We picked up her DOC band today and she has begun her little helmet journey! She did not like it what so ever at first. My heart broke for her as she cried and cried and cried! She will wear it every 3-4 hours for tonight and tomorrow and will not sleep with it until maybe tomorrow night, depending on some things I have to look after on her skin. Starting Thursday she will wear it 23 hours a day. My poor baby! I already miss kissing her head when she is on my lap and believe me when I say I kissed her little head almost the whole hour it was off tonight! I hope she starts to take it well soon. I know she is one strong little peach so I think she will. I will post some pics of her wearing the band sometime in the near future. I dont have a scanner so I usually send my pics out and then get a disk with the photos. I will be snap happy for sure so she could see what this was all about when she is older. Just wanted to share the beginning of this experience with all of you. Hope everyone is doing well.
Krista
Mariella now has her cranial band...
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Re: Mariella now has her cranial band...
Krista,
Sorry I haven't talked to you lately. Things are pretty busy here. I am glad to hear that Ella has her helmet. She will get used to it. Just hang in there. Alexyss's arm and hand are very swollen. They think it is the nerves. I just need to get the surgeon on the ball to go in for surgery. I am about to pull my hair out! I will try to email you soon! Give Ella a kiss for me! Tracey
Sorry I haven't talked to you lately. Things are pretty busy here. I am glad to hear that Ella has her helmet. She will get used to it. Just hang in there. Alexyss's arm and hand are very swollen. They think it is the nerves. I just need to get the surgeon on the ball to go in for surgery. I am about to pull my hair out! I will try to email you soon! Give Ella a kiss for me! Tracey
Re: Mariella now has her cranial band...
Krista - this has to be so hard on both of you...especially now in the beginning. I hope that Ella will get used to it quickly and before you know it time will fly. Maia is just getting out of her capsulodesis splint on Monday. Four months! Felt like it was forever and also just yesterday all at once! Maybe you can take Lee Anne's lead and decorate her little helmet?
When you get a picture, send me one so I can put it up (if you wish, of course!)
When do they suspect she will be done wearing her helmet??
big hugs,
francine
When you get a picture, send me one so I can put it up (if you wish, of course!)
When do they suspect she will be done wearing her helmet??
big hugs,
francine
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- Site Admin
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Re: Mariella now has her cranial band...
Francine,
We are going to decorate her helmet for sure. I think I will do something along the lines of a sky blue with little white clouds then add some sticker transfers of butterflies or little things that go along with that. She will be wearing the helmet for 2-3 months, but if she ends up having the berve surgery then they want her to wear it until a bit after that since she will be weaker on that side I guess. I will learn more about why once I find out if she does need the surgery or not. I will send a pic..of course you could post one. I was going to ask you if I could have one of Ella posted on your site anyway...even though she looks much more beautiful without the band =)
I thought about how you all must feel when they have the splints on b/c it is a similiar situation. I think it will go by fast b/c her being 6 months already flew! I am not sure where the time goes, but as of right now I really dont care! Thanks Francine.
Krista
We are going to decorate her helmet for sure. I think I will do something along the lines of a sky blue with little white clouds then add some sticker transfers of butterflies or little things that go along with that. She will be wearing the helmet for 2-3 months, but if she ends up having the berve surgery then they want her to wear it until a bit after that since she will be weaker on that side I guess. I will learn more about why once I find out if she does need the surgery or not. I will send a pic..of course you could post one. I was going to ask you if I could have one of Ella posted on your site anyway...even though she looks much more beautiful without the band =)
I thought about how you all must feel when they have the splints on b/c it is a similiar situation. I think it will go by fast b/c her being 6 months already flew! I am not sure where the time goes, but as of right now I really dont care! Thanks Francine.
Krista