Nerves...Nerves...Nerves***UPDATED

Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.
mom2miracles
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Re : Nerves...Nerves...Nerves***UPDATED

Postby mom2miracles » Thu Jul 15, 638923 9:58 am

Thanks for the advice Alysha. I think Ethan is making up his own signs. My big "issue" is that Ethan has never had to ask for anything or "need" anything. 9 mths in the NICU provided him with constant 1:1 attention and it's really the same at home between nursing, me and his dad, and my mom. So it's hard to make him actually initiate communication. Does that make sense? He definitely tells us "NO" by pointing his finger and shaking it or shaking his head when he doesn't want something or is done with something (like therapy or eating usually LOL). For example...he has to eat around the clock to meet his caloric requirements so he never has to "ask" for food. And because he is behind physically we are constantly keeping him busy, so he doesn't have to ask to be up. He will gesture when I ask him if he wants up though. Same thing with his diaper...nurses are required to change him every 4 hrs...so he never really has to sit in a dirty diaper (not that I want him to). I think you are so right about finding signs that he really wants to use though...that's how it has worked with the gesturing and imitating. He does what is fun for him and what he likes. It's a great idea though to try to find a sign for something that he loves...like his music or something. Thank you!

aggie95mom
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Re : Nerves...Nerves...Nerves***UPDATED

Postby aggie95mom » Wed Jul 14, 638923 9:35 pm

That's a good update ... way to go Ethan!! These little guys (and gals) are definitely fighters. Glad to hear he had other ideas than your PT :)

I just wanted to add something really quick about the signing. I have done it with both of my kids, but I found with both that they didn't really get into signing until I found their favorite sign. With my oldest, he was obsessed with the sign for 'again' since he wanted me to sing/play the CD/sit at the piano for his favorite song. He was about 15 months at the time. With my youngest, his favorite sign is 'milk'. Once they both mastered those then I've been able to get them to use others more readily. I think the fact that Ethan is imitating and gesturing, though, is great for communication, too. I'm sure he knows how to get what he wants :)

amanda
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Re : Nerves...Nerves...Nerves***UPDATED

Postby amanda » Sat Jul 03, 638923 4:06 pm

Ugh - me three. I hope too that today brings good news.
Ethan is just beautiful. I'm so happy for you Nikki!

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jamie w
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Re : Nerves...Nerves...Nerves***UPDATED

Postby jamie w » Sat Jul 03, 638923 12:30 pm

I hate the reviews also! It is so hard to hear some of the things they have to say. I hope you get positive feedback today. I am so proud of how far you and Ethan have come!!

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patty
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Re : Nerves...Nerves...Nerves***UPDATED

Postby patty » Sat Jul 03, 638923 5:00 am

Good Luck with the review. I am sure you will get good news. Ethan sounds like he is doing wonderful and he still has lots of time to catch up. It is normal to be behind in some areas as early as he was born and all that he went through. I understand it is hard not to worry though. Even if all his delays don't go away with time (I still have a middle schooler who needs physical therapy for gross motor stuff mostly balance) it is okay. Let us know how it goes.

mom2miracles
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Nerves...Nerves...Nerves***UPDATED

Postby mom2miracles » Sat Jul 03, 638923 3:32 am

Ethan's 6 mth review of his therapies is today. I dread these things because I always hear things I don't want to...even though he is doing very well. I look at him every day and am amazed at what he does and how far he's come and then I'm reminded on paper that he is still behind. Don't get me wrong...I'm just grateful every second that he is here with me. It's just hard to hear that he's not where he's supposed to be yet. To me...he is a genius! I don't like when people tell me otherwise! ;-) I think we will get some good news in that he has finally passed his physical therapy goals...gross motor skills is his major delay so this is really good. I'll update on the meeting later. Thanks for letting me vent!
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UPDATE:

The meeting went fairly well. I heard the things I didn't care to, but also a lot of positive. Ethan completed his PT goal, which was to sit unassisted and begin bearing weight on his legs. The PT actually upset me a few weeks ago by saying that Ethan may not walk til he's 4. Then the next week he started standing and now the PT is saying 6 mths, which would make Ethan 2 1/2. I love how he always proves them wrong. He met part of his communication goal, which was to communicate using signs, gestures and imitation. He does the gestures and imitates but is not using actual signs. He did not meet his feeding goal because he is not interested in food at all. The neonatologist tells me every time we see her that he will eat when he wants to and she is not worried. He is definitely still behind is the bottom line. But then I look at his adjusted age (19mths) and take off another 5 mths (how long he was intubated before getting his trach) and I think he is doing amazing. A doctor told me once that I should not worry at all as long as he continues to make progress...and he does. When he was first diagnosed with the Periventricular Leukomalasia and brain bleeds, we had no idea where he would be right now. And Cerebral Palsy was a huge concern. So far there has been no talk of the brain damage causing major issues and no talk of anything except delays because of his rough start in life and the amount of time he was hospitalized. So I will celebrate the fact that I can kiss him goodnight every night and be happy that he's here! Thanks for the support ladies!!


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