|
9/13/02
Here's the latest update from school:
Dear Mike and Gina,
Zach has been absolutely wonderful to work with...he's excited
about
being back in school...he greets everyone by name as they enter
the
room. We are more structured this year offering "centers"
of activities
rather than "free play" when they first arrive at school.
This has
worked out so much better and the kids play so well together.
Zach was working at the "Play dough station" , he
was rolling out
play dough and using the "hand" cookie cutter to make
a hand....after he
was finished and satisfied that it was just right...he says..."Look
Lisa...it's a hand.."....then he throws it on the table
and slaps
it---saying..."High Five hand"...then picks it up...and
says
"Knuckles"...and precedes to put his knuckle prints
on it.......We were
all splitting!! During crafts...I said to him..."Zach, I
have an
idea....let's make a school bus!" He looks at me and smiles,
and says,
"Sandie, I have an idea too!!" Crafting wasn't one
of his favorite
things last year...but, he seems happy to work with us now. He
gets
along very well with the other kids...
I didn't see you at the Fairgrounds...otherwise we would have
stopped
for a quick "hi"....Our afternoon kiddos are so active...it
took all of
us---plus a few extra adult helpers to make sure our kids all
had two
adult eyes on them at all times!!! Zach was thrilled when I got
to be
his bus partner...and I have to tell you...remembering our bus
ride to
and from the fair last year....Zach was telling me all about
going to
the Fair and how he was going to see horses..."because I
love horses..."
(this is what he said....and then when we get there and I make
a special
point to get him to the horse...pick him up...he would have nothing
to
do with them!! Hehehe) He loved the petting zoo...we took lots
of
pictures...(I washed him with soap and water from top to bottom
after we
were finished touching all the animals.) He really laughed when
I took
him to see the chicks hatching out of the eggs...and they let
us pet
one...and I said to Zach..."Look Zach...it's a chicken nugget!!"
He
just laughed and laughed!!!
Zach said all the store names as we drove past them while
we were on the
bus....plus words like "Drive thru window" "Exit
only"...."Welcome to
McDonalds"...and then suddenly he'd say, "Are we there
yet?" I would
tell him not quite yet....and he'd say..."almost there?"
10/12/02
We arrived in California late yesterday afternoon for Zach's
yearly check up. We're again staying with our friends the Staffords
who we met through our church. We've had a nice time catching
up and it's been fun to see Zach and George (whose house we're
staying at), they have quite a bond. We went to the W.S.U. vs
Stanford game today, tomorrow we go to church with the Staffords
and then on Monday the appointments begin.
10/14/02
Zach and I arrived at 8 a.m. and got him registered. We got all
the insurance info out of the way and we had a little time before
we went to get our blood draw. As usual Zach took me straight
to the train set by radiology
.The blood draws at Stanford have always seemed to gone relatively
easily and this time was no exception. We were done shortly and
back to the train to wait for our 10 a.m. appointment for pulmonary
function tests.
Well, I guess you could sum up Zach's PFT's (pulmonary function
tests) with "you've got to start somewhere". This was
Zach's first time with PFT's and we weren't quite sure what to
expect. He's always been too little for them in the past. I'm
not sure they got much usable data but I was very proud of Zach
and how hard he tried to do his best to do what was asked of
him. There is a mouth piece that has one part that goes in his
mouth and a cover that goes over his mouth. Kathy, the technician
doing the tests, instructed Zach to do different things such
as breathing normally, taking as deep a breath as possible and
breathing out as far as possible. Zach wasn't real good at this
but considering he's only been able to blow out candles for less
than a year, I thought he did well. He also did a good job of
walking with Kathy for 6 minutes and then repeating the tests
when fatigued. Although I'm not sure fatigued is the right word
for it since I think Zach has great stamina that would rival
most non transplant kids his age.
10/15/02
Today was a day off for us so we took the boys to the beach.
Zach has been talking about the beach from the first day we said
we were going to California so it was fun to see him and Cole
get to play. Zach's pretty afraid of the water after getting
wiped out by a wave on our last vacation but he did have a lot
of fun making sand castles.
10/16/02
8:30 a.m. We we got to the hospital for Zach's bone density scan..
This was another first for us so we weren't quite sure what to
expect. It was a lot like x-ray so Zach new the drill. The only
problem is that with x-ray you only have to hold still for a
moment, with the bone density scan Zach needed to stay still
for a couple of minutes at a time. It took us several tries but
Zach did finally hold still long enough to do a reasonable good
scan of the hip and the lower spine, two of the places that osteoporosis
shows up first. Doing the whole body was out of the question
since Zach just couldn't hold still that long. By the way, the
reason for this test is because with a lung transplant Zach will
always be on the steroid prednisone which causes increased loss
of bone density.
9:00 a.m. We took Zach back over to the children's hospital
for his echocardiogram and EKG. Both tests we have on a regular
basis at home but they were extra thorough this time since they
are looking at Zach's aorta closely from his first surgery in
Spokane. There is a narrow spot in the aorta that was surgically
repaired when Zach was a couple of weeks old. There is a bit
of narrowing there so they are trying to decide if they need
to use a balloon to expand the spot that was repaired when the
do the heart cath. tomorrow.
10:25 We took Zach in to clinic "C" for his annual
visit. That's where we get to see the doctors and have our visit.
I have to admit it gets harder and harder for me to remember
all the new doctors we meet. Dr. Theodore was there but he is
in or heading for semi-retirement so we will eventually have
new doctors but all the doctors are VERY sharp so we feel like
we're in good hands.
10/17/02
6:30 a.m. We arrived at children's hospital admitting and then
were sent up to the second floor. We're pretty familiar with
heart caths but this will be the first bronchoscopy since shortly
after the transplant. Although Zach is too small to take a tissue
sample from during the bronchoscopy, they will do a lavage which
is just rinsing out the lungs and collecting the fluid to look
for cells that show signs of inflammation. Inflammation can mean
rejection.
12:00 Everything went as well as can be expected. They had
to put pressure on Zach's femoral artery is his groin area for
about an hour after the heart cath to get the bleeding to stop.
The Dr. who did the heart cath. stopped and talked to me to tell
me everything looked great. I was a little disappointed that
Dr. Conrad who did the bronchoscopy didn't come and talk to me
but I will call her next week to find out what went on. I also
was a little upset that they didn't come get me sooner to be
with Zach while he was coming off the anastethia but we finally
have all the testing done and that's what is important.
10/18/02
We intentionally didn't fly home today because we wanted to give
Zach a day to recover. Last night he was still pretty sore and
grumpy. This morning he was up early and running around. In fact
we had to keep trying to get him not to run around so much because
we were worried the bleeding might start again from where the
went into the artery in his groin. He's very bruised down there
but otherwise he's doing great.
11/19/02
Zach's speech therapy at St. Luke's continues to go well. Right
now we are working on that tricky letter "F". But Zach
and Mindy (his speech therapist) are making great progress.
1/12/03
Zach's doing well, other than a minor adjustment to his Prograf
dosage and a cold there's been nothing remarkable medically for
him the last month.
Socially Zach continues to catch up. While he's made tremendous
progress we still occasionally have some funny things happen
on the way to learning. On Christmas before church I explained
to Zach that we had to go to church because it was Jesus' birthday.
Well Zach got his important birthdays mixed up and told everyone
it was Chucky Cheese's birthday!
This morning we weren't watching Zach and he broke 10 eggs
into his cereal bowl and poured a whole bottle of creamer into
the coffee pot. He was making breakfast for his dad!
2/13/03
Well this is the big day Zach's been waiting for! Today is Zach's
6th birthday. We plan on spending the day at Chuck E. Cheese's
with the family and then on Saturday we'll have another party
in Yakima. Zach is Very excited.
Recent medical news is that Zach's therapy has advanced to
the group setting from individual speech therapy with Mindy.
Zach will take part in a tasting group that will help him and
other finicky eaters try new foods. Luckily for us Mindy Zach's
speech therapist is involved with that group so her and Zach
can continue working together.
Recent financial news includes continuation of help from the
state through the division of developmental disabilities for
Zach. This help allows us to handle medical expenses without
having to worry about cutting back on therapy to do it.
Zach is growing and experiencing life and entertaining us
every day. Last week when we weren't watching he used one of
the toilets in the bathroom display area at Home Depot. Thankfully
it was only #1. We apologized profusely and promptly headed for
the registers. A little embarrassing but you can't help but laugh.
2/21/03
Zach recently had his first Dentist appointment with Dr. Andrew
Garabedian. (Yes he is the son of Zach's cardiologist). Zach
has three cavities and will need fillings on two teeth. The third
tooth may need capped, pulled or a root canal! Zach will have
to go to the hospital to have this done since he will have to
go under general anesthesia. One of the causes may be the high
sugar content of all the medications that he takes. Zach still
can't swallow pills so everything must be compounded into a syrup.
We will have a renewed commitment to brushing twice daily after
his medications.
3/30/03
It's been almost 10 days and it looks like Zach has made it through
his bouts with bugs. First he had an ear infection and then he
progressed to pneumonia. Ten days of Omnicef and the big guy
is being himself again (some times that's good and some times
not). We've been working a lot on discipline lately. The first
two years of his life Zach received almost no discipline since
he would faint (literally) whenever he did and after the transplant
Gina and I have had a hard time not feeling guilty for all he's
been through. Zach's had lot's of time outs lately and he must
sit with us at the table until he's excused. Like a lot of parents
with kids who have been through a lot we've done a pretty good
job of spoiling Zach but we're working hard on "tough love"
and hopefully the manners and behaviors will come around before
he's too big to tame. Zach and I have been having breakfast lately
while Gina and Zach's brother Cole sleep. I enjoy every minute
I get to spend with Zach although I'm still adjusting to my role
as the bad guy.
Next week we're using the sky miles I've accrued on my credit
card from working overtime and going to Disney Land. Both the
boys (and their parents) are very excited! |