Sunday, January 31, 2010
January 31
Posted by Miracle Monster Mommy at 6:05 PM 2 comments
January 30 - Happy 1st Birthday Blake!!
Happy 1st Birthday Blake Joseph!!!!
It is amazing to think that a year has already flown by. Not quite sure where it went?!?!
I remember being so happy to finally meet this precious little man a year ago, but so scared all the same. He has defied all odds - and is pretty cute to boot!
Blake,
You have truly completed our family. You are an amazingly easy-going baby (big boy?!?!?), you share your smile with everyone and your laugh is contagious. You are beautiful inside and out. I know with the determination and attitude that you have already shown us - you will face any obstacles in life with courage and a smile.
We love you so much baby boy!
It is amazing to think that a year has already flown by. Not quite sure where it went?!?!
I remember being so happy to finally meet this precious little man a year ago, but so scared all the same. He has defied all odds - and is pretty cute to boot!
Blake,
You have truly completed our family. You are an amazingly easy-going baby (big boy?!?!?), you share your smile with everyone and your laugh is contagious. You are beautiful inside and out. I know with the determination and attitude that you have already shown us - you will face any obstacles in life with courage and a smile.
We love you so much baby boy!
His cakes and the NICU shadow box I made for him!
Gavin and Braden didn't even have time to put the food down for a picture - they thought the faster they ate, the sooner they could get in the pool!
But then he was ready to PARTY!
Thanks to my friend Jessica for making his very own "1" shirt in just his size.
You can visit her Etsy store HERE
Thanks to my friend Jessica for making his very own "1" shirt in just his size.
You can visit her Etsy store HERE
Little man waiting for his Elmo cake!
What am I supposed do with this thing??
--He did try a tiny bit of frosting and it didn't go well...yuck! After cleaning that up he was a little subdued for awhile!--
We couldn't catch his big brother for a family picture, so while he was recovering we snuck one in!
Blake had lots of helpers ready to help him open his presents!!
But he got the hang of it pretty quickly!
But then he just wanted to get in the pool again!
Oh man did he love the water!!!
Being goofy with daddy!
He was pretty mad when we made him get out of the pool...then I wanted a picture with his hat that we forgot to have him wear and he was having none of it!
until he got PopPop Dirk to walk him back to the pool...ah the life of a One Year Old!!!
Posted by Miracle Monster Mommy at 5:01 PM 5 comments
January 29
Ok I have to admit - between all the party planning and try to get ready for the big Birthday weekend, I didn't take a picture on this day...so these are Pre-Party pictures from Blaker's birthday!
Giving Uncle Nathan some loving!
First time 'in' a pool...he didn't think this was good enough..
...so off went the clothes! "Hurry up Meena, you're walking too slow!"
Posted by Miracle Monster Mommy at 4:44 PM 0 comments
January 27
Posted by Miracle Monster Mommy at 4:37 PM 0 comments
Thursday, January 28, 2010
January 26
Oh those eyes...man do I love them!
So today the snow stopped and the wind died down and we were able to make the trip to Iowa City for our appointment with the Genetics team. We did see about 150+ cars in the ditch along the way though (and a school bus, ambulance, police car and multiple semis!) Thankfully the roads were crystal clear for us and we had no trouble.
I was anxious and nervous. Not knowing what to expect from these doctors, not sure what they were going to tell us, if anything. First off I have to say that we were very impressed with the team. The RN, Fellow and Geneticist worked as a team and made us very comfortable. It was nice to finally have someone actually *see* what we've seen all these months. They actually *looked* at our baby, took the time to listen to all our concerns. They didn't just brush us aside with the standard "well he's just a peanut". That in itself made the trip worth it for me. They made me feel like I wasn't crazy!
At this appointment Blake weighed in at 10 lbs. 2 oz. and was 22.75 inches tall.
They took their time, doing many measurements, examining him from head to toe. They pointed out subtle features that we had already noticed and some we had not. They were thrilled with his physical and mental development and thought he was awfully cute :)
In the end, all 3 were in an agreement that Blake probably has something called Russell Silver Syndrome.
This wasn't a total surprise to us, I had been researching and researching and had come across this a few weeks ago and found that Blake did fit many of the characteristics of the syndrome.
In a nutshell, RSS is a type of dwarfism. It is actually considered rare affecting anywhere from 1/3000 to 1/100,000 people. To read more on RSS you can go HERE. It is considered a somewhat 'treatable' form of dwarfism in that growth hormone treatment and some other options might help in the future.
We've had many ask how we are doing with this news...and to tell you the truth, we are doing pretty OK! This is something that Blake can LIVE with. It is something that we can LIVE with. It isn't life threatening. It is ok. If I think about it enough, I am a little sad that Blake will maybe have to face more challenges in his life - but really, don't we all? He has already shown us that he is determined and can adapt. He has had to fight from his very first breath, we know he can face a challenge. He has learned how to do things while we were still trying to figure out how to help him do those things.
We have an amazing support system and I know that having so many positive people in Blake's life will just help him become whoever he is meant to be! Plus, he has that crazy big brother of his that he has to keep up with!!
So - what's next?
Chris and I are trying to familiarize ourselves with the information that is out there so that we can know how best to approach this. Like I said there are certain things that we might be able to do to help Blake gain weight and inches. We have a great team of doctors who we will be talking with and coming up with a plan!
Most of all - we will be continuing to live each day to the fullest with our 2 miracle boys. We are accepting this as just a new journey in our crazy lives!
Please, if you have questions - don't hesitate to send an email or leave a comment. We would be happy to try to answer any questions or clear up any misunderstandings. We are still learning a lot ourselves and I'm sure we'll be keeping you posted on what we learn!
So today the snow stopped and the wind died down and we were able to make the trip to Iowa City for our appointment with the Genetics team. We did see about 150+ cars in the ditch along the way though (and a school bus, ambulance, police car and multiple semis!) Thankfully the roads were crystal clear for us and we had no trouble.
I was anxious and nervous. Not knowing what to expect from these doctors, not sure what they were going to tell us, if anything. First off I have to say that we were very impressed with the team. The RN, Fellow and Geneticist worked as a team and made us very comfortable. It was nice to finally have someone actually *see* what we've seen all these months. They actually *looked* at our baby, took the time to listen to all our concerns. They didn't just brush us aside with the standard "well he's just a peanut". That in itself made the trip worth it for me. They made me feel like I wasn't crazy!
At this appointment Blake weighed in at 10 lbs. 2 oz. and was 22.75 inches tall.
They took their time, doing many measurements, examining him from head to toe. They pointed out subtle features that we had already noticed and some we had not. They were thrilled with his physical and mental development and thought he was awfully cute :)
In the end, all 3 were in an agreement that Blake probably has something called Russell Silver Syndrome.
This wasn't a total surprise to us, I had been researching and researching and had come across this a few weeks ago and found that Blake did fit many of the characteristics of the syndrome.
In a nutshell, RSS is a type of dwarfism. It is actually considered rare affecting anywhere from 1/3000 to 1/100,000 people. To read more on RSS you can go HERE. It is considered a somewhat 'treatable' form of dwarfism in that growth hormone treatment and some other options might help in the future.
We've had many ask how we are doing with this news...and to tell you the truth, we are doing pretty OK! This is something that Blake can LIVE with. It is something that we can LIVE with. It isn't life threatening. It is ok. If I think about it enough, I am a little sad that Blake will maybe have to face more challenges in his life - but really, don't we all? He has already shown us that he is determined and can adapt. He has had to fight from his very first breath, we know he can face a challenge. He has learned how to do things while we were still trying to figure out how to help him do those things.
We have an amazing support system and I know that having so many positive people in Blake's life will just help him become whoever he is meant to be! Plus, he has that crazy big brother of his that he has to keep up with!!
So - what's next?
Chris and I are trying to familiarize ourselves with the information that is out there so that we can know how best to approach this. Like I said there are certain things that we might be able to do to help Blake gain weight and inches. We have a great team of doctors who we will be talking with and coming up with a plan!
Most of all - we will be continuing to live each day to the fullest with our 2 miracle boys. We are accepting this as just a new journey in our crazy lives!
Please, if you have questions - don't hesitate to send an email or leave a comment. We would be happy to try to answer any questions or clear up any misunderstandings. We are still learning a lot ourselves and I'm sure we'll be keeping you posted on what we learn!
Posted by Miracle Monster Mommy at 10:07 PM 6 comments
January 25
Tonight as I sit here...nervous and anxious over our doctor's appointments tomorrow, I came upon this scene before bedtime! All my boys reading a bedtime story. It did my heart good!
Posted by Miracle Monster Mommy at 9:24 PM 1 comments
January 24
Posted by Miracle Monster Mommy at 9:22 PM 0 comments
Saturday, January 23, 2010
January 23 - Happy Birthday Meena C
Happy Birthday Meena C
We hope you had a great day! We love you so much and can't wait to see you next week!
We hope you had a great day! We love you so much and can't wait to see you next week!
This is pretty much what Blake does in every picture I try to get him to pose for lately!
The other day when we couldn't go outside so we decided to put up Braden's tent - the boys have been playing in it together!
Posted by Miracle Monster Mommy at 6:09 PM 0 comments
Thursday, January 21, 2010
January 21
Getting sick of 'weather' pictures? Yeah well I'm getting pretty sick of this weather! Grrr...Makes for some great pictures though. Too bad it was SO icy that I couldn't get around enough to get any great ones. Couldn't even get to the backyard because the snow is covered in the ice too - it can melt any time now!
Posted by Miracle Monster Mommy at 5:08 PM 2 comments
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