Beyond the face.....

On this last day of september, which is also craniofacial awareness month, I thought I would share part of our journey. We found out while we were pregnant that Josie would be different, that she would requires surgery, no one surgery but many surgeries. We found out she may have breathing problems, feeding problems, speech problems, vision problems, basically many problems. As you can imagine grief and anger quickly ensued us. We found all this out just before christmas 2005. Actually we knew in september of 2005 something "may" be wrong. So my pregnancy was not a happy one....

Once we turned our attention to the internet to figure out just exactly we were dealing with, we found Apert.org which has been a godsend. We joined the listserve and met many wonderful people that gave us much encouragement before josie was born and even more once she was here. Imagine your child being diagnosed with a RARE craniofacial syndrome (1:160,000 or 1:60,000 depending on what you read), no one has ever heard of it, where would you find the answers? Luckily the internet steared us to Don, Cat & Teeter sears and the rest is history.

We were lucky enough to meet Josie's craniofacial surgeon while she was still in the womb. He is world renouned and better live for at least 15 more years, I would trust her to no other. Even more amazing, he opened the craniofacial clinic at the hospital I work at. His name is Dr. Ian Jackson, along with Dr. Pieper (neurosurgery) they performed josie's first surgery at just 3 months, giving her head a more "normal" shape. But that is getting ahead of things.

We had no idea what to expect when Josie arrived. Because her sutures in ther head were already fused, my doctor had me scheduled for a c-section, since her head would not be able to mold to come out. My OB was a godsend in himself. He was so compassionate and caring and made sure everything was taken care of. To tell you the truth, I think he as a mighty bit scared. You see he is about my age, so I am sure this was a first for him- dealing with the "unkown". Josie arrived February 3, 2006 (Superbowl weekend--detroit was hosting!!), she spent 24 hours in NICU and only 9 hours on oxygen. I did not get to see her for the first 24 hours, which is another long story of complications. Josie's NICU nurse was amazing and called me with updates, and even came to see me (since my temp was low and I was pretty much in shock (medically not mentally) in my room.

This is where I became the expert. You see, since we found out prior to birth (which is rare), we had plenty of time to research, so we had to educate the medical staff at the hospital. And it has been that way ever since, us educating the public, doctors, teachers, strangers & hopefully YOU!

You see we have been pretty darn lucky. Yes, josie has been through 9 surgeries in her short life, but she is doing AWESOME! She is coming into her own and getting a might bit sassy and stuborn (taking after daddy....) We are lucky she is pretty "mild" as we have been told by the many doctors taking care of her. While we do get stares and silly kid questions about her hands/face/eyes, we are lucky that she does not have the major issues. No tracheostomy, no feeding tube, no major vision issues. Of course this is just the beginning of her story. Check back to learn more of what Josie has been up to the last 3 1/2 years!

My very own fisherman

Have I told you about my husband? probably not since I tend to ramble on about the kiddos. I met the man of my dreams in april of 2000. You will never guess where I found him.....The internet, yes ladies I know that can by "dangerous" but back then it was a pretty new fad.

We were engaged march 01 and married October 20 2001, just over a month after september 11th. We had a beautiful fall wedding, the leaves were brilliant colors of oranges and reds, mums were in full bloom and the sun peaked out from behind the clouds long enough to illuminate the stained glass of the BARN CHURCH that we were married in.

He is an awesome father, even though he would never admit it. He is such a great father because he is still a kid himself...hehe. 

My husband is a controls engineer by trade, but tournament bass fishing is his life! My husband has been fishing for more years than i can imagine, and can fish for hours on end (without even a radio on his boat), now that is dedication. He is considered semi-pro i believe. He has won some and lost some, but that is the name of the game.

I guess you could call me a "bass widow" in the summer. The kids and I will travel to some of his fishing weigh ins, sometimes he even gets "Big checks"

Yep girls he is all MINE...

and boy do i love the fisherman so!

Let the craziness begin

It is official, school is here and so are the birthday party invite, parent night invites, skating parties, PTA, fundraisers, homework....

All in all kids are adjusting well. Brendan is learning that in the second grade HE is responsible for his work and completion and parent checking his work, not US. He is also excited that his teacher has therapy dogs that she brings to school and he even got to "adopt" a dog for the year. He thinks his teacher is so nice she will never yell at them, and that she knows they are all so smart. He is a goofball!! And for the first time tonight Mark let him ride his bike to his friend Marky's house for his birthday party. He is only a couple of blocks, but he is MY baby! I can remember the day he was born like it was yesterday. I remember being so scared when my water broke, that I was having a baby?, who me?? that couldn't be. But now I can barely remember my life without him, he is one silly kid!

Josie is loving school and finally the BUS! She really seems to be flourishing. She is not talking a ton at school, but i am sure in time they will not be able to shut her up. Everyday when we ask what she did at school she says "nuttin" yep, the typical kid answer, too funny!

Max (the dog) still tries to test me, but I am learning how to train him and have him respect me, thanks to my hubby (and cesar milan--the dog wishperer).

Hockey started, so that means mark is gone a few nights a week and the motrin bottle will be half empty all winter. Hope he does not have such a rough season this year, but boys will be boys!

I for one am gearing up for scrapbooking this fall and winter! I am in desperate need of getting some work done and look forward to girl talk. I am hoping to get a handle on my weight/diet this winter. I just do not have the motiviation and I do not know why. Now that things with josie have slowed down, and not so stressful with all the surgeries I would have thought it would be easier, but not so much. Not sure what my deal is, I guess I am in some kind of funk. I will be 36 on tuesday, which means i will officially be closer to 40 than 30 and that is so crazy/scary to me. When my mom turned 40 I was in college. My kids will be 11 and 7! I do not feel almost 40, athough my grey hair looks it, but thanks to sally's hair suppy and good hair dye, no one has to know that.

In october Mark and I will be married 8 years, I guess maybe I am a grown up, scary isn't it??

I will leaving you with some pics from our recent girls trip to the apple orchard! Josie had a blast and loved posing for pictures!

Here she is licking the cinnamon/sugar from her donut off her fingers!

Enjoying conversation with nene sue and mommy

Asking me to take a picture of her feet

Smelling the sunflowers

Playing in the hay maze

What a fun day!!

The wheels on the bus....

Go round and round, round and round....

 

Our first day of school went great! Kids got up and in "ok" moods. Josie was super excited & once brendan was "awake" he was excited as well. Brendan was excited that Josh & Christian would ride the bus with him, since he says Julianna is "crazy" now. Josie was so excited, she wore her backpack all morning!

• 
  
• 
  

After brendan was on the bus, off to preschool we went! She squeeled with delight as we entered the parking lot! Demanded her picture be taken in front of the school, but once we entered the doors: her lips were SEALED! We found her locker, put her bag away and met her teacher and para-pros. She also has a student teacher this year. We filled out the necessary paperwork and then played for the remainder of the hour! 

While josie is still playing with goodies her teacher gave to her, brendan is "resting" in front of the TV not giving school a second thought! 

Gotta love 7 year olds!

Labor of love

Our first camping trip is in the history books and we all survived, or that is mark survived us! The kids were a bit high-strung demanding, I was getting over my sinus infection, and marks allergies were in high gear! But we had a good time, great weather, and max was GREAT! (maybe even better than the kids).

We arrived at sterling state park about 520pm on friday and were all set up and ready to go by 6pm! Tent was a breeze, we had a great spot-right near the bathroom, yeah for me, bad for josie (she wanted to go every five seconds just to see what was going on). We got dinner, bike ride, bon-fire & hobo pizza's all in on the first night. Whew will we do rest of the weekend??

Let's see: more bike riding, beach time, more bonfires, smores, playground, listen to kids argue, whine & cry. All in all good family fun! Packed up on sunday and headed home to hang out with family, have a bonfire in backyard and chill before the first day of school!

Yep folks, it is now monday evening 830pm and kids are in bed asleep, backpacks packed and we are T-minus 10 hours till we get up and ready for school! Even Josie is starting preschool tomorrow! She will go Monday thru Thursday from 9a-1130a. The school bus will pick her up and drop her off at daycare, how cool is that! She is in a program through early intervention, so we are pretty confident she will be ready for kindergarden at the "normal" age. We are so incredible proud of her!

Josie has come so far for such a young age, of course she has the biggest cheering crowd around! One of them being Brendan! Who will be entering 2nd grade with Mrs. Masnari @ Coolidge elementary. He is a bit bummed his "friend" emma is not in his class, but has assured us they will meet on the playground after lunch. He is truly a funny soul, a bit trying at times, but who is suprised? Mark is his father, and brendan is his mini-me!

I am off to bed, gotta get my rest so I can get those two kiddos up and ready in the AM!

A new chapter

For sometime now we were keeping family & friends updated on Josie through her caringbride website: www.caringbridge./visit/josiedowd. Now that we are enjoying some surgery free time, I have decided to change formats a bit. So that is when i decided to start a "FAMILY" blog.

We are extrememly proud of the progress Josie has made over the last 3 years. She has endured 9 surgeries to correct her head, hands and hips, and throughout them all she has remained happy and carefree. Not so say the stress has not taken a toll on mommy & daddy. We are so happy that we are able to share some time toghether without the stress of upcoming surgeries for awhile. Not to leave out Brendan, he has been a trooper as well, adapting to staying at grandma/grandpa's or uncle gary & aunt gina's during hospitalization as well has keeping josie occupied during her 8 months of body casting! He really loves her with all his heart, and doesn't even realize that she is different, talk about unconditional love.

The first day of school is right around the corner...Brendan will be starting second grade and Josie will be in preschool. Josie will attend perinville early education. She will go M-TH from 9-11:30, how exciting! She will get on and off the bus at daycare. We are so lucky that our daycare is so flexible with us. Brendan will attend coolidge, he is hoping to have many of his friends in his class again this year.

Mark is wrapping up another year of fishing tournaments. He has won some and lost some, but we are so proud of him either way. He did not fish as much as usuall this summer, so we were able to hang out a bit more with him this summer which has been so much fun. Hockey is starting for the fall, so keep your fingers crossed that he does not injure his back too bad!

Of course we added a new addition this summer: Max our black lab, who just recently turned 1 and is FULL and i mean FULL of energy. The kids bonded too him quick as did Mark. Not to say I did not bond to him, max and I have a love/hate relationship. I have not become his "pack leader" yet, so he is a bit mischief when I am home alone with him. He has not ate any furniture yet, but my cell phone did!
He is a great dog, loves the kids and is a great addition to our family; and if watching hours of "dog wispherer" with cesar doesn't train him, then we may be in trouble!!

Of course last but not least, I (mommy & wife) am staying busy with work and looking forward to the fall. My favorite time of the year is the fall, the smells of apple cider, leaves, and of course lots of scrapbooking in the fall & winter. Hoping i get good use out of my scrapbooking zone upstairs this fall & winter! Somehow there is just not enough hours in the day....

Not sure where this blog will take us, but thanks for stoping by and ENJOY!!