Monday morning my wife got a call from our pediatrician saying that our 2.5 week old son may have Cystic Fibrosis. I have heard of CF but I did not know what the disease was all about. So my wife called Children's Hospital (Obviously upset) and demanded that we get an appointment on Tuesday morning. For some reason Children's does the CF test once a week!!!! So we would have had to wait over a week. Googling the disease I see a lot of information about chances and the possibility of a lung transplant later in life.
This morning we went to Children's and got the test done. It was the first test he had to go through and it was tough. We had to hold each arm straight while they hooked up an electrode. That on top of him being hungary it was not a pleasant experience.
While we were waiting for the results the gene counselor sat down with use and explained a little bit more about this process and answered any questions we had. The first words out of her mouth were "Did your doctor explain how slim the chances are that Jack has CF?" WTF, I mean really you call use and tell us all this news and we are sick all night just to find out that the chances are slim. We spoke with a woman in the waiting room and she said they have done 700 tests at Children's for CF and only one has been positive.
The results came back negative for Jack. We were so relieved.
This does let us know however that Jack is a carrier of this gene that causes CF. Which means that my wife or I or both are a carrier as well. When asked why the OB did not test us for this the answer was simply that some do and some don't. Knowing ahead of time how simple the process is for adults I would recommend everyone ask their doctor to get tested before trying to have any children. It might save you from some scary experience like this. At least down the road Jack will be able to let his partner know that he is a carrier and they may be able to do the same. This is assuming that there is no cure.
Fing's Journal
My Podcast Link
11/04/2008 21:36 #46529
Scary start to the week10/20/2008 12:00 #46208
Jack Henry Finger has arrivedHe is here. He was born at 9:39 PM on October 16th. He came after almost 3 hours of pushing. Mary did great and he is beautiful. I love his pose in this one. We are now at home and getting used to him being at home. It is so good to be home after a few nights in the hospital. There is only so many magazines you can read and things you can do to pass the time
museumchick - 10/22/08 21:24
Congrats. He's adorable!
Congrats. He's adorable!
tinypliny - 10/20/08 19:13
He's so cute!!!!!! Congratulations!!! :)
He's so cute!!!!!! Congratulations!!! :)
gardenmama - 10/20/08 18:47
How cool! Hope you have a fabulous time getting to know each other. He's beautiful (in a handsome kind of way, of course)!
How cool! Hope you have a fabulous time getting to know each other. He's beautiful (in a handsome kind of way, of course)!
mrmike - 10/20/08 14:53
Congrats and welcome home
Congrats and welcome home
jason - 10/20/08 14:03
Congratulations, Dad! Here's to hoping you get more sleep than the average dad.
Congratulations, Dad! Here's to hoping you get more sleep than the average dad.
matthew - 10/20/08 14:00
Congrats!
Congrats!
paul - 10/20/08 13:44
Congratulations on the baby and on uploading the pic!
Congratulations on the baby and on uploading the pic!
jim - 10/20/08 12:41
CONGRATS!
CONGRATS!
10/05/2008 22:02 #45950
Count down to babyThe October 14th due date is really closing in fast. It is hard to believe that 9 months has gone by so quickly. I am not very good at judging time when it comes to years but this past few as life changes I have come to learn how people keep everything straight. With a wedding, house and baby in the last three you start having big events to compare time with.
The crib finally came in though. The hurricane held up the shipment and there seemed to be some confusion on the order as well. I was pleased that we got to support a local business (White's Furniture on Kenmore Ave.). I can finally now say that the nursery is finished!
My wife made this split up tree art:
The crib finally came in though. The hurricane held up the shipment and there seemed to be some confusion on the order as well. I was pleased that we got to support a local business (White's Furniture on Kenmore Ave.). I can finally now say that the nursery is finished!
My wife made this split up tree art:
gardenmama - 10/05/08 23:58
What a great room! Joy to you all.
What a great room! Joy to you all.
tinypliny - 10/05/08 22:12
It's so colourful and pretty! I especially love the orange. The tree art is awesome! Good Luck to you and to your wife!
It's so colourful and pretty! I especially love the orange. The tree art is awesome! Good Luck to you and to your wife!
09/13/2008 23:27 #45671
The real reason...behind estrip.org
tinypliny - 09/14/08 13:15
Does this "super secret method" involve displaying ads on your blog?
Does this "super secret method" involve displaying ads on your blog?
09/08/2008 20:55 #45610
Back Pain...booooooSo for the past few days I have had some lower back pain. I think this actually started a week or so ago but has been off and on. I can't tell you when I have ever had any back pain for more then a day. Usually it was due to working hard the day before or something but this is different. I have been on the couch with a heating pad tonight to try and alleviate some of the pain. I am worried that if I go to the doctor they will just tell me to take some pain meds or something. I have put on a few pounds since my wife got pregnant which I know is normal but I don't really think that is the cause. Perhaps when you turn 30 everything does start to fall apart.
mrdeadlier - 09/10/08 11:17
It's just sympathy pains for Brady. It was his knee you dummy, not his back. Get it right.
It's just sympathy pains for Brady. It was his knee you dummy, not his back. Get it right.
tinypliny - 09/09/08 21:46
Have your workspace ergonomically assessed. My brother had lower back pain till he got his chair and desk adjusted to maintain a non-slouching posture. At home, I purposely work sitting straight on the floor so that I am not tempted to slouch.
Have your workspace ergonomically assessed. My brother had lower back pain till he got his chair and desk adjusted to maintain a non-slouching posture. At home, I purposely work sitting straight on the floor so that I am not tempted to slouch.
mrmike - 09/09/08 11:01
Nah, if I'm any indication, the wheels don't come off until 40. I've had back woes since my teens so age is relative. Crank the heat and it should do the trick.
Nah, if I'm any indication, the wheels don't come off until 40. I've had back woes since my teens so age is relative. Crank the heat and it should do the trick.
springfaerie - 09/08/08 23:00
God, I F-ing not! I only turned 30 in March and am planning on not even looking (or acting or feeling like) I'm 30 until my late 30's at the very least! Good luck with that back thing. I have friends with back problems. Frankly, they blow!
God, I F-ing not! I only turned 30 in March and am planning on not even looking (or acting or feeling like) I'm 30 until my late 30's at the very least! Good luck with that back thing. I have friends with back problems. Frankly, they blow!
gardenmama - 09/08/08 22:35
My Chiropracter recommends a couple days of icing before any heat treatment. At first I though he was nuts, I couldn't imagine actually putting ice on my back, but I find it makes a huge difference. I usually do 20/25 min. on 40/45 min. off. I bought a great flexible ice/heat pack at CVS that's about 8" x 6" - cost about $10. It really helps calm the muscle spasms. I have recommended my Dr. (Gerard Werder) to many - he's a really good guy and does a great job. He's located on W. Utica near Elmwood.
My Chiropracter recommends a couple days of icing before any heat treatment. At first I though he was nuts, I couldn't imagine actually putting ice on my back, but I find it makes a huge difference. I usually do 20/25 min. on 40/45 min. off. I bought a great flexible ice/heat pack at CVS that's about 8" x 6" - cost about $10. It really helps calm the muscle spasms. I have recommended my Dr. (Gerard Werder) to many - he's a really good guy and does a great job. He's located on W. Utica near Elmwood.
libertad - 09/08/08 22:01
It seems that when I had back trouble it was from sitting at a desk. I still do but not like I did when I used to do ten hour days four days a week straight. I used to be in so much pain on my days off. Haven't really had trouble since, but I'm sure I still do a lot of things wrong such as slouch and not have proper alignment at computer desk. Hope you figure it out.
It seems that when I had back trouble it was from sitting at a desk. I still do but not like I did when I used to do ten hour days four days a week straight. I used to be in so much pain on my days off. Haven't really had trouble since, but I'm sure I still do a lot of things wrong such as slouch and not have proper alignment at computer desk. Hope you figure it out.
paul - 09/08/08 21:18
Last year I had so much back and neck pain. I ended up at the Chiropracter which helped. But then it came back and I decided to look into it more. Turned out to be the way I was sitting as after I adjusted my work station to make me not look down, it got better. That and lifting at the gym helped a ton too. Good luck. I you do decide to try chiropractic, I liked Patrick Oneil on Bidwell.
Last year I had so much back and neck pain. I ended up at the Chiropracter which helped. But then it came back and I decided to look into it more. Turned out to be the way I was sitting as after I adjusted my work station to make me not look down, it got better. That and lifting at the gym helped a ton too. Good luck. I you do decide to try chiropractic, I liked Patrick Oneil on Bidwell.
Whew. That is a relief. Thank goodness.
Unfortunately, at the rate we are sequencing genomes and identifying candidate putative genes for apparently everything on this planet on a black and white scale (and with practical therapies and environment/lifestyle interaction data lagging far far behind), I think parents may have to face more and more of these false alarms in the near future. :/
As a parent, I empathize. We've been through a number of those types of moments. It can be hellish, but combined strength is an amazing thing.