Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 Thanks I sure hope that we do not get the other news as well, but you know knowing is better than not Wish us luck please. Best wishes to you and your family. It makes me feel better knowing that there are people out there with cf that have wonderful families. I breaks my heart thinking that my son as well as 98% of males diagnosed with cf will not be able to have children on their own. My family makes me so happy. Every wish I have leads to a long and healthy life to all of those with it. Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2003 Report Share Posted September 19, 2003 , that is a great plan. Almost exactly what we do funny how that works. Here is his plan you can offer suggestions if you think of any I love new ideas. Wake about 7:30 Take Previcid 15 mg ganules. This is mixed with 1 oz water so it gives me a little time to do am treatment. Albuterol and CPT 8:00 bottle usually only take 4 oz Solids with in half our ( huge digestion troubles 1 mt 12 ultrase / reglan usually a nap at about 9:00 only 30 to 45 min. 10:00 zantac 11:00 bottle 4 oz Solids with in half hour 1 MT 12 ultrase / reglan / 12:00 albuterol and CPT NAP usually about 1 hour UGH 1:00 zantac 2:00 bottle 4 oz solids with in half hour 1 MT 12 ultrase/ reglan 4:00 zantac 5:00 bottle 4 oz solids with in half hour 1 mt 12 ultrase/ reglan Nap 6:00 treatment albuterol and pulmozyme CPT 7:00 bath play 8:00 bottle 4 oz solids with in half hour 1 ultase MT 12/ ADEKS BED 10:00 albuterol CPT back to bed ( he usually sleeps through this treatment. OK so not much like yours but same concept. I wish that we could figure him out. He would not even eat this often if he had anything to say. If I let him eat when he wanted to it would be a total of 3 times per day and still no more than 4 oz at a time. HE would starve himself I think. Sleep.. The only time he takes a really good nap is if he is sick. Other than that they do not go longer than 1 hour. SHOULD I JUST LEAVE HIM THERE FOR A CERTAIN AMOUNT OF TIME FOR EACH NAP? IT BREAKS MY HEART TO HEAR HIM CRY. Thanks Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2003 Report Share Posted September 19, 2003 You described Zach. He never sleeps but if he has an infection he will take several long naps. Just my opinion - but I am not in favor of letting them cry to teach them to nap longer. I think Zach has enough discomfort to deal with, so I let him sleep when he wants. I am lucky because our schedule is so flexible and I know not everyone's is. Zach is up several times a night too for various reasons - gas, thirsty, snoring, and just wanting to see mommy. We are lucky to get 5-6 hours of straight sleep even now. It is rough, but I can't let him cry. Sara - mommy to Zach 19 months wcf Sleep.. The only time he takes a really > good nap is if he is sick. Other than that they do not go longer than 1 > hour. > SHOULD I JUST LEAVE HIM THERE FOR A CERTAIN AMOUNT OF TIME FOR EACH > NAP? IT BREAKS MY HEART TO HEAR HIM CRY. > > Thanks Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2003 Report Share Posted September 19, 2003 I agree with Sara, but then I'm a grandma. I couldn't stand to let a baby cry. Besides; we tried this with Nick, my son, when he was little and it didn't work. He won! Gale > You described Zach. He never sleeps but if he has an infection he > will take several long naps. > Just my opinion - but I am not in favor of letting them cry to teach > them to nap longer. I think Zach has enough discomfort to deal > with, so I let him sleep when he wants. I am lucky because our > schedule is so flexible and I know not everyone's is. > Zach is up several times a night too for various reasons - gas, > thirsty, snoring, and just wanting to see mommy. We are lucky to > get 5-6 hours of straight sleep even now. It is rough, but I can't > let him cry. > Sara - mommy to Zach 19 months wcf > > > > Sleep.. The only time he takes a really > > good nap is if he is sick. Other than that they do not go longer > than 1 > > hour. > > SHOULD I JUST LEAVE HIM THERE FOR A CERTAIN AMOUNT OF TIME FOR > EACH > > NAP? IT BREAKS MY HEART TO HEAR HIM CRY. > > > > Thanks Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2003 Report Share Posted September 19, 2003 I know. Our kids probably think that we're slow learners. Gale > Gale > Funny how these little one kick our butts all over the place huh? > You have to wonder at times who is REALLY in control > LOL > Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2003 Report Share Posted September 19, 2003 , That's great that it worked for you. Maybe we just didn't know how to make it work for Nick. He would stand in his crib and cry until he fell asleep standing up. The fall (as he fell asleep) would wake him up and he'd continue crying. He had a lot of stamina and could cry all night. We read that we should just check on him every ten minutes, to let him know that we were still there, but to leave him in his crib. We tried this approach also, with no success. We even tried buying him a special " water bed " mattress for his crib. Nick doesn't have cf, so I didn't feel like we were causing him breathing difficulty or anything by letting him cry for a prolonged tamount of time. We eventually gave up. The only way to get Nick to sleep was to put him in bed with us. He slept with us for years. At least we all started to get some sleep. He's 15 now and still needs very little sleep. :>) Gale > Hi Ashauna, > I was uncertain whether I should respond here after reading all the > other posts but here it goes... Sleep training was the best thing we've > done for our kids, including Ellie (wCF). We used a book called Healthy > Sleep Habits, Happy Child. It does have you let the child cry but you > can modify it some. Our daughter is on the same schedule 's son > is on. I did this with my son and loved it but questioned whether I > could do it with Ellie because of the CF. I am really glad I did, she > eats better, is happier, takes better naps etc... when she is on her > schedule. She puts herself to sleep for naps and at night. When she > wakes up she plays in her crib till I come get her. The book is good > because it gives a lot of reasons why kids need good sleep. One of the > most important things this Dr. says is that a late bedtime can ruin > everything, naps, morning wake time, eating, attention span etc... It > is hard to get everything done by 7pm but she really does do better when > we can get her in bed early. It is not easy listening to them cry but > it didn't last long and I tell myself I'm helping her be happier and > healthier. I hope this helps give another perspective. I wouldn't have > said anything if I didn't have proof it works. I hope you find > something that works for you all! > > > Mom to Ellie 10mo wCF and Jack 3yo noCF > > Re: Re: Ashuana > > I know what you mean I feel like a real ass excuse my language when I do > this. However I guess that I feel like I have to try something because > he is misserable with out the sleep. > Darned if you do and Darned if you don't > Love to you and Zach > Ashauna > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2003 Report Share Posted September 19, 2003 I have struggled with this issue for a long time and the method I have chosen is the only one I can handle. When Zach turned one, we said enough is enough - he is sleeping through the night. We let him cry it out and would check on him often. He cried a lot! After a few weeks of this we find out Zach has cf. My baby had been crying because of malnutrition and was so uncomfortable. I decided right then that sleep training was over. If I cannot tell the difference between severe pain cries and normal fussiness then I can't let him cry. I do believe others have had great success with sleep training, but all kids are different. Colgan sounds like he has had a rough start and if you want to pick him, do so guiltfree. You are in a difficult situation and it is ok to get frustrated. I have left the room with Zach crying just to take a deep breath. After a while you may notice Colgan has his own routines. After 19 months I now know Zach needs at least 20 minutes to wind down before he can get to sleep. That includes cpt, books, playing peek a boo, etc. He also needs darkness and a quiet room. However, knowing that it will take 20 minutes seems to make it less frustrating. I know he will be asleep eventually and I can wait it out. Hope this helps. Sara > I know what you mean I feel like a real ass excuse my language when I do > this. However I guess that I feel like I have to try something because > he is misserable with out the sleep. > Darned if you do and Darned if you don't > Love to you and Zach > Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2003 Report Share Posted September 20, 2003 Oh no. I just wanted you to know that we have struggled too and " I feel your pain " . BTW Zach slept from 10 until 6:30 straight last night. OMG I fell like a new woman! Sara I didn't mean to make little of > your struggles I hope that you do not take it this way. > Ashauna Quote Link to comment Share on other sites More sharing options...
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