Josie's Page

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 everyday.

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 conference.


 


 


 


 

 


 

 



 




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 separated.

She has really completed our family, and amazes us everyday with her courage and happiness. We are very lucky that she chose us!

 


me after my cleft palate surgery
 


Me and my cousins:  Cody, Logan, Brendan (brother), Me and Lily
 


me and Brendan (and my brace to help my left hip grow into the
socket)
 


 


yummy yummy toys
 


 



 


Easter 2006
 


Easter 2006
 

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 world at 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 birth.

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.
 


 


 



Josie, 3 weeks old
Our little ballerina!!

This page was updated March 31, 2008

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