Maelee had a follow up appointment with her sleep doctor on Monday and was prescribed an additional medication. I being a nurse know the side effects, no the risks, but felt that this may help Maelee.......I think I was wrong, I think the doctor was wrong, and my poor baby did not have a good night!
Maelee wakes many times with muscle spasms....that is not new or something I can help her with other than rubbing her sweet little legs! But Maelee also suffers from PLMD and RLS causing her to have that creepy crawly feeling in her legs. RLS sucks! She has been on medication to help with her PLMD and has had great success but still wakes rubbing her legs and saying owww.....it's not a spasm as we can feel the tightness after this as well as Maelee doesn't bend or move easily after. Her legs hurt from RLS and so the doctor prescribed her a medication to help........
Maelee threw it up. All night and into the morning. And then when taking her back to the doctor they made the stupid comment, "It could be the new medication but it might be a virus. Just give her the medication again in a couple nights and if it happens again you know it's the medication." UMMMM I DON"T THINK SO!!!! So a phone call was made to the sleep doctor and her answer just made me feel worse. Her suggestion was to cut the medication dose in half and go from there....but know that nausea is a side effect. Nausea I can understand, I can help Maelee deal with, but vomiting for hours is not an option. Maelee is not a huge baby, we have worked hard to get her to eat with her GERD, I am not promoting vomiting......no matter the benefits. In this case the risks outweigh the benefits. Reflux children who vomit tend to ignore food, have aversions, and go backwards in growth- I don't think so!
This Momma is on a mission for a new solution. I know Maelee's legs are bothering her. It breaks my heart to see and know she is getting more frustrated with her body over something she has no control. There has to be a better solution, a natural solution....and by solution I don't mean a cure as I know that isn't out there but something to help her ease the creepy crawly feeling, something to help with her spasms from CP, something to allow her the rest her body needs. When your child just falls asleep on the floor playing you know that something has to change.
Maelee gets so upset at the idea of being in her bed to fall asleep or nap. I know we have not helped by giving in and allowing her to come in our room but when your child cries in pain there is no other response as a Momma to snuggle, cuddle, and massage those pains away! She is my child and it is my responsibility to fix this problem.......just like all the other difficulties but I am starting to realize that I am not able to fix anything and that is frustrating in itself.
I want to help her, I want to be able to give her a solution, I want to take it all away but I can't. It's defeating, tiring, and breaks my heart in a million pieces daily. I have to accept that there is no answer for me to give her except guidance and being her voice at all appointments....but that just doesn't feel enough. I want to cure her, I want to make her body work the way she needs, I want to allow her to sleep peacefully and not fear it, I want her to walk up the stairs without additional rails for help, I want to allow her to run without her braces, I want her to use her left hand without struggle and anger, I want her to be able to dance and do ballet without telling her to put her feet down, I want to see her in cute sandals and have her toes painted.....but with this list I realize the "I want" part is there.....what does Maelee want?!
She doesn't know a different life right now. She doesn't have a way to tell us. I see frustration but is that at her body or at us for telling her how to move her body?! I will never know these answers until Maelee is able to tell us, Maelee is a strong little girl and has figured out a lot already. Having faith that she will be able to accept her life and be strong it in hasn't been easy but when I see her determination and perseverance I realize that the "I want" changes to "Maelee wants", she is growing into herself, becoming more independent, and showing us how she will do things- even if they are different than others or how we dreamed.
My dreams changed that September day in 2011 but I have realized they changed for the better. Maelee is an amazing little girl who is showing us life in a new way, a way we appreciate much more, a way that no words can describe, this life can be a scary place but Maelee is taking it all in, showing it what she can do, and is AMAZING!
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