January 20, 2010 10:30 PM

Hello friends,
     Well, since the last post we have had some good and bad days.  Thankfully, we are in the good ones now.  This last week the Doc has gotten Micah off of the blood pressure that he was on, adjusted his pump more and started reducing the meds that help him sleep at night.  I think all of that combined was too much at one time and his system didn't handle it well.  Two days out of the weekend he just looked like he was stoned, no expressions whatsoever, that was difficult.  
     His PT had been worried about his right leg, thinking that it had lost some of its range of motion, but on Tues. she told me she got it completely straight (first time since we've been here)!!  He has also gotten more vocal lately.  Up to this point, the only noise we have hear out of him has been when he is mad or upset and even then it wasn't every time.  Any noise from him is a welcome noise.  One of the kids had told me they couldn't remember what his voice sounded like anymore   : (  The last two nights have been good sleep nights for him so he was much happier and we have not had any emesis the last two days.  He has had enough though, that he is going to be making another trip to St. Johns soon to have an upper GI to see if they can find a reason for it. I don't have a date for that yet, but they were hoping to do it this week. 

     The rest of us are doing okay here, not great, but okay.  The kids have been counting down the days to go home, I hope that the date doesn't change as they will be very disappointed.  We are all missing home and friends terribly.  By the way, "Girlfriends" thanks for that great message the other day, you cheered me up and made me cry all at the same time!  

1-25-2010


     Sorry it's been so long, we have been busy and have had some good company.  Micah's good days have continued and we will be having the upper GI on Wed. morning around 10:30 and we should have immediate results.  If they find nothing wrong then we will be staying with the previously mentioned discharge date.  We are all very much ready to be home.  
     After Micah's pump surgery he had lost some of the movement in the arms that he was doing, but the last two days he seems to be trying to use them more again.  He has been more relaxed lately also.  The therapists have been working hard on getting the legs and arms fully straightened out when they work with him.  When he is asleep he is more relaxed and we can stretch him out better.  Today one of the nurses told us that the last time she had him that he was so relaxed in his sleep that they thought something was wrong with him and they checked all his vitals and called the Dr. to look at him also!  The Dr. said nothing is wrong, this is beautiful!  
     Outside of the total healing that I know you are all praying for (and I thank you for that), please pray about his head.  We are trying hard to during the day and night at least prop it up where it is supposed to be.  There is nothing at all wrong with the muscles, and he used to hold it up very well, but now it is usually on his right shoulder.  Looks very uncomfortable!  Also pray that his swallowing would be consistent.  He chews things, but swallowing is a problem.  
     Prayers for the rest of us are also welcome, lol.  We are doing well and the kids have been great, but we are ready for the move.  I have my days when I feel like I'm living in Ps. 38, but God always manages to pull me out and keep me going.  I'm very thankful that He loves me even when I am unlovable!
Blessings,
Tina