July 16, 2010

It has been a week or two.

Where to start?

i am sitting here.
i don't even know where to start...
i feel empty.

Joshua started his summer school program last week.
it has been awesome...
he loves it.
they are doing crazy experiments & cooking everyday.
the mornings at home have been so much better for Mason too.
i feel like September is going to bring a little more peace at home & Josh is really going to enjoy himself at school full time.

Carter had his development scored this past week & he is a tad bit behind.
but i'm not worried...
he'll catch up.
he is pointing at everything & pointing to what he wants!
in 13 days Carter will be 1 years old.
it's crazy to think my babies are going to be gone.

Mason has been thrown through the wringer the last two weeks, especially this last week.
his 8 weeks of OT therapy has started & it is feeling good.
Mason is loving the activities & i think is doing well.
the OT is coming up with ideas to help us & genuinely seems to want to help.
we will need to get a fair amount of therapy equiptment to be able to help M with day 2 day life.
can you say $$$?

this last week has been crazy.
sunday we went to church, came home, the boys napped.
as Nick started to cut the grass M's feeding pump started to alarm.
great it's sunday & the pharmacy with loaners is closed...
now what?
so we headed down to BC Children's Hospital Emerge.
they had a pump we could borrow until we could go pick one up monday morning.
they only thing was it had to stay up on an IV pole & the tube wasn't long enough for Mason to sit on the floor to play and the pole was to big for him to push by himself.
it would be ok...
we'll get the portable pump on monday.
we decided to go to evening church on our way home.
Mason had a good time getting rides from daddy on the iv pole.

it's now monday morning & M found his spot on the couch.
i called the pharmacy as soon as they opened...
no pump.
(insert a lot of steam coming from my ears)
i am now extremely frustrated & i have no idea what i am going to do for Mason.
so what else do i do but turn to Twitter & Facebook.
thank goodness for Curt who just happens to manage a medical supply company.
a phone call later, i am phoning & arranging for Mason's loaner pump directly through the Pump's company.
with Mason stuck on the couch for one more whole day the pump should be here tuesday morning.
which is when we were headed back to Children's for Mason's 24 hr PH Prob test.
they shoved a tube in his nose and down his throat...
my poor boy.
the test was to measure the reflux coming up & going down to see if it's the reason why M is doing so poorly with swallowing & drooling like a mad man!
get home from the hospital, tube in nose...
no pump...
it's the couch for mason, this is day 2.5.
wednesday comes & still no pump...
now i'm pumped...
ready to yell at whomever gets in my way.
Mason will not spend another day on the couch!
several calls later i find out the package was supposed to have been at our house by 9am tuesday.
a call to Purolater to find out my address in invalid & they won't deliver the package.
i tell them my address isn't invalid...
infact i have a Purolater sticker on my door so that mason's monthly packages can get dropped off without a signature.
but they won't deliver it.
so i head out with mason go pick up his loaner pump...
it's dead.
head home to plug it in...
then head to Children's to get the tube out & hand in our journal logs & be done with Children's this week.

Fact: did you know that if M had government coverage we would have had a back up pump. it would have saved us x2 trips to children's and a trip to langley and more important 3.5 days of being stuck on the couch when we weren't at the hospital.

ran into a Mom who has a child very similar to Mason, except older.
her child was born at 24 weeks & has had alot of the same issues...
but there differences.
this family knows how we feel...
but it scares me b/c it shows what can happen with aspiration issues.
this other child has been in the hospital almost monthly since M got his tube.

now we are waiting for results of M's sleep study & his PH Prob study.
let you know when we know!

on a better note we met with our new pediatrician today.
he seems really good & right away with no history could read M & understand the care he takes & needs.
he needs one week to read all M's history & he'll get back to us with his plan.
guess what...pediatricians are supposed to manage all care.
this guy sounds good & has a good track record with several people we have talked to.
so maybe I will get to be Mommy instead of playing Dr. all the time.

here's hoping with all these new Drs. & new tests & new people who care...
that things will just get better.
we will finally get some support...
i am so tired & i am loosing steam.
i am headed to the Dr. next week.
i am still not better after Carter's pregnancy.
it's been almost a year...something needs to change.

it has been a week & i am done with it.
only a couple days & it's done.
starting fresh on Sunday.
church will start my week.

~I can do all things through Christ who gives me strength~
Philippians 4:13

1 comment:

  1. Wow - that was a week and a half in 3 days!!! I am praying for you all. Time to start researching creative fundraising for the Sears Family!!!!