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    Good morning Macie! Prayers continued

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      Good morning, Macie! Sorry I haven't been around much lately, but you're never far in my thoughts! Praying for you and your whole family!

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        Just got the call. Spinal tap came back negative for any infection. So scheduled for the Baclofin pump surgery for the 31st.

        Brian

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          great news... what will this pump provide if i may ask?

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            It is inserted just under her skin in her stomach area. Has a tube that goes around to her spin and injects Baclofin directly to her spinal cord. Baclofin helps control the tightness of her muscles. She gets it now through her feeding tube but this is a more efficient way of administrating it. She had it done before but got a infection which turned into menigitious so they had to take it out. Right now she is so "tight" it's hard to get her limbs to move much at all. This will help. The pump dose can be adjusted with a programmer held against her skin over the pump. It's refilled with a needle, like a shot. Pretty neat technology, they are working on a cell phone app that the Dr can sent dose adjustments to my phone and then I can hold my phone over the pump and make the adjustment. . The Dr who is doing this is one of the pioneers with this, so once I started asking questions he lite up like a kid in a toy store. You could tell he really loves his job.

            Brian

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              Originally posted by mfarmer View Post
              great news... what will this pump provide if i may ask?
              And don't be afraid to ask. I don't mind a bit. Just don't judge me on my spelling. Sometimes it's so bad, spell check can't figure it out.

              Brian

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                thanks for the info. Sounds like a good step in a positive direction. My family continues to keep yall in our prayers.

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                  Good deal. Still expecting total recovery!

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                    Good evening Macie darling. Hope the pump gives you some relief.

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                      Good deal! Super news! Sure hope this helps her be more comfortable. Very happy to hear no infection. What a relief. (: have a good night macie!

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                        Great news on the tap and the pump!

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                          Checking in tonight, Great news on the test results!

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                            Just rea about the pump. Isn't technology great! Still praying and reading even though I haven't been posting much. Honestly it is hard for me as I too have a little girl and couldn't imagine....but I'd hope I would be as good to her as you have been to macie. Big props to you dad and to the green screen. I'm sure it's helped everyone.

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                              Good night Macie girl, sleep tight!

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                                I need some advise. Tyler, our 16 yo son, shot in a rifle match this past weekend. And honestly he shot horrible, even made beginner mistakes. At first I played it off as just a bad day. But the more I think about it, I realize that his mind hasn't been on anything for awhile now. He says he doesn't know why. How do I tell if it's just being a teenager or if it has to do with what has happened with Macie? He is the one who had to pick her up and see her body completely blue the day it happened. He has told us and everyone that he is fine, but now I'm starting to wonder.

                                Brian

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