Guest guest Posted February 15, 2001 Report Share Posted February 15, 2001 Thanks to all for your words.Thanks to for the offer of the phone call.I'll pass along any words you all have for my sister & family.She is already going to the Dr. today with some advice I'd gotten yesterday.Cole has a trech and feeding tube as of last week.He had a ductus repaired in his heart at about 4 weeks.He has a big hole in the bottom of his heart (vsd?), that they say is stabalized for now and hopefully can wait for surgery when he is older & stronger.He had major problems with secretions from birth,don't know if it's now better, or just better delt with.They're kind of dismall about his eyes and ears,but we're not.He has known " Mom's " voice since the get go, and sees toys when they're held for him to see, looks right at the camera when his picture is taken (cute!).He seems to run mysterious fevers,develope meysterious infections (they say from things like his IV's, broviac,etc.) Sometime the hospital is just as ignorant as we are, but thank God Cole's Dr. is open for any information or suggestion.This is a major learning experience for him also,but I guess all CHARGE babies have to be " learned " individually.Right now he is having bad withdraws from pain medications.The new word yesterday was klebsiellas.It was first just in his secretions,but now is in his urine. We've been told Cole is milder than most, but it sure doesn't feel like it sometimes.I don't know alot of the medical terms, but if any of you-all have questions, I'll definitly get the answers!,so maybe he can be a great success story too!!Thank you ALL again!!! ,wife to Jimmy,mom to Dusty 10 & Sadie 17 months...Sister to ,sister-in-law to Jim,parents of Cole CHARGE..,2months,Kayla 10 & Neysa (kneesa)6. was told she would probably never have children, and had a little help conceiving the 1st two perfectly rotten girls.Cole came as a BIG!! HELLO!! He is very much wanted and loved by ALL. We have great community support, and now we have YOU! THANKS AGAIN. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2001 Report Share Posted February 15, 2001 , I know all of these problems are so overwhelming! Little Cole sounds like he is experiencing a lot of what my daughter went through when whe was in the first years. She also had a PDA Ligation (the ductus repair) and they wanted to wait for the ASD (hole) to be repaired until later~she didn't have to have surgery because the hole closed itself within a few years and never caused her any heart problems. You really just cannot predict with CHARGERs. They told us there was no way she could see at all and there was nothing to be done to repair the vision BUT we caught that little blind girl enjoying christmas lights and tracking Mom across the room. She is " blind " and has very little vision but because she has no cognitive delays she uses the small amount of vision very effectively and so is considered to have very good functional vision. Keep doing what you guys are doing and encouraging the parents because there is a lot of hope for Cole to live a very happy and productive life besides being an inspiration to everyone he comes in contact with. I think CHARGERs in general have the gift to motivate and inspire and change the hearts of everyone around them. I'm just waiting for that to be put in the manual as a definite CHARGE thing!! Mom to (11), Caleb(8), and (5 1/2 w/ CHARGE) Mesquite, TX On Thu, 15 Feb 2001 13:42:13 -0000 llpreston2001@... writes: > Thanks to all for your words.Thanks to for the offer of the > phone call.I'll pass along any words you all have for my sister & > family.She is already going to the Dr. today with some advice I'd > gotten yesterday.Cole has a trech and feeding tube as of last > week.He > had a ductus repaired in his heart at about 4 weeks.He has a big > hole > in the bottom of his heart (vsd?), that they say is stabalized for > now and hopefully can wait for surgery when he is older & > stronger.He > had major problems with secretions from birth,don't know if it's now > > better, or just better delt with.They're kind of dismall about his > eyes and ears,but we're not.He has known " Mom's " voice since the get > > go, and sees toys when they're held for him to see, looks right at > the camera when his picture is taken (cute!).He seems to run > mysterious fevers,develope meysterious infections (they say from > things like his IV's, broviac,etc.) Sometime the hospital is just as > > ignorant as we are, but thank God Cole's Dr. is open for any > information or suggestion.This is a major learning experience for > him > also,but I guess all CHARGE babies have to be " learned " > individually.Right now he is having bad withdraws from pain > medications.The new word yesterday was klebsiellas.It was first just > > in his secretions,but now is in his urine. We've been told Cole is > milder than most, but it sure doesn't feel like it sometimes.I don't > > know alot of the medical terms, but if any of you-all have > questions, > I'll definitly get the answers!,so maybe he can be a great success > story too!!Thank you ALL > again!!! > > ,wife to Jimmy,mom to Dusty 10 & Sadie 17 months...Sister to > ,sister-in-law to Jim,parents of Cole CHARGE..,2months,Kayla 10 > & > Neysa (kneesa)6. was told she would probably never have > children, and had a little help conceiving the 1st two perfectly > rotten girls.Cole came as a BIG!! HELLO!! He is very much wanted and > > loved by ALL. We have great community support, and now we have YOU! > THANKS AGAIN. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2001 Report Share Posted February 16, 2001 , I have to say that one of the special things in Patty's life is our extended family's. I think we would not have done so well without them. This includes a, Patty's sister. Wheneverrwe were in the hospital with Patty, Kris was still loved and paid attention to. I also never used a baby sitter. I do have to admit that there have been times when they drove us crazy, but I know we can always count on them. Your sister needs you now. So do her other children. I know am lucky. My advice is not to tell her what to do but give her information you have learned and stand by them. Without my family's support I would not have been as strong. Bonnie, Mom to a 18, Patty CHARGE 16, and wife to Quote Link to comment Share on other sites More sharing options...
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