PASTOR

Say WHAT ?
My husband is
Pastor Dave....

Rebekah has been very sick all week and it has been tough.
When I look at her beautiful face I know we are blessed.

It was awesome to do fun things together as a family.
If you do not have a special needs child or medical fragile child
you have no idea what a day looks like and neither did I until I lived it.

I am very thankful for Make A Wish !!

We were asked to do an interview for Make A Wish  and also to be
interviewed by our local television station.  Pastor Dave declined.

All month I have been thinking about everything I am Thankful for.
Anxious to share food and fellowship with family.

HAPPY THANKSGIVING

MAKE A WISH

Because of Rebekah's Lissencephaly diagnosis
MAKE A WISH of Maine sent our family
to Give Kids the World in Florida last week.

Limo to the airport, airplane to Florida..
all the kids were great on the flights,Disney passes !!

It was amazing !!
And  overwhelming at times because we did not have
Rebekah'a  stroller/wheel chair ( long frustrating story)
And boy was it hot every day.

Anna and Elsa were a hit with some but poor Hrutuja has
never seen Characters before so she was a little afraid.
Give Kids the World has thousands of volunteers !!!

Just awesome family time together.

THINKING

There s not a day that goes by that I do not think
about the millions of orphans everywhere that need
families, they need to get medical help.

STILL PRAYING TO CHANGE THE PICTURE
ABOVE BY ADDING MORE FACES. !!!!!!!!!!!!

WHAT A DAY

Yesterday was a doozie !
It started when the screen door handle fell off as I
opened the door to take the dog out.
After getting 2 kids on the bus and driving the other
2 to school I drove strait to Portland because Rebekah
had an eye doctor appointment @ 9:15.  They are dilating
her eyes this time to make sure that her eyes are working
the way they are suppose to. After they dilate her eyes we
go wait in the waiting room 30-40 mins. So we went to the
rest room to change her diaper.   Make-a-Wish called with a
get together date, ok. I get a text from my older daughter and
Austin calls to tell me that Grampa called from Florida ??
I am thinking something is up?   At 11:20 they finally call
Rebekah's name to go back into the office. The assistant says
" I need to check her eyes to see if they have dilated" so I
say" they should be it has been 1 hour and 20 mins since you
dilated them." The doctor comes in and apologizes for the
wait....I am biting my tongue !!
He makes a comment about her Cortical Vision Impairment
and I say " well, she does have Lissencephaly, her eyes can
not tell her smooth brain what they are seeing...  :(
Anyways, I got home @ 1o'clock. Talked to Grampa and his
oldest daughter passed away from lung cancer.
Why do I have to be a big girl and tell mom ???
I was talking to her about it when Austin called and said
"he just got into an accident",  uggg     He is ok
Glad he has a truck !

What a day !!

Today Rebekah is not doing well, she is coughing a lot
and had 2 seizures after school. 


 

SNOW

Today was cold outside, the mountains received 1-3 inches
of snow today.  I am not ready for winter.

Rebekah is slowly getting better.
She had another Barium Swallow Test done which she failed again.
So still feeding by g-tube.

Now Rohana and Austin have colds... uggg
Just thinking that I have one in college, 2 in private school,
2 in public school and one in pre school. No wonder we have
a lot of germs to pass around.

ANOTHER OVER NIGHT

A week ago Sunday Rebekah had a different looking
seizure, which scared me, so I called the Neurologist.
during the week she had a temperature that went away
in a couple hours ?? So I kept her home from preschool
on Thursday to lots of vest therapy and inhalers, which
worked. She did great Friday and Saturday but Sunday
morning she woke up all congested, coughing, even
vomited because she coughed so much. She was not breathing
good at all..... I called doctors office @ 8 and got "bring her
in @ 9:45. I get there and the doctor on call said
" Had they told me it was Rebekah, I would of told them to tell
you to go strait to Maine Medical Center"..... ugggg
Finally around 4:30 they admitted her because her o2 stats were low.
She has a lung infection...viral  ..bronchitis ..
A short night and long day but we are home now.

KICKING

At the beginning of the week I was just praying to get thru
the week because I knew it was going to be busy... well by the
time Wednesday night rolled around I was not feeling good.
Thursday morning I put 2 kids on the bus and  as I was driving
2 kids to their Christian School I prayed to just make it there safely.
And I did, thank you Jesus !
I slowly moved thru getting Rebekah ready to drive her to school
today because no transportation was available.. ugg
a 45 minute drive and I really think God had the wheel.
After dropping her off at school I parked in the school parking lot
and slept off and on for the 3.5 hours.. it helped a little.
Slept most of the rest of the day and night..
What ever I have is really kicking my butt !!
Saturday am, everyone has a cold !!!
Sunday, Rebekah's oxygen levels are low so we did vest therapy
She is having seizures.. I panicked, called neurologist.
After a little more meds she seams to be doing better.

Praying the sickness leaves this house