Update as of December 15, 1997
Dear Don, Cathie and Elizabeth,
I'll try not to let my emotions overcome, as I couldn't contain them
when I read Teeter's home page for the first time. I've been an Apert's
mom now for 18 months. A part of my heart belongs to each and every Apert's
parent I've read about on the Internet plus all others. I'd like to send
a quick message to new Apert's parents..." You will survive. Give yourself
time, give your baby time. Your love will grow stronger than you could
ever imagine. "
My wonderful, supportive husband, Allen and I have two adorable children.
Ethan, 5 yrs and our dear angel, Adrienne Leigh, 18 months. Our life was
rather stereotypical until Jan. 16, 1995. With her syndrome a surprise,
Adrienne was born at our local hospital in Davenport, Iowa. She was misdiagnosed,
the Pediatrician on call said she had an enlarged heart and recommended
she be transferred to the University of Iowa Hospitals and Clinic. The
Ped. nurses dressed her in pink from head to toes, we baptized her dark
head of curls then sent her on her way. An hour after her arrival, we received
a call with her proper diagnoses. Myself, I went home 6 hours after her
birth to prepare for my long stay at the University Hospitals in Iowa City.
In the end her stay was mostly precautionary in nature. It did, however,
give Allen and I an opportunity to learn and try to understand what went
wrong genetically, the neurological risks, the optical risks, the respiratory
risk, her orthopaedic risks, feeding risks and on & on & on. Risk
was the operative word ... We left the University Hospital fully trained
for what was ahead. Now, in retrospect, she beat the odds. With all of
the insurmountable odds against us, Adrienne continues to forge ahead with
no significant incidents to report.
Adrienne's cranial release was conducted 2 weeks shy of her 3rd month
birthday. We have completed fourth hand surgeries and her palate correction.
She walked alone at 17 months and talk true words at 18 months. She is
very cautious/careful when walking and makes absolutely sure before every
step due to the tightened rotator cuff in her shoulder joints. We have
OT every week and continue to seek expert opinion to see if she can receive
further relief from this through either more therapy or even surgery. Her
cranial facial team is headed by Dr. Jeffery Marsh, Children's Hospital,
St. Louis. Her hand surgeon is Dr. Roger Khouri, now at the Miami Hand
Center, formerly from Washington University, St. Louis.
I have searched my soul over and over again and Allen and I continue
to learn as much as we can. Your gift through the Internet has brought
us more in touch with the reality of it all. How we DO need support, awareness,
education, etc! In our case, our healing has come through Adrienne, herself.
The past months have been surgery free and we have witnessed her strong
will to be like any other child in the world. Clearly, she needs our strength
and our support to build a strong foundation that is so necessary to keep
her esteem high to handle lives struggles.
Thank you for the opportunity!!! Our best wishes go out to all of you.
Remember, strength grows in numbers.
Ms. Mary J. Rus
|Adrienne recovering from her first
finger release June '95 - 6 months old.
|Adrienne, Aug. '95, o months old. Right in the middle of all
her hand surgeries and still wearing molding helmet.
She didn't let it stop her from her jungle gym. A
lways was a strong kicker!
|Adrienne wearing cranial molding helmet.
We wore it full-time for one year exactly.
Sept. '95 - 9 months
|Jan. '96 - 11 months old. Second and third web space
syndactly repair on right hand. Mommy loves her so...
I became quite an expert at cleaning and re-wrapping
her hands at this point.
|16 months - Ethan & Adri on "Rascal"
||16 months - Adrienne is so cute! Daddy's girl!
Still more work to do on her right fingers.
Scheduled in September or so of '96.
|16 months. Just finished searching in the refrigerator.
Look at all her hair!
|June '96 - Adrienne & Daddy at Lincoln Park Zoo in Chicago.
Hi friends! It
has been over a year since we last wrote so we have much to share with
our Apert's families. although I have read the Listserver daily, our busy
summer has not allowed me to update Teeter's Page so here it goes...
Adrienne Leigh, now 2 1/2 years, has continued to progress positively
in the past year. In November '96, she had further cosmetic work done on
her left middle finger and had both ear tubes replaced as she outgrew her
old ones. The winter and spring months brought lots of colds and sinus
infections. Her breathing cleared up just as our cold, mid-western weather
began to warm. This summer we have been free of any illness. We have observed
our daughter sleeping peacefully without any snoring. We think natural
facial growth has aided her breathing as well.
Adrienne continues weekly OT and speech therapy. Her vocabulary is in
excess of 100 words with good word ending enuciation. We are still working
hard to increase word combinations. She is in an in-home day care with
2 toddlers and 1 new born (whom she adores). She is stimulated with discovery
toys, interactive play and music videos throughout her day. Her past time
is spent riding her little tikes car, tricycle, sliding on slides, swinging
and playing for extended periods of time with her big brother's Zeo Rangers.
Her first love is Barney and friends with Arthur coming in a close second
on our local BPS station.
Big brother, Ethan, has shake, rattled and rolled her on different occasions.
He loves to wrestle and make his little sissy giggle from her toes. She's
in love with her daddy (all boys in general) and has mommy twisted around
her little finger.
Allen and I have resorted to fair discipline between both children.
We've found Adrienne to recognize our latitude with her and are now tightening
upon disciplining her behavior (no special treatment).
In summary, Miss Adrienne has taught us never to take life for granted,
never to consider any day as "ordinary," to see things more clearly and
enabled me to rise above life challenges. We are preparing for Adrienne's
three-year evaluation to prepare her for preschool in fall of 1998. So
far, our community, family, and friends' acceptance of her has been outstanding.
We know we are not alone as no body ever told us life was easy. Our daughter
WILL grow to become as outstanding as an adult as she is as a child.
May god bless you all and thank you for your hard work and diligence
in bringing us together.
|Adrienne at 20 months
||My princess bed