Wednesday, April 28, 2010

April 28, 2010

Hello friends,
     Today went well.  Unlike our last trip to Vandy, when I walked in the door there were people waiting on me and they had already checked us in!  They were really embarrassed by the last trip there.   Micah went through the test and CT with no problems or complaints, but thus far they have not noticed any leaking.  They were going to study the pictures more and let us know if they find anything.  Our Dr. told us that this test may not show anything, but he wanted to do it first as it was the least invasive of the tests.  Our next step will be a comparison test.  Micah will spend the day at the hospital for this one.  They will first give him a large dose of his med via the pump and then watch him for a few hours to see if they notice a difference in him.  Later in the day he would get an injection of the same med right into the spine and the again they would watch him.  If we see a difference only in the injection, then we will know that the pump is not working properly.  He got an injection like this when they did the trial before the pump was placed in him.  Had the trial not gone well Micah would not have gotten the pump.    We don't have a date for this test yet, but I should find out something in the next few days.  Thanks for your prayers!

Tuesday, April 27, 2010

April 27, 2010

Hello friends,
    Well, Micah has continued to do well off of his meds and tomorrow morning we once again head to Nashville to see about the pump.  Hopefully this time there will be someone there to do the test!  I'm not sure how to pray about this except that God's will be done.  I'd love to have him off of the meds, but I'd also like for it to not be working, get it fixed and see him be able to move more.  His appt. is at 10:30 am and will take about 1 1/2 hours.  I'm keeping this short and will try to get back on here tomorrow evening to let you know what we find out, if anything.  
     Blessings and thank you for your prayers,

Tuesday, April 20, 2010

April 19, 2010

Hello friends,
     Well the birthday went well and Micah got a new friend whose picture I hope to get on here soon.  He was a happy camper all day!  My parents came for the weekend and were very happily surprised with Micah.  They had not seen him since we left St. Louis and he has changed a lot since then.  This afternoon I was called to his room by Abigail who found him with his leg hanging over the side of the bed and the rails were up (left leg over the right rail)!  I have not seen him do that since before his pump surgery in Nov. I think.  At that time he was doing that so often that they put him in a bed that was like a tent so he couldn't fall out.   
     He is still doing well off of the meds, no vomiting etc...  He was on 8 different meds when we came home in Feb. and now we are down to 2, praise God!  The last one he has only been off of for 2-3 days and so far there is no problem.  On the 28th we will have the test done to see if his pump is working properly.  
     We are all doing well by the grace of God.  We are keeping busy with work, school, Micah & the new house.  Renovation is going well and we have been blessed to have a lot of friends (new & old) to show up and give us a hand.  We've been taking Micah with us also and I think he enjoys getting out and seeing all the people and there is always something going on for him to occupy himself with.
     I've been thinking a lot lately about hope. My Bible defines it as:  the expectation of future good.  Future good, that means something isn't good now.  We all know the popular verses about hope, but there is one much less quoted, 
     "Hope deferred makes the heart sick, but when the desire comes, it is a tree of life."  
      Proverbs 13:12  
What I like about this verse is that it says "when" the desire comes, not "if".  My desire is obvious, sometimes though, I catch myself thinking that it would be easier to just accept things the way they are.  Why would I think that?  Well, because hope is painful.  To continually put my hope & trust in God, believing Him for Micah's healing opens me up to all kinds of pain.  It's okay for me/us to hurt and to cry out to God, the balance is to not live in that pain.  If I live in that pain then I am not trusting God and there is no room for joy in my heart.  God does not work on the same schedule as I do, if He did Micah would have been healed a long time ago and all the prayers of different people around the world, answered.  So, what do I do?  Should I quit hoping so that I can avoid the pain that comes with it?  I think not, and you should not quit hoping for whatever your desires may be either.  Don't be afraid to cry out to God, but take time also to praise Him & thank Him.  Praise Him and the joy will come.

Thursday, April 15, 2010

April 15, 2010

Hello friends,
Well, I am happy to say that Micah is off of his muscle relaxant with not problems.  We started this process last Tuesday, since that time he has gotten more relaxed and has not thrown up in a week now.  Oh, and Micah's birthday is tomorrow, he will be twelve.  He is very excited, maybe we will get a new picture on here of him on his birthday.  Praise God from whom all blessings flow!  
We went to church this evening and had a wonderful time of worship.  One song in particular really touched me, I've put the words below (emphasis mine).  I pray this will minister to you as much as it did me.   


Desert Song  (Hillsong)

Verse 1:
This is my prayer in the desert
When all that's within me feels dry
This is my prayer in my hunger and need
My God is the God who provides

Verse 2:
This is my prayer in the fire
In weakness or trial or pain
There is a faith proved
Of more worth than gold
So refine me Lord through the flame

I will bring praise
I will bring praise
No weapon formed against me shall remain
I will rejoice
I will declare
God is my victory and He is here

Verse 3:
This is my prayer in the battle
When triumph is still on its way
I am a conqueror and co-heir with Christ
So firm on His promise I'll stand

All of my life
In every season
You are still God
I have a reason to sing
I have a reason to worship

Verse 4:
This is my prayer in the harvest
When favor and providence flow
I know I'm filled to be emptied again
The seed I've received I will sow

Wednesday, April 7, 2010

April 7, 2010

Hello friends,
     As I sit here listening to the rain and the thunder I'm reminded of the awesomeness of God.  He is in control of everything.  He makes the plants to bloom, the pollen to spread and the rain to wash it away.  If we could see the "big picture" through His eyes we would see that nothing is early or late. 
"There is a time for everything, and a season 
  for every activity under heaven"  Eccl.3:1

     Since my last blog, Micah has gotten off of the nuero-stimulant with no problems.  Thank you all for your prayers.  Coming off of that particular med caused a little bit of upset to his "system" and so we have taken him off of another med to see if that helps to make things more normal.  
     Today we had Micah's appt. to get his pump refilled so we made the trek to Franklin to see his Doc.  Thomas couldn't go so I took a friend along to help me out and we had a good time.  This was my first time to take Micah anywhere without Thomas along to help so it was a big day for me also.  We were feeling so proud of ourselves that we decided to try taking Micah into a restaurant with us instead of eating in the car.  This was actually quite risky as Micah was not keeping things down well today, but we made it through lunch and all the travelling with no mishaps.
     As for the Dr. appt. itself, it went well and the refill didn't seem to cause Micah any discomfort at all.  We are also starting to wean Micah off of his last (outside of his pump) major med!  This happened because I didn't get to the pharmacy to pick up a refill on Friday and didn't realize that they were closed on Saturday.  When Monday came around I was out of this particular med, it is a peripheral skeletal muscle relaxant.  By the time I got everyone up and was able to get out and back it was way past the 8 o'clock dose time.  After weighing the options I decided to skip that dose rather than push him back to the wee hours of the next morning to get his evening dose.  Around noon or later Thomas came for lunch and we had just put Micah in the bed and his legs seemed so relaxed to me.  I called Thomas in to see what he thought and he agreed that he was much looser than normal.  Now one would tend to think that if you don't take your muscle relaxant that you would be more tight, right?  We decided to skip that dose again the next day just to satisfy our curiosity and again he was more relaxed, so when I told the Dr. about this he said to start weaning him off of it and we'll see how he does.  It will take about a week and if we see no adverse effects we will be done with that one also!  We praise God for every little step!
Thank you so much for sticking with us and praying for Micah and the family.  

Thursday, April 1, 2010

April 1st 2010

Hello friends,
     Welcome to April and I pray that you don't have to deal with any fools today!  We are doing well here and gearing up to start on the new house.  If you didn't notice the link to the left on my last blog, please take a look.  Thomas has started a blog for the house.  We had a lot of people tell us that they wanted to help with the work, but had trouble keeping all those names in our heads, so we started the house blog to let people know what kind of work is going on any given day.  If you are one of those people and we haven't contacted you, we do want your help.  You can respond to the email link to let us know what you can help with.  We are excited about the new house because it will be so much easier to move Micah around and to get him out of the house.  We have so many dinks in the walls in this house from his chair it looks like someone has been throwing rocks at them!
     Our appt. for tomorrow has been rescheduled again to April 28th.  The Dr. had wanted to check the pump before refilling it, but as it turns out, we are going to have it refilled on the 7th but are not going to be able to see if it is working properly until the 28th.  Seems a bit backwards to me : /  We have recently gotten Micah off of the sleeping med he was taking without any trouble.  This week we are weaning him off of another med,  a neuro-stimulant.  Our prayer is that we will not see any regression in him so that he will be able to stay off of this one also.  He should be off of it by Monday so please pray that he will do well.   
     We have been enjoying the warmer weather and getting Micah outside more.  He had a teacher come by to visit this week and until she knows more about what to do with Micah, where school work is concerned, she will be reading to him twice a week.  She brought a Hardy Boys book with her this week and he seemed to enjoy that.  I think the next step will be the therapists coming to the house.  It could get a little crazy around here with therapists, teachers, new house and homeschooling, please pray for my sanity!  
     One other thing that I've noticed lately with Micah is that his laugh is starting to sound more like he is laughing instead of just some random sound coming from him.  Did that make any sense at all?  I'm hoping that this is just a beginning of him getting control over the tongue and vocal chords.  I have not been consistent with giving him things to try to chew and swallow, but his tongue has been more relaxed lately and staying forward in his mouth so we will try that more.  I did buy him some very tiny peanut butter cups the other day and he was very happy about that.  He doesn't always get all of it down, but he tries.  We need a consistent swallow from Micah, he chews fine, but the swallowing is the hard part.  To have a consistent swallow he needs more control over his tongue.  Oh, that we all had that, that tiny little member causes us all trouble!
     As for the rest of the kids, they are doing great.  I've have been pleasantly surprised how they have rallied around Micah and pitch in to help with even the most unpleasant of jobs without complaining.  Sometimes those "unpleasant" tasks are taken care of before I even know that they happened!  I am truly blessed with these children and a wonderful husband to share them with!  May the Lord bless each of you with His presence today in an uncommon way.  Please take time to enjoy this weeks many opportunities to celebrate Jesus.  Many churches will be having Good Friday services and Easter Sunday services also.  If you don't have anywhere to go, we would love to have you come to our church.  

Blessed is the man who does this,
       the man who holds it fast,
       who keeps the Sabbath without desecrating it,
       and keeps his hand from doing any evil."  Isaiah 56:2

I want men everywhere to lift up holy hands in prayer, 
without anger or disputing.  I Timothy 2:8