Tuesday, July 31, 2007

Mikey's Big News!

One week ago today Mikey went to the ENT and got a speaking valve! We have been working with a wonderful speech therapist, Liz, who agreed with us that Mikey needs to hear himself when he wants to communicate. So the whistling sound I used to hear when he cries, is now just that, HIS cry. It's the most wonderful thing I have ever heard!

I now feel like a true Mom. I can tell when my little boy is sad, hurt, hungry or just plain wants his Mommy. It's the best feeling in the world to be able to comfort him like that.

Mikey has been doing really well with therapies and at the doctor appts. He has a super PT that is working with his arching and muscles to be able to sit up. Mikey just loves it when Maria comes to work him out. She is the only one who can get him to relax in a good midline position.

Dr. Montgomery is an awsome pediatrician who follows him every month with his G-tube feedings, trach care and all the other typical baby stuff.

Mikey has 7 other doctor appts. this month so I hope you can understand if we don't always update the blog as much as we want to. We are sorry for that.

We will continue to update everyone with HIS progress, us and the girls.

Thanks for continuing to read and send comments. We really love to hear from you.

New video and pics, coming soon!!


Friday, July 6, 2007

A Day in the Life of Mikey's Mom & Dad

For All of you who might not understand why we can't
return emails fast enough, phone calls or respond with
the proper thank you that we'd like to...here is what
a typical day can be like with a special needs baby.

The day begins at 12:00am where both of us will be
doing an overnight shift because we do not have the
full week covered with night nurses. Mike sleeps from
8:00pm to 2:00am while I stay awake with Mikey.
Then I get to go to bed at 2:00am and sleep until 7:30am.
I awake, usually to the beautiful face of Emmepaige
greeting me with a snuggle and wild bed head!

We cuddle for a little bit...then I usually pop out of bed
because I hear the sound of my baby crying
(sounds like heavy wind screeching through the trach)
because it's bathtime and he doesn't always like his bath.
(it prevents him from arching, a typical response of what
we think is cerebral palsy, although the Drs. won't say it)

I try and calm him down while the nurse, who comes
around 8:00am some days, can finish his morning routine.
He then falls asleep in my arms and I am happy to spend
some cuddle time with him. In the meantime, while Mike
trys to start his day, footsteps come down the stairs
and it's my other princess, Michailey, looking with a
smile to say good morning to her brother, after she
purell's her hands. She always remembers to do that.

I then tell the girls to help themselves to breakfast
until I soak up the rest of my boy's sweet love as he
cuddles into me.

In the meantime, the girls have finished their
breakfast, turned on the TV and I don't see them for
awhile. So I begin to try and catch up on
Mikey's to-do-list that looks something like this.

1-call various Drs. and set up appts.
2-call the supply place and order more of the
equipment that I didn't receive or need more of.
4-call the agency and beg for more nurses but pled for
them to be competent to care for my infant son!
5-call the G-tube supply place for supplies because
the trach stuff and g-tube equipment come from 2
different offices.
6-organize paperwork which consist of bills, therapy
info, business cards, notes, dr. appts, etc.
7-cordinate the therapists for this month and ask for
a schedule for next.
8-call SKIP of NY (who is wonderful by the way) and
talk with Mikey's case worker to keep the comunication
going about his care and what needs to be done next in
order to get some of the things that Mikey needs like
a generator, a/c, bendy bumper, wedge, etc.
9-continue to think of ways to organize his care, new
updates, procedures, with the nurses, therapists and

Then I might take a break and call a good friend or
family member to update them, just to talk or vent
about any problem that happened that day or night
before. (Thanks for listening!)

Check on the girls who by now have the back room filled
with toys, books, cereal boxs and snacks all over.
Now I have to ask them to clean it up and then of
course it's whining and arguing about who messed up
what. Let them work it out because the phone just
rang again.

By this time a therapist has come for his appt. and
now I try to get a quick shower in so I can be there
watching and learning what new things they are doing
with him, so I can continue to do them with him later
that day and week.

The girls want attention and lunch at some point and
then I call for Mike, who is always way behind on his
work but always makes the time to come in and help.
He feeds the girls a late lunch and by this time I
break too for a quick bite, only to realize that the
nurse will be going home soon and I have housework to
do. (ok so the housework never really gets done)
Hence the messy upstairs I never let anyone see!

Now it's dinner time and we are all on Mikey duty.
(all meaning-the girls too) Michailey helps suction,
while Emme sings, kisses or just cuddles him. I clear
off the paperwork and junk off the table to set it,
while Mike cooks. (shortened work day again, but
knowing he can make some of it up on the weekend or on
the night shift)

We take shifts in eating our dinner due to Mikey's
suctioning needs. Then it's time to clean up and sit
for 30 minutes. Oh but wait, it's bath night for the
girls and then get them ready for bed. Mommy reads them a
book, while Daddy sits with Mikey annnnnnd...switch!
Daddy then usually falls asleep after tucking them in
and I wait for a nurse who helps out with some of
the night shifts, give her the update and then join my
snoring husband in bed.

And the next morning...it starts all over again.

So for those of you who DO understand when we don't
always call back right away and changing the time we
were going to meet or plans that day...THANK YOU! You
have no idea how nice it is to have that support and
understanding even though you don't know how it has
been for us that day.

Thanks for continuing to read the blog, pray for us
and listen. It's nice to know that people still care,
look and read about our life.

I am starting to know what it's like to live the "new
normal", and it's ok.

God Bless.