Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Hi all! I've been lurking for a while and thought i'd finally introduce myself and tell my story. My name is Debbie and I am the mother of a beautiful 3 month old daugher w/cf. Her name is is. She was diagnosed about one week after birth from the results of the newborn screening done here in WI. She was put on enzymes shortly after that and has been doing very well since. She weighs close to 12 lbs now which is at 25% on the growth charts. Just last week she started to cough a little. So at her next clinic visit on the 30th they will teach us chest PT. My husband and I are kind of bummed that we have to do this already and hope it isn't the beginning of alot of lung problems for her. I'm looking forward to learning alot from all of you experienced parents out there! Debbie - mom of is 3 months w/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Debbie-welcome....I try to keep positive. The diagnosis sucks big time but if she isn't treated promptly and properly you have problems down the road. My kids weren't diagnosed til 4 and 6 (and I was pregnant with No. 3). My daughter incurred scar tissue as a result of untreated infections and pneumonias. If she is coughing bring her to CF immediately. I know its so overwhelming! Take baby steps and tell the Drs. to slow down when/if they are giving too much information. Allow them to wait for YOU to process it. You are paying THEM........... Rosemary in NY with 3 children (12, 10 and 6) with CF. I have a dog named TOBI and coined the phrase " BREATHE DAMMIT " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 In a message dated 6/12/2003 5:52:12 PM Central Daylight Time, dweber_73@... writes: > Debbie - mom of is 3 months w/cf I Debbie I am another Deb on this list. I have three daughters and two of them have CF. We have know about my daughters having CF for 4 years and I am still learning new things about CF. This is a great group!! I don't know what I would do if I didn't have other people to talk to that are going through the same things we are. I'm glad you came out and shared us you story we always love to hear from new people. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 -Welcome Debbie I have a 3 yr old ds with cf. Glad to hear that your dd is doing well. If you don't mind me asking which cf clinic do you go to in wisconsin. We go to the wisconsin childrens hospital. this is a great group. mom to Breanna 11 wocf, adhd and Noah 3 wcf -- In cfparents , " Debbie " <dweber_73@y...> wrote: > Hi all! I've been lurking for a while and thought i'd finally > introduce myself and tell my story. My name is Debbie and I am the > mother of a beautiful 3 month old daugher w/cf. Her name is > is. She was diagnosed about one week after birth from the > results of the newborn screening done here in WI. She was put on > enzymes shortly after that and has been doing very well since. She > weighs close to 12 lbs now which is at 25% on the growth charts. > Just last week she started to cough a little. So at her next clinic > visit on the 30th they will teach us chest PT. My husband and I are > kind of bummed that we have to do this already and hope it isn't the > beginning of alot of lung problems for her. > > I'm looking forward to learning alot from all of you experienced > parents out there! > > Debbie - mom of is 3 months w/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Hi Debbie!! Welcome to the list. I wouldn't be too worried about the chest pt right now, most cf docs start having parents do it just as a preventative measure soon after diagnosis. My daughter was diagnosed in November and we have been doing the chest pt since then, but she hasn't had ANY respiratory problems. I wish we could have caught my daughters cf sooner, as she in 11 months old today and just now weighs 15 lbs! Good luck and I hope things continue to go well for you. Katy Mom to Austin almost 4 w/o CF & Piper 11 months w/CF Debbie wrote: Hi all! I've been lurking for a while and thought i'd finally introduce myself and tell my story. My name is Debbie and I am the mother of a beautiful 3 month old daugher w/cf. Her name is is. She was diagnosed about one week after birth from the results of the newborn screening done here in WI. She was put on enzymes shortly after that and has been doing very well since. She weighs close to 12 lbs now which is at 25% on the growth charts. Just last week she started to cough a little. So at her next clinic visit on the 30th they will teach us chest PT. My husband and I are kind of bummed that we have to do this already and hope it isn't the beginning of alot of lung problems for her. I'm looking forward to learning alot from all of you experienced parents out there! Debbie - mom of is 3 months w/cf ------------------------------------------- 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 June 12, 2003 Report Share Posted June 12, 2003 If you would like me to send you some literature /tapes on Cf I will be happy to .Have they given you some at the clinic. that is a very good clinic, but they might nit have same items. let me know what you have & I will be happy to send some other to you LOVE & HUGS, grandmomBEV Hello - I'm new Hi all! I've been lurking for a while and thought i'd finally introduce myself and tell my story. My name is Debbie and I am the mother of a beautiful 3 month old daugher w/cf. Her name is is. She was diagnosed about one week after birth from the results of the newborn screening done here in WI. She was put on enzymes shortly after that and has been doing very well since. She weighs close to 12 lbs now which is at 25% on the growth charts. Just last week she started to cough a little. So at her next clinic visit on the 30th they will teach us chest PT. My husband and I are kind of bummed that we have to do this already and hope it isn't the beginning of alot of lung problems for her. I'm looking forward to learning alot from all of you experienced parents out there! Debbie - mom of is 3 months w/cf ------------------------------------------- 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 June 12, 2003 Report Share Posted June 12, 2003 When my son was little, we used a tiny vibrator on him rather than the percussion. It is a handheld thing that occupational and physical therapists use often. It put Ashton right to sleep. We would sometimes do a minute of the regular percussion with our hands or a small percussor and then a minute of the vibrator. Worked well for us and wasn't as hard on our hands and wrists. > Hi all! I've been lurking for a while and thought i'd finally > introduce myself and tell my story. My name is Debbie and I am the > mother of a beautiful 3 month old daugher w/cf. Her name is > is. She was diagnosed about one week after birth from the > results of the newborn screening done here in WI. She was put on > enzymes shortly after that and has been doing very well since. She > weighs close to 12 lbs now which is at 25% on the growth charts. > Just last week she started to cough a little. So at her next clinic > visit on the 30th they will teach us chest PT. My husband and I are > kind of bummed that we have to do this already and hope it isn't the > beginning of alot of lung problems for her. > > I'm looking forward to learning alot from all of you experienced > parents out there! > > Debbie - mom of is 3 months w/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 GREAT advise , as usual. how are you doing gal. I don't think I got you post about your appt. Is all better now ? I hope you got some good answers & helpful info. You are such a fine gal & do so much for others, its your turn to have shoulders to lean on, soooooooooooo I am here...all of us are here too. I hope DH is behaving too . Let us hear from you soon. Did you notice the new gal on list that also has 3 little ones with CF. I guess you have already ....I told her others were here to that had that in common. LOVE & HUGS, GrandmomBEv Re: Hello - I'm new Debbie-welcome....I try to keep positive. The diagnosis sucks big time but if she isn't treated promptly and properly you have problems down the road. My kids weren't diagnosed til 4 and 6 (and I was pregnant with No. 3). My daughter incurred scar tissue as a result of untreated infections and pneumonias. If she is coughing bring her to CF immediately. I know its so overwhelming! Take baby steps and tell the Drs. to slow down when/if they are giving too much information. Allow them to wait for YOU to process it. You are paying THEM........... Rosemary in NY with 3 children (12, 10 and 6) with CF. I have a dog named TOBI and coined the phrase " BREATHE DAMMIT " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Welcome Debbie and is! We are glad you've found us and even though I am sorry to hear about is' cf, this is a good place to be. My daughter is 19 and is doing well. She is on albuterol, cromolyn, pulmozyme, flovent, rhinocort and tobi (along with some oral meds) and she does her treatments and vest everyday but she is very lucky and she has stayed pretty healthy. She has had a lot of sinus problems and 13 surgeries but it is better than having the severe lung problems. She has one df 508 and her other mutation is still unknown. Could be why her cf is pretty mild compared to a lot of people her age. Anyway, again welcome and I hope you enjoy the list and will learn alot. Please feel free to ask anytime you have questions. love, M Mom of age 19wcf and Nick age 21 nocf and coming home for the summer from college today Quote Link to comment Share on other sites More sharing options...
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