I Have An Excuse For Not Reporting On TiVo News As Of Late
Update: 7/13 @ 2:37PM: I just received a call from the Doctor letting us know that our son is at NO RISK for the disease. Needless to say my family is extremely happy. This past week has been the worst week of my life. Now I can start to enjoy my newborn son once again. I appreciate all the comments that were left on this post. It’s nice to know that there are people out there who truly care. Thanks again!
Because of this nightmare, I’ve decided to donate all of my July Google Adsense revenue to the Hunter’s Hope foundation for research into this horrible disease. Thanks again and stay tuned for some actual TiVo content on this site. I plan to get back into things in the next couple of days once my emotions calm down.
In case you haven’t noticed, things have been a little show on this site as of late. Last week my wife and I received a call from a local neurologist letting us know that our newborn son did not pass the New York State newborn screen. The neurologist told us that our son tested positive for a rare disease known as Krabbe. Needless to say things have been rather hectic. This past Tuesday, my wife and I brought our son to see a geneticist. Now we’re waiting on some additional testing to determine whether or not my son has the full blown disease or if he is considered a “low to moderate” risk.
Needless to say, I haven’t had any time or desire to report on TiVo. Within a week my entire life has been turned upside down. Everything that use to be important to me is no longer important. Hopefully when we get the test results back we will find out that he is considered low to moderate and the only thing we will be able to do is monitor him from this point forward.
Stay tuned to this site for any updates. I may get somebody to fill in for me but, for now I’m just trying to deal with everything that is going on at home. My hopes are high but if my son does in fact have the full blown disease I’m not sure how I am going to handle it…..
July 12th, 2007 at 8:38 pm |
Our prayers are with you and your family.
July 12th, 2007 at 8:53 pm |
I’m terribly sorry to hear this, Alex. I’ll be thinking about you guys.
July 12th, 2007 at 9:00 pm |
Our thoughts and prayers are with your son and family.
July 12th, 2007 at 9:15 pm |
Such difficult news.
Your son is absolutely beautiful — I’ll be thinking good thoughts for your son and family.
July 12th, 2007 at 9:26 pm |
My thoughts and prayers are with you.
July 12th, 2007 at 9:35 pm |
Take care of yourself and your family… there is nothing more important.
My thoughts are with you.
July 12th, 2007 at 9:55 pm |
Will be praying. I’m glad you have your priorities in order.
July 12th, 2007 at 9:58 pm |
I am so sorry to hear about this. I’ll be thinking good thoughts for you and your family.
July 12th, 2007 at 10:08 pm |
Damn, I’m very sorry to hear this Alex. I hope it turns out to be an error in the screening, or at least is in the low-risk group.
July 12th, 2007 at 10:16 pm |
Hang in there Alex! We’ll be thinking good thoughts for you!
July 12th, 2007 at 10:27 pm |
Alex, I’m so sorry to hear your family is facing this. I wish Nicholas the best of health, and good luck to all of you as you go through this tough time. - Mark
July 12th, 2007 at 11:00 pm |
This sucks. As a parent of two kids, I know that I would gladly take on any and all of their problems. I’m so sorry to hear this news. My prayers are with you, man.
July 13th, 2007 at 12:51 am |
augh, I don’t know what to say dude. I’m very sorry to hear that. - I wish you and your family the best of luck.
July 13th, 2007 at 1:09 am |
Very sorry to hear that. Take care of your family. I wish you the best.
July 13th, 2007 at 1:17 am |
I’m so sorry to hear about this Al. Hang in there and hopefully things will get better.
July 13th, 2007 at 11:21 am |
Praying for the best for your family Alex.
July 13th, 2007 at 12:17 pm |
Thanks for taking the time to explain, you’ve got your priorities straight. I’ll be praying for you.
July 13th, 2007 at 12:26 pm |
Alex, I’m sorry to hear the news and all of us here at TiVo are hoping for the best for you and your family.
July 13th, 2007 at 2:14 pm |
Don’t worry about the site. All the best.
July 13th, 2007 at 3:01 pm |
Boy, I said a little prayer after I read your story and came back on a whim and saw the latest news. How great is that??
I’m very happy for you and your family. As a parent of a 9-month-old little girl I empathized with you big time.
July 13th, 2007 at 6:21 pm |
Alex,
I’m relieved to hear things worked out for the better. When I read this last night (and your links), I felt such empathy for you and your family.
Thank the gods! I know that’s every new parents nightmare. Take the time you need to recover, emotional trauma has it’s tolls too.
July 13th, 2007 at 8:08 pm |
Wow, I’m so glad everything worked out. Makes you prioritize your life. We went through a scare as well at the birth of my child. I know your fears.
July 13th, 2007 at 9:35 pm |
Wow, sorry to hear, I’m sure everything will turn out ok.
July 13th, 2007 at 9:50 pm |
Glad I checked back and saw the update - GREAT news! That must’ve been one hell of a roller-coaster ride, emotionally. I’ve had some scares with my parents over the past few years - dad had a heart attack, cancer scare with my mom - but I’m sure that doesn’t compare to such a scare with a newborn.
I’m glad it was just a scare and not more serious.
July 13th, 2007 at 11:15 pm |
So thankful your son is in the clear. Your blog popped up with a google alert I have as my son does have Krabbe. Hunter’s Hope is a fantastic organization, thanks for donating there.
July 13th, 2007 at 11:24 pm |
Thanks for stopping by Phil. The least I can do is donate to Hunter’s Hope. I wish your family the best of luck.
July 14th, 2007 at 7:28 am |
Alex,
Your donation of your July Adsense to Hunters Hope is a reflection on what a good person you are.
I cannot tell you how happy we are to hear the great news.
July 14th, 2007 at 6:49 pm |
This update is wonderful news! Bless your heart for donating to Hunter’s Hope.
July 18th, 2007 at 1:57 pm |
No risk, Great news! Congrats, I can only imagine the relief. What happen?? False positive?
July 18th, 2007 at 1:57 pm |
subscribing to comments
July 19th, 2007 at 10:22 am |
Yes, I guess you could say that it was a false positive. The additional testing that they performed indicated that he is not at risk. Thanks for taking an interest. I really do appreciate it!
September 10th, 2007 at 9:19 pm |
Hi–I’m found your post while googling ‘positive results for krabbe’. I had the same exact horrible week you did after my daughter was born last December. She tested positive for Krabbe. After additional testing, she was found not to be at risk (although a bit more complicated than that…) Is there any way we could communicate more? I would really be interested in comparing notes and what your neurologist said. Thank you!
September 28th, 2007 at 10:59 pm |
Hello–I forgot to opt in to ‘notify’ via email. I was hoping you’d found my September 10th post. I was so interested to have found someone (of the very few!) who had a child test positive for Krabbe since the start of newborn testing.