I'm a big girl now
Josie is 2!!
Updated March 2008
Josie turned 2 February 3 2008 and ever since then she has been
growing and developing by leaps and bounds.
2007 was a very busy year for Josie, she had 3 hand surgeries, 5 months
of body casts, and bilateral femoral osteotomies (for developmental hip
dysplasia) with an additional 7 weeks of body cast. So now Josie has all
ten fingers and is finally learning to stand and walk.
Josie was in the body cast for pretty much the whole summer. We did
manage to visit relatives in Tennessee while in her cast. She was such a
trooper. Her hand surgeries all went wonderful. Dr. Scheker did an
amazing job!! After her first surgery she got the casts off in I days!
What a Houdini.
Her hip surgery took place in November. Basically the casting over
the summer helped to form her hip sockets. But her orthopedic doctor,
Dr. Rosenberg discovered that her femur's were just too straight and no
amount of casting or bracing would "bend" then the amount they needed.
So that is why we proceeded with the bilateral femoral osteotomies.
Which involved cutting the the top portion of the femur and rotating it,
and attaching it with a plate and screws. Her hemoglobin was pretty low
after (about half of what it should have been), so she was pretty weak
for a while, but of course she bounced right back. She got the cast off
right after Christmas and was pretty sore for a while. Her legs were
almost frozen like they were in her cast. But she was crawling after 2-3
weeks, and by the end of February she started standing!! She is now
taking some steps around the couch and tables. She is getting stronger
We are looking forward to about 18 months or so being SURGERY FREE!!
This is amazing to us, Josie gets to just be a little girl and we get to
relax and really enjoy each other. We are really looking forward to this
summer. We are planning a trip to Kentucky to check up with Josie's hand
surgeon and to meet Madison and her family, who we met on the listserve.
We are also going to myrtle beach to the CCA kids craniofacial
Oct 2006--8 months old!!
Josie is growing up so fast!! At almost 9 months she weighs 20 pounds
and is over 27 inches long (this is how big her brother was at 1). She
never met a food she did not like ;0). She is meeting most of the
developmental markers she should. She sits up, feeds herself crackers,
babbles, and rolls all over. We are still working on getting into and
out of a sitting position.
She is getting physical and occupational therapy once a week at home and
also visited by a teacher at home once a week. She attends baby group
once a week as well through the school system.
She now attends the daycare/school her big brother Brendan does, and
her teacher ms. Doris just adores her. She is so easy going and happy!!
At three months she had her first frontal orbital advancement (Dr.
Ian Jackson and Dr. Daniel Pieper) and at 7 months she had her cleft
palate repaired by Dr. Jackson as well. We are waiting on a date to
start her finger separation. It will take five surgeries to get them
She has really completed our family, and amazes us everyday with her
courage and happiness. We are very lucky that she chose us!
|Josie was born February 3 2006 at 9:02 am at providence
hospital in Southfield Michigan. She weighed 8 lbs 6 oz and was 21 inches
long. We knew ahead of time that she had Aperts, so no one was shocked by
the syndactyly, craniosynostosis and they were prepared to handle
breathing problems, etc
Because we knew about her
Aperts, we had a scheduled c-section. when we watched them take her out of
my belly, we were both holding our breath, though we knew about the Aperts,
we did not know the extent or severity so it was still very scary. After a
quick look over by the neonatologist and NICU staff, they quickly showed
her to us and whisked her away to the NICU to help her with her breathing.
She was in NICU for only 24 hours and then brought back to us in our room
and boy were we happy. You can ready more about her entrance into the
www.josie.bigwaterbass.com courtesy of her daddy, to keep everyone
informed of her progress.
To get back to how we found out in advance (which is
rare) you would have to go back to week 18 during our routine ultrasound.
The first shock we got was that she was a girl (and her big brother was
right). You see she is the first girl in two generations on her dads side
and the first granddaughter on her mommy's side. During the ultrasound
they were seeing that her hands looked abnormal, either fused or
positioned funny (not so funny to mom and dad). So they recommended a
amniocentesis to look for things like downs and trisomy 13. Of course,
mommy being a nurse she immediately went home and search the internet, and
found out what trisomy 13 was, and went into shock.
We has our amnio the next week and then 10 days of
waiting (long days). The amnio came back negative, whew!! Of course we
were told that did not rule out metabolic problems and they would keep a
close eye on me. Of course we were told she could just have syndactyly of
the hands (at the time they thought her toes were fine. So we settled
ourselves on the best case scenario that she would have some webbing that
could be fixed. At that ultrasound they also noticed by placenta was low,
so they wanted to see me at 28-32 weeks for a repeat ultrasound.
At our 29 week ultrasound, they discovered my placenta
had moved, yeah. But were having a hard time visualizing her corpus
collosum. Maybe due to her position, head was already down and posterior.
So we were told to come back in a week and they would recheck it. The next
week, same thing, so they sent us to Hutzel's Women's Hospital in Detroit,
Michigan. We were lucky and got in the very next week. So now mommy is off
to research agenesis of the corpus collosum. Not as bad as trisomy 13, but
not the perfect child we envisioned. Our appointment at Hutzel lasted 5
hours!! Three of which was ultrasounding!!! After the first doctor
initially ultrasounded us, she threw out words such as craniosynostosis,
syndactyly, tight toes, but told us she did find the corpus collosum,
yeah!! She explained it could be a few different syndromes and she wanted
to go review the ultrasound and the different syndromes and she would be
"right back" Of course in medical terms that means, minutes to hours. When
she finally returned to the room she explained she believed it was Apert
syndrome and that was the less severe of the syndromes and that our baby
would mentally have a good chance at being "normal" but her looks would
not be and she would need surgery. She then offered us to go to their
research department for a better look using a more sophisticated
ultrasound machine. We agreed, little did we know we had to give 5 vials
of blood and a urine sample!!
The ultrasound there lasted a good 1 1/2 to 2 hours. We
got a really great look at her profile, and boy was she cute. The research
doctor, agreed with the Apert diagnosis and also visualized the corpus
collosum. So now we were off to research Apert syndrome, and that is how
we got to Teeter's website, which has been a godsend to us. We have met so
many nice people, who were very helpful in helping us prepare for her
The last 8 weeks of the pregnancy were uneventful, we
were mentally preparing ourselves for the road ahead. When we welcomed
Josie into the world, I was afraid that I would not be able to bond with
her, or would I think she was not cute, but of course I was in love from
the first moment I laid eyes on her sweet face. She is now 8 days old and
is the sweetest thing!! Her big brother Brendan loves her, and thinks her
hand and feet are cool, and knows that the "bump" on her forehead will one
day be fixed. He thinks that the doctor glued her fingers/toes together.
He really does adore her, I cannot count how many times he walked by her
and tells her "I love you" & "you are so cute".
We meet with the craniofacial team March 8th and will
know where we are going from there. We want to thank everyone for all
their well wishes and prayers!! They have meant so much to us.