March 30, 2010

mixed emotions.


it was a long wait...
but i believe it was worth it.
we met with Dr. B...
mason's NEW neurologist.

he right away wanted to figure mason out...
he wanted to help.
he saw there is a problem...
he understood there needs to be an answer.
there needs to be a reason mason is who mason is.

we talked & agreed mason's biggest problem is his airway protection...
he inability or willingness to eat...
and/or for his brain to send the complex functions needed to swallow.
but this Dr. is the second person to mention the A word.
in fact he was adimit that mason needs to be assessed.
mason fits in many of the little boxes...
just does he fit in enough?
do we even want to go there?

he feels so strongly about what needs to happen.
really nice seeing a dr. who has good intentions & wants to help as much as he can.

the following is a copy of the report he has given me to show other Dr.'s before the formal draft can be done & sent out.

1. Severe Developmental oral motor dyspraxia.
2. Feeding disorder
3. Recurrent aspiration
4. Severe hyperactivity, aggressive, & sensory aversions, with multiple obsessive-compulsive behaviors. (Perseveration)
5. Abnormal/delayed speech & language with reduced empathy.
(Autistic like?)

Instructions/Follow up:
1. To see Dr. Myles Blank (Child Psychologist) for following examination and review, April 13, 2010.
2. Will be referred for elective MRI scan to exclude....
3. Suggest referral to Genetics for evaluation for possible genetic causes...
4. Mason's mother to have the following tests....
5. Consider formal autism assessment.

That sums up the visit with Dr. B.


we finally saw our consultation team today.
mason doesn't have any proper therapists yet...
we are still 17 months away.
so our consultation team consists of:
dietician~ she thinks mason is doing better than he ever has been with his weight. YAHOO!!!
speech pathologist~ who until now has told us nothing, but since A was brought up she could tell us she has seen several signs of it for the past 6 months. because she is only a consultation speech...she couldn't tell me that she was thinking it's a possibility, until I asked.
occupational therapist~ she is new to the team & she is going to do a 1 time assessment at our home, just to give us an idea of his sensory issues & what to do with them.

we also were told that mason will never receive the therapy he needs here in BC.
today we were recommended to move to alberta...
for what feels like the millionth time.

we were also told about a couple private clinics by each of the professionals we have talked to in the last few days.

the assessment mason needs is going to be $2000-$3000 at the private clinic.
but we will find out right away their diagnose & it will help us get mason more recognized.
if we get mason put on the government payed list it would be 28-36 months before he is looked at.
then a five month wait to get the results.
if mason truly has A...
he needs help now.
so we are going to somehow have mason assessed at Able Clinic.
it seems like we fall through the cracks everywhere we go...

so to raise $2000.

$2000 is something we just don't have.
we are looking for your ideas for a great fundraiser for mason.
this time the money will go directly to mason being assessed...
to helping us put a face to what mason is going through & how to help him.
when mason is assessed they will come up with ideas of who mason is...
a diagnose.
& this could help us get funded...
both for his feeding & his therapies.

we aren't asking for your money...
we want to DO something to raise this money.

so PLEASE leave your ideas for me...
i am flat out of ideas!

tomorrow is a new day...
with yet another mason appointment.


  1. We should give to the Rotary and there is the Lions club as well.... I will get you the details on how to present.... he says to ask for $1000 from each and then see what you get...

  2. A church garage sale? In the states we can go to places like Sams or Walmart and ask for a donation for a raffle prize! Then sell the tickets at the garage sale and someone wins what they donate. Sometimes it is a gift card, sometimes lawn furniture or something like that. Lots of people will come up with 2 bucks if they think they can win something. I would be happy to print the raffle tickets for you. Each department manager is given an amount they can donate each month, make sure to hit up the sports departments. Maybe they would donate a basketball goal or something. I would also suggest setting up a paypal account for donations. Thinking of you, Nancy