Thursday, February 25, 2010
Today was the big day!
And we got our very own miracle.. After reviewing the ct scan's again the plastic surgeon and nuerosurgeon decided that even though he is what they would call a severe case on the outside.. the inside is actually NOT fused.. So we got to come home today with NO surgery! He will be fitted for a cranial helmet soon and try that out for a couple months and see if it is working, if not we are back to a possible surgery.. We are all so relieved for our little guy! We have an amazing group of family and friends that are so supportive and wonderful we can't thank them enough!! We didn't find out until after we had been at the hospital for over 2 hours that we were skipping the surgery for now... so he was already in his cute little mini hospital gown.. totally cute on him. Once I am caught up on sleep I will find the camera and load a couple pictures!
Tuesday, February 23, 2010
2 Days To Go!
I did take a new picture of Finnley though.. Usually when I get the camera out he refuses to smile.. he just stares at the camera.. But he was extra giggly..
I probably won't update this again until after his surgery.. *hoping* to sometime the day of.. as long as things aren't too crazy!
He can't have any formula after 2AM Thursday, and nothing after 6AM.. I am a little worried he will be hungry and upset while we are waiting..
Wednesday, February 17, 2010
Oh I almost forgot..
As of last Monday Finnley has 1 super cute tooth.. #2 comes and goes. He is SOOO close to rolling over from back to front.. he spends the majority of his floor time on his side grunting! His skull issue doesn't seem to be effecting any of the other milestones, it usually doesn't, just thought I would share!
~Couple more pics and the next step towards surgery~
Thought I would add a newer picture where you can kind of see his noggin a little different. Thanks to Stephanie at Memories By Stephanie Photography for the pictures! You can really see in the top picture on his left side above his eye, it looks like there is a little indentation. Of course we still think he is perfect!
One of the things the hospital recommended was that we organize a blood donation from either Ryan or I for the baby because they have to have a transfusion after/during the surgery... Of course both of us as well as a number of family members (LOVE YOU GUYS!) offered if for some reason we weren't able to donate for him.. So we got that taken care of yesterday, that was a much longer experience than we expected, neither of us had donated before. Ryan donated.. I am not so good at needles and we both matched. His surgery is 1 week from tomorrow and I have yet to start packing or planning. Everytime I start, something comes up. That is just the way it works with kids I guess!
We are hoping to stay at the Ronald McDonald House while we are there, at least somewhere we can sleep if the baby is asleep. I know I won't be able to go sleep if he is awake. I had never really thought about the Ronald McDonald House until this whole thing started and we found out a surgery was happening. I didn't ever really think about how much it would cost if we had to pay for a hotel OR drive back and fourth everyday. We are very thankful we might get to stay there (as long as it's not full).
One of the things the hospital recommended was that we organize a blood donation from either Ryan or I for the baby because they have to have a transfusion after/during the surgery... Of course both of us as well as a number of family members (LOVE YOU GUYS!) offered if for some reason we weren't able to donate for him.. So we got that taken care of yesterday, that was a much longer experience than we expected, neither of us had donated before. Ryan donated.. I am not so good at needles and we both matched. His surgery is 1 week from tomorrow and I have yet to start packing or planning. Everytime I start, something comes up. That is just the way it works with kids I guess!
We are hoping to stay at the Ronald McDonald House while we are there, at least somewhere we can sleep if the baby is asleep. I know I won't be able to go sleep if he is awake. I had never really thought about the Ronald McDonald House until this whole thing started and we found out a surgery was happening. I didn't ever really think about how much it would cost if we had to pay for a hotel OR drive back and fourth everyday. We are very thankful we might get to stay there (as long as it's not full).
Friday, February 12, 2010
Finnley.. just a few days old!
The part of his skull that is already fused is his left front plate. I don't think it is very obvious in this picture but the opposite side of his forehead looks bigger. And he really does have a bottom lip I promise!
Craniosynostosis
is a HUGE weird word.. but for any of these other posting to make sense.. you should have a general idea of the condition.. This is an overview
Craniosynostosis is a congenital (present at birth) defect that causes one or more sutures on a baby's head to close earlier than normal. Sutures are connections that separate each individual skull bones. The early closing of a suture leads to an abnormally shaped head.
Here are a couple websites to check out
https://health.google.com/health/ref/Craniosynostosis
http://www.craniokids.org/
Craniosynostosis is a congenital (present at birth) defect that causes one or more sutures on a baby's head to close earlier than normal. Sutures are connections that separate each individual skull bones. The early closing of a suture leads to an abnormally shaped head.
Here are a couple websites to check out
https://health.google.com/health/ref/Craniosynostosis
http://www.craniokids.org/
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