Scarlett81
New member
Oh my goodness JenniferP
Youre children are beautiful!
Youre children are beautiful!
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Hey Julie, havn't heard of you!
- Thread starter anonymous
- Start date
Scarlett81
New member
Oh my goodness JenniferP
Youre children are beautiful!
Youre children are beautiful!
Jen, it's so good to see you on this site again!!! I know you must be incredibly and mind numblingly busy but it is so nice to see you post here and there. I think about you a lot and hope all is well with Andrew and hope that you are getting what you need and that the military is paying for what they did. Take care and know that you are ALWAYS in my thoughts and prayers.
Jen, it's so good to see you on this site again!!! I know you must be incredibly and mind numblingly busy but it is so nice to see you post here and there. I think about you a lot and hope all is well with Andrew and hope that you are getting what you need and that the military is paying for what they did. Take care and know that you are ALWAYS in my thoughts and prayers.
JennifersHope
New member
Julie...
Wahooooooooooooooooooo Post as soon as you get home from church for sure...................................... I will be anxiously checking posts on Sunday from work........
Glad to see you are okay...
Love,
Jennifer
Wahooooooooooooooooooo Post as soon as you get home from church for sure...................................... I will be anxiously checking posts on Sunday from work........
Glad to see you are okay...
Love,
Jennifer
JennifersHope
New member
Julie...
Wahooooooooooooooooooo Post as soon as you get home from church for sure...................................... I will be anxiously checking posts on Sunday from work........
Glad to see you are okay...
Love,
Jennifer
Wahooooooooooooooooooo Post as soon as you get home from church for sure...................................... I will be anxiously checking posts on Sunday from work........
Glad to see you are okay...
Love,
Jennifer
oh, thanks you guys!
Unfortunately, Andrew is back in the hospital, he was admitted on Wednesday. They are considering doing a fundoplication (sp?) Nissen, I'm really nervous about it, I didn't realize it was such an invasive procedure. Doctor is concerned about doing it on him because of his previous meconium peritonosis, plus for some reason children with neurological impairment tend to have more complications, he just has all the odds stacked against him.
The Cystic Fibrosis and Cerebral Palsy are a very bad combo, they tend to overlap each other when it comes to the GI complications, not to mention a million other things. You never realize how much the brain really controls until you deal with it first hand.
And the alternatives aren't much better, he say's if Andrew continues to reflux it can eventually kill him, I had no idea reflux could be so bad. I feel like we are in one of the worst positions ever. My husband doesn't know whether to scratch his watch or wind his butt.
Keep us in your thoughts, we appreciate it so much.
Unfortunately, Andrew is back in the hospital, he was admitted on Wednesday. They are considering doing a fundoplication (sp?) Nissen, I'm really nervous about it, I didn't realize it was such an invasive procedure. Doctor is concerned about doing it on him because of his previous meconium peritonosis, plus for some reason children with neurological impairment tend to have more complications, he just has all the odds stacked against him.
The Cystic Fibrosis and Cerebral Palsy are a very bad combo, they tend to overlap each other when it comes to the GI complications, not to mention a million other things. You never realize how much the brain really controls until you deal with it first hand.
And the alternatives aren't much better, he say's if Andrew continues to reflux it can eventually kill him, I had no idea reflux could be so bad. I feel like we are in one of the worst positions ever. My husband doesn't know whether to scratch his watch or wind his butt.
Keep us in your thoughts, we appreciate it so much.
oh, thanks you guys!
Unfortunately, Andrew is back in the hospital, he was admitted on Wednesday. They are considering doing a fundoplication (sp?) Nissen, I'm really nervous about it, I didn't realize it was such an invasive procedure. Doctor is concerned about doing it on him because of his previous meconium peritonosis, plus for some reason children with neurological impairment tend to have more complications, he just has all the odds stacked against him.
The Cystic Fibrosis and Cerebral Palsy are a very bad combo, they tend to overlap each other when it comes to the GI complications, not to mention a million other things. You never realize how much the brain really controls until you deal with it first hand.
And the alternatives aren't much better, he say's if Andrew continues to reflux it can eventually kill him, I had no idea reflux could be so bad. I feel like we are in one of the worst positions ever. My husband doesn't know whether to scratch his watch or wind his butt.
Keep us in your thoughts, we appreciate it so much.
Unfortunately, Andrew is back in the hospital, he was admitted on Wednesday. They are considering doing a fundoplication (sp?) Nissen, I'm really nervous about it, I didn't realize it was such an invasive procedure. Doctor is concerned about doing it on him because of his previous meconium peritonosis, plus for some reason children with neurological impairment tend to have more complications, he just has all the odds stacked against him.
The Cystic Fibrosis and Cerebral Palsy are a very bad combo, they tend to overlap each other when it comes to the GI complications, not to mention a million other things. You never realize how much the brain really controls until you deal with it first hand.
And the alternatives aren't much better, he say's if Andrew continues to reflux it can eventually kill him, I had no idea reflux could be so bad. I feel like we are in one of the worst positions ever. My husband doesn't know whether to scratch his watch or wind his butt.
Keep us in your thoughts, we appreciate it so much.
I am pretty sure that I told you about my former Supervisor that I had when I worked whose son is 5 months younger than my daughter. He also has CP, but no CF. Tho he cultures pseudomonas & uses many thing that CFers do. I consult with her & vice versa on different things. Daniel (her son) has been thru just about everything. He has a feeding tube, the procedure for the reflux, hip surgery. This past year I think was his best. For most of his winters since birth he has been in/out the hospitals more that I have I think. His parents were at their wits ends because no matter what they did it wasnt good enough to keep him well. Things finally calmed down & they decided to have another child when Daniel was about 4. So now he has a baby sister who he obviously loves. If you ever want to speak with her, I would be happy to let her know. Like I said although Daniel doesnt have CF, the CP brings many challenges that are have similiar affects of CF!
I am pretty sure that I told you about my former Supervisor that I had when I worked whose son is 5 months younger than my daughter. He also has CP, but no CF. Tho he cultures pseudomonas & uses many thing that CFers do. I consult with her & vice versa on different things. Daniel (her son) has been thru just about everything. He has a feeding tube, the procedure for the reflux, hip surgery. This past year I think was his best. For most of his winters since birth he has been in/out the hospitals more that I have I think. His parents were at their wits ends because no matter what they did it wasnt good enough to keep him well. Things finally calmed down & they decided to have another child when Daniel was about 4. So now he has a baby sister who he obviously loves. If you ever want to speak with her, I would be happy to let her know. Like I said although Daniel doesnt have CF, the CP brings many challenges that are have similiar affects of CF!
Karen, you are too sweet!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> , I hope you find the information useful and DO email if you have any questions. It was just a few posts that were bugging me. Sometimes I jump on the bandwagon of those posts, if I really feel passionate about the discussion, but I think this time my irritation with them was fueled by my exhaustion so I choose not to participate for fear of really being mean. Lately though, I have been so exhausted. Mark and I joke that I am "useless" from about 4:30 pm until 9pm, when I get up from my nap (on weekdays) to eat dinner and then go right back to bed. Mark says it gives him a chance to do his homework, but he feels like he isn't spending time with me. I'm trying, but I have never been so exhausted in my life. My mom said usually around 12-16 weeks women who have exhaustion in early pregnancy, which is usually ALL of them, just wake up one morning and feel great around that time. I can't wait for that <img src="i/expressions/face-icon-small-smile.gif" border="0">.
Jen, Mark's cousins have CP. There names are Tamar and Giovanni and they are 8 and 5, and then they have a younger baby who is 3 who doesn't have CP, although they thought he did. Have you found a CP support forum yet? I can ask his cousin if you are in need of some recommendations.
Hope all is well with everyone and thanks for asking about me, I REALLY do appreciate all the love and support on this site, even on my grumpy days <img src="i/expressions/face-icon-small-smile.gif" border="0">
We have our ultrasound tomorrow and then we have to run straight to church with Mark's grandparents so I won't be home until about after 2-3pm WA state time (I suck with time zones) but I will immediately post the ultrasound results.
Jen, Mark's cousins have CP. There names are Tamar and Giovanni and they are 8 and 5, and then they have a younger baby who is 3 who doesn't have CP, although they thought he did. Have you found a CP support forum yet? I can ask his cousin if you are in need of some recommendations.
Hope all is well with everyone and thanks for asking about me, I REALLY do appreciate all the love and support on this site, even on my grumpy days <img src="i/expressions/face-icon-small-smile.gif" border="0">
We have our ultrasound tomorrow and then we have to run straight to church with Mark's grandparents so I won't be home until about after 2-3pm WA state time (I suck with time zones) but I will immediately post the ultrasound results.
Karen, you are too sweet!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> , I hope you find the information useful and DO email if you have any questions. It was just a few posts that were bugging me. Sometimes I jump on the bandwagon of those posts, if I really feel passionate about the discussion, but I think this time my irritation with them was fueled by my exhaustion so I choose not to participate for fear of really being mean. Lately though, I have been so exhausted. Mark and I joke that I am "useless" from about 4:30 pm until 9pm, when I get up from my nap (on weekdays) to eat dinner and then go right back to bed. Mark says it gives him a chance to do his homework, but he feels like he isn't spending time with me. I'm trying, but I have never been so exhausted in my life. My mom said usually around 12-16 weeks women who have exhaustion in early pregnancy, which is usually ALL of them, just wake up one morning and feel great around that time. I can't wait for that <img src="i/expressions/face-icon-small-smile.gif" border="0">.
Jen, Mark's cousins have CP. There names are Tamar and Giovanni and they are 8 and 5, and then they have a younger baby who is 3 who doesn't have CP, although they thought he did. Have you found a CP support forum yet? I can ask his cousin if you are in need of some recommendations.
Hope all is well with everyone and thanks for asking about me, I REALLY do appreciate all the love and support on this site, even on my grumpy days <img src="i/expressions/face-icon-small-smile.gif" border="0">
We have our ultrasound tomorrow and then we have to run straight to church with Mark's grandparents so I won't be home until about after 2-3pm WA state time (I suck with time zones) but I will immediately post the ultrasound results.
Jen, Mark's cousins have CP. There names are Tamar and Giovanni and they are 8 and 5, and then they have a younger baby who is 3 who doesn't have CP, although they thought he did. Have you found a CP support forum yet? I can ask his cousin if you are in need of some recommendations.
Hope all is well with everyone and thanks for asking about me, I REALLY do appreciate all the love and support on this site, even on my grumpy days <img src="i/expressions/face-icon-small-smile.gif" border="0">
We have our ultrasound tomorrow and then we have to run straight to church with Mark's grandparents so I won't be home until about after 2-3pm WA state time (I suck with time zones) but I will immediately post the ultrasound results.