Recent content by jshet

  1. J

    My grandson is in the Hospital.. I am having one of those days :(

    Amazing news Carol! So happy for Connor, he needed good news. I will continue to keep you both in my prayers. I hope he has a great summer full of fun and good health. Take care, Janelle
  2. J

    really sick guys in hospital

    You are in my thoughts and prayers. Praying you begin to breathe easy and the medicine restores your health to better than before you got sick. God bless, and please keep us posted.
  3. J

    Missing School

    So sorry you are having such a rough time. It must be so frustrating to try and get caught up and stay caught up when you have been having a hard time with your health. My son has an IEP, but he is in a life skills setting at school. One good thing with him being in this type of setting is...
  4. J

    Any ideas?

    Hey Beaz, thank you for the reply. I did just check out that formula, and it has milk and soy, and he is allergic to both. The allergies are a big issue to find formulas to choose from. I am aware of 2 he can have. Thanks again.
  5. J

    Any ideas?

    Thank you both. He actually had a gi appointment yesterday. We are increasing the feed time with adding the duocal. He did say we cannot increase the concentration of the formula because it could actually cause dehydration. He said that he and the cf team do not know why he is having such a...
  6. J

    Children's Hospital Pittsburgh CF Clinic

    Thank you so much Beaz. Dr Weiner is actually one we are considering along with Dr Spaher. My son is familiar with Dr Spaher from inpatient stays, and he is great also. we are scheduled to see Dr Spaher at the next clinic visit hoping my son will be comfortable with him , but was told if we...
  7. J

    My grandson is in the Hospital.. I am having one of those days :(

    Oh Carol, I am so sorry Connor is having such a hard time. I know he went through such a terrible ordeal a few months ago, and I don't blame him for being so frightened. Poor kid had had a bad run lately. I will definetly keep him and your family in my prayers. jacob had the same issues with...
  8. J

    Getting Port next week: words of wisdom

    Hi. My son had his port placed last April, so it has been a year, and he loves it. His is placed high on his right chest. His sticks out a good bit because he is super thin. I think the more meat you have, the less noticable it is. I believe it was a week before he could really lift or...
  9. J

    CF Family in need of a new kitchen

    I voted. My son like yours has cf and autism. Good luck!
  10. J

    Lisa Greene's Husband Passed Away

    Deepest sympathy for the family. Keeping them all in my prayers. God bless.
  11. J

    E coli

    Thank you Aboveallislove. That was so kind to say. And yes his heart is his best piece. He is such a sweet kid. Never complains. I am so grateful that i have been blessed with him. He has taught me more in 18 years then i could ever teach him in my lifetime. He definetly was my saving...
  12. J

    E coli

    Abovesllislove, yes it does sometimes feel like we are doing all the work, lol. We are able to see all of the pieces , and boy does my kid have a bunch of pieces. All in all, i guess it could be a heck of a lot worse. Checkinng into probiotics. kosdancer, thanks for easing my mind about the...
  13. J

    E coli

    Thank you both. He does have an appointment with his gi doctor the end of the month, and i will see what he thinks. I think there must be some reflux going on. He also has had sore throats off and on the last couple months. If it comes back, i am going to ask that he have another swab. He...
  14. J

    E coli

    Hi guys. Got my sons culture results today, and the only thing that grew was e coli. They said they do not treat it. The nurse also said it probably is due to him refluxing. He is on reflux medication already. He did have a drop in his pft's at clinic, but his doctor was not overly...
  15. J

    Port questions

    Hi randogirl. My son has had his port for a year, and we love it. His is placed through his jugular vein, and sits above his right chest(nipple). Like you he is very underweight,and you can see it sticking out through all his shirts. But he has developmental issues, and is a guy, so it does...