Saturday, May 9, 2009

Saturday's Post...but actually for thursday...

....these are thursday's photos...

We are ecstatic at the results!!

At our followup on Thurs, Dr. G said that
we only need one more surgery. Due to
all our schedules we are looking at August
to get the cheek implant (slides through
the upper portion of the mouth to fill in
the cheek area) and insertion of fat into
the upper eyelid. I offered for Dr. G to use
my fat but he said that wouldn't be happening.
Not sure where he's gonna find an ounce of
fat on Taylor...but I guess we have 4 months
to fatten him up!

A picture with our wonderful hosts before we
took off Thursday afternoon for home...

Friday, May 8, 2009

skipped thurs, it's friday!

Got a fabulous report from the Dr so we jumped in the tahoe, and went to Hollys and packed up and did an all night drive to get home! So it's friday a.m. and I will post pics later today. Everything is awesome and we are now home.... check back later!


Wednesday, May 6, 2009

Wed, Day 6...making great progress!!

Bryan flies in at noon tomorrow and Tay's
appointment is at 3. We will know more then!

I can't imagine that Dr. Genecov won't give
the thumb's up to send us home for a couple of months
until he is ready
to start on surgery #2 (it's a series of 3).

Hugs to you all........

Tuesday, May 5, 2009

Tues, Day 5.........

It's always a good day when
you get to be with Aunt Holly!
The patient went to bed at 8p.m. last night
and didn't get up til almost noon!
Must have worked for him tho....

He had the energy to entertain me! Woohoo!

I had a couple of errands to run
and he was up to
going with me
to be the passenger as
long as we drove
at a slow........
steady pace....
if he could ride in the front seat....
could throw some Oakley's on his sweet face....
and make a Guitar Center stop!!!

On the way we dropped Oliver to daycare
so he could hang with his
"pups" (peeps in puppy language) and that
wore him out for the rest of the night.

Tay is on the couch with me as we speak.
Sounds good.
Looks good!
Feels much better.
Seeing the boys personality again. We are happy campers!

He ate fried rice from Pei Wei and even
had a couple of bites of dessert.
I think he's coming back to us!!

Bryan made it home safely where
he said it was 82 and blue skies!
Guess he spent some time on the Goldwing before he has to turn around and make his way back to us on thursday...

We'll see you tomorrow!!

Tues a.m........

Good morning! 10:30 and still waiting for Tay to wake up for the day. Bryan woke him up for a bit to get some "doctoring" done before he flew home so I wouldn't have to do it! He said that he felt that the swelling was down a bit more...

So he'll be up in a bit so he can be medicated. He did say he wasn't hurting too much when Bryan woke him up. It's such a good thing that he's sleeping. He's had a really difficult time maintaining sleep for a good length of time.

Also, Tay was able to have some solid food last nite (fried rice) and asked for some Ben and Jerry's while I was at the grocery store so maybe he'll be up to ice cream today. Also he got about 5 min of guitar playing in yesterday so that was good news! Got the guitar last week, not sure what brand but I guess it's a big deal and he's thrilled about it!

Thanks for checking in with us this a.m. and thank you for your prayers and support!

Will post more later when Tay's up and at 'em!

Monday, May 4, 2009

Monday Dr. Visit -- bye, bye tube...

Ever seen a cuter fella?

Move ahead 16 years!!

Appt at 10 a.m. in Dr. Genecov's office to get the
drainage tube removed. It's about a 45 minute drive
from Aunt Holly's house to the Dr's. Tay decided
to sit in the back seat...bad move....
goodbye liquid breakfast!

Poor guy..... Pretty wasted by the time we made it
for the appointment.
Thus, the unhappy look on the face.
(Course we have a few of those pics over the last few days, don't we?)

Dr. and Nurse Kelly do the duty of cutting out the tube and removing it. Hallelujah!!

Next appointment on Thursday. So far, so good. May get the go ahead to go home at that point. We will see. Not sure when able to get back to work---that seemed to be more of an unknown at this time.

Tay's Dad (Bryan) flies home tomorrow and back on thursday before the appointment so we will see!

We had Tay back home by noon.
He was able to keep down a
half can of chicken noodle soup!
Yay! He seems to be feeling
some better and is moving
about some!!

Sunday, May 3, 2009

Evening of Day 3...

How's Tay today?
Question of the day!

Well, some better. He did eat half a can of chicken noodle soup and had some protein shake. Good news, I guess, is that he's losing a little weight. (LOL) He got up for a little bit (5 minutes) in the living room to hang with his family, and then it was back to bed. All in all though, I think he is doing some better.

This first pic shows how incredible the comparison of the temple looks as well as the bottom eyelid. Wow!
However, we still have a swollen jaw...
but that shall pass!

Monday. 10 a.m. (tomorrow)
Dr's visit and the tube gets pulled!
This is the first step to feeling better.

Tay can hardly wait!

Next post will be after the Dr's visit.
Thanks for all your prayers.
We are grateful for each of you.

Day 3...

For those of you who have asked, and those of you who haven't, but have wondered.... yes, Taylor is fine with this blog and has been very cooperative. He knows he's very loved, people are concerned and people are curious!

So... Here we go....
Taylor had a fair night. Said he was up a couple of times, couldn't sleep. He's got his computer and phone h
andy so I'm sure he was able to get a "Scrubs" episode under his belt.

He's drank
a little apple juice and half a can of chicken noodle soup. Due to the hole in his mouth, he's decided he can't eat anything...just the soft stuff. Maybe some chocolate pudding would be a good idea?

His aunt wants to make him some chewy, chocolate brownies... I suggested she make them up, not cook them, and he can just eat the batter. Have to be with a spoon though... no straw - Dr's Orders.

The main difference today is the fat, chipmunk cheek that he acquired during the night. Looks like he had a wisdom tooth pulled!

The most wonderful thing that we did was bring Oliver with us! He thinks Taylor hung the moon, so he's a little upset that Tay isn't his normal self, so...he's making sure he's there to make Tay feel better!

Saturday, May 2, 2009

Day After Surgery

May 2...

This picture was taken on Tay's way home from the hospital the day after surgery.
He had a rough night with an upset stomach and some spikes in temperature. He chose to forego his breakfast of apple juice, chicken broth, coffee and jello.

The Dr came in mid-morning and decided not to discharge Taylor until possibly later in the day.

During the day he did get better and was released about 4p.m. His home for the next 10 days is his Aunt Holly's and Uncle Jim's in Arlington.
He goes to the Dr. this monday a.m. to hopefully get the drain tube removed. This has been the most painful & irritating thing to this point he has said.

He comes "home" to antibiotics, pain meds, peroxide blend for side of the head, eye drops and a mouth-swisher. Tonight he was able to get some broth down (and has kept it down so far), and has been watching a little TV.

Looks a little "beat up" the day after surgery....

Taylor's Reconstruction Surgery #1

At age 3 and a half, Taylor was diagnosed with Retinoblastoma. After radiation treatments and various treatments, Taylor had to have his left eye removed (enuecliated) at age 4 to keep the cancer from traveling through the optic nerve and throughout the rest of his body. When left untreated, Retinoblastoma is deadly and travels at a rampant pace.

Skip ahead 16 years.....

Due to the radiation treatments, Taylor's left temple did not grow while the rest of his bones grew at a normal rate. This created a groove at the temple and the face to not be symmetrical. The lower left eyelid has began to droop even though this was corrected when in 5th grade. The other concern is the upper eyelid to have more mobility.

So now you know what has landed Taylor at Forest Park Medical Center, Dallas, TX
in the hands of Dr. David Genecov.

Taylor prior to surgery ... chilling and texting.......

Pre-Op: Taylor had to be stuck twice to find a vein...

The surgery lasted about 2 and a half hours.

After the surgery....some swelling, but the left temple, looks amazing.... You can see the outline that the Dr used as a guideline to put the "bone paste" into the temple. A syringe is used to inject the paste, and it will begin to harden once it hits 98 degrees. Once it is inserted, the Dr. molded and worked with it to match the other side of the face. Caution will have to be used over the next week to make sure that nothing hits or touches the area. He can't wear a hat, bandage, etc. Right now he can't wear his glasses since the stem will push on the area.

The yellow is betadine that was used to swab the area prior to surgery and it still hangs around once it's all over. The red line on the scalp is where the surgeon cut the area, to feed the "bone paste" to the temple.....
Not sure how many stitches are there that he used to sew him up, but there was zero shaving. Got to keep all the hair! The drain tube was inserted between the skull and the skin to relieve pressure and will be removed on Monday. It goes down into a "grenade" that has to be emptied periodically. I offered to pay the Dr. to sew up the holes in Tay's earlobes....they are still there.

Not pictured is the huge hole at the roof of Taylor's mouth. It's about the size of 1/3 of the pinky finger. They use the mouth tissue to fill in the bottom lid. They do this by cutting inside the eyelid (from side to side) and putting the tissue in that area. After suturing the lid, sutures were put in place to pull the area up and taped to the forehead. This will give the area time to heal properly.

More to come..........

Taylor with Dr. David Genecov.