friendly family outing.

My heart swelled when W held hands with and comforted a little girl who was scared of the big slide. He also told her, "Remember N...I'm going to marry you?" as he stroked beneath her chin.
Ahhh....young, sweet love.

Watching these little ones together today...the boys vying to stay together, walking four in a row and all holding heart sunk a little knowing that in 8 days these friends will be separated as they all go their individual ways for summer and then grade 1 in the fall. *sigh* Especially, when all of these kiddos do not handle change well. I wish they could continue their school careers together. A strong little band of friends...supporting each other.
After a sunny day filled with mosquitoes, fun, laughter, animals and mud, it was time to return to school where every child and adult was happily depleted and tired.

Tonight, W didn't even make it through three songs at bed time. Ya gotta love utter exhaustion!

Saturday, June 11, 2011

Pre-Surgery Steps

The days until R's surgery are becoming fewer and fewer. 15 days left.
15 days to accomplish a growing list. Personal and medical. On the medical side there is....
  • Directed Donation - I am a blood donor match! Yay! So...I will be donating blood for R's use in case he is in need of a transfusion. Which means, for me, that I must really take care of myself between now and then. Take Vitamin C, drink copious amounts of water, ELIMINATE CAFFEINE as caffeine robs your blood of hemoglobin and if my hemoglobin is low (125 minimum) donation wouldn't be an option. My BP must also be in the normal range: note to self....lots of yoga, sleep, water, vitamin C, & laughter! Book donation appointment. Childcare for boys on this day. Do not faint Mrs. M! ~ In the past, I have been such a fainter when it comes to drawing blood as I'm wimpy and it comes out of my hand as my veins are so deep and little. Oh well! I'll warn the staff and take my time standing up.

(Source: Canadian Blood Services)
  • Cardiology - R is having a Cardi work up on the 21st. Echocardiogram and ultrasound. He comments that he is out of breath when playing hard...running around...etc and he does have those pesky tiny rhabdomyomas between the chambers in his heart's time to check them out again.

  • MRI & Interictal Spect - on the 22nd R will be anesthetized to undergo a MRI of the brain and Interictal Spect. These are needed to determine further information about the tubers which are bilaterally located throughout R's brain. This will give the Docs much needed information about placement and size of tubers as well as the pathways between the brain. How is the Spect different from the MRI? Well, I'm no neurologist, but from what little I have learned, the Interictal SPECT is conducted when R is NOT seizing & is used to pinpoint or localize the area of seizures for pre-surgery planning. A radioactive agent is injected into R and then a scan is completed. This shows cerebral blood flow which is affected by seizures; decreases when not seizing.

(Source: UofCMedical)

And that's all the medical appointments...I think...until the 28th, Surgery Date. Of course, we have a personal list to accomplish as well for getting organized, finishing pre-school, kindergarten, etc, etc, and that's a whole other post.

Keep our little family in your prayers and thoughts, okay?
We are really wanting positive thoughts. This surgery is something we have to do for R. For his future. I want with all my heart for R to get through this as seamlessly as possible. Peacefully with minimal fear. In a healthy manner with a WOW recovery. Shocking us as to how resilient and strong he is. Blowing our minds as to what a difference we see in R developmentally post surgery. B & I must stay strong, positive, and loving in all aspects. It's a scary road. We have shed our share of tears over this and will shed more. We know that. However, we are trying to see the light and let the fear go. We need your help please. Send those positive vibes, thoughts, and prayers our way!

Friday, June 10, 2011

Hello Weekend....

Are you ready for the weekend?
Me too!

It has started off fabulously with a sleep in until 7amish by the kiddos and a lovely visit from an out of town friend. We hosted four little boys between the ages of 9yrs & 4yrs. It was SUPER!
There was NO fighting. NO refereeing. Just happy boys playing hide and seek.

Hide and Seek...R is not much of a hider. My friend and I watched him crouch behind a chair, still and quiet as can be....but the chair was open to the room and everyone could see him. It still makes me smile!

As I write this, I am on the couch with a diet coke, one boy quietly playing lego, one in school and one sleeping. There is an extra in our midst today and it actually makes things easier.

We have NO plans this weekend other than a birthday party tonight and I'm loving

Cause guess what's on this weekend? And I think I may just check it out...a nice stroll in the morning sunshine....

Millarville Market! It's that time of year. There's something soothing about strolling outside for vegetables, flowers, etc. Including the drive towards the foothills of our striking Rockies.
(Source: Millarville Ag Society website)

Next, is the much anticipated Vintage Chicks Sale & Show. I love me a little antiques and vintage style. These fun canisters are nestled on our kitchen counter now and the sweet owner of Wow & Then, who is one of the Vintage Chicks, delivered these to me in person. We met in a DQ parking was quite a shady deal! :)

(Source Wow & Then)

What plans are on your calendar this first weekend in June? Camping? Biking? Gardening? Sleep? Whatever it is, may it be peaceful and fun.

Wednesday, June 8, 2011

Ice Cream Bliss

One of the saddest sacrifices of living a dairy free life is....Ice Cream! Oh, the cold, creamy delishy goodness is missed at our house.
Yes, I have been known to make "Ice Cream" from cashews and coconut milk and it's a yummy second. It is.

But now. Now, we have Coconut Bliss! Can you hear the angels singing? They're singing Elvis songs...and wearing hula skirts. Mmmm...Coconut Bliss.

The price point is ridiculous. What healthy choice isn't though? Tell me. Oh. Dandelion greens cause they're free and everywhere in this no spray city. Oh wait, that's another topic totally unrelated to my dark chocolate bliss.

If you're in need of a treat and near a store where you can release your innner hippy, let the moths out of your wallet and try a little tub of this gem. You'll love it!

Gramps' Day

The boys were thrilled to have their grandfather share their school Father's Day celebration. The evening included a story read by the children using the smart board and a craft. A craft! A bunch of boys and men crafting! I wish I could have been a fly on the wall! Unfortunately, mom's weren't allowed.
Our little men looked so smart in their ties. I throughly enjoy that they ask to wear a tie. So cute!

Of course, we'll have a real father's day when B the D comes home. Maybe a craft? Maybe a tie? Maybe Denny's for B? We shall see....

Star Wars Party

A little pre-school friend of R's hosted a Star Wars Birthday Party and it was so fun for R to attend. I have to admit I was thrilled that he was invited. His first birthday party invite from a school friend!

R dressed as Darth Vader....although I was not able to capture any Darth Vader shots. However, Princess Leah was in my view finder. Especially when I saw her and Darth Vader standing arm in arm for quite some time on the deck, chatting away, and Princess Leah even kissed one of those adorably fluffy cheeks! A-dorable! Thank goodness they are only 4yrs!

The dads were laughing inside because apparently every guy fantasizes about Princess Leah (personally I like Padame better...but I digress) and R won the girl...without even trying.

Friday, June 3, 2011

It's a Date!

(R's tumor to be removed is near the Amygdala & long as it doesn't cover the cortex, it will be removed)
June 28th!
Sounds like a good day for a temporal lobe resection.
It's also the birthday of a sweet friend from my home town, so that's a good omen right?

We are in a slight case of shock because the date has come so quickly. It seems fast to us. Yesterday felt like a bucket of ice water being thrown in our faces. This whole neuro surgery business is all too real now.

However, I must say I ASKED for this. Seriously, God or One Power or whatever you call it, was listening and answered my spoken prayer because two days ago I voice that I was going to request a surgery date for the first week of July because I wanted the summer for R to heal and not to have R in the throws of surgery the same week as W starts Grade 1.

And now look what happened! HE listened. HE answered.
So, I need to "suck it up Princess" and get on with it!

Organize care for W.
Prepare both boys for surgery. How do you prepare a 4yr old to have his brain cut into?
Prepare ourselves.
More appointments. Cardiology is next. Then the MRI and Interictal Spect.

Let's be honest here. I am freaked out. Completely and utterly. I am negative and feeling as if the glass is half empty. My husband, sweet soul that he is, is my support. The voice of reason, common sense, etc. I need to emulate him. And will try. For the sanity of all involved!