Re-introduction and an Update
November 2, 1998
Dear Parents and Friends of the Heart,
It seems like there are a lot of news parents and friends out there lately so
I thought maybe some of us old-timers needed to re-introduce ourselves. I'm
happy to get us started....
My name is Anna Jaworski and my son, Alexander, has Hypoplastic Left Heart
Syndrome. He is now 4 years old and post-op the fenestrated Fontan. He is
very healthy and happy and is doing great! I also have a seven-year old son,
Joseph. My husband, Frank, is in graduate school right now. He was an ER
and ICU (actually CCU - cardiac critical care) nurse (RN) for 7 years but now
he is in school to become a nurse anesthetist. We just moved from Texas to
Florida in August and currently live in Panama City Beach.
Here's an update:
Alex has been doing great since we moved here, but I wanted him to have his
flu shot and meet his new pediatrician while he was well, so two weeks ago he
had an appointment. Alex did great and the doctor was very good with him.
He seemed genuinely surprised to see how well Alex is doing considering his
heart defect and he has no other children whom he treats with such a severe
heart condition. What impressed me most with this doctor were the
intelligent questions he asked and his openness at having me explain things
to him.
At one point he asked me what Alex's heart looked like now (post-fenestrated
Fontan) and I asked him if he'd like to see a picture. He said, "Yes!" and
looked puzzled at how I might have one. I then went on to tell him that I
had written a book about HLHS and my husband had done all the illustrations.
I showed him the pages where the surgeries are drawn out and explained the
Norwood and Fontan. This doctor was terrific. After seeing the pictures he
seemed to really understand it and he paged through the rest of the book. I
told him that he could have the book, that I had brought it for him. He was
really nice and told me that in situations like Alexander's he expects the
parents to know more about the child's condition than he does. He said that
he has many children to treat and can't be an expert at everything, but that
he is willing to listen and learn about his patients from their parents. I
was really impressed with his attitude.
Unfortunately, one of my fears was confirmed at the pediatrician's office.
Alexander failed the vision screening test. I had been suspecting that
something was wrong for a while now, but wasn't sure if it was because of his
age or if there really was a problem. Since both Frank and I wear glasses,
and have since childhood, it wasn't unforeseen that one or both of our
children would need glasses. So...
I got Alexander in for an examination at the optometrist's office. I
purposefully brought Joey along because he became very upset at the
pediatrician's office when Alex failed the screening. He started crying and
said, "I don't want Alex to get glasses." I am often overwhelmed by Joey's
compassion and love for his brother. I comforted him and reminded him that
both of his cousins and his parents wore glasses, so if Alex needed them it
wouldn't be so bad. But I felt that it was important for Joey to see how
poor Alex's vision was because then he would really understand why the
glasses were necessary.
The optometrist was very nice but she greeted me in a guarded fashion and
asked me why I was there. When I told her that I had been suspecting there
was a problem for some time now and that the screening test at the
pediatrician's confirmed that, she told me outright that she didn't put
glasses on four-year-olds. She then went on to tell me that once a child has
glasses their vision will only get worse until they hit their 20s. She only
prescribes glasses for children who have very poor vision. Then she asked me
to tell her about Alex and I told her how he already knows his alphabet and
his numbers, that he is reading some simple words, doing simple math and that
I homeschool the boys.
She then began the eye test which is done by putting the letters on the wall
via an overhead projector. This was great because Joey and I could see
everything that Alex could see (or was supposed to see). She decided to give
him the adult's test because he knew his letters and followed her
instructions so well. (Later she told me that he behaved even better than
some adults she's tested!)
Well, to make a long story short - she prescribed glasses. His vision is
pretty bad. The doctor kept saying over and over that Alex is really bright.
Considering how poor his vision is, it's truly amazing that he's doing so
well "academically."
What really impressed me was how well Joey handled it. He did start crying
when he realized how poor Alex's vision was, but he was able to quiet down
fairly quickly. I think it hit all of us at the same time exactly how hard
it was for Alex to see when he answered a question for me. The doctor had
put a line up on the wall and asked Alex to read it. He said, "It's awfully
small." I said, "I know it is, Alex, is it fuzzy?" He nodded. I said, "Can
you tell me what it kind of looks like?" I expected him to say that he
couldn't tell if the letter was a D or an O, a P or an F - or some such
thing. You know what he said? He said, "It looks like a dot." A dot!
That's when we all realized how badly he needed the glasses.
What impressed me with Joey was his behavior when we went otthe waiting room
to let the drops in Alex's eyes take effect and to pick out the frames. It
was a quick and easy choice - there aren't many frames small enough for a 4
year old! We chose some Looney Tunes frames that really look cute on him.
Joey then walked over to a display of various accessories and called Alex
over. There was a selection of Croakies for Kids and Joey asked Alex which
one he liked best. Alex chose a black Croakie with colorful frogs all over
it. Joey approved and then took the Croakie and his wallet over to the
cashier and paid for it. I almost cried. That one action spoke volumes to
Alex. His brother approved. Alex has loved his glasses ever since.
It's been really delightful for Alex to be able to see the signs on the road
and to read them to us. Over and over he's been exclaiming with delight -
"That says...." or "Look, Mommy! That sign over there says...." He can
finally see all those things that Joey and I pointed out when playing "I Spy."
One of my friends saw Alex in his glasses and she smiled. "He looks
adorable!" she exclaimed. Then she scrutinized him more closely, "You know,"
she said, "Now he looks complete. He always looked like he was missing
something before." It's really been great to have so many kind people say
nice things to Alex about his glasses. The doctor had prescribed bifocals
and I wondered how he would do with them and if there would be a stigma
attached to them. There hasn't been and he's done super!
I'll need to send another update later. This was longer than I expected....
Have a great day! Please take a moment to introduce you and your family to
us, too! Let's have updates on all our children! I love reading mail about
how great our "heart" kids are doing.
Sincerely,
Anna Jaworski
mom to Joey (7) and Alex (4; HLHS - 3 years post-Fenestrated Fontan)
author of Hypoplastic Left Heart Syndrome: A Handbook for Parents
Return to Letters From Anna
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