Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 Hi, I don't know your name it wasn't on the introduction - I would like to welcome you and your twins. I am glad that you were able to get treatment, as you will find there have been many parents here that have had to fight for treatment. As far as perspective...I KNOW!!!!! I must say it all the time...I know things could be worse!!! My BEST friend in the whole world (since 13 years old) had a baby on 2/12 born with cleft lip and cleft palate!!!! I know things could be worse...my 10 year old has Reactive Lymphnode HypoPlasia(sp?) and had a LymphNode biopsy in Sept(we thought it was a Lymphoma at the time) and again is facing another one!(another enlarged Lymphnode over 3cm) Believe me, I know how much worse things could be but when it comes to my baby, I still shed tears! I cry for him and I cry for me! Excuse the term but...Wearing this helmet sucks! I am missing out on so much cuddle time - so many cute moments that I won't get back. My baby will only be 10 months old once and I feel like his 10 month was ruined by my worries and tears (thinking he may have had cranio) And as far as permanent...my baby's eyes (or so i'm told) are permanently disfigured (Orbital Dystopia) We have been told by 2 Neurosurgeons and have an appt with a Reconstructive Surgeon on 5/1. I cry everyday! I try not to but I can't help it. I don't want to be consumed with this but I have not accepted it yet and I haven't had any correction yet! He may not be blind, he may not have cancer but his face is not right and it may never be. I cry for him that he will look " weird " when he gets older and that other kids will make fun of him. I worry about his self esteem...that's why I cry and worry - I hope I don't sound mad because i'm not and i'm glad you are here and I, as well as everybody else welcome all comments. What did upset me is that you are one of us, a mom that is just concerned about her baby and his well being and you sounded to me like many people that I have met that just don't seem to understand how important this is to me. Or how serious a condition it really is... Amy (Mom to Max) STARband 2/19/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 Hello and welcome. Sorry, I couldn't find your name in your post! I'm glad you have joined us. I think it is great that is doing so great in his STARband! Have you seen good improvement? Also wanted to ask if you have been doing PT for the tort. We have a bunch of moms with twins on this page so you're in good company :-) We also have several people that I know of that have been dealing with serious eczema! I know it sounds like we are on a crusade here about plagiocephaly and that is because we are! :-) We realize that it is not the worst that could happen, but it really gets some of us down when we realize that many of our cases could have been avoided altogether if there were better educated peds out there!! There are just a bunch of us (myself included) whose ped simply would not listen or acknowledge that there was a problem! Some of the moms here have to travel VERY great distances (even fly!) to get treatment only to deal with ill-fitting products and less than great orthotists. Then, once treatment does begin we can't get our insurance to cover the treatment and the money has to come out of our own pocket because we simply cannot wait any longer to convince the insurance company to pay!! Still, after all of that, we share both concerns and joys and lean on each other for support. We have our share of venting (which is very undertandable - our babies are our most precious " possessions " ) but we also have our share of celebrating! You are very right - it's not the worst thing that could happen and I think you will find that almost everyone here has a pretty good perspective on things. This is a great support group and a great place to get answers to questions (especially since some of us can't count on our peds or orthotists!!!). I'm glad you found us and I hope you will hang out with us and share your experiences and maybe even answer some questions that we have along the way! :-) Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 Sue, It is the one entitled " Perspective " - I know this is going to sound weird, but I just looked through the messages section and I can't find the origianl post either. Very strange since both Amy and I responded to it!! Kendra - do you know what is up with that? Marci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 Kendra, There was a response from the writer of that post in which she indicated that she deleted the message because she didn't feel that it came across the way she wanted it too. Marci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 Marci, I am trying to find the post in which this is a response to... can you help? Thanks, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 No idea where the original went! Yet another glitch! Grr! Kendra in CanadaFor more plagio info, visitwww.plagiocephaly.org/support... ----- Original Message ----- From: marcisch@... Plagiocephaly Sent: Thursday, March 15, 2001 7:03 AM Subject: Re: Perspective... Sue,It is the one entitled "Perspective" - I know this is going to sound weird, but I just looked through the messages section and I can't find the origianl post either. Very strange since both Amy and I responded to it!! Kendra - do you know what is up with that? Marci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 Got it, Marci, thanx! Kendra in CanadaFor more plagio info, visitwww.plagiocephaly.org/support... ----- Original Message ----- From: marcisch@... Plagiocephaly Sent: Thursday, March 15, 2001 11:17 AM Subject: Re: Perspective... Kendra,There was a response from the writer of that post in which she indicated that she deleted the message because she didn't feel that it came across the way she wanted it too.Marci Quote Link to comment Share on other sites More sharing options...
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