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  • #31
    My hat goes off to you as a mom, myself! I wish, you all the best and hope for the most life has to offer them!! They too, have time to live but for awhile, must focus on recovery!! Glad they are in good spirits, that will take them the farthest, hold tight to that!! Many (((HUGS))) and prayers to your dfamily and especially your dds!!
    "I've got to keep breathing. Because tomorrow, the sun will rise. Who knows what the tide could bring?"


    • #32
      My thoughts are with you. Take all the help you can get and ask for help. Look after yourself. Don't know what else to say but thinking of you.


      • #33
        It seems counter-intuitive but sometimes a need for increased suctioning is as a result of too little water intake. Could your daughter be drinking less? It may be worth keeping track of her water intake, number of suctions and the quality of the suctioned material (ie- frothy white vs thick tinged coloring) to see if this in fact an issue, and determine the ideal water needs- and hopefully you can reduce the need for suctioning.

        Do you have in home OT (Occupational Therapist)? The OT may be able to help develop an independent suctioning setup at least while she is up in her wheelchair- one that is positioned and she could turn on/off via an ECU (environmental control unit- now called EADLs or electronic aids to daily lving). Perhaps other devices for independence- voice activated, infrared, x10 - all a means for the girls to increase control over their environment. This could free you to do other things, and make them feel less dependent. Once they return to school the school's OT should be able to assist as well. Just a thought.
        I wish you and your daughters the best of luck. Don't hesitate to PM me with questions.
        Pam OTR/L


        • #34
          Hello, happymom,

          I got to thinking of you the other day. Hoping and praying you all are adapting to this new life. I know it isn't easy, just remember that there are people here thinking of you.

          All the best,
          get busy living or get busy dying


          • #35
            Bless you Happymom,

            My heart and prayers go out to you. My husband is a C5 complete and dealing with him and our 2 year old is enough. Bless you and good luck. Never give up.

            "Love still stands when all else fails." 1 Corinthians


            • #36
              Good luck