The benefit has been such a beautiful way to make this something positive to focus my energy on. I am so grateful that it has allowed me the opportunity to dive my creative juices into something I am so passionate about. I have been very busy creating materials and can't wait to share it with you! My goal is to have everything live by Friday evening. GO GO GO GO!
Just last night Matt and I were talking about the trip to Dallas to meet Dr. Fearon. Suddenly like a brick to the head I realized that is next Sunday! WHAT! How did that happen? Normally I would have a notebook full of lists right now. That's how I cope with stress. Lists, lists, lists, and lists of my lists. Yes, if you haven't realized it by now I can be neurotic. Hey, we all have our crazy somewhere hidden deep down. You do a blog and you will learn that about yourself too. LOL.
I am so grateful right now that I have kept so busy... too busy to realize the days slipping away until going to Dallas, and later leading up to surgery. I am happy I have been living in the moment with the baby since these days really do slip away way too fast. Everyday I can see him grow up a little more and more. They should call it the speed of life instead of the speed of light. I just want a pause button sometimes to hold on to the moment. Thank God for the video camera ;)
I'm not sure what to expect on how I will feel once we reach Dallas. I am sure it will be a mix of emotions. Thinking about it puts a pit in my throat. But I just pray that meeting the doctor will give us some peace with our near future. The scariest thing is always the unknown right? Or is it that ignorance is bliss? I think its a little of both and so this will be too.
Wish us luck and stay tuned for all the Chicks Dig Scars materials coming soon to a computer near you!
- Jen
Thursday, September 29, 2011
Friday, September 23, 2011
Sincere Thanks for Support and Generosity
Hello all,
I just wanted to give a sincere thank you for everyone's support. Recently at Black & Veatch, wristbands have been available to purchase for Hudson and Craniosynstosis awareness. The response to the wristbands has been incredible. It is truly amazing to know that we have a great support system. I can't express to you how much this means to Jeanette and I. It feels so great knowing that we are not going through this alone and that we have so many people willing to support us and Hudson.
Just as much as Hudson's smile brightens up our day; so do the smiles, kind words, prayers, and encouragement we receive from all of you everyday.
Once again, I would like to thank you from the bottom of my heart.
Matt Raven
I just wanted to give a sincere thank you for everyone's support. Recently at Black & Veatch, wristbands have been available to purchase for Hudson and Craniosynstosis awareness. The response to the wristbands has been incredible. It is truly amazing to know that we have a great support system. I can't express to you how much this means to Jeanette and I. It feels so great knowing that we are not going through this alone and that we have so many people willing to support us and Hudson.
Just as much as Hudson's smile brightens up our day; so do the smiles, kind words, prayers, and encouragement we receive from all of you everyday.
Once again, I would like to thank you from the bottom of my heart.
Matt Raven
Tuesday, September 20, 2011
From the Mouth of Babes
This is an interview from 5 yr. old Oliver, a boy who went through cranio surgery. I just had to share, it is so stinking cute to hear from his perspective!
http://www.cranioangelnetwork.com/Cranio_Angel_Network/meet_the_angels/Entries/2011/9/16_Angel_63__Oliver.html
http://www.cranioangelnetwork.com/Cranio_Angel_Network/meet_the_angels/Entries/2011/9/16_Angel_63__Oliver.html
Chicks Dig Scars, Benefit for Hudson
What: Chicks Dig Scars, Benefit for Hudson
Where:
Club 1000 (the Penthouse)
1000 Broadway St.
KC MO 64105
When: Friday, November 11th 7:00 pm
My cousin Morgan is putting together a benefit for Hudson! The proceeds will go towards surgery and travel expenses, and a portion will also be donated The World Craniofacial Foundation (WCF). An outstanding organization that supports four distinct programs to help children and adults with craniofacial abnormalities.
The benefit is open to the public and will cost $30 a person at the door. This will include food and an open bar. We will also be holding a silent auction and raffle. This is for a great cause but will also promise to be a fun event. What a great reason to get gussied up and head down town.
Please let us know if you can attend, would like to make a donation, or have something you can provide for the silent auction. You can contact us directly through the blog or at hudsonraven6@gmail.com
We have been so overwhelmed by the generosity of loved ones and strangers! Thank you so much! A BIG Thank You to Lindsey with Herlife Magazine who has been a huge help!
Some exciting businesses participating so far are:
Club 1000 http://www.club1000kc.com/
Stella & Dot http://www.stelladot.com/sites/aclifton
Pin Up Pastries http://www.kcpinuppastries.com/
Blanc Burger http://www.blancburgers.com/leawood.html
This is going to be such a fun event and I'm so excited for so many reasons!
1. Awareness is SO huge!
Ensure more children are seen by physicians when there is a concern with head shape or development
Ease the anxiety that comes from hearing the diagnosis for the first time
We want to encourage more much needed research that could come from more awareness
We can help society understand and love our beautiful little cranio kids.
2. It is a relief to be able to offset some of the medical and travel expenses
3. It will be so wonderful to be surrounded by friends, family and anyone who wants to come join us before surgery.
4. It feels so great to help other families through the WCF, some of which don't have insurance.
I look forward to seeing everyone there! This is going to be a wonderful event and means so much to our family.
Love,
Jeanette, Matt and Hudson
Where:
Club 1000 (the Penthouse)
1000 Broadway St.
KC MO 64105
When: Friday, November 11th 7:00 pm
My cousin Morgan is putting together a benefit for Hudson! The proceeds will go towards surgery and travel expenses, and a portion will also be donated The World Craniofacial Foundation (WCF). An outstanding organization that supports four distinct programs to help children and adults with craniofacial abnormalities.
The benefit is open to the public and will cost $30 a person at the door. This will include food and an open bar. We will also be holding a silent auction and raffle. This is for a great cause but will also promise to be a fun event. What a great reason to get gussied up and head down town.
Please let us know if you can attend, would like to make a donation, or have something you can provide for the silent auction. You can contact us directly through the blog or at hudsonraven6@gmail.com
We have been so overwhelmed by the generosity of loved ones and strangers! Thank you so much! A BIG Thank You to Lindsey with Herlife Magazine who has been a huge help!
Some exciting businesses participating so far are:
Club 1000 http://www.club1000kc.com/
Stella & Dot http://www.stelladot.com/sites/aclifton
Pin Up Pastries http://www.kcpinuppastries.com/
Blanc Burger http://www.blancburgers.com/leawood.html
This is going to be such a fun event and I'm so excited for so many reasons!
1. Awareness is SO huge!
Ensure more children are seen by physicians when there is a concern with head shape or development
Ease the anxiety that comes from hearing the diagnosis for the first time
We want to encourage more much needed research that could come from more awareness
We can help society understand and love our beautiful little cranio kids.
2. It is a relief to be able to offset some of the medical and travel expenses
3. It will be so wonderful to be surrounded by friends, family and anyone who wants to come join us before surgery.
4. It feels so great to help other families through the WCF, some of which don't have insurance.
I look forward to seeing everyone there! This is going to be a wonderful event and means so much to our family.
Love,
Jeanette, Matt and Hudson
Thursday, September 8, 2011
Genetics
I have been thinking a lot lately about how Cranio will effect our future.
Why does this happen? What are the chances of recurrence?
Craniosynostosis is most often sporadic. In some families, craniosynostosis is inherited in one of two ways:
So what does this mean for us?
Hudsons kids (I know way far away right now to think about) have a 50% chance of having cranio.
I have read we anywhere from a 2-50% chance of having another cranio baby depending on genetics.
We can do genetic testing to see if this was just a chance occurrence. Honestly I don't know how I feel about doing testing. If I knew that we have a 50% chance of recurrence would I rethink expanding our family based on a percentage point? What percentage does anyone have that their baby is going to come out perfectly "normal"?
I know now more than ever there is never a guarantee that when you have a baby it will be 100% healthy. In fact now I am starting to be amazed at how many kids end up completely "normal" with all the things that can go wrong. Its a good thing I am not in the medical field or I would be a nervous wreck knowing all the possibilities. The fact is, I know is how lucky we are that this is so treatable and we caught it so early.
You can't live your life in fear of the what ifs. Life is not supposed to be perfect and neither are we. I just hope to raise awareness as much as possible. I hope awareness will encourage more research for Hudson, our family down the road, and every other beautiful cranio baby.
Why does this happen? What are the chances of recurrence?
Craniosynostosis is most often sporadic. In some families, craniosynostosis is inherited in one of two ways:
- Autosomal Recessive
Autosomal recessive means that two copies of the gene are necessary to express the condition, one inherited from each parent, who are carriers. Carrier parents have a one in four, or 25 percent, chance with each pregnancy, to have a child with craniosynostosis. Males and females are equally affected. - Autosomal Dominant
Autosomal dominant means that one gene is necessary to express the condition, and the gene is passed from parent to child with a 50/50 risk for each pregnancy. Males and females are equally affected.
So what does this mean for us?
Hudsons kids (I know way far away right now to think about) have a 50% chance of having cranio.
I have read we anywhere from a 2-50% chance of having another cranio baby depending on genetics.
We can do genetic testing to see if this was just a chance occurrence. Honestly I don't know how I feel about doing testing. If I knew that we have a 50% chance of recurrence would I rethink expanding our family based on a percentage point? What percentage does anyone have that their baby is going to come out perfectly "normal"?
I know now more than ever there is never a guarantee that when you have a baby it will be 100% healthy. In fact now I am starting to be amazed at how many kids end up completely "normal" with all the things that can go wrong. Its a good thing I am not in the medical field or I would be a nervous wreck knowing all the possibilities. The fact is, I know is how lucky we are that this is so treatable and we caught it so early.
You can't live your life in fear of the what ifs. Life is not supposed to be perfect and neither are we. I just hope to raise awareness as much as possible. I hope awareness will encourage more research for Hudson, our family down the road, and every other beautiful cranio baby.
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