lisabees Posted April 25, 2012 Share Posted April 25, 2012 I think I need some positive thoughts sent my way. DD9 was tracked for having neurofibromatosis when she was a baby. At that time, the geneticists said they didn't think she had it. So what did I do? Stopped going to yearly check-ups at the children's hospital, so I didn't have to think about it. Now, I see other symptoms. Things I'm worried about. Things that keep me up at night. Our appointment isn't until September and I need to find a healthy emotional balance so I can cope until that time. I know my job is the same, whether she has it or not - and that is to love her. I know she is strong girl, who can cope with whatever comes her way. But I am scared for her. I can't stop thinking about it and crying about it. I feel like if I just knew, right now, I could get into "fight" mode. But, for now, I just live in fear. Thanks for listening. I feel so alone in my thoughts and had to get them out there. Quote Link to comment Share on other sites More sharing options...
JudoMom Posted April 25, 2012 Share Posted April 25, 2012 Praying for the peace that passes all understanding. The waiting is so hard :grouphug:. Quote Link to comment Share on other sites More sharing options...
Michelle O. in MO Posted April 25, 2012 Share Posted April 25, 2012 I'm so sorry. I will keep you and your dd in my prayers. :grouphug: Quote Link to comment Share on other sites More sharing options...
whitestavern Posted April 25, 2012 Share Posted April 25, 2012 Praying :grouphug: Quote Link to comment Share on other sites More sharing options...
WillametteMom Posted April 25, 2012 Share Posted April 25, 2012 I'm praying for you and your dd. :grouphug: Quote Link to comment Share on other sites More sharing options...
Chris in VA Posted April 25, 2012 Share Posted April 25, 2012 It takes great courage to be a mother, doesn't it? :grouphug: We may not find it in ourselves, but we can find it in God, and how He is expressed in our community. Lean on both. Quote Link to comment Share on other sites More sharing options...
Karen A Posted April 25, 2012 Share Posted April 25, 2012 :grouphug: :grouphug: On a practical note, can you call the doctor and get on the cancellation list(they call you to come in if another patient cancels)? Quote Link to comment Share on other sites More sharing options...
BlessedMom Posted April 25, 2012 Share Posted April 25, 2012 :grouphug: Praying for you and your precious daughter! :grouphug: Quote Link to comment Share on other sites More sharing options...
TammyinTN Posted April 25, 2012 Share Posted April 25, 2012 :grouphug: Prayers for you and your daughter. :grouphug: Quote Link to comment Share on other sites More sharing options...
creekland Posted April 26, 2012 Share Posted April 26, 2012 :grouphug: Praying - and hoping you can get in earlier. It's worth a call, esp to relate what you've seen and why you want to get in earlier. It's a different medical issue with my guy, but we did, indeed, get in earlier and got our preliminary diagnosis last night instead of waiting 3 months. :grouphug: I'll be thinking about you... take care. Quote Link to comment Share on other sites More sharing options...
Mommyfaithe Posted April 26, 2012 Share Posted April 26, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
Momma H Posted April 26, 2012 Share Posted April 26, 2012 Praying for you. On a practical note, you may want to call wherever her appointment is and tell them if there is a cancellation you would live the earlier appointment. I had my sons evaluation moved up 5 weeks this way. Quote Link to comment Share on other sites More sharing options...
speedmom4 Posted April 26, 2012 Share Posted April 26, 2012 Waiting for a diagnosis is so hard. Before my son saw the neurologist for the first time I already knew that he had Cerebral Palsy. My family members thought I was insane. They just passed it off as just another of my worries. When he got the diagnosis he had to have an MRI to determine why he had CP. They needed to determine if it was a stroke or a brain tumor. It was the worst few weeks of my life. It turned out he had had a stroke before, during, or shortly after delivery. I shared just so you know that you aren't alone!!! :grouphug: I agree about calling about cancellations. God Bless, Elise in NC Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted April 26, 2012 Share Posted April 26, 2012 I'm so sorry. The waiting is soooooooo hard. Are you on. A cancellation list? Try to remain strong. Distractions are GOOD!!!:grouphug: Quote Link to comment Share on other sites More sharing options...
Starr Posted April 26, 2012 Share Posted April 26, 2012 The waiting is awful. Praying for you and your family. :grouphug: Quote Link to comment Share on other sites More sharing options...
lisabees Posted April 26, 2012 Author Share Posted April 26, 2012 Thank you all for the kind words of support. I really need them. :) She shows no terrible symptoms now, which is common. Things progress quickly during puberty. When I look at her, I know we will get through this just fine, no matter what. When I'm without her, I fall apart. It's an emotional roller coaster. Yes, we are on the waiting list to be called in the event of cancellations. Creekland, as I've been agonizing over this, I have been thinking of what you've been going through lately. Is your update on this forum? Quote Link to comment Share on other sites More sharing options...
MariannNOVA Posted April 26, 2012 Share Posted April 26, 2012 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted April 26, 2012 Share Posted April 26, 2012 The waiting period of being in limbo is so hard because you have too many scenarios to cope with. Quote Link to comment Share on other sites More sharing options...
sbgrace Posted April 26, 2012 Share Posted April 26, 2012 :grouphug: Waiting and fearing the possibilities are the hardest parts of these journeys for most people. I will certainly pray you have peace as you wait. :grouphug: Quote Link to comment Share on other sites More sharing options...
MamaT Posted April 26, 2012 Share Posted April 26, 2012 :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Laura in NC Posted April 26, 2012 Share Posted April 26, 2012 Lisa, I am praying for you and your dd. I hope that you can get in sooner. I understand the waiting for answers. We are right in the middle of it with our dd11. She got a presumed diagnosis last year but no help on what to do for it. So we're heading to Atlanta in June to see a specialist for her disease to hopefully help us. Every day she asks me when we're going to see her new dr. She is having new symptoms pop up quite a bit in the past 6 weeks and she's just so tired of them. You can read her story on my blog if you're interested. Please know that I'm praying for you and that you get the help your dd needs. Quote Link to comment Share on other sites More sharing options...
Tammyla Posted April 26, 2012 Share Posted April 26, 2012 :grouphug:prayers:grouphug: Quote Link to comment Share on other sites More sharing options...
TN Mama Posted April 26, 2012 Share Posted April 26, 2012 :grouphug: Lisa, I am praying for you & your daughter. Quote Link to comment Share on other sites More sharing options...
Momma2Many66 Posted April 26, 2012 Share Posted April 26, 2012 Praying for you and your daughter !! :grouphug: Quote Link to comment Share on other sites More sharing options...
Coffeetime Posted April 26, 2012 Share Posted April 26, 2012 :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
astrid Posted April 26, 2012 Share Posted April 26, 2012 The waiting is a lonely place. Please know I'm thinking of you! Hugs, astrid Quote Link to comment Share on other sites More sharing options...
mumto2 Posted April 26, 2012 Share Posted April 26, 2012 :grouphug:praying:grouphug: Quote Link to comment Share on other sites More sharing options...
creekland Posted April 26, 2012 Share Posted April 26, 2012 Thank you all for the kind words of support. I really need them. :) She shows no terrible symptoms now, which is common. Things progress quickly during puberty. When I look at her, I know we will get through this just fine, no matter what. When I'm without her, I fall apart. It's an emotional roller coaster. Yes, we are on the waiting list to be called in the event of cancellations. Creekland, as I've been agonizing over this, I have been thinking of what you've been going through lately. Is your update on this forum? I updated on the high school forum. I've been a bit short on time lately, so my board reading has been sporadic. It's easier to keep up there. I'll be thinking about you. Let's hope there are even more advances between now and when you'll be needing them. I am wondering if my guy will be updating the epilepsy texts/journals (at least the atypical variety). I definitely know the emotions run high at times. :grouphug: Quote Link to comment Share on other sites More sharing options...
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