Well for once i wish is was just a paranoid mum but unfortunately not miki hasd her assesment today it has been confimed that aswel as having weaknes in some of her mucles she does infact have ovrall low muscle tone hense her legs falling open when led down and her arms legs and feet can be moved into many diferent positions with no resistance and also her as they called it the Miki crawn she drags one lag behind herself and pushes on it to move

The bent leg thing is also a concern and she has to see a orthapedic surgen to see if braces are needed the low tone and low stenghth of certain makes the problem more of a problem than usual becuase generay the muscles corect the bones but not in her case

The theapists was very interested in miki the fact that she had PS and laryngomalaica and GERD and the heart murma and the poor sucking apnea and everything else as all her isues so to speak have been the extream of there type and generaly afected her more than normal and this along with the low tone could ndicate some sort of Syndrome but she doesnt know what all the notes will be sent back to her pead and then he can put them all together and see where we go from there

Im not to woried even though i was a bit bummed out when they told me this i have taken my own advice of what i have said to others that a Diagnoses doesnt make her any worse of than she was before just may give ita name

It makes sense though as to why she had so many isues but i do know she is neurologicaly sound for ehr age which is a bonus as any thing else we can work on

Oh Amy, i'm sorry to hear that news. I know how difficult it is to hear something like that. It really sucks.
As you know, geneticists are still trying to find out whether Josh has some kind of syndrome too.
I really hope they don't find a syndrome and that her issues are all separate :-(

i agree amy, i hope that Miki will prove to be okay, but in the mean time it is good that they are working on it....sounds like a good PT.

I'm sorry Amy... :sad5: :hug:

I am sorry the news was not better:hug: It is really great that they are on top of all of this so early though. There is a lot that can be done to help get her on track physicaly. It may take her a little longer then some kids and she will probably have to work harder, but I am sure she will get there.

Amy, I am glad to hear that they are working on it. Main thing is, they will help her whatever it is. Lables mean nothing, except one thing: She can be helped and sent in the right direction to be become the best person she can be. I am thinking of you guys and you are one wonderful mother! :hug:

Amy your head seems to be on just right! I'm glad Miki is getting the help she'll need. You are right that labels aren't going to make this worse, I think I'll store that in my minds eye.

Amy, you're one positive mama! Will you remind me to be, too???

You're so right about the diagnosis part...I've been all too obsessed w/ putting a name to it lately. It's not going to change anything...you're so right.

:hug: to you guys, and thanks for being here! I just wish you were closer!

thanks guys I do try to be positive as if i stay calm and happy it helps miki and what ever the out come is she doesnt know any diferent none of our kids do to them its life and really if they can handle GERD they can handle anything

I wish we lived closer to lindsey Ava and miki wiuld have so much fun

I have faith in you and Miki...you both have endured much already and have come out on the better end of things even if it took the long hard road....you will deal with this as need be and she will thrive because you care and love her with everything you have......you both are a wonderful inspiration:hug:

Amy I love your attutude! Exactly as you say, it doesn't make it any different cause it has a name. I am sorry the appointment was a downer but at least you can improve from here, you are a dedicated mum, and Miki will improve with this therapy I know it.

If you need to see a neurologist as I think they would be best to look into things, or want a better one, we go to a fantastic one, he heads PMH neurology, and he is really good. So let me know.

cool thanks rach i will get his name of you when the time comes at this stage i dont realy want them doing a neuro assesment on her as i think she ios doing well at this stage in that regard and i dont want them to look for things that aernt visable if we start to notice her falling behind in that area as well then we will with out a doubt but at this stage she seems to be neurologicaly sound she is saying a few words its just the movement thats a issue i think

You may want to consult a neurologist to check things out, because physical problems can have a neurological basis, not just cognitive problems. My nephew has Cerebral Palsy that was caused by trauma at birth. He suffered bleeding in his brain that caused cells to die.

The damage was done to the motor area of the brain so he has various physical problems, but besides a few learning problems he is a very bright kid and always has been.

I totally understand you not wanting to look for problems before they arise, but a neurologist may be able to help you understand and treat the physical problems that she is already having.

I also want to say that I agree with Rachel, you have a great attitude! It is great that you are getting Miki the help that she needs, but not becoming consumed with all the what ifs. Time will tell and I am sure as she gets older and gets past the reflux issues you will see lots of major improvements.