Cheers to 2013, and farewell to 2012!

It's amazing at where you can find the most inspiring, deep understanding in people by even a simple quote, or perhaps even a TV show.  For me, it would have to be the most recently catching up to Private Practice last night via On Demand.  There is a Psychiatrist whom was diagnosed with prostate cancer and as he was going under a scan to see if he might have a mass elsewhere when he ran into a lady in the waiting area who was terminally ill with cancer.  Prior to this, he reconnected with his ex wife to try to ask for her support besides just fun weekend hookups.  She said she couldn't handle it and walked away entirely.  Ironically, the same that he did to the terminally ill lady until his own Psychiatrist mentioned to him that as he had experienced with his ex wife that not everyone has the adversity and ability to adapt and deal with some of what life throws our way.  He took life at it's grips and asked the terminally ill lady out on a date.  Yes, it all sounds fictitiously cliche.  In reality, this is real.  Not everyone can handle all that life throws at us, and even though we never expect it to happen, some just can't handle it all and instead walk away.  This has no part in my principals, but not everyone shares the same insight.  No matter what happens, some one must still take care of things and get stuff done.  Life isn't a simple walking away from things, as it only makes things far harder within time.

With that said..I'm grateful for 2013 quickly approaching!  2012 has been a world wind of happiness, sadness, stress, craziness, and all those lovely memories with my kids in between it all.  Sure there has been tons of doctors appointments, some things that come and some things that go, but all in all it's about savoring those wonderful small moments in life that make you feel alive, and stay present in them when they do happen!

I've had a crazy past few years during this time of the year.  This is the first Christmas and New Years  Eves that has brought me amazing peace after years of healing from a traumatic one when I was pregnant with my oldest son.  Every year taught me something new to learn from, heal from, and keep moving forward with continued progress.  As they say what doesn't kill you only makes you stronger.  This really has helped contribute to helping me handle all that is going on with Colin's journey this year almost like it prepared me for all this. I'm very grateful to be alive and living each day even with the good and the bad that comes my way. 

 A week from today my college classes pick up once again.  There is 16 credits altogether with 4 classes of Photography, Intro to Drawing, Women in Art, and English.  I completed my last term through thick and thin with a 3.57 GPA struggling greatly with Biology but completed it with an inspiring teacher.  The last 3 weeks of class was another dark point in my life where I just 'let it go' and let it be what it would be while doing what I could.  Setting aside my stubborn type A personality!  The most amazing moment happened to me when I did this.  While handing in my final exam my teacher leaned forward and whispered to me that to not worry about the test I had missed or the lab homework as she gave me both 100% for free on those.  I was floored, and left all misty eyed.  It was so refreshing to know that some one could do such a thing knowing that I was working hard and yet struggling due to too much on my plate with my personal life that just seemed to keep piling up.  I will NEVER forget that moment, as she really touched me permanently.  I'm working so hard to keep things together, complete, up to date, and yet retain all this homework college throws at me while also trying to memorize all that is going on with my sons medical situations..appointments..and such.  It really was a pursuit of Happyness moment.  I am also extremely grateful for my mom being such a huge support like she's never been before.  She would call to encourage, wish me luck, and support me with just honestly genuine motherly love when I needed it the most.  Not to mention those amazing friends who have been there along the way to reach out, listen, send me such amazing kind and supportive words along the way.  I'm truly blessed and SO grateful.   

They say you're not handed more than you can handle.  I'd have to laugh at that at times but despite the insanity I wouldn't want my past to be any other way.  Adversity, Courage, Faith, and Adapting are my huge keys to moving forward.  I'm sure all those years of pushing through long distance running also helped me tremendously to keep fighting and loving through even the most hardest hours.  I just know there is more in store, and more to be completed, and more to be done.  I don't mean that in a pessimistic way but in a realistically optimistic approach.  When people ask me how I do it or going to do it, I just let them know I've been through worse.  It has made me who I am and that is precious to me as I am Cambryn..one of a kind not just with my name but who I am.     

With that said, I wish you all the best New Years of 2013 possible!  Our journey continues as does yours.  Live like today was your last and don't forget to enjoy the sunrise each morning along the way. 

With that said, I leave you with one of my favorite poems by Maya Angelou--who I've had the great pleasure of seeing in person! Enjoy:

Phenomenal Woman

Pretty women wonder where my secret lies.
I'm not cute or built to suit a fashion model's size
But when I start to tell them,
They think I'm telling lies.
I say,
It's in the reach of my arms
The span of my hips,
The stride of my step,
The curl of my lips.
I'm a woman
Phenomenally.
Phenomenal woman,
That's me.

I walk into a room
Just as cool as you please,
And to a man,
The fellows stand or
Fall down on their knees.
Then they swarm around me,
A hive of honey bees.
I say,
It's the fire in my eyes,
And the flash of my teeth,
The swing in my waist,
And the joy in my feet.
I'm a woman
Phenomenally.
Phenomenal woman,
That's me.

Men themselves have wondered
What they see in me.
They try so much
But they can't touch
My inner mystery.
When I try to show them
They say they still can't see.
I say,
It's in the arch of my back,
The sun of my smile,
The ride of my breasts,
The grace of my style.
I'm a woman

Phenomenally.
Phenomenal woman,
That's me.

Now you understand
Just why my head's not bowed.
I don't shout or jump about
Or have to talk real loud.
When you see me passing
It ought to make you proud.
I say,
It's in the click of my heels,
The bend of my hair,
the palm of my hand,
The need of my care,
'Cause I'm a woman
Phenomenally.
Phenomenal woman,
That's me.

Maya Angelou

Cheers and much love,
Cambryn Courson (aka: Conner, Logan, Colin, and Breatens Mom!)

2012 appointments with 2013 more to come

This year has been quite an adventurous one from 52 appointments within the past 11 months.  There is plenty more that needs to be scheduled for just Colin alone.  Not even including screening the other two boys [not my oldest is needed].  It's no wonder parents with special needs children aren't able to juggle a huge load in addition to all the rest that comes with life.  However, I'd like to be that exception when it comes to life and take each moment carpe diem in order to live a full life.  As they say, live life out loud.

Future appointments shall be made with these specialists and needs: 

• ERG with Casey Eye Institute to follow up on possible progression of Achromatopsia or even Cone-Rod cell dystrophy in addition to Achromat. There is signs that he's likely completely color blind with possibly just seeing colors very minor.  It's no wonder he hasn't caught onto learning his colors like he has other things! This will be overseen by an eye geneticist and neuro ophthalmologist.
• Every 3 months we have a maintenance visit with Casey Eye to make sure no further damage is done with his potential Retina rips or coming unattached. Due to Sticklers Syndrome.
• Occupational and Physical Therapists due to preventing Juvenile arthritis with muscle stability which is highly common with Stickler Syndrome, as well as helping with his Sensory Processing Disorder management.
• Neuro Psychiatrist to determine if he does indeed have CDD or just Aspergers with some regression in general.  As he's gone from being highly articulate to now more one words or stuttering that he's never done before.
• Continue to see the Psychiatrist to manage behavior, and a behavior specialist is likely needed as well in particulate once he attends school.
• Contact the school for the blind in order to manage and receive help for his Achromatopsia as he goes 'completely blind' in bright settings such as indoor or outdoor lighting. If he see's, it's in a high contrast of black and white.
• Eye Dr's to get the most accurate and correct tinting of his special glasses needed for Achromatopsia such as shades of amber to yellow to potentially just full on deep red.  He'll need around 2-4 pairs, I've been told.
• Shriners, there is currently about 5 different specialists we also see there on a regular basis and will continue to keep seeing to manage symptoms, preventive measures, and such.
• Geneticist to hopefully get final test complete on what genetic mutation of Stickler Syndrome he has, Achromatopsia, Aklyosing Spondylitis, as well as a few other potential genetic mutations that might surface from 2nd cousins on Mikes side. I believe there is about 7 different genetic tests that are still pending via the insurance for months now. 
• Retest him in Gluten intolerance, dreadfully again.  The last one was false as the last week I had tapered off from his Gluten diet due to his inability to sleep at night. He became full of sensory, stemming, and had massive meltdowns that would leave him to falling asleep at times 2 am if not sleeping at all during the night but instead fussing and crying all night flopping around not being able to get comfortable.  Not exactly the most exciting situation when you're attending college full time and need sleep in addition to juggling this!  Melatonin on a regular daily basis has put him to sleep far better with out much of these hitches as well as returning to a Gluten, Dairy free, and Cassen free diet.
• Keep log of all that he eats.  He will likely still see a Pediatric gastric/bowel specialist as well.  He has never but rarely had solid BM since birth.  He also complains about a painful stomach ache and eating gives him anxiety at times.  Tracking his diet will help determine what exactly is making him set off with these anxieties, and potentially help lessen them from being aware.  Yay, another thing to keep track of.  Why not?

My hopes has been to have him in Preschool already.  However, due to college it's been hard to settle down those details and make sure to get him in quickly.  My hopes is to get him into a pre-k this next return to Winter season and that everything will go well with him adapting into a social environment.  It will be a great test to determine how he'll adjust to Kindergarten starting this fall.  That will be nice to have 3 kids in school this fall! *phew*

More to come in 2013, and it's very likely I've left a few things out.  I've had to take a few weeks off during finals and stressful intense situations this month from many of these appointments which has set us back a little.  However, I hope to return and get most of these once again out of the way that way I can focus on other projects and life better.  After all, I have to still pay attention to my other 3 boys in the juggle of it all.  It's not hard, but it's also not easy.  I'm just ready to clear my schedule a bit more from all that still needs to be accomplished!  

Color blind? Completely, perhaps?

Lately there has been some comparing going on with notes to other parents with Achromat kids who are full Achromatopsia which means they're entirely cone/rod deficient or to the point that they're so low on these cells that they no longer can't see any colors at all.  This has been in my thought for a long time considering he catches on amazingly well to numbers, counting things with out pointing or using fingers, ABC's, basic shapes to even octagons and more.  Yet, he has always typically struggled with colors.   Why is this?

Lately he has not been able to tell me what colors are what.  A huge thing other parents said to what I was asking about is that he says black is red, or red is black, and yellow is white and virtually no yellow colors have any color to him as he immediately says white unless it's more of an orange or darker yellow.  I think it's because of the shade.  The other parents with full Achromat kids have told me that their kids say the same as well until they were old enough to point at a color scale.  Think about it, if you have no base line of what colors are at all how would you have anything to go off of?  You'd memorize different shade colors as people point to them in order to try to memorize them.  That is what other parents have mentioned to me as well.  It all really does make sense.  After all, the ERG taken during summer resulted with her expressing how low the cells really were to the point where if he does see color it's very minor.

Can you imagine not seeing these magnificent colors?  Ever.

I had this epiphany driving in the car this week with my 2 youngest sons.  I don't recall exactly where we were headed.  It was more of a detour since part of the highway out of where we live was closed due to construction.  I decided to take a back road and drive to the general area that I knew the other entrance to the highway was.  During our back track it offered me time to soak in the color of all the fall leaves transforming into warm reds, oranges, and yellows with almost little to no green leaves as the sign the season was in transition.  It was a very euphoric feeling just meditating in that quick moment of my detour.  Enjoying the view I quickly informed Colin to try to take a look outside and let me know what he sees on the tree's.  That is when it really actually soaked in with me.  What if he can't see this vibrant colors of the earth?  Just as much as he can't even go outside let alone have the window blinds open when it's a beautiful sunny day outside that he can't even enjoy since all he sees is completely white or black and white contours of things around him as he tries to navigate around it all.  Often times he goes completely blind from the sun.  No blues, clouds, etc.  Thank God for modern technology as I've been able to show him what the sky actually looks like from a view that he will never experience it with.  

Only more ERG's as well as genetic testing will confirm where he is at within the vision spectrum of color.  Or if it's progressively going to get worse within time to the point that he'll go completely blind from either that or a detached retina. 

As they say, "just take one day at a time"  

That is all we really can do. 

Carpe Diem and let him see the sights that will be engraved in his mind for years to come!   

 

What if your annual visual reference for fall would be in a grey monochromatic scale?

Gluten intollerance blood work today

Gluten intolerance test is today. This time has allowed me to do a really great vaccuming of the house with out hearing him scream for it to be turned off due to his Aspergers and SPD. Which I typically need to vacuum 2-3 times daily just to stay on top of the crumbs and mess the kids bring and this always sets it back further.  Yesterday, I took Colin out to eat with Braeten and I for a rare [about to be non existent for Colin!] morning breakfast yesterday of his absolute favorite french toast.  He eats such a large portion that he typically is ordered the adults size vs. the kids plate.  Braeten had eggs, bacon, and hashbrowns.  I decided on some steak, shrimp, and salad.  Running around and doing all what I do I need as much energy constantly to stay on top of it all. As no one truely knows what it's like to have a special needs child unless they have one of their own.  It's horrible when you hear those making fun and saying how annoying how special needs people are, for example the guy with Asperger and turrets from American idol who ended up being one of the finale guys on the show but had these 'weird' mannerisms that he couldn't control.  Seriously people, don't make fun of things you don't understand.  Don't judge.  Also, don't judge the parents of a special needs child.  It's not the parenting, it's a neurological and beyond peoples parenting abilities.

Colin yesterday hugged 5 poles before entering Fred Meyers as he always does and if there isn't that repetition as well as soothing to him.  Most people wouldn't have patience or scowl at allowing the child at having such extreme eccentric behaviors, however, with a special needs child you just adapt to loving them and allowing them to continue it so that you can prevent meltdowns and uplift his behavior and mindset.  It really does make a difference.  Yelling, defeats the purpose and makes more damage and lack of trust towards you which trust is vital with a special needs child between caregiver or parent to child.

 On another note, I'm very thankful for what my parents have been doing for all of us.  My mom has  been purchasing vitamins for a few years now with far more expensive ones now to help with the brain, vision, stomach, etc. as well as dropping off some major gluten free groceries from time to time has been a huge support. 

There is plenty more going on.  This is just the iceberg of frustrations.

All of Colins conditions at this time and educational videos related to them

Melatonin is awesome!

Melatonin is awesome!  We've heard from many other parents about this natural method of effectively putting your child to a peaceful nightly rest with out needing some nasty drug with major side effects in order for him to get a good nights rest.  We chose to pick up one that is all natural, containing no animal products, and completely vegetable based and not artificially [which is the worst kind to use!] created.

I consulted other parents, doctors, nurses, and more to hear other feedback on this method of getting Colin to a peaceful nights rest during this gluten intolerance time in order for proper testing.  With everything going on and such little quality support we have, it was time to try an alternative holistic proven method.  Wow, does it work!  I was skeptical at first.  I gave him it broken up into a reeses peanut butter cup at 6pm letting him know they're chocolate chips and that they're part of the reeses when he asked. After all he has an OCD phobia about sleep and even small honesty would set him off to absolutely despise this supplement.  It wasn't any further than 7:59 with him all dressed up after shoving his mouth full of food all evening [he becomes this way when he's on gluten diet as his stomach hurts, constant runs, cramping tummy all the time thinking he's hungry, his stomach becomes huge out of bloating from gluten problems, etc].  He crawled into 'the thinking chair' and immediately not even a minute later was snoring hard solid logs!  2 nights in a role and not even a minute later than that exact 60 minutes, I'm no longer a skeptic!  It's like clockwork for him.

Here is an image of him passed out cold after his first dose of melatonin:

Halloween as a family

 Images from Boo bash near where we live which is an awesome community event we attend every year.

Colin as Mario from Super Mario bros. while Braeten is wearing the traditional chicken costume that I made for each of the boys to wear at the same age.  4 times this costume has been worn now for each of my boys!

Conner was 'black' from Pokeon

Logan a cowboy for boo bash but wolverine for Halloween night.

 Proud mama dressed up as zombie Katy Perry with the most adorable chicken ever, Braeten!

 Proof that Colin has 'day blindness' where he can't see or his field of vision is extremely narrow to the point of being completely blind during bright sunlight.  Hence, why his eyes are wide open and won't flinch while you swipe your hands in front of his eyes.  Achromatopsia is a genetic condition which commonly comes from incest.  Which is why the geneticist as well as his Pediatric optomotrist believes the Reichert 'royalty' might be involved in this rare genetic mutation.  As royalty in the Reichert side heavily encouraged incest amount 'royal' family.  There is also color blindness on a 2nd cousins side of the Reicherts with additionally having hearing problems which might potentially explain Sticklers..possibly.  This could come from more than 1 side of family as told from geneticist. 

 Colin loves his Thomas candy bucket all dressed up at Mario.  He has started to make less eye contact now, smaller word answers, and severe regression within speech.  However, he has potty training but they've told us to watch that over the next 1-3 years to see if there might be any regression that would let us know if CDD is going on. 

One of Colins many obsessions.  At Fred Meyers he has to hug each pole before we enter the store or exit the store.  At times he's okay at least touching it.  However, he will know if we missed one or skipped one in which a meltdown occurs due to his OCD like behavior.  These meltdowns you can't just 'snap' an autistic child out of.  No real redirecting either.  You must feed the OCD behaviors to what it wants in order to be satisfied as it's calming to him.  Just like his spinning and hand flapping he does all the time is a form of stemming.