March 27, 2011

Sitting here wondering...

I should be sleeping.
My body is tired, its needs to rest.
Tomorrow Mason has yet another test at Children's Hospital.
An EEG to be exact.
Since he was in the hospital at 11 months old I thought he needed this test.
But here we are just over two years later...
sitting wondering if Mason has been having seizures all this time.
If it is so, how is it going to change things. 
Is there going to be change?
What damage has been or not been done?

Praying for no seizures, praying that if he is having them at all tomorrow will show us.

So in 4 hours I will get up with him for good, gotta get him to fall asleep halfway through the test. 
Melatonin will be present.
Long drive in, hoping neither him nor I fall asleep on the way.


March 23, 2011

When Reality slaps you in face once more.

There are times, only when I am alone which isn't very often that I daydream.
I think to myself maybe he isn't that different.
Maybe we are making a Mountain out of a molehill.
Maybe one day we will look back, b/c they were all wrong.
Maybe he will be just fine, and life will be "normal".

And then you wake up and read that your life really is different, and not normal.
It maybe our normal, but it's really not going to "just be ok".
Shocking that I was part of this report, the words came out of my mouth. 
But living in it I get lost.

Anyways, this is where I have been. Dealing with it all.
A letter to the government on our behalf, asking for respite.

Mason Sears, a two year old boy, was seen for a speech/language assessment by this speech/language pathologist in Fall 2010 as part of a multi-disciplinary assessment to rule out Autism Spectrum Disorder (ASD).
I had the opportunity to assess Mason in his home and observed his interactions with his parents and siblings as well as with myself.

Mr. and Mrs. Sears reported that Mason’s physical, developmental, and social skills varied from day to day and within a day. This was observed during the assessment sessions. At times, Mason was happy and well-regulated, particularly when engaged in preferred and / or repetitive activities and behaviours, such as watching a favourite movie that involved Harry Potter or Peter Pan. However, within moments, Mason was observed to become aggressive towards others in his environment, whether that was his parent or another adult. Mason was also observed to rapidly shift to become aggressive with his siblings. Even as a professional who is trained to work with children with significantly challenging behaviour, I was on guard for my own personal safety while working with Mason. For example, on one occasion, I was interacting with Mason as I administered an item on the language test. Mason was smiling and talking with me; however, in an instant, Mason suddenly hit out at me with a toy, hitting me in the face. This was despite having been in a guarded state when working with Mason as other acts of aggression had already been observed towards me and others. Mason did not respond with any empathy when an over-exaggerated emotional response was given in response to the injury. Mason was observed to hit his mother and father as well as his brothers, again without emotional response or checking in to see if the targeted person was hurt. It was obvious to this speech/language pathologist (SLP) that Mr. and Mrs. Sears feared for the safety of Mason’s brothers. There is significant risk for physical injury to family members and to others who interact with Mason in his home or in the community due to Mason’s tendency to suddenly become aggressive towards others.

Mr. and Mrs. Sears reported that they no longer can have friends over to visit, especially if those friends have children, as there is a history of Mason hurting the other children. This is emotionally and socially devastating to Mr. and Mrs. Sears. Mason cannot be left in the nursery or Sunday School classroom at church, cannot attend community and therapeutic playgroups, or engage in play on playgrounds in the community due to concern for the safety of other children. This risk for sudden and extreme aggression is impacting the social interactions of Mason and his family members.
During the assessment sessions, Mason was also observed to engage in self- injurious and potentially physically harmful behaviour. Mason was observed to hurt himself when frustrated and aggressive. He had no awareness of safety within his home environment. He readily scaled to heights or onto surfaces that were unstable or unsafe. His parents were continually on guard to ensure that they could remove Mason from such situations as they spontaneously and suddenly arose. Mason was observed to scale the stove, to find a pair of scissors that had been hidden, and to reach into a kitchen drawer that contained knives or other pieces of silverware. In each instance, Mr. or Mrs. Sears quickly intervened to remove Mason from the risk situation. I was cautioned as I entered the home to make sure that my keys were tucked away out of reach as Mason had previously been electrically shocked when placing keys in electrical outlets. During the initial session, Mason was quick to notice the location of my keys and sought them out. They were removed from his possession and stored in an even more hidden location from that point on.
Mason was observed to eat and drink food that was unsafe for him, as determined by feeding team recommendations. He would seek out his brother’s bottle as well as any food or inedible item that he could find as he sought to put them in his mouth. Again, Mason’s parents were quick to intervene and remove the item from Mason’s possession. Mason’s swallowing issues put him at significant risk beyond that of other typical preschoolers due to risk of aspiration. Mrs. Sears reported that they must continuously watch Mason around any source of water, including water in the bathtub and the toilet, as Mason will attempt to drink the water if not under very close continuous supervision. This seeking out of water or thin liquids tends to become an obsessive behaviour. Due to his feeding issues, drinking such water or thin liquids could potentially cause aspiration pneumonia.

Mason was reported to be a safety risk when traveling in the car as well as when around vehicles in general. He does not keep his seatbelt on while riding in his car seat in the car, despite ongoing verbal prompts to do  so. 
Mason’s fascination with keys puts him at risk when around cars. He was reported by his parents to have put the keys in the ignition of his father’s car on one occasion.

Mason was destructive when it came to his own possessions and the possessions of others. This examiner had to closely monitor test materials as Mason was quick to reach out, attempting to tear pages and break test props. Mason was observed to walk right over toys on the floor with no regard to what he was doing. He dumped out bins of toys and threw them, rather than playing appropriately with them. Mrs. Sears reported that these were not uncommon behaviours for Mason. Mason readily threw toys and other objects around the home, with no concern for the toy itself or what object it might hit and break or person that it might injure. Mrs. Sears reported that Mason has damaged the walls in their rental home. She was concerned about the cost of repairing the damage when the potential time comes for them to move from this home.

Mr. and Mrs. Sears both looked exhausted and worn from caring for Mason both during the day and during the night. Mason was reported to not sleep well and his parents had to ensure that he remained safe during the night, especially with respect to his G-tube and feeding equipment that he wears during the day and at night, resulting in minimal sleep for them. Mrs. Sears reported that she very rarely cooks meals for the family on the stove or in the oven any longer due to safety risks with Mason. Microwaving is primarily the only means of cooking food in a safe way in the home at this time, due to the need to continuously supervise Mason. Mrs. Sears reported that it was difficult to make sure that she ate adequately or had time for personal care due to the time demands of caring for Mason.

Mason’s parents and his brothers are in urgent need of immediate respite care for Mason. Such respite care would allow Mason to be kept safe while the family could have down time from the high levels of vigilance they all personally must engage in.
Mr. and Mrs. Sears need the opportunity to have time to connect as a couple in order to preserve their marriage so that they can continue to provide strong parental support for Mason and his brothers.
Mr. and Mrs. Sears also need individual personal time to rest and distress from the ongoing challenges of monitoring Mason’s safety, medical, and behavioural issues.
It would be of great benefit for Mason’s brothers to participate in a sibling support group. This would ensure that the social and emotional needs of the brothers are met as they face the daily challenges of being a sibling to a highly reactive, aggressive, and unpredictable brother.
Mr. and Mrs. Sears also need the opportunity to spend focused time with their other two children when they are not monitoring Mason’s behaviour in order to ensure that they are meeting the emotional, psychological, and developmental needs of these boys.

Overall, Mason demonstrates ongoing and daily extreme safety and health concerns that are impacting the quality of his life as well as the quality of life of his family members.
If you have questions or require further information, please contact me.

Funny how this testing that this Person did was to rule out, Autism. But in fact got us our diagnosis.

I don't know where I was or am going with this post. Just thought you should know why and where I have been.

March 22, 2011

Mason is three.

It has been three years.
Three years since our lives were completely changed forever.
Three years since I thought my son was healthy, 1090 days since I discovered he was not.
It has been three years since I have averaged more than 3-4 hours of sleep a night.
Three years since "normal" existed in our world.
Three Years since Mason was just a teeny baby sitting in my arms, as I dreamed about what his life could become. 
Three years of struggle, hardship and pain.

It has been three years.
Three years since Mason came into our lives and changed who we were and are.
The growth, the bond, the strength we have achieved, all from Mason.
Our marriage and family tested more than most in a life time, has been made stronger with deeper love.
Most important Mason has taught us, we are not alone.
God is in control of everything, we just need to trust.

Mason taught us that finances are just that finances.
He is the reason that we learned money will come and go, there is no reason to fight, or worry about it.
God provides.

Mason has taught us that there is light in the dark. It may be hard to see at times, but its there.
Mason has made us grow, and there is so much more growth left.

Mason's "terrible two's" has been the hardest year so far.
Moving yet again.
Financial burdens
The following are the Diagnosis we received in the order we received them in the past year:
Oromotor Dyspraxia
Sensory Processing Disorder.
Anxiety Disorder ( Mason and myself)
Non Restorative Sleep Syndrome
Chronic Lung Disease
Development delays become more severe.
Mason stopped eating orally.
Expressive Language Disorder
Impulsive and harmful behaviours.
Restless Leg Syndrome
Smith-Magenis Syndrome
PDD-NOS (Autism)
Possible Sleep Apnea and seizures.
Motility (dumping issues)
Possible transition from G-tube to GJ-tube is being talked about. 
Getting asked to move again due to Mason's noise and behaviour.

This has been the hardest year of my life, depression creeped in.
The amount of information that our family was faced with this year was "out of body".
I personally have felt lost in the craziness of our life.
This has also been the biggest year of growth and support in my life.

My motto is no longer,
"It is what it is".
I now rock out : "In him I trust". 
This has been the biggest change for me in the past year.

I am ready for Mason's third year of life. 
We are ready to take these "diagnosis" and show them who is boss.
There are many changes to come this next year, and I am finding myself very ready for them.

But most of all I am ready to try to learn how to help Mason.
And Josh and Carter.
We all are going to need to learn how to deal with it.

To Mason,
I love you more than words or actions can or have said.
I wish I could take all the pain and suffering away.
I am happy that you are three, it has all gone so fast.
Happy Birthday Spiderman.

Love your Mama.

March 8, 2011

The URL is grounded for 60 days.

That's right people...
The URL is grounded for 60 days.

I didn't get an email to tell me it was renewal time...
they said that sometimes happens.
Why me OH WHY

So since I was 19 days late my URL is locked away in a vault for at least 60 days.
And then I have to jump on and try to get it before someone else does.
Moral of the story...
Please use to get to my blogs!

Oh and I dislike ALOT today.

March 6, 2011

Where have I/we been?

I know, I know.
It's been quite awhile, we have been busy.
Here's whats up!

- Has had an EVERYTHING infection through out the last 6 weeks. Almost better? Here's hoping anyways!

- Is no longer my baby, in a matter of two days he formed into a dependant early terrible twos toddler. I miss my baby. The head banging temper tantrums that are coming from this child are slightly cute though. I am sure this cuteness we find in his tantrums will be short lived!

- He is finally on completely thin liquids COMPLETELY! This is huge people!

He is such a stinker and I am NOT ready for him to be a big boy yet.

I find myself screaming inside, SOMEONE HOLD ME! LOL

- Mason is having some troubles with his health this last month so we have an emergency GI meeting this Monday. New meds and talk of going to a GJ-tube are on the list of topics.

- We have received his appointment for his EEG, looking for the seizures they think he maybe having. Its in early May.

- Still waiting for the appointment for the Sleep study, MRI and Chronic Pain Clinic.

- So many days and nights have been spent talking with so many options discussed. What are we going to do about his therapy? What are we going to do and what are we going to get for funding?

- We have decided with the help of the Child advocate that Night Nursing care is the best option for him and the family. So thats what they are going to be asking for. I am really unsure if that is exactly what we would like. Huh. 

-Mason will have a behavioural consultant that will be coming in the home soon to help us and also show Mason's BI what to do. This is all so new to us. All we know and this is the thought from everyone that Mason will go NO where until we get his behaviours under control. 

- Josh had EXPENSIVE dental surgery this month. The poor boy got my genes in the mouth department. (I already have a partial denture at 26, scary I know)

- Had a better month at school and has Spring Break coming up...Wonder what we are all going to do?

- Josh is at the beginning of reading, and it is so amazing. He just picked it up. Crazy how old they get and how fast!

- Been working loads of over time again...Blah. But we need him too so...

- Got himself some running shoes and decided to run 3km the first day back after not running for months. The worst part...he wasn't to affected by it. Again, SOMEONE HOLD ME, as if that is going to happen for me.

- In other news...Nick is boring so there is no more news.


- I have been dealing with my health over the last few months, my health sucks.
For those who don't know, which is most of you I was diagnosed with Crohnes when I was fifteen. They then changed my diagnosis to Ulcerative Colitis and then back to Crohnes. SoI really don't know what I exactly have..but let me tell you what ever it is NO longer in remission. I had a few troubles after I had Josh loosing 45 pounds in just 4 weeks, but got meds and got it under control. Since then I have had nothing, until now. I have been suffering with nausea and pain for a few months now. I guess I had a little flare up last week and ended up in the Emerge to get some fluids, they would have liked to keep me so I could see the GI alot sooner. My appointment had been for July and the ER Dr. said I couldn't wait that long. I agree! But I am not able to go into the hospital for a week or so at this point. So I went home and have been doing ok. My appointment has been moved up to April 12th and I am really happy about it! I am ALOT more tired, it's not just my brain thats tired body is SO tired. But I just tell myself, "suck it up princess" and I seem to be ok! 

- Paper..I have SO much paper coming from every direction to work on. I just re organized all Masons Medical files and papers, since the advicate needs them. I am in the middle of filling out 37 pages of a paperwork for them as well. And then there is Josh's school papers for enrolment for next year, as well as we are asking for assistance to keep him there. Still in a fight with the government about the $6000 owing. When really they should owe us THOUSANDS!

- Blog design business is doing well and I am now working for another HUGE designer 
April Showers. This has been a huge blessing as Money has/is so tight! But it is another thing on my plate...good thing its something I enjoy! 

- I got a great pair of running shoes that have yet to come out of the box...hoping I get up the nerves soon.

- THE HOUSE HUNT IS STILL ON! We have yet to find a house that we like that the owners haven't turned around to decide they are selling instead. Ugh. God will provide a house...he will! 

Coming Events:

Mason's 3rd Birthday is March 15!
- Gifts of jeans in size three would be lovely...(cough..Family are you listening??) LOL

Dana's 27th Birthday is March 23rd and I am feeling alot older. There seems to be a feeling of a huge difference in 26 to 27. 
-I need a gift too..LOL NEED. Ok I don't need...but I really WANT this.
I WANT it to say, "In him I trust" on the front & "For those I luv" on the backside. Also with the Sturdy Fine link chain. (Hint Hint) 
::wink wink:: 
Did you get the mesage? LOL 

*Want is not Need. And I really don't need. Which kinda stinks..LOL Love you all anyways :) 

Since I seem to be rambling...I am going to stop.

Check in for my next post which is HALF written...
Topic: "Retarded"