Endoscopy

The most recent step in the journey towards weight loss surgery has been an Endoscopy. This is standard practice to ensure there are no problems with my stomach and gastro system. such as ulcers.

It was a relief to have the appointment booked as it indicates I am one step closer to receiving a surgery date. I'm hoping...hoping in a positive way....that I'll receive a call for a Sept surgery. There is nothing to base this on, just my own wishful thinking. This month is a year since I have begun the process. A year!

Now, you may not know that I have anxiety and panic attacks when it comes to having medical procedures completed. Once I walked out of a MRI when I found out it would include an injection into my hip socket.  Ugh.  I always think I am past this but then the panic lifts it's head and demands attention.

So, in the hospital for the Endoscopy, I thought I could handle it. After I silently cried on the drive and lectured myself and practiced breathing, there was a fragile state of calm. But then I made the mistake of letting a student nurse attempt to start an IV. My veins aren't cooperative at the best of times and under stress its always harder to draw blood. Of course, the Student Nurse, made mistakes with the |IV and it had to be redone.

Imagine feeling faint, the room turning black, intense nausea, and a sweet nurse who understood. It's amazing what a cold wet cloth and laying down will do for the psyche!

Still more amazing is to go in for a procedure and wake up back on the unit with no recollection of the process, just the initial insertion of the mouth guard. That is my kind of Endoscopy!

Waking up isn't pretty! LOL

I was pleased to find pictures of my stomach and gastro-intestinal system waiting on the bedside table. Seriously. To have a printed copy of the pictures and results readily available immediately is wonderful.

And so now, I wait again.

Sunschooling

Oh, the glorious warm sun warmed us today, Melted some snow. Coaxed us outdoors and allowed us to ignore traditional school room schooling.

There were Knights by the medieval log pile. The sound of "swords" cracking at they hit one another.

Our muppet dog bouncing and leaping through the snow like a little lamb.

The sound of the electric sander  buzzing from the barn as a treasure chest is made.


Nails being hammered into logs in order to make a ladder. For Rhettlandia, I think.

Spirals made in the snow and filled with bird seed for our forest friends.

The odd snowball thrown and missing it's target. I need more practice!

Attitudes were warmed and initiative and creativity grew.

Some days the work books need to be forgotten and the sunshine, melting snow and forest embraced.

Surgery Prep Class

Surgery Prep class was a 2 hr Saturday morning spent listening to a RN and Dietitian explaining what is to come pre-surgery, surgery day and the first few weeks after bariatric surgery.  It was definitely interesting and enlightening. Thankfully, there were no huge surprises as I have been reading and attending other classes.


I am still in waiting mode and have not received a surgery date yet. The earliest would be May and the latest December.  Hopefully sooner rather than later, so that this journey can continue forward.

One piece of instructional information that I took away, which annoyed me, is the every reaching presence of big pharma. Prior to surgery a 3-8 week liquid diet will be necessary to shrink that fat around the liver, which is not news, However, the push of Nestle products is shocking, among other things. Ensure and Glucerna are the recommended liquid meal replacements. This goes against everything in my being as it is not real food. These products are a chemical storm of junk and offer no real nutrition. High protein meal replacements are the stressed by the dietitians, but Ensure Plus high protein is only 12-16 grams of protein. That's hardly high, Why not make our own? Or at least use a higher protein replacement such as Premier Protein which is grams per serving.

 Plus NESTLE People! Nestle is notorious for their unethical practices. Why would a program teaching good health support such a company? Ugh. I could really jump on my soap box here but it's redundant.

There was approximately 25 attendees of the Surgery Prep class and half of us have received a surgery date. Half were choosing the Sleeve and half Bypass. It was interesting to see those demographics. Of course, we all have our health reasons for these choices.

Currently, I am paying attention to what |I have learned so far and practicing these skills. It's so easy to slip into long used habits. Always a focused effort to make specific choices in all aspects; Mindful eating. balanced meals. food journalling, sipping water, etc, etc.

So my journey continues.

Blood Testing Requirements

Today brought yet another doctor's appointment in regards to this bariatric journey. Thankfully it was just a brief meeting with my family doc to request lab reqs for Vitamin D testing. Vitamin D is a healing helper so it's imperative that my levels are in a proper range before surgery. This will also hint at if there are any absorption or nutritional deficiencies. Obviously, malabsorption issues are a red flag prior to a bariatric surgery as after surgery people have a greater chance to develop nutritional deficiencies. Therefore starting off deficient will cause the surgeon to cancel the surgery.

In Canada, Vitamin D testing is on the lock down. ONLY by special request and for very specific reasons. Why? Purely cost. The test is expensive so Health Canada ( I presume) does not want doctors' requesting the test all willy nilly. Province to province has different rules. In BC family doctors cannot request Vitamin D, only specialists. Here in Alberta, there is a special requisition form and the reasons are very specific as to why a request can be made. In fact there are only four reasons. Malabsorbption is one of them.

I can provide a week by week account of the changes I am making and the hoops I am jumping through to make this happen. But, is that what you, the reader, wants? Those of you that are following along, feel free to contact me behind the scenes.

Soon I will be attending a class entitled Keeping the Change. Tips and tricks on maintaining healthy change. This class is an elective class offered by The Calgary Bariatric Clinic.

Bariatric Humour
My immediate family is aware of the upcoming surgery. I was a bit nervous about telling the children but they are handling it well and are funny.

 The youngest wants to attend the surgery so that he can watch because it'll be interesting. Ha!! Um, no, you may not, Son.  Plus, wouldn't he be disappointed that it's 6 small incisions not a huge hip to hip incision?!  "Can I at least be in the waiting room???!!!"

The other son is excited but thinks it'll be weird having a slimmer mom and it'll take time getting used to me.

Honestly, hearing and seeing their excitement inspired me to keep going and reaffirmed that this is the best decision for me.

Backyard Friends

Oh how I love the Grey's. Today brought two to our yard. Two!

Life in the woods brings sweet visitors to our yard. Well, some are sweet and some are sneaky & take over the feeder.  One day I may be found on the deck, using the slingshot to wing ice cubes at that sassy, aggressive squirrel. 😉

Sneaky Squirrel snacking at Halloween.

Again with the squirrel, I wish the wood pecker would chase him.

Ruffed grouse dating rituals.

Wee Doe looking for snacks.

Fluffy little Blue Jay resting after snacks.

Gastric Sleeve

Well, step two towards weight loss and health gain surgery was completed today.
I met with the surgeon for the first time and the outcome is signing the consent for surgery form. A commitment to Gastric Sleeve surgery. It's real now!

Even throughout  the classes and appointments it is only now that this decision is appearing very real.

How do I feel?

Scared! This a lifestyle change of drastic proportions however the results will be worth it. The actual surgery and preparation and healing is what scares me. Did I ever share that I panic over small procedures such as MRI's that require a dye injection into the joint? That I walked out of the appointment?!  Oh yeah, super strong here and yet I have committed to Gastric Sleeve surgery!

Excited? Yes!
Relieved? Yes!

Energy, good health, lower blood pressure, free of back pain, free of sleep apnea, a fun, energetic, younger mom, wife and friend?| Oh yes, I am looking forward to all of these things and more.

The next step is two GI tests to ensure that there are no upper GI issues. Then it's waiting for the phone call with a surgery date. Three to nine months is the proposed timeline. It's a long wait, but when one is in the middle, the time is actually passing quite quickly.

I'll continue to share updates on this journey to good health and smaller pants. As well as details of the process with hopes that my experiences will help others make choices towards good health.

Today I weighed in at 271.4 lbs. Yup. There ya have it. With a waist circumference of 43 in. Whoa. It's bizarre to see these numbers in print and know they belong to me.  My BP was 125/86. This is very high for me. So, you see that making drastic change is imperative to improving my health.

Can you imagine the courage it takes to be transparent and open on this topic? It's not easy, my friends and it so very easy to judge myself, so hopefully you will find it in your hearts to not judge.

Wild Child In The Forest School

A component of our home school this year includes two days per week at Wild Child In The Woods Forest School.  What a blessing!

Forest School days are the highlight for Rhett. He LOVES it! Even throughout our mountainy, winter weather, he is the kid that must be strongly encouraged to stay in the Art Shack for warmth. The snowy outdoors is where Rhett's heart and interests lay.

As a Forest Wildie, Rhett is learning in an environment that resonates with his core. Outdoors, hands on, climbing, hiking, exploring, testing and in a small group of multi-aged children.  Some of the topics Rhett has learned about are Jupiter Rocks, building & using small machines, local forest life, trees and plants,long term flood effects on the environment, tracking animals, and of course, social skills.

When your child tells you "Mom, this is heaven." upon pick-up, it is beyond obvious that he is in his educational element.

Sensory Seizures?

Recently Rhett was admitted to Alberta Children's Hospital for LTM VEEG, long term monitoring video EEG. He has been experiencing a new seizure since November, which presents only in his right hand and sometimes he can feel a sensation in his brain.  On December 27 his meds were increased but this has had no affect on the seizures. Since Christmas Day we have documented over 200 episodes. I use the Track It Seizure App on my iphone to document. It's not perfect but it's easier than keeping a notebook with me.

Enter LTM VEEG.

EEG Hook up. Calm and patient...such a  trooper!

28 leads later and he's ready for business.

24hr EEG in hospital. Rhett was a trooper. An EEG rock star! He barely complained, never scratched or dislodged any of the 28 electrodes, and was content. Of course, he wished to be home, was embarrassed of the way he looked with his "long pony tail", wished they weren't spying on him and wanted me with him at all times but he handled all this so well.  Rhett really is amazing when it comes to all the hospital procedures. I'm so proud of him.

Taking in the view before being confined to bed for 24 hrs.

Results? Nothing conclusive. Nothing that we wanted to hear. The seizures are not showing on the EEG. Remember an EEG captures surface electrical activity not deep activity.
Of course, the EEG did show frontal lobe spikes, more frequently on the left but definitely from both side of the frontal lobe. This activity is indicative of other TS tumors and  not related to the right hand issues.

Passing the time with a little "screen time" on the ipad. 

So now what?

According to the Neuro Doc, we are to not worry about this. It may be anxiety related. Carry on as we are, no med changes, and "don't worry about it".

**sigh** Easier said than done and not an appropriate outcome for me. How do you tell a child to ignore the sensations in his hand and brain? How are they not related to something deeper? How is this anxiety driven? I can see how it causes anxiety. How is a MEG & MRI not requested as a deeper look? How are Jacksonian Sensory Seizures not considered?

Many more questions have been created and no answers.  This is another hard part of Tuberous Sclerosis and Epilepsy. I want to know why and now what. I want more for Rhett not just a pat he's doing great for one with TSC. Yes, he is doing great, but can't there be more? Better? Greater?

And so today, our hospital hangover is easing, slowly, and I am struggling with bitterness and anger towards the indifference of Neuro. I'll get past this. I always do, but it has to be worked through and addressed otherwise it eats me up. Sharing and writing and questioning and researching is part of that process. So here I am sharing with all of you. Watching the squirrels chase the blue jays out the sun room window, the dog sleeping in his bed beside me, and listening to the boys watch a movie before we venture outdoors. Onwards and onwards.

Until next time....

Weightless Wednesday's....Bariatric Surgery

Oh, merely sitting down to write this makes my stomach sink and I can hardly believe I am publicizing my vulnerability.

Weight and health are two topics that affect me in many ways. I have tried every diet on the planet and have had some success with all of them, if I'm able to follow them for more than a day. However, maintaining those diets aren't possible. The diet business is a multi-billion dollar industry that wants us to fail. Keeps us coming back, right? Keeps us spending money.

Almost a year ago I began the process of exploring Bariatric Surgery. Here in Canada, there are many criteria to meet in order to be eligible for health care funded surgery. Weight must be at a level that causes health risks and places a person at a very high BMI. Upon referral to the Calgary Bariatric Clinic, a patient must commit through behavioral changes, attending classes, many meetings with a Nurse Case Manager, Dietician, Pyschologist, while following suggestions to care for one's health concerns, as well as food journalling. Only after meeting all these criteria is a meeting with the surgeon scheduled.

I am now at the meeting with the surgeon stage. Next week in fact.

So exciting!!!

So scary!!!

I honestly am so looking forward to the outcome, a month after bariatric surgery when I am losing weight and eating again and healing. Thoughts of actual surgery make me a bit queasy so I shall focus on afterwards: increased health, better mobility, higher energy, smaller clothes, no back pain, no sleep apnea, lower blood pressure, increased confidence, fitting into seats, and active, fun with my family.

Chronicling this journey will help me stay focused and hopefully support other's who are considering Bariatric Surgery.  We all deserve information and support. There has been enough shame and hiding for anyone who is deemed morbidly obese. So, I am blowing the doors open on my fears, heart and excitement. Putting myself out there with you.

Hygge

This winter Hygge resonates with me. The simple enjoyment of Winter. Less busyness. Embracing the cold and snow. Cozying in. Making the home inviting, and simple in these snowy, cold Winter months.

Hyyge (Hyu-gah) originates in Denmark. It refers to a mental state of cozy, togetherness in the heart of winter. Until now, the only Danish part of my life is Lego. 😊  Learning about Hygge does not come from my family heritage yet it truly resonates with me.

To slow down, cozy up, have less commitments, play more, snuggle more, read, wear warm, woolen clothes, drink hot, spicy beverages, have warm homemade soups or chili simmering on the stove, play board games and turn the TV off, enjoy a quiet start to the day in the sun-room, watching the brave, winter birds feast from the feeders and brave the sassy squirrel who never hibernates, enjoy a muppet-esque dog sleeping by my side, content boys, loud boys, hungry boys, my boys, watch the falling snow, light more candles, read books, write here.......all of this is what Hygge means to me.

Sleepy muppet-pup.

As the snow falls and the temperature remains low, I hope you find your state of togetherness and winter peace today.

xx

He's Doing Great....

....all things considered, for a boy with TS, for a boy with multiple bilateral brain tumors, etc, etc.

 Sadly, this is not enough for me and I want so much more for this boy.  Those "he's doing so well" words feel trite.

As we wait to see Dr. Neuro, Rhett is thrilled to pose for a selfie. LOL Um, not so much.

Yes, I am grateful. Yes, Rhett's health could be oh, so much worse. Yes, we are ever so lucky to have Rhett.

Yes, we want more for him. We want HOPE and encouragement.

After, 100+ "seizures" since Christmas Day (and more before which were not documented), we now wait for testing. VEEG (24 hr stay, video EEG) MRI,  levels, and mental health.  The Neurologist is not convinced that the sensations Rhett is having are seizures as they are focal and affecting one part of his body, not a whole side.  BUT something is going on. The brain sensations, the hand sensation, the memory challenges, the processing challenges ("You're confusing me!").  So, we wait for the chances to get answers.

I hate waiting. Don't you?

Hopefully the VEEG will take place within 3-4 weeks.
MRI? A year?

As expected, CBD Oil was not recommended by Neuro. For a few reasons. All reasons which seem to be based on the Big Pharma control factor.  Oh, Big Pharma, I have such a tolerance-hate attitude towards you.

On a secondary note, a new referral for Opthamology at ACH has been requested as it has been several years since Ophthalmology has seen Rhett. Recently, our family Optometrist expressed concern at the size of the tumor in Rhett's right eye. According to the pictures, Dr. B took two weeks ago, the tumor has grown dramatically. Opthamology usually has a three month wait. Hopefully, it's not longer.

After a 2hr appointment, "hospital cake" is well deserved.

So, there ya have it. Rhett continues to seize several times a day and we are waiting for  the phone calls to inform us on upcoming appointment times.

Natural Health Services

Are you interested in CBD Oil? Today we spent a few hours of our time at Natural Health Services with the intent to secure CBD oil for seizure control, anxiety, and attention.

The following is my experience and impression of the The Natural Health Services Clinic in Calgary. May this give you a small insight into the process to assist in your decisions.

The clinic is modern, clean, busy and has state of the art on line booking and medical information forms. I appreciate receiving text reminders of upcoming appointments, and the ability to complete forms on line.

Upon arrival, we signed in with the friendly, very patient receptionist and then it was a short wait before we saw the Doctor. I love a short wait!

The doctor was friendly, inclusive of my son and asked questions about his health and schooling directly to him (as well as me of course.) It is much appreciated that Dr. M spoke directly to Rhett, not over him or around him. So many health care professionals do this, talk of him as if he's not there, and it is unnecessary, to say the least. I digress...

Once a plan is agreed upon, we then moved on to the "store" where a "Bud Specialist" is to educate and help me choose a Licensed Provider. This is where the waiting took place for us! An hour at least before we were able to meet with staff. The boys were antsy but oh so patient in the scheme of things!

Now that I am home, I feel I could have used more detail during the choosing process. The CBD oil prescription we need is "in production" and only one producer in Canada makes it. Ugh! What this means is registering with two producers (no biggie) and ordering two oils to combine and make what I need. A little nerve wracking, but not really since I've been dealing with dosages and splitting meds and blah blah blah for many years.

So now, we wait. After registering with the producers, we wait for the paperwork to be received on their end which should take 2-3 weeks. Then an order is place and shipped directly to our home.

This afternoon, my boy almost lifted off his chair when he heard me report to the doctor the 99 seizures since Christmas Day. As I write this the tally is up to 107, so that is one reason to try CBD oil. Well, a mere 107 reasons.

Special Hands

The Seizure Monster.

Partial Complex Seizures stemming from the Motor Cortex.

A tingly hand, sometimes a tingle in the brain. A hand that will not respond.

10-60 seconds.

48 Partial Complex Seizures since Christmas morning.

One med increase: another 175 mg of Trileptal.

One 9 yr old boy who worries that he is going to need surgery again, who is concerned that he has "that type where you have hundreds of seizures a day that cause damage."

Many hearts melting each time another Seizure Monster rears it's tingly head. Many prayers being sent up for Rhett. Many thoughts and plans and wishes mulled over. Many questions. Many fears. Many hugs and laughs and continuing on.

A few hidden, quiet tears.