Guest guest Posted October 9, 2011 Report Share Posted October 9, 2011 I've never posted on this site before so I'm a tad confused but I just wanted to tell you that i understand. I guess you have had longer to deal with this than we have. My baby girl is almost 3 months but (Catrina that replied is my mother but I really wanted to reply too) I worry with every little movement or if i feel theres not enough movement, does she sleep too much, is she eating too little blah blah blah...Its sooo hard and worse feeling alone is awful. Its not like I can just go hang out with other parents or heck even looking for stuff online is so hard...seems like theres so many resources for other issues. I could ramble and complain forever i guess..but I just wanted to say you not alone in your feelings, i hope everyday that one day I can have a conversation with my daughter. Its hard knowing basic things may have been taken away from us. I've had trouble not being able to feed my daughter by mouth, i feel like i cant snuggle her like parents do and i just found out after her upcoming surgery they i wont be able give her baths...and no swimming (shes a little young for that anyway but still) It breaks my heart every time i lose more " normal " things. Btw i was thinking...I've known several little babies who didnt start walking till after 12months..i dunno if that helps but hopefully it just takes her a bit longer. Best wishes, > > Hello everyone, > > Lana is fine now but my concern is about her progress! She is 12 months on Oct. 21, but I feel that she is like a 8 months babies, I know that this is normal with PMG kids but, am a mother and I need a ward to calm me down, will she walk or speak one day:( > > Regards, > Lina > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2011 Report Share Posted October 9, 2011 Dear Lina, So happy I was able to share some words of encouragement for you. It helps me so much to be able to share with all of you who know the road we travel together. > > > Hi Lina, > > > > I sure wish I had some answers for you and Lana, for our family, and for all > > of us who struggle with these same haunting questions. What will their > > futures hold for our little ones? It's a heartbreaking question to be sure. > > > > Our little Brie is only 12 weeks old and she was diagnosed at 3 weeks of > > age. However, we still do not know what type of PMG she has or what it will > > mean for her. I have days (I'm her grandmother) of sheer despair. Sometimes > > anxiety and fear grip my throat so tight that I feel like I can't breathe. > > But most of the time when I see her face light up when I talk or sing to her > > and see her smile so big and get so excited, I wonder, would I have been > > able to feel such complete joy over such small things if she were a " normal " > > baby? Every tiny positive sign is reason to celebrate. But on the other side > > of that, every tiny thing that is different, is pause for me to worry that > > something is wrong. > > > > Right now, we are in the hospital. I think she had an absence seizure > > Thursday morning but gratefully she has had nothing since then. We are > > waiting for the surgeon to come and tell us when they can put a g-tube in > > her tummy so we can get rid of the NG tube. > > > > I know that isn't an answer to your question. The worst part is that there > > are no answers like that for any of us. BUT, I'm so grateful that we have > > this group so that when we are hurting or scared or ecstatic over our > > victories, we can join together in a moment of unison to stand united and > > get through this together...ONE DAY AT A TIME. > > > > Hugs to you and sweet Lana, > > Catrina, Grandma to Brie > > > > Quote Link to comment Share on other sites More sharing options...
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