Friday, March 26, 2010

March 26, 2010 10 PM

Hello friends,
     Well, we just got home about 2 hours ago and I wish that I could tell you that we were really excited about the tests.  We took the 2 hour trip to Nashville this morning, got there right on time, were called back on time and then waited from 1:50 (1st appt. time) until 3 (2nd appt. time) just to find out that the person that was supposed to do the test was not working today and that the only other doctor available (they don't have many that work with these pumps) was in surgery until late. Even if he had the time he would not have done the procedure because he had never seen Micah before.  They did call me yesterday and confirm the appt. to make sure we would be there on time, if only we could charge doctors for things like this : (  
     Thomas did take the day off of work, but it was not a total waste as we got some good quiet time in the car.  Micah did enjoy getting out of the house and had no problems in the car.  We also got to spend some time with a good friend that we had not seen since Sept. when Micah was at Vanderbilt.  All in all it was a good afternoon though we spent 4 hrs. driving and will have to repeat this again next week.  I don't have a date yet, but will let you know when I find out.  Thanks for all of your prayers.  
     As for life around here, we are getting better at keeping the house running (not always smoothly).  The kids have been a great help for me, plus a few dear friends that have been helping out a lot.  We finally have Micah signed up through the school system and soon we will start having some therapists/teachers in house to work with him.  He has been doing really good for us, but hates when we stretch him out.  Another bit of good news is that (I said that I wasn't going to put this on here) hmm, how to best put this?  He is regaining some control over certain bodily functions : )  We are very excited about this, he may not be happy I'm telling you, but it makes him feel good too!  
     The next news item we have is that we are going to be moving into a bigger home.   One that we can easily get Micah in and out of.  Many of you already knew this and have been offering help with the "getting the house ready" process.  We do appreciate all of the offers, but I cannot remember all of your names so please send an email & contact info to:  Please send us your name and what you are capable of helping with from childcare to skilled labor and everything in between.   


Thursday, March 18, 2010

March 18, 2010 10 AM

Good morning friends,
     There was a last minute change to the schedule.  Micah will not be having his test(s) today, but has been rescheduled to Friday the 26th, 1:50 in the afternoon.  If I understood correctly they will be doing the dye contrast and then possibly one other test that day.  
     Micah has been doing well since the last post, and has been going outside some lately since it has been dry.  He loves to be outside so the warmer weather has been a blessing.  Thomas & I have been having some serious talks with him lately about the way things are for now, how his friends respond to him, how his siblings love him and care for him, God's promises for his life, etc...  The response is always the same, he listens carefully, but the emotions always win and he cries & cries.   I hate to see him cry, but am always happy to see that he does understand what we're talking about.  I have, of late noticed a stubborn streak emerging in him.  When we are asking him to do something specific to answer a question that he doesn't want to do he will totally ignore us, not even look at us.  What to do, sounds like any other kid.  
     This is from my reading this morning:
O God, You are my God;
         Early will I seek You;
         My soul thirsts for You;
         My flesh longs for You
         In a dry and thirsty land
         Where there is no water.
  So I have looked for You in the sanctuary,
         To see Your power and Your glory.    (PS  63:1-2)

“Most assuredly, I say to you, he who believes in Me, the works that I do he will do also; and greater works than these he will do, because I go to My Father.  And whatever you ask in My name, that I will do, that the Father may be glorified in the Son.  If you ask anything in My name, I will do it.   (John 14:12-14)

Now this is the confidence that we have in Him, that if we ask anything according to His will, He hears us.  And if we know that He hears us, whatever we ask, we know that we have the petitions that we have asked of Him.        (1 John 5:14-15)

     We keep asking and we keep believing and so must you dear ones, whatever the situation.

Sunday, March 14, 2010

March 14 10:30 AM

Hello friends, 
     Well, it's Sunday morning and I'm at home with Micah : (  I've been (along with some of the other kids) sick and Micah really wanted to go to church.  We were getting him ready, but shortly before Thomas left with the kids, Micah threw up and there was just no time to get him cleaned up and ready.  He was very upset.  What to do?  There seems to be no way to calculate when this is going to happen and cleaning him up takes a lot of time.  Okay, I'm finished whining today.
    We've (despite the above) had a good week and had some wonderful visits with some special people.  We will be headed to Vandy with Micah on Thursday the 18th for the dye contrast test that I mentioned in the last blog.  I will try to get on here that evening and let you know what the Dr. says.  No promises, but I will try to do better at keeping you updated with what is going on around here.  
     I've put a link here of a song that I was listening to this morning and if you don't have time to listen then the lyrics are below the link.  A good message for all of us to remember is that God's love is unending.  No matter the situation or what it feels like He is still there.  Be blessed today and enjoy your family.


On and On by Chasen
Awake tonight
I’m breathing the air of the night sky
Listening and wanting
An answer to questions You’re wondering
I never thought it ever would be possible
To cross the lines we drew
That govern what we say and do
But no height and no depth could separate us

Some say we need a miracle
Some say there’s no hope at all
But I know Your love is strong, it goes on and on and on and on
Rise up when it gets us down
It’ll be the voice in a blaring crowd
Because we know Your love will lead us home
It goes on and on and on and on…

I tried my way
It always ends up being a mistake
But You’re right when You say
That You set the time for the plans You make
I never thought that I could ever learn to let it go
Somehow its better when I follow in the paths You show
So I’m here I’m waiting
Cause I believe


There is no fear of belief
There’s just this cold reality
That wants to take me away from You
There is no doubt in my mind
That in Your perfect time
Your plans and Your ways will unfold.

Tuesday, March 2, 2010

March 2, 2010 10 AM

"He who refreshes others will himself be refreshed."     Proverbs 11:25

Hello friends,
     Sorry it's been so long since my last post.  Sometimes I just don't want to get on here and write and other times I simply can't.  I've had both of these "times" since the last post.  My excuses were that either I was feeling too emotional or too angry or I don't have time.....  My only good excuse was that for a period of 5 1/2 days we had some virus sweep through the entire family.  Micah and I were the last ones to get it.  I had to call in recruitments to help me.  A big thank you to those who came to help and to those of you (though you probably thought nothing of it at the time) brought us chicken soup!  Just what the doctor ordered.  If I haven't said it before, thank you all so much for taking time from your schedules to help us out with food or service.  It has all been very much appreciated.  That goes out to all of you from the beginning of this whole ordeal.  Julie, if you are reading this please pass this on to those wonderful co-op ladies in MO/IL whom I've never met.  Maybe one day I'll be able to thank them myself, but until then....  The bible verses throughout this note are promises for each of you, whether you are in need of refreshing or not.  When it's needed God will send it your way if you're faithful to refresh others (whether you feel like it or not).  Sometimes we need to be that refreshing source even when we feel like we should be on the receiving end.  What I'm finding out is that when we feel like we have nothing to give, that is the time that God wants us to give.  It will not only lift up those on the receiving end, but also those doing the giving.  
     We can be so fearful to share our struggles sometimes when that is the very thing needed to get us out of the despair that we feel.  There are many people that struggle with the same issues you do and when you share others will then begin to open up and share also.  This is particularly true among moms.  We can get so down on ourselves about how poorly we are doing as mothers that it is downright depressing.  I remember one day when I was feeling this way, I had gone to a friends house that I thought was the most wonderful, patient person I had ever met.  When I walked in she was really getting on to one of the kids & I felt so much better knowing that this great woman was not the "perfect" mom that I had set her up to be.  

"If you...satisfy the needs of the wretched...the Lord will satisfy your needs"   Isaiah 58:10-11

     Sometimes the person you need to refresh is someone that you don't want to give the time of day to, but they are created by God too.  It may be that the refreshing you give to them is what will change their hearts.  We are all wretched people at one time or another.  Don't think so highly of yourself that you can not help your brother in need.
     As for Micah, we went to meet his Dr. in Franklin yesterday.  This is the doc that will be taking care of his pump.  We both really liked him and he has set forth some things to take a look at and possibly change.  The first is a simple brand change in one of the meds for 1-1 1/2 wks. and if we see a change we keep it.  If not, we will wean Micah off of it and with that will go the med that is given to protect his stomach from the first one.
     The next thing to look at is the pump itself.  He wants to make sure that it is not leaking.  As I said before, we really have seen no difference in Micah since the surgery.  The first thing will be a contrast study (dye) done in Nashville to see if the catheter running from the pump to the spine is leaking.  If it is, it will be fixed.  If not, the next step is to do another test which would be done by the doc that put the pump in (St. Louis).  This would involve giving 2 doses (via spinal tap) of baclofen to Micah.  One in the morning and one in the evening to see if we see a difference in his tone.  This was done during the trial that he had before the pump was placed in him.  There was a very big difference in his tone at that time, but nothing since then which is why the doc is wondering if it is functioning properly.  If there is no progress after the spinal taps then we will know that Micah has built up a tolerance to the med and he will be weaned off and the pump removed.  We will keep you informed as to the times of these tests.  
     The rest of us are doing well and trying to get back into some sort of schedule around here.  Thank you for praying for us & please know that we are praying for you also.  

"Lord, be as the dew to me today, as You were to Israel, that I may flower like the lily" Hosea 14:5

                                                                                                                                                              Much Love & Blessings,