Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 CONGRATS!! That's great. It probably makes you said because that's the first few steps towards college and out of the house! :-) Or your going to have to now run after him that much more that he's mobile. Enjoy! Number23 number23@...> wrote:I have a walker in the house. No, not the kind with little wheels, the kind with two little fat feet !!!! I told you all he took some steps a while back. Well, then he quit. Not a step for a couple weeks. All the sudden he's walking and now often with out any encouragment from us. When I should be thrilled why does this make me sad? s. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 Omigosh!!!! That is fabulous!! We are all over here doing the happy dance for you...if you don't know that it's similiar to the potty dance, not that we've done THAT one in a while. But getting off track!!! That is sooo cool. Way to go Everrett! I am so jealous! I thought we had agreed they would get up and walk the same day darn it! heheh! Wipe your tears and have fun with it. Each stage is so quick don't waste time regretting that the last one's gone already! Before you know it, he'll be out the door waving bye and getting married. One day at a time and rejoice!!! THANK YOU LORD! YOU ARE SOOOOOO GOOD! (ALL THE TIME!) Rejoicing with you, > I have a walker in the house. > > No, not the kind with little wheels, the kind with two little fat feet !!!! I told you all he took some steps a while back. Well, then he quit. Not a step for a couple weeks. All the sudden he's walking and now often with out any encouragment from us. When I should be thrilled why does this make me sad? > > s. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 Crap you're getting me all weepy eyed here. I don't want my baby to grow up. I never had this experience with due to all his foot trouble, and here's Evy doing this *normal* baby stuff and it's really bumming me out to see him growing up. Oh well on the up side he still flat out refuses to hold his own sippy cup. He'll pick it up and yell at me to hold it for him! s. Re: It's Official Omigosh!!!! That is fabulous!! We are all over here doing the happy dance for you...if you don't know that it's similiar to the potty dance, not that we've done THAT one in a while. But getting off track!!! That is sooo cool. Way to go Everrett! I am so jealous! I thought we had agreed they would get up and walk the same day darn it! heheh! Wipe your tears and have fun with it. Each stage is so quick don't waste time regretting that the last one's gone already! Before you know it, he'll be out the door waving bye and getting married. One day at a time and rejoice!!! THANK YOU LORD! YOU ARE SOOOOOO GOOD! (ALL THE TIME!) Rejoicing with you, > I have a walker in the house. > > No, not the kind with little wheels, the kind with two little fat feet !!!! I told you all he took some steps a while back. Well, then he quit. Not a step for a couple weeks. All the sudden he's walking and now often with out any encouragment from us. When I should be thrilled why does this make me sad? > > s. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 These milestones really have a way of confusing us, now don't they! Three cheers for the little man! DM Number23 number23@...> wrote: I have a walker in the house. No, not the kind with little wheels, the kind with two little fat feet !!!! I told you all he took some steps a while back. Well, then he quit. Not a step for a couple weeks. All the sudden he's walking and now often with out any encouragment from us. When I should be thrilled why does this make me sad? s. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 I am sitting here laughing out loud about the sippy cup! My oldest would not hold his own bottle until he was 14 months old. He would just lay there, Like Ma are you gonna feed me or what!. He is two and still likes to be fed! DM Number23 number23@...> wrote: Crap you're getting me all weepy eyed here. I don't want my baby to grow up. I never had this experience with due to all his foot trouble, and here's Evy doing this *normal* baby stuff and it's really bumming me out to see him growing up. Oh well on the up side he still flat out refuses to hold his own sippy cup. He'll pick it up and yell at me to hold it for him! s. Re: It's Official Omigosh!!!! That is fabulous!! We are all over here doing the happy dance for you...if you don't know that it's similiar to the potty dance, not that we've done THAT one in a while. But getting off track!!! That is sooo cool. Way to go Everrett! I am so jealous! I thought we had agreed they would get up and walk the same day darn it! heheh! Wipe your tears and have fun with it. Each stage is so quick don't waste time regretting that the last one's gone already! Before you know it, he'll be out the door waving bye and getting married. One day at a time and rejoice!!! THANK YOU LORD! YOU ARE SOOOOOO GOOD! (ALL THE TIME!) Rejoicing with you, > I have a walker in the house. > > No, not the kind with little wheels, the kind with two little fat feet !!!! I told you all he took some steps a while back. Well, then he quit. Not a step for a couple weeks. All the sudden he's walking and now often with out any encouragment from us. When I should be thrilled why does this make me sad? > > s. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 That's wonderful news.........my little guys only 5 months but i can hardly wait. Jen mom to It's Official I have a walker in the house. No, not the kind with little wheels, the kind with two little fat feet !!!! I told you all he took some steps a while back. Well, then he quit. Not a step for a couple weeks. All the sudden he's walking and now often with out any encouragment from us. When I should be thrilled why does this make me sad? s. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 LOLOLOLOLOLOL! Have to admit, this is the first email I've opened that started with " crap " hahahahahahah! thanks, I needed a good laugh. What I was trying to say, instead of making you all weepy eyed...Each stage is so precious and yet so quick...don't waste time grieving over the one you've just left behind. Or the one you are in will be gone. Enjoy each stage as they come!!! Believe he will still need you for a very long time...look at me, 30 years old and my mom's still my best friend! Enjoy! Crap ee, get over it and go chase your son down the hall, (at least YOU can!)! heheheheheh couldn't resist... by the way, won't hold his own bottle even,(yea, he's still on the bottle) he's figured out that if he does I won't hold him for every feeding...sippy cup? What's that? LOL > > I have a walker in the house. > > > > No, not the kind with little wheels, the kind with two little fat > feet !!!! I told you all he took some steps a while back. > Well, then he quit. Not a step for a couple weeks. All the sudden > he's walking and now often with out any encouragment from us. When I > should be thrilled why does this make me sad? > > > > s. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 That is wonderful!!!!! Don't be sad, you could always have another one! Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 S, Congratulations! It's always exciting when a baby walks, but I think even more so when it's a CF baby! And don't feel bad about being sad (I sound like Dr. Suess)...hey, I cried the other night because Ava went to sleep in her bassinet with her binky for the first time, and didn't nurse to sleep in my arms! My DH thought I was bonkers. You never saw a mommy so happy to have her baby wake up at midnight & want to nurse!! I think when it's your second (or third or..) you realize what each new stage means--it's just one more milestone on their way to independence. And you realize how fast that happens. So while we cheer for their accomplishments, it's only natural to grieve the loss of babyhood. :-) , mommy of: Guinevere, on, Ava 8/4/04 right CF DBB 23/7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 That is great! Don't be sad..someone on here said you can have or you can just enjoy them getting older and more independent and then go to Hawaii with your husband for a month! LOL :-) Mommy to (12-17-98) and Christian (1-30-04) LCF - DBB 23/7 _____ From: Number23 Sent: Thursday, December 09, 2004 10:52 AM To: nosurgery4clubfoot Subject: It's Official I have a walker in the house. No, not the kind with little wheels, the kind with two little fat feet !!!! I told you all he took some steps a while back. Well, then he quit. Not a step for a couple weeks. All the sudden he's walking and now often with out any encouragment from us. When I should be thrilled why does this make me sad? s. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 That is great news!!!! Go Everett! I know what you mean. You are so excited for them to grow and develop, but at the same time, sad they are getting older. Louisa 6-27-99 Zoe 2-22-04 RCF FAB 16/7 > I have a walker in the house. > > No, not the kind with little wheels, the kind with two little fat feet !!!! I told you all he took some steps a while back. Well, then he quit. Not a step for a couple weeks. All the sudden he's walking and now often with out any encouragment from us. When I should be thrilled why does this make me sad? > > s. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 I'm not exactly going out of my way to prevent another baby but I've had fertility problems so it's kind of hit and miss. He may be my last. s. Re: It's Official That is wonderful!!!!! Don't be sad, you could always have another one! Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 Oh ya I was real sad when he started sleeping with out nursing too even if it did mean more sleep for me. s. Re: It's Official S, Congratulations! It's always exciting when a baby walks, but I think even more so when it's a CF baby! And don't feel bad about being sad (I sound like Dr. Suess)...hey, I cried the other night because Ava went to sleep in her bassinet with her binky for the first time, and didn't nurse to sleep in my arms! My DH thought I was bonkers. You never saw a mommy so happy to have her baby wake up at midnight & want to nurse!! I think when it's your second (or third or..) you realize what each new stage means--it's just one more milestone on their way to independence. And you realize how fast that happens. So while we cheer for their accomplishments, it's only natural to grieve the loss of babyhood. :-) , mommy of: Guinevere, on, Ava 8/4/04 right CF DBB 23/7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 Congrats!!! That's so exciting for you! I agree from what others have written as to where the sadnest comes from. KK > I have a walker in the house. > > No, not the kind with little wheels, the kind with two little fat feet !!!! I told you all he took some steps a while back. Well, then he quit. Not a step for a couple weeks. All the sudden he's walking and now often with out any encouragment from us. When I should be thrilled why does this make me sad? > > s. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 That is so great!! Get out the video recorder!! & Grace > I have a walker in the house. > > No, not the kind with little wheels, the kind with two little fat feet !!!! I told you all he took some steps a while back. Well, then he quit. Not a step for a couple weeks. All the sudden he's walking and now often with out any encouragment from us. When I should be thrilled why does this make me sad? > > s. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 I know how you feel.... I keep asking Jonah, 17 months, " What have you done with my baby? " And he thinks it's really funny. Last night he walked up to me, I was sitting on the floor folding laundry, and growled " What you done my baby? " It's just too much sometimes. I was chasing Jonah at the grocery store the other day(Dad had let him out of the cart...) and was thinking " Get back here buddy, you're lucky you can walk at all. " Haven't said it out loud, yet. Congratulations to Everett! Naomi The Family Naomi Hannah(02/21/01) Jonah(06/20/03, bilateral clubfoot, FAB 14/7) Number23 number23@...> wrote: I have a walker in the house. No, not the kind with little wheels, the kind with two little fat feet !!!! I told you all he took some steps a while back. Well, then he quit. Not a step for a couple weeks. All the sudden he's walking and now often with out any encouragment from us. When I should be thrilled why does this make me sad? s. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2004 Report Share Posted December 10, 2004 LOL! " not exactly going out of my way " !! Ha! Wish I could say that! I always wondered what it was like to *decide* to have another baby! My DH looks at me and BANGO, oh look, another gift on the way!!! , mommy of: Guinevere, on, Ava (dear God please can we stop here??!!?!?) > I'm not exactly going out of my way to prevent another baby but I've had fertility problems so it's kind of hit and miss. He may be my last. > s. > > Re: It's Official > > > > That is wonderful!!!!! Don't be sad, you could always have another one! > > > > Shook > Retail Operations Manager/Baking Instructor > Vie de France Yamazaki, Inc. > 2070 Chain Bridge Rd. Suite 500 > Vienna, VA 22182 > x374 > x374 > fax > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2004 Report Share Posted December 10, 2004 I've heard rumors there are things a person can use to help prevent such things......heeheehee s. LOL! " not exactly going out of my way " !! Ha! Wish I could say that! I always wondered what it was like to *decide* to have another baby! My DH looks at me and BANGO, oh look, another gift on the way!!! , mommy of: Guinevere, on, Ava (dear God please can we stop here??!!?!?) --- In Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2005 Report Share Posted April 10, 2005 So, last week I received a clinical dx of mito from both neuro and metabolics. So I guess I'm in the right place. Neuro said that I don't have MS and my brain MRI shows no evidence of stroke so the episodes could have been SLE's. Bloodwork and exam show muscle disease. Carnitine deficiency plus other body systems and funky labs plus family hx give enough weight to a clinical dx. Labs for DNA and other funky things were drawn Monday so we'll see what comes out of it. I may go down to Atlanta for a muscle bx if we don't find it in blood. Not sure if it's dominant or maternally inherited because ther are shockingly few boys in the family. Several stillbirths and miscarriages that were boys though. Go figure. The theory about the sudden terrible muscle problems is this: I've had this underlying myopathy all my life, since you can't change your genes. I've compensated well most of the time but the drug reaction to metformin (which happens in people with mito, go figure) destroyed healthy muscle and left me with more abnormal, affected muscle trying to do the job. So now I need to find out how to condition this lousy muscle and get on with life. I have PT and OT evals next week. I'll have a hearing test, a neuro-ophthalmology exam, and a sleep study. It will make for some busy weeks but we'll get more info. I really need to figure out if this will be a short-term thing or if I should try to modify my work (although right now I can't write so I can't work at all). The diabetes is under control with insulin 4 times a day and blood sugar checks 4-7 times a day. Still waiting for the blood work to see if it's type 1 or2. Heidi So now I have an appt with Dr. Sims at MGH. I've heard conflicting reviews but hopefully it won't be a waste of time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2005 Report Share Posted April 10, 2005 -Hi I've been on carnitine for a month, they drew blood to check my level. I don't notice a difference yet so it's probably the wrong dose. I'm starting riboflavin now and Co Q10 in a few weeks, and gradually increasing the dose to see if there's an effect. The odd thing is that I have plenty of mental energy, it's purely a muscle problem at this point. I feel like I should be able to do things with my hands and am consistently surprised when I can't get them to do what I want. Heidi -- In , wrote: > Heidi, > > I know everyone is different, but I know when I finally got a dx after > 10 years, I was just glad to know what I was dealing with so that I > could best take care of myself for the future, both for myself and my > family. > > Are you taking the mito cocktail yet? If not, you may feel better after > starting it for a while. Good luck, and let us know how things go with > you appointment with Dr. Sims. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2005 Report Share Posted April 10, 2005 Hello Heidi, A note about the Carnitor. I finally got tired of trying to swallow those awful big chalky pills and my son absolutely refused to take them. So, I switched to liquid carnitor. I actually take less than the prescribed dosage and had to work up to that because it gave me diahrea. If you refrigerate it and after you get used to it the cherry flavor it is actually not too bad. You can also mix the liquid with apple juice or milk, chocolate or white. Janet Sample Re: It's official I'm on prescription carnitor, 990mg a day. I believe I'll be increased to 990mg 3 times a day after the levels come back. They wanted to see if I could absorb it. Those big pills are hard to swallow. The riboflavin will be OTC and the Co Q10, hopefully insurance will pay for Qgel. Our insurance pays for 's. That's a good idea, keeping track of the meds and impact. Thanks Heidi > > > > > >>Heidi, > >> > >>I know everyone is different, but I know when I finally got a dx > >> > >> > >after > > > > > >>10 years, I was just glad to know what I was dealing with so that I > >>could best take care of myself for the future, both for myself and > >> > >> > >my > > > > > >>family. > >> > >>Are you taking the mito cocktail yet? If not, you may feel better > >> > >> > >after > > > > > >>starting it for a while. Good luck, and let us know how things go > >> > >> > >with > > > > > >>you appointment with Dr. Sims. > >> > >> > >> > >> > > > > > > > > > > > > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
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