To all my readers:
Thank you so much for taking the time to read and share my blog! I am overwhelmed by the number of comments, likes, and shares. Your words are such an encouragement to keep writing!
Some of you have followed me since my first blog post, but many of you have stopped by more recently. My goal is to get a new blog post out every Tuesday morning. And, in light of #tbt [Throw Back Thursdays] I am going to post a blog from awhile back every Thursday. (For those of you that don't know what TBT is, it is when people post a picture of something from a long time ago, like when they had braces, or an old wedding photo, or an embarrassing childhood picture on social media.)
It's funny. I thought this would be a fun adventure, but quickly realized after looking for a "first TBT" post this was going to be an emotional ride. With a regressive disorder, things looked a lot different back then....
So, welcome #TBT!
OCTOBER 06, 2009
Hello!
I wanted to give everyone an upate on Jayden.
We all know Jayden has a bigger head and a developmental/speech delay. Well, the doctor noticed over the past couple months Jayden's liver was enlarged. He bagan to be concerned about if all these "unrelated" things would add up to a genetic disorder and, after today we think he is right.
We saw a genetic dr. at Children's memorial and he thinks Jayden (and possibly Brooklyn if it is the more severe type) has mucopolysaccharidosis. He is having testing done and the types he thinks Jayden has is Hurler syndrome which effects boys and girls OR Hunter syndrome which effects just boys. Regardless, it is a genetic disorder on the X chromosome. It is a progressive disease that currently has no cure. We have just done the testing (blood and urine) so that is all we know.
Right now, Jut and I are a bit of a mess. The life expectancy is 10-50 years old, and although there is treatment it sounds like a slow, painful, early death which we are not even trying to think about! We are really trying to not get worked up until the test results are back. Please just pray for our family, and our little boy. God is a big God and loves Him even more than I can imagine! That is a hard reality now. Jayden just saw me crying and with his bright smile wiped my tears. This is all so fresh so sorry for the bit of emotional breakdown!
I wanted to give everyone an upate on Jayden.
We all know Jayden has a bigger head and a developmental/speech delay. Well, the doctor noticed over the past couple months Jayden's liver was enlarged. He bagan to be concerned about if all these "unrelated" things would add up to a genetic disorder and, after today we think he is right.
We saw a genetic dr. at Children's memorial and he thinks Jayden (and possibly Brooklyn if it is the more severe type) has mucopolysaccharidosis. He is having testing done and the types he thinks Jayden has is Hurler syndrome which effects boys and girls OR Hunter syndrome which effects just boys. Regardless, it is a genetic disorder on the X chromosome. It is a progressive disease that currently has no cure. We have just done the testing (blood and urine) so that is all we know.
Right now, Jut and I are a bit of a mess. The life expectancy is 10-50 years old, and although there is treatment it sounds like a slow, painful, early death which we are not even trying to think about! We are really trying to not get worked up until the test results are back. Please just pray for our family, and our little boy. God is a big God and loves Him even more than I can imagine! That is a hard reality now. Jayden just saw me crying and with his bright smile wiped my tears. This is all so fresh so sorry for the bit of emotional breakdown!
(2015 update: Hurler's is not just on the X chromosome...but we didn't know that. At the time, they were not even considering Sanfilippo.)
