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!
6 comments:
I so *heart* you...Blake and Braden are both so lucky to have you and Chris...every challenge you approach it in the same way, Positive and upbeat...Blake will grow and shine and be amazing...because look what he comes from.
xoxo
K
What an incredibly beautiful son! I too have a child with RSS and thought the road has its challenges....it has its rewards too! From one parent to another the best thing you can do for Blake is always be his advocate and know what all your options are so that you can make the most educated decisions for him! I noticed you have already visited MAGIC's website. They are a great (and the only!) support system for families of RSS children. They can tell you what to expect, educate you and connect you with other families of RSS children. They also have a new book that is the only of its kind. It is over 300 pages long, full color and full of information and personal stories from other RSS parents. Good Luck!!
I'm so thankful you've found your awesome medical dream team for Blake. Reading the way you are approaching and tackling the news so clearly explains the enormous smiles your boys are always wearing. No doubt where they have learned their love for life from!!
Much love to you guys.
Lauren
You are an amazing family, so full of life and strength! I am so glad to know you and to gain so much from your attitude and your outlook. What lucky little boys you have!
Hugs and much love to you and yours.
I so love you oodles! Reading your blog brought tears to my eyes... not tears of sadness, but tears for how proud I am to know you and your family. You and Chris are such awesome parents. I have not doubt that these boys will know that they can do whatever they put their mines too, and that you both will support and love them unconditionally. I can't wait to see the men that they will become one day.
xoxo
J
Carissa,
The pictures of Blake's party are great! He is precious!
I am so glad that you found a good medical team, and that they realize there is something going on. It was such a relief to find doctors who did not blame prematurity for all of Tucker's issues. So I am sure you feel the same peace, it is so nice to not feel like a crazy mom:)
Good luck with everything,
Leigh
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