New Member Intros and Welcomes | Forum profile

Hi Leylasdad I am so so sorry to hear this news. My thoughts and prayersare with you during this very difficult time. Ipray you find doctors that can help and comfort your family and Leyla and steer you in the right direction. I pray that Leyla will make significant gains with the cocktail. Your strength comes through in your posts and Im sure it wont desert you now.

I, too, am grateful for this board and all the families on it. I realize that having Anna has made my DH and I better people and better teachers, she's taught my dad to be more appreciative, my sister to be more accepting...Having a child with difficulties can be tough, but this board is one of the things that makes it easier.

Hi I agree with you, it can be very tough. My son is 8 weeks old and we were told he was floppy at birth. I never imagined that my baby would have problems drinking, something that seems to be so natural, so obvious. I agree that it is tough when you meet people and stay asking questions. Infact at the moment I do not go to do the shopping as i dont want people asking me questions. There are good days and bad ones too. My son has been doing...

Hi, Just want to welcome you & sweet Casen to the board! There are many parents here who can offer tremendous support and advice as they have all been where you are, including myself....I have 3 boys, 2 with moderate hypotonia, one with mild hypotonia. It sounds like overall, Casen is doing awesome and making some great progress....therapy will help tremendously, and you will be amzaed at the things he will learn to do with therapy and...

Welcome! We are actually brand new here, but I just couldn't resist responding to your post. I pretty much could have written that last paragraph in your post :) I am constantly having to explain to mommies why Casen isn't crawling yet (he'll be one next week). It gets so old, doesn't it?! I know curious mommies mean well, but it's just plain exhausting to answer questions. I also understand what you are feeling with...

Hi Natalie, Welcome to our little safe haven. I hope you will find a lot of support here. The moms and dad here are just wonderful and on many occasions, save me from going to the deep end. Sofia is so enchantingly beautiful! My goodness! As for picking up on things, you know you can never look back, so don't. You did the best you can! You ARE a wonderful mommy, look, you found us, you reached out. You are looking for ways to help Sofia....

I am so sorry you guys received this news. It is hard to handle a mito dx b/c it is such an uncertain disease. Even when you get the dx, they can't tell you much. Yet, I try and find some comfort in this. They cannot say our kiddos will or won't do this or that (typically). There is so much research going on in this field as we speak. Also, they have some means (cocktail) to slow down the disease. There is hope for our kiddos. Leyla...

He may be a little low tone. Talk to your pediatrician. Your LO may just need a little therapy, or, may just be doing things on his own timetable. But it never hurts to voice your concerns. http://i238.photobucket.com/albums/ff10/nowayjose_mrb/Maya_crop.jpg

hi everyone I hope everyone is doing good. I have a question i would like to ask,my daughter goes to preschool and gets her therapy there they are just the best.They have tried the theratog on her and she did amazing she was standing unsupported for four minutes i was shocked. Have anyone tried the theratogs on their kids and how did they do? I'm dying to get her one for the home but they are so expensive but i'm probably going to...

Hi and welcome to the board. I'm Sophie and my 2nd baby, Isaac is 7 months old tomorrow. Isaac has had a lot of problems with breastfeeding as well but I'm hoping he will get the hang of it soon. Sophie (dyspraxia), DH (Aspergers), Jeremiah (typical, how did that happen!) and Isaac (hypotonia, development delay, failure to thrive) xx