ashley had
a little bloody nose today and boy did i get nervous. she hasn't had one since but boy have i been watching her. i sooo don't want to go through that again. i know that they can do something for it but it is still so nerve wracking. next thursday she gets her platelets checked again, i just hope that she doesn't drop again because i don't want to go through that again. the main fear with her platelets being that low is an internal bleed and them not being able to stop it. i hate this. i have never been a scared parent, you know, nervous about every little thing but i feel like that now. i feel like i am bugging her soo much even though she probably doesn't even notice when i am checking her over at bath time to see if she has any excessive bruising or spots. i cannot wait until these 6 months have passed and we know for sure or not if she has the accute form of ITP or the chronic form.
ohh and to top all of this crap off my sweet sweet baby nephew might have cystic fibrosis. i am sooo scared for him. he is only almost 20 months old. for sure we know that he has pancreatic enzyme deficiancy and he takes enzymes with every meal to help him digest the foods and not be in sooo much pain.
anyway they did two sweat tests one being 41 and the other one being 30. my sis said that depending on who you go by either number is borderline for CF. anyway at the last dr's appt the lung specialist gave them a bunch of information on it, most of it saying that more then likely he has CF. this is what my sis wrote regarding what the pulmary doc said
"This update is about his last hospital visit to stanford.
ok, the sweat test number was 30 this time. They like to have 2 numbers. so they have 30 and 41.
depending on who you ask, 30-60 is borderline, or 40-60 is borderline.
Eitherway, he ordered the full panel genetics test which is what we have been wanting, YAY!!!
90% of ppl with pancreatic enzyme deiciency (which kaiden has) have CF.
You have to have 2 genes to have CF. he said there is a 1% chance that he HAS CF but no mutations show up on the panel because they are still unknown. If that happens they will do other tests like throat cultures, and if those come back positive, than he has CF.
There is a 20% chance that he has CF but only one gene shows up. In that case he would be labeled with CF (not a carrier) because he has the pancreatic insufficiency. and carriers dont exhibit symptoms. so one gene would be unknown.
Thats pretty much it. 2-4 wks for the results of the gene test
"
anyway he got the full genetics testing done the day after (or was it two days after) easter. so right now we are just waiting and waiting and waiting. i feel like this has been going on FOREVER and i know that i am sick of it and since i am dealing with ashley's thing i KNOW that heather and neils are sick of waiting too.
here is a link about cystic fibrosis
http://www.cff.org/AboutCF/
PLEASE SEND ALL THE GOOD AND POSITIVE THOUGHTS THAT YOU HAVE TO OUR FAMILY and if you believe in god then PLEASE PRAY FOR US TOO.
ohh and to top all of this crap off my sweet sweet baby nephew might have cystic fibrosis. i am sooo scared for him. he is only almost 20 months old. for sure we know that he has pancreatic enzyme deficiancy and he takes enzymes with every meal to help him digest the foods and not be in sooo much pain.
anyway they did two sweat tests one being 41 and the other one being 30. my sis said that depending on who you go by either number is borderline for CF. anyway at the last dr's appt the lung specialist gave them a bunch of information on it, most of it saying that more then likely he has CF. this is what my sis wrote regarding what the pulmary doc said
"This update is about his last hospital visit to stanford.
ok, the sweat test number was 30 this time. They like to have 2 numbers. so they have 30 and 41.
depending on who you ask, 30-60 is borderline, or 40-60 is borderline.
Eitherway, he ordered the full panel genetics test which is what we have been wanting, YAY!!!
90% of ppl with pancreatic enzyme deiciency (which kaiden has) have CF.
You have to have 2 genes to have CF. he said there is a 1% chance that he HAS CF but no mutations show up on the panel because they are still unknown. If that happens they will do other tests like throat cultures, and if those come back positive, than he has CF.
There is a 20% chance that he has CF but only one gene shows up. In that case he would be labeled with CF (not a carrier) because he has the pancreatic insufficiency. and carriers dont exhibit symptoms. so one gene would be unknown.
Thats pretty much it. 2-4 wks for the results of the gene test
"anyway he got the full genetics testing done the day after (or was it two days after) easter. so right now we are just waiting and waiting and waiting. i feel like this has been going on FOREVER and i know that i am sick of it and since i am dealing with ashley's thing i KNOW that heather and neils are sick of waiting too.
here is a link about cystic fibrosis
http://www.cff.org/AboutCF/
PLEASE SEND ALL THE GOOD AND POSITIVE THOUGHTS THAT YOU HAVE TO OUR FAMILY and if you believe in god then PLEASE PRAY FOR US TOO.
posted by christina at 6:24 PM
3 Comments:
I am praying for Ashley and your familt Christina. I hope you get good news.
Check out my new blog, I have tagged you (when you have time.)
Christina. You must a horrible nervous wreck. I know if i were in the same situation, i would be. I feel for you. HUGS!
The other day when she came up to spend the night we stopped by Blockbuster to pick out a movie. As we were walking to the car she stopped and asked me if she could run to the car like dyllan was. It nearly broke my heart that she had to stop and ask. Poor baby. I love her so much. Sue
Post a Comment
<< Home