| The O'Neill
Family Journal!
June 17, 2004 to present
June 17:
Today was Casey's last day of school. He
brought in his gifts for his teachers today. He had a card and a bracelet for his
buddy, Samantha. Casey got to meet Mrs. Gage who will be his Second Grade teacher.
She is very excited to have him in her class! She gave him a shiny notebook
to write down things that he does over the summer.
So, Gene had his
specialists appointments at Dartmouth-Hitchcock yesterday. He had been to several
docs/neurologists here and they didn't really know what to do with him! He had the
"water" test done here, MRI, etc., with no conclusive results.
Gene isn't even sure what "kind" of doc this
was, but he was an Ear, Nose, Throat guy with lots of initials after MD! First they
gave him a regular physical. Then they sent him for a hearing test. The
hearing test was normal--some hearing was above average and some a bit below--essentially
normal.
Then he went to the specialist guy and talked a
lot. They had him go in this very high tech machine. He was in a parachute
harness in a machine with 3 walls and a floor. They had him keep his eyes open and
they moved the 3 walls around. Then he did it with his eyes shut. Then
they moved the floor around with his eyes open and then shut. Very wild, Gene
said! Some how it was all computerized and made graphs of "stuff" using
his weight and height and his movements.
Another thing the doc did was have him march 50 paces
with his eyes shut. When Gene opened them, he had turned 90%! The doc thought
that would happen. His best guess is that several years ago he had a bad cold/sinus
infection that affected his inner ear, and the damage did not repair itself yet. He
said that you use your nerves in your feet, your eyes and your ears for balance and when
one is affected, the dizziness happens. Okay, so that was not the best explanation,
but it's something like that!
The doc gave him some "exercises" to try to
train his ears to "behave" properly again. Very interesting stuff.
He's supposed to go back in two months... OH, I FORGOT also that the doc said to cut our
ALL nutrasweet and aspartame. He said that the stuff is BAD and can affect nerves
and stuff in you body--like the ears (oh and he said lay off caffeine, too). He
believes that in two months that if he changes those things in his diet and does those
exercises, he will be much improved and feel better. We can hope and pray!!! I
didn't realize how much this was really bugging him until recently. He felt
awful last night and "made" the boys go to bed early because he felt so
"ugh." And, we had some large tree limbs fall down in our yard that need
to be taken care of. I asked him about when/how he was going to do it and he said he
didn't know because he didn't think he could handle using the chain saw.
Yikes! That is sooo not like Gene!
July 15:
Please send us prayers for an uneventful day
tomorrow. Casey is getting a flexible bronchoscopy. It's his first ever.
The docs just want to see how he's doing in there and see if he has any scar
tissue and just to make sure all looks well. I hope they can tell if he needs
to go up in trach size. We're having our two favorite docs do it (PICU doc and
pulmonologist). It should be a quick, easy thing...he does need an IV and will be
sedated so that part is scary to me. Afterwards we plan on making a quick stop to
Barnes and Nobles to pick up a few Boxcar children books, Casey's new favorite!
July 16:
We had a smoooth time
at Casey's appointment! Thanks for the thoughts and prayers. Poor Casey had to
get up at about 5:15 AM to be ready to leave the house at 6:30. We actually made it
out by 6:35. Checked in and got to the floor. We had his vitals done and
weighed him. They put Emla cream on his hands and feet and let it sit for about an
hour. Casey had fun torturing Nurse Nancy and I by yelling at the TV because we
couldn't find any good shows!
The nurse came in to place his IV. She was
really good. She was a NICU nurse so she knows little veins. She missed one
hand, so she tried his foot and got it. Then we had a bit to wait. Transport
got him and we wheeled down. They were soooo good down there. Anesthesia gave
him a bit of lydocaine and then propraphol to put him out. The docs let Nancy and I
stay in the room and watch. It was really cool. They went right down his
trach with the camera thing. It showed up on the TV. His trach is PERFECT!!!
NO scar tissue, NO granulation tissue, no weird anything!!! It was dry, too,
in a good way they said. They could see three separate septums (I think). One
in a little smooshed from laying on his side a lot, but everything looked really clear.
They said they'd never seen such a beautiful site!! They didn't recommend
going up in trach size or changing any settings. After the procedure, he woke right
up and was feeling great! We went up to the room for a few minutes and did another
set of vitals and then we were free to go.
We went and visited the PICU and saw some of
Casey's nurses and RTs from his earlier stays.
Then we went to Aunt Chris's to water her plants.
Then we went to Barnes & Noble and checked out
lots of books. Casey got 3 Boxcar Children and 3 Magic Treehouse books. I
picked up a treasury for Colin, 365 Stories & Rhymes for Boys.
July 23:
I don't have the words or strength to
write...I am taking Monica's words...
Our sweet, beautiful, brave Taleah earned her
angel wings this evening.
I can't yet make myself really believe it.
She was strong and healthy with no sign of problems. Somehow, her monitor got turned
off and bipap got bumped and unplugged. We figure she aspirated and went very, very
quickly.
She passed quietly without even disturbing
any of her siblings who were all in the living room watching Little Mermaid with her.
When John checked on her she had already flown.
We are heartbroken beyond words, beyond
expression. We held her and held her and loved her. I ran my fingers through
her hair for hours as different family members arrived to say goodbye.
Her fourth birthday is day after tomorrow, she
would have been four.
We are planning on having her funeral on Monday,
we don't know where yet. I would really like a funeral outdoors for
her.
The house seems so empty, so quiet.
Monica
Taleah Louise English July 24, 2000 - July 22,
2004
This will always be my favorite picture of Tia!
July 25:
I guess I don't get out a lot. And, when I
do, I am usually with the boys or at least someone. Today I met my sister
at her condo to go shopping. Gene had both boys. We had a nice time shopping
and then went out to lunch at '99'. I was cruising the interstate on the way home,
listening to the radio, winding down--finally. I can't remember the last time I
really let go and relaxed. Well, it felt GOOD! I forget what the open road can
do for my soul!! Then, I started hearing melancholy songs like Creed's Arms Wide
Open and Sarah McLaughlin's Angel and Natalie Merchant's "oh, I forget
the name...but I'll bet you all know which one I mean...Through all this I started
bawling...sad kind of bawling but also very freeing. THEN, the kicker..."Tiny
Dancer" by Elton John, which is Mia's song. I freaked. THESE ARE ALL
songs I associate with SMA and they were all in a row! I was so wound up I called
Kim on my cell. I had to go past my exit because my eyes were all red and I didn't
want to face Gene and my in-laws with a blotchy face. Anyway, I feel better but
still raw. Not sure why I shared all this!
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