Ear Tubes

Stella will need ear tubes.

I knew this was a possibility.

I was hoping she wouldn't need them, but she does.

This will probably happen in November. That, plus a second sleep study. I am hoping that her apnea has improved.  She seems to sleep better at night so perhaps this means her apnea has improved. I guess we will find out soon.

Waiting to see the ENT Dr.  The actual appointment took 10 minutes.  The drive? 3 Hours. Sigh.

Burning some energy before the long car ride back.

Here's the kicker.  The "thing" I didn't really see coming.

Olivia will probably need ear tubes also.

I noticed a few months ago that Olivia seemed to not hear me when I talked to her. I wasn't in another room yelling, or far away from her.  She was usually just sitting at the table eating.  I'd usually be behind her cooking or cleaning or something and I'd ask her a question like "Livi, are you ready to go over your spelling words?"

She'd keep eating and not say a thing.  At first I thought that she was just busy deep in her own thoughts.  But it kept happening more and she'd also keep saying a lot of "huh?" and "what?" and "pardon?".

Then just this past week she came home from school crying that her ear hurt. Now this particular day that she came home was a VERY, VERY blustery day to say the least and so I though that perhaps her ears just hurt from being outside in the wind.

Sadly this was not the case.

I was hoping I could help her ear without having to resort to antibiotics.  But as Tuesday passed and Wednesday began, she seemed to not be improving.  So I took her to the doctor.  Well, true to form, Olivia not only had two really red ears, but Strep Throat also.

Sigh, and the vicious cycle continues.

Antibiotics.

Over the past year and especially the past few months, we have been trying to help boost all of our girls' immune systems.  Multivitamins, fish oil, probiotics, Vitamin C, Vitamin D, echinacea, you name it, they are taking it.

But this battle is an uphill one and now that Olivia has to be back on antibiotics for Strep throat, I feel like we have now taken 3 steps back.

As for Olivia's hearing, ever since Monday, her hearing seems to be suffering even more.

Thankfully we have been referred to see the ENT here in Medicine Hat.  I am fairly sure that they will put ear tubes in.

In the meantime I am researching natural ways to help relieve some of the fluid.  But am I too late? Can I even help?

I just hope she doesn't struggle in school.

Come Monday, I will call her teacher and explain the situation.

But as always, a mother worries.

My big girl. 

Poor Her

On Wednesday we went to Olivia's "Welcome Back BBQ" at her school.

There was lots of people, lots confusion and just general sensory overload. Screaming kids, loud music, laughter.  All of it good, yet not.  Make sense? Good.

Stella loves playgrounds. We live directly across the street from a playground and we are there almost every day.  As soon as she saw the playground at Livi's school she started vibrating! Mickey went and got the girls their hot dogs while I took Stella over to play on the equipment.  The playground was busy, very busy.  Stella would climb up a ladder and then just walk around watching all the kids.  She attempted to go up the stairs to the slide, but kids would rush past her and she'd just stand at the base of the stairs....watching....vibrating.  She looked totally enthralled, yet seemed very unsure as she would not go up the stairs and go down the slide.

As Stella walked back and forth, climbed and observed the craziness, kids would look at her, say hi, stop and say "awww, she's so cute!", or just plain ol stare with great intrigue.  One little boy however made me realise just how far we have to go when it comes to seeing all individuals as equal, unique, smart, capable and perfect as they are.

This little boy stopped and looked at Stella, smiled, said "Hi" to her.  Stella looked at him and waved.  I then asked the boy what grade he was in.

"Grade Two"  was his reply.  "She's cute."  he said while smiling at Stella.

"She sure is" I said. "So what is your teacher's name?"  I was curious to see if I would know the teacher he had.

But I guess he didn't hear my question or he had other things on his mind as his answer was "Poor her".

"Poor, who?"

"Poor her" he said, then pointing to Stella.

"Poor her?  Why?" my heart sunk to my shoes. I know he's just a kid, but I really didn't want to hear what he was going to say because I already knew what he was going to say. I wanted to run.

As expected he answers my question with,  "Because she has Down Syndrome."

My reply "Not poor her because she has Down Syndrome. She's awesome and there's nothing wrong with having Down Syndrome."  My heart was breaking. I wanted to go and slap whatever adult had misled him to believe such mistruths.

This kid was cute, he was still smiling happily away at Stella, still engaging in conversation. So I asked him  "Do you know what Down Syndrome is?"

"It's when you can't do things like talk."

"Actually Down Syndrome is when you have extra chromosomes in your body.  Stella can talk, it is just taking her a little longer."

And then this kid says  "I have a friend who has Down Syndrome and he talks pretty good.  His name is Luke."

"Well then you know first hand that Down Syndrome is nothing to feel bad about. Your friend has it and you seem to think he's great!"

And with that he nodded and wandered off.

Standing up on the playground equipment, watching Stella watch all the other kids, I felt sad, but mostly annoyed and slightly pissed off.

What adult/parent has passed on this message to an innocent 7 year old kid?  Someone in his life has at some point equated "Down Syndrome = Poor, poor kid."

This is why I am blogging.

This is why I am telling this story today.

This viewpoint of Down Syndrome needs to change.

But we as adults, as parents, need to be the example.  We need to let go of stereotypes and labels that society has placed on those with disabilities.  The automatic assumption, the "tsk, tsk, cute poor little kid with Down Syndrome."

Children are very perceptive. This little boy was friends with a kid with Down Syndrome yet somehow he still "felt sorry" for Stella. What is he hearing and seeing to make him still have a negative perception of Down Syndrome?  

Stella needs no pity. Her extra chromosome has presented her with some extra challenges.  But these challenges are obstacles that she can and will overcome.

Sophie sucks her thumb....still. She has tried a few times to stop sucking her thumb. This is her challenge, her obstacle to overcome. Yet she is not pitied when she is walking around sucking on her thumb. No one says "awww poor cute girl who sucks her thumb." No one looks at her and assumes that she's just always going to suck her thumb. 

 Why? Because we know that eventually she will overcome that obstacle, that challenge.

Same goes for Stella. Her current obstacle is speech.  But just because right now she's not running around having long conversations with people doesn't mean that she won't. Having DS also doesn't automatically mean that she'll speak poorly when she does become more verbal. 

I guess the long winded point that I am trying to make is that when we pity someone with a disability, when we make assumptions based on a label given to someone, we lower our expectations of that person.  We see them as "less".

That is a big mistake that we as society are making. 

Having Down Syndrome does not make Stella "less then".

Having Down Syndrome does not make Stella sad.

Having Down Syndrome does not make Stella less human.

Wake up society.

Take a look at these two videos and tell me if you pity these two kids.

Never underestimate.

It's The Most Wonderful Time of The Year... Oh Yes.

Remember this commercial??

Of course, way back in 1996 I  didn't "get" this commercial. I thought it was funny, but I didn't "get it".

After this summer.....oh boy do I ever!!

Olivia and Sophie can be so good together. They will play and laugh and giggle and have just a grand ol' time.

But when they fight, boy do they fight.

Olivia is feisty. Sophie is feisty.  Not the best mix when arguing begins.  Things seem to get out of control fast.

I won't go into too much detail, but all I will say is that blood has been drawn and tears have been shed.

I am ready for school to start.

Game Changer

What would you do for your child?  What lengths would you go to to help your child achieve their fullest potential?   What sacrifices would you make to get them to where you KNOW they can be?


For me the answer is simple.  I will do whatever it takes!!

For a while now I have been feeling unsatisfied with the progress Stella has been making.  Don't get me wrong, I have been loving and appreciating every milestone Stella has been working so hard to achieve.

But I have been feeling like we are missing something.

Since Stella turned two years old,  I saw very little progression with speech.  I kept thinking "there must be something more we can do to help her to talk".

Speech is huge in life.

Stella knows how to sign, she is able to be heard by using her voice (as in yelling or grunting when she wants something or is in need of help).

But that will only get her so far.  She is going to be starting preschool, she is going to be around typical kids more and more and knowing that she would not be able to communicate with them at their level was just causing me such sadness.

"She'll talk when she is ready" I kept being told

I wasn't convinced.

"There HAS to be MORE we can do for her!!!" I kept thinking.

Then one day I was checking out my Facebook news feed and came across this article that a friend of mine posted.

Life, Liberty and the Pursuit of Happiness for Kids with Down Syndrome

This article, made me stop.......

This article make me think.....

This article blew my mind......

This article was a GAME CHANGER!!

I always knew that Stella's brain function was different, but it never occurred to me that her brain was disorganised, that her brain was injured.

So, if Stella's brain is injured, does this mean it can be fixed?

Based on the beliefs of the Institutes for the Achievement of Human Potential (IAHP), the answer is YES!

Now this may seem "out there" and extremely "unconventional", but after reading the IAHP's website iahp.org, after reading their ideas and beliefs on children who have Down Syndrome, it just all made so much sense to me.

"Children with Trisomy 21, labeled as having Down syndrome, have a pattern of malformations that are pathogenetically related. It was believed that these genetic problems were the complete explanation as to why these children could not function as well as other children. As a result, it has been assumed that they could not be treated or helped.

This is not the case.

The Institutes does not treat the genetic disorder. However, these children are brain-injured as a result of their genetic problems. Those injuries may be mild, moderate, severe, or profound, just as they are in other brain-injured children.

Down syndrome is a label rather than a diagnosis. A proper diagnosis describes where the problem exists, the degree of the problem, and the extent of the problem. It is necessary to treat the brain, where the problem actually exists to be successful.

The Institutes teaches parents how they can help their child by focusing on the normal development of the brain, rather than on therapies that may be directed only at the symptoms." (an excerpt from iahp.org/downsyndrome)

I read this and re-read this, and every time, it made sense!

"For too long brain growth was thought to be a static and irrevocable fact. Instead brain growth and development are a dynamic and ever-changing process.

This is a process that can be stopped, as it is in profound brain injury. This is a process that can be slowed, as it is in moderate brain injury but most significantly this is a process that can be speeded.

All that we do to speed the process is to provide visual, auditory and tactile stimulation with increased frequency, intensity and duration in recognition of the orderly way in which the human brain grows. We then arrange for the child to have the maximum opportunity in an ideal environment to use and develop the motor pathways.

For more than a half a century, the heart of The Institutes program has been based upon the fact that the brain grows by use.Scientists now recognize the plasticity of the human brain and new research in neuroplasticity confirms that the brain is incredibly capable of recovery and rehabilitation. The old notion that once the brain is injured there is no means of recovery has been discarded."https://iahp.org/about

I showed Mickey the IAHP's website, I had him read the articles and to him it all made sense as well.

I called my friend who posted the article on her Facebook profile.  Her daughter has Down Syndrome and she has been on a ND (neurodevelopment) program with her since she was 8 months old.  I watched a few videos of their daughter and was amazed with what I saw.  It was obvious that they were doing something more then the conventional methods to help their daughter.

I emailed another facebook friend who did the IAHP program with her son from birth to 6 years.  She had nothing but positive things to say about her experience.  The program she had him on was intense, but worth it in the end.

I found two blogs from mother's whos children have Down Syndrome and who are using a neurodevelopment program.  The Down Syndrome Action Plan, and Down Syndrome Day to Day

These blogs are amazing sources of information and inspiration.  Both boys are changing what it means to have Down Syndrome! What they are achieving and what they are able to do fantastic to see.

I then ordered and read this book

This book is about Kristen's Morrison's son (who has Down Syndrome) and her journey into discovering how natural medicine (vitamins and mineral supplements), plus the IAHP program helped her son to achieve HIS fullest potential.   Naturally Better Kids - Down Syndrome, It Doesn't Have to Be That Way

Mickey and I want Stella to reach her fullest potential.  I 100% believe.....WE 100% believe that with this new information, with this new knowledge that we have just learnt, that we will be able to help Stella.

We will be able to help her more then we ever have before.

In December Mickey and I will be travelling to Philadelphia to take a course at The IAHP.

From this course we will learn all about the brain, brain injury, how function determines structure, the importance of physical activity, the importance of teaching children to read, how to create a nutrition program, and how to evaluate OUR child and develop a program for her.

From this information, Mickey and I will develop a program specifically and only for Stella.  You see The IAHP believes that the parents are the key, and that we know our child better then anyone else. Therefore, who better to put together a program and do the program daily, then the parents??

This road we are about to embark on is not for the faint of heart.  The program will be intense.

But Stella is worth it.

This is for her, for her future, for the whole family's future.

I will not underestimate you anymore my sweet Stella.

Vegas, Urologists and ANOTHER Round of Illness

It's been awhile.....

I'm becoming one of THOSE bloggers.

The one who always has some reason for not blogging.

Honestly, I don't know how you all do it!

How in the hell do you manage a post a day! Or even a post every other day, or a post a week??

I was doing good there for awhile, but then life just gets busy and I take FOREVER to even write a post.  Well, posts like this one are easy, but the post with a little more depth, those for me take a long time to write. I feel like I gotta get the words just right and sometimes what I'm thinking just doesn't seem to come out on paper quite right.

But I digress......

This is an update post, an easy post.

Let's start with VEGAS BABY!!

Woooo hoooo!

Our first night in Vegas!

Oh, how some days I wish I was still there.

Two week ago tomorrow (already), I met 3 of my closest girlfriends (and 2 ladies whom I had never met) in Calgary! From there we flew to Vegas and spent 4 fantastic days together! We got a little tipsy one night, we dressed up all sexy and went to a show, we went to a fantastic outlet mall and shopped all day, we rented a cabana and spent all day by the pool....the list goes on and on!

One of my BFFs

It was REALLY hard to come back to reality, let me tell you.  I shit you not, I got MORE sleep in Vegas then I get here at home.  Sure, I went to bed almost every night in Vegas at 2/3am, but then I got to sleep...UNINTERRUPTED for 6-7 hours!! Since I have gotten home, the most sleep I have gotten is....3 hours.

I blame the youngest McG.  Her sleeping can be awesome sometimes, but then she goes through weeks where she sleeps like shit. I believe she is affected by the moon's phases.  I have been keeping a sleep journal for her and it's always around a new moon that her sleep starts to go all haywire.

So, the night I got back from Vegas, Stella slept shitty, so I slept shitty.  Then a few days later Sophie decided to get a stuffy nose and guess who then got a stuffy nose?  Yup, Stella.  Stella is on a crap load of vitamins, mineral, probiotics...you name it, yet she still is managing to get sick.  I was hoping that it would just stay a stuffy nose, but nope, it's in her chest, so now she's on a nebulizer again.  I am now considering doing a complete overhaul on her diet.  So far I have cut dairy out of her diet, but I am going to start looking into removing gluten and sugar.  That being said, Stella is not the best eater, so I really don't know what I am going to feed her if I stop giving her bread, crackers, pasta.  If she'd only eat a vegetable (that isn't pureed), that would be awesome.  I know of a few parents whose children are on a sugar/dairy/gluten free diet.  I will have to get some ideas from one of them.

And poor Livi! She is fighting strep throat.  Whenever she gets sick lately, she always seems to get strep throat.  I can tell she has it just by how she is swallowing.  A few days before I left for Vegas she was complaining of a sore throat, and so I took her to a walk-in clinic (it was the weekend so I had no other choice).  The doctor there affirmed my diagnosis and prescribed the usual amoxacillin.  The next day Livi felt better and she continued taking the antibiotics as prescribed.

Well, just yesterday Livi came upstairs in the morning looking like she felt horrible and swallowing "funny".

"My throat hurts"

"What??  How is it possible that you could have strep throat again?? You literally just had strep throat!"

So off we jaunt to the clinic again, as her Ped is on vacation until August 12 (crap!).

Here is my version of the conversation with the quack.....ahem clinic doctor.

Dr.: "So what seems to be the problem?"

Me: "I think she (referring to Livi) has strep throat again.  She just finished a round of antibiotics on Saturday"

Dr.: "Strep throat is going around this year" (he says this right before looking in Livi's mouth)
Dr: (after looking in Livi's mouth) "That's not strep throat.  She has thrush."

Me: "THRUSH?? as in Thrush that babies get?"

Dr.: "Yes, it can happen after being on antibiotics as antibiotics kill both good and bad germs"

Me: "It didn't look like thrush to me? Does thrush cause her throat to hurt?"

Dr: "Yes, it can. It can be very painful"

Me: "Oh, okay. So, you are sure it's not Strep throat?"

Dr: "No, it's thrush"

Quack Doctor!

It's fricken STREP THROAT!!! That stupid antibiotic mouthwash crap has done diddly squat for my poor child.  She won't eat, can hardly talk and is in extreme pain every time she swallows!! Plus I have looked in her mouth practically every hour today and I'm sorry, but those white spots are not thrush! I know what thrush looks like, hell, Olivia, Sophie and Stella all had thrush as newborns!!

THAT'S NOT THRUSH!!!

Whew!!

Sorry, I'm a little pissed off.

Tomorrow I will be going to a different clinic and nicely requesting more antibiotics for my poor child. And this doctor better not tell me it's thrush or so help me God.....

Deep breathe.......inhale.............exhale.............ahhhhh all better.

Sophie's immune system seems to be the strongest.  That kid rarely gets sick, and when she does it's never for long.  Well, as baby and toddler, she tended to get chest infections but now that she's four, her colds never seem to bother her much.

No, her issue is her bladder.  She likes to hold her pee until she can't hold it anymore.  At the beginning of the year she got a bladder infection because of her fierce independence and unwillingness to cooperate when asked to "please for God's sake GO PEE!! I know you have to go!!!!"

This is Sophie back in March.  She had to go pee, but nooooo, she refused to go!  She insisted that she didn't have to go, and instead of going, she decided to lay down and hold her pee.  A few minutes after this picture she finally lamented and went.

After her antibiotics were done, she had an ultra sound and an x-ray of her bladder.  It was discovered that one of the valves in her bladder is not working properly and so when she pees some of the urine goes back up into her kidneys.  This is called urinary reflux.  So on Tuesday, Sophie and I made the 3 hour jaunt to Calgary to meet with the urologist at the Children's Hospital.  Sophie will have day surgery some time in the fall.  They will do what's called a "Sting Procedure".  The surgeon injects a collagen or Teflon through the tube.  It goes into the tissues below the valve.  The substance swells the tissues and sometimes tightens the valve and stops the reflux.

Then her little bladder will be good as new.

Thankfully she is much better at listening to her body and she does not lay on the floor......as often.

Update complete!

Now I must go and calm down Livi as her STREP THROAT is keeping her awake.

Quack doctor...mumble, mumble...thrush my ass....mumble, mumble....

Back To Reality

I'm back!!!!

My last post was right before the Saskatchewan River was expected to swell and do some major damage on the city of Medicine Hat.  We were packing and getting ready to catch a plane to Victoria to see my family.

Well, the river did swell, there was flooding and there was a fair amount of damage.  But the Trans Canada Highway bridge did not close and the river did not get as high as they had originally thought.

We had no problems driving to Calgary and the flight to Victoria was.....fairly uneventful.

I say fairly as I was expecting to be flying on a JET aeroplane, but when I looked out the window at the boarding gate I saw a plane with PROPELLERS???  Seems Mickey bought Air Canada Express tickets and Air Canada Express tickets give you a plane that looks like this:

A PROP PLANE!!

What's the big deal, right?  No big deal really, but for some reason the thought of flying on a plane with propellers was a lot more nerve wracking to me then flying on a jet plane.  Oh, and guess where my seat was?  Yup, right next to the propeller.

I am not a big fan of "take off" while on a plane and this time was no different. Mickey always gets a good giggle watching me close my eyes and "breathe" as the plane bounces up and down in the air as it makes it's way up past the clouds.

Once we levelled off, and the plane stopped bouncing around I was able to relax.  Stella on the other hand... she was not impressed at all.  She never actually cried, but she did not like the sensation of being on the plane.  Poor kid just didn't know where to put herself! She'd sign "mommy" and then once she was in my arms she would fidget, pull away and then sign "daddy".  Then Mickey would take her and she would do the same thing with him.  Sophie and Livi were awesome travellers! They sat together and giggled and sang and were just really cute.

Our week in Victoria was awesome!  We stayed with my sister, her husband and my two nieces.  Sophie and my niece Emily are the same age (6 weeks apart, to be exact).  They got along so well! Every year they see each other they get along better and better! There were a few arguments between Sophie and Emily and there were a few arguments between Olivia and Sophie, but on the whole.....they were all just really well behaved little girls.  They shared, they laughed, they played, they giggled, it was just so lovely.

Playing "Baby".  Emily is the baby, Sophie is the mommy and Livi just decided to jump into the picture....

These two were just so cute. 

Livi and Abby.

Stella and my other niece Abby (she's 15 months old), got along really well too....for toddlers...  Abby enjoyed pushing Stella every now and then, and Stella got in a good scratch here and there.  But on the whole, they did way more hugging and parallel playing then pushing and scratching.

The Toddlers!! They were the  "silent communicators".  Neither of them said much, yet they seemed to know exactly what the other one was saying.

Too adorable!

It was awesome hanging out with my sissy sis.  It was awesome seeing my parents again and having my girls spend time with them.  It was awesome seeing a few of my girlfriends and their kids again.

Stella loved listening to gramma sing her songs!

At the park with Grandpa

LOVE this photo of my dad and Olivia!

I miss living there.

I miss the mass amount of lush, green trees... and bushes!!

I miss the hills.

I miss seeing the mountains.

I miss having my sister nearby.

I miss having my parents nearby.

Yet I feel like where Mickey and I are right now (living in Butt Fuck, Alberta), I feel like this is where we are supposed to be.

The air may not smell as fresh, the trees may be more sparse, but this is our home.

Life is good here.

I will see my family again next year.

And it will be awesome.

And maybe we'll get a picture with ALL of the grandkids with the grandparents......

So this was the best picture we could get of the grandkids with the grandparents....Sophie, during the whole trip, refused to cooperate and smile for a picture....unless it was just her in the picture.  Stella, clearly, was DONE and not the least bit happy. Abby was nowhere to be found, Emily was distracted with Stella crying.  The only child cooperating was Livi.  But wadaya gonna do?

PS. This post was brought to you by the word "awesome"

No River Flooding Is Gonna Stop the McG Clan

Alberta is facing mass destruction and devestation due to flooding. Mass amounts of rain in Northern Alberta have caused the rivers to swell.  High River is covered in water.  Here is an article from the Calgary Herald.

High River

Yesterday residents from downtown Calgary were told to evacuate and this morning, this is what downtown Calgary looked like.  Pictures courtesy of Calgary Herald.

Down Town Calgary

Here in Medicine Hat, those living in the lower lying areas (those close to the South Saskatchewan River) have until 10pm tomorrow night to evacuate from their homes.

So far, there is no flooding, but the river is predicted to start to swell at an alarming rate tomorrow afternoon.

We McG's do not live near the river so we are still in our home.  We have plans to travel tomorrow...to Calgary...but NOT to downtown.  We will be going to the airport and flying to Victoria, BC to visit my family. All roads to the airport are good so off we will go, crossing our finger and just taking it as it comes.

We have stocked up on as much water as possible.  We are unsure as to what we will be coming back to.  I am optimistic that all shall be ok, but I am not sure if there will be available running water.  I honestly didn't even think to go and buy water to stock up on, but no matter as ALL stores in Medicine Hat are sold out.

I honestly don't know just how bad this flood will hit Medicine Hat, but I am optimistic that it won't be as bad as everyone is making it out to be.

My thoughts and prayers are to my "Hat" residents who have been displaced from their home.

My thoughts and prayers are with all of my fellow Albertan's who have lost loved ones, who have lost their home, who are displaced, or who are just scared shitless.

I am attempting to Stay Calm and Carry On as the British have once said.