Saturday, January 30, 2010

January 30, 2010 12:30 AM

Hello friends,
     Well, we had a good party today and Micah was very happy.  The last two days he has been very happy, I think he knows he's going home.  The hospital got him a couple of books, a very nice blanket (they call them "hugs") and a video MP3 player with a set of headphones.  I was quite surprised.  They do this for all of their patients that have been there at least 3 months.  If for nothing else, this place has been a blessing to us in that we have learned a great deal from them on how to care for Micah.  The patience that the therapists have with him never ceases to amaze me.
     Thomas arrived safely this evening and will be headed out with the crew on Sunday.  Then he will be headed back here on Tues. evening.  I have quite a mix of emotions over the whole ordeal right now and am not quite sure I could put any of it into words, but I'll try.   I'm very excited about going home, but sad about how we are going home.  Sometimes I feel overwhelmed at how much more is going to have to be packed into one day and then there are days (self-induced, I think) when I am quite unfeeling about the whole situation.  I feel like my feelings are swinging on a pendulum, back and forth, back and forth.   The good part of that is that a pendulum always stops in the center and in that calm time I can hear my Father speaking to me.  
     A dear friend sent this song to me, I don't know the title or who sings it, but I wanted to share it with you anyway.  Also, a verse from a another dear one.  Two words on faith from different sources just a day or two apart.  Jesus help us to have faith to keep believing...

You probably know this: The root meaning of "faith" (emunah) is "steadiness" (as in Ex. 17:12). God's still at work in Micah and in you. Hope to see you soon in Jackson.

I may not hold all the answers, but I know you're faithful God
I will wait... and believe for a miracle

I may not see through the darkness, but I hold Your hope in my heart
I will stand and believe for a miracle

I believe my God is stronger, God is greater
I believe His goodness will prevail

I believe His love and mercy go before me
He is my hope; I will not be moved

I will trust in You with all my heart, my everything

Nothing on Earth, nothing I know can separate me from Your love
I love you Lord and I confess my heart belongs to no one else

Blessings to you all,

Wednesday, January 27, 2010

January 27, 2010 8:30 PM

Hello friends,
     We went for the upper GI today and the results were normal, nothing wrong so we will proceed with the original plan which is to return home on Feb. 3rd.  We are both excited to get home and sad that Micah has not progressed further than he is at present.  For the time being he will need a great deal of care which will take a great deal of time.  The Dr. feels that he will progress a bit more being with his siblings, but not as much as we believe he will.  Once again, they have reached their limits and we are in the best place of all - the hands of the one who created us.  Please pray for us during the transition.  I will still try to keep you informed on Micah's progress at home if you would like me to.

Tuesday, January 26, 2010

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!  


     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!

Saturday, January 16, 2010

January 16, 2010 12:30 AM

Hello friends,
     I'm sorry I didn't get back on here when I said I would, I ended up making a short trip to IL and didn't have the computer with me.  Anyway, the MRI results came back good, no swelling or bleeding anywhere.  This is good, but though he didn't come right out and say it, I know they were looking for a reason as to why Micah has not responded to the medication as they thought he would.  So, they were actually kind of hoping that they would find something there.  As I said previously, I didn't believe they would find anything.  So, this is the reason that we have a tentative discharge date, they've run out of options.  They still believe that Micah will make more progress and that being at home with his family will prove to be good medicine for him.  
     Where does this leave us?  Right where we have always been, trusting God for a complete healing.  We have known from the beginning that there was nothing any of the doctors could do, there is no magic pill for healing a brain.   So if we know this, then why are we here?  I don't know if we'll ever know the full ramifications of our being here, but we do know that this is where God wanted us to be during this time of getting Micah stabilized.  This has been a whirlwind for us that sometimes it seemed would never end, but "the end of all things is near" and soon we will go home.  
     Everyday we pray and claim God's promises over Micah and bring to remembrance all of the things spoken over his life since before he was born.  There are promises made for this child since before Thomas & I were married and we are claiming them and standing firm believing them.  We still have our "moments" of sorrow and acting like whiney children, but that's okay, God didn't say to come to Him as a well-behaved child, just as a child.  
     I'm sure there are some of you out there thinking that we need to quit getting our hopes up and just learn to accept the circumstances as they are.  Well, I don't want to.  I will always hope and pray for better for my child.  If we cannot have hope for Micah to get any better then what is the point of praying.  "Our hope is built on nothing less than Jesus blood and righteousness..."  I serve a God that is not bound by circumstances and has proved Himself over and over again.  We are actively praying that God will use this to change each and every life that has prayed for Micah or even just read a blog entry.  "We want to see Jesus lifted high!"

Tuesday, January 12, 2010

January 12, 2010 10:50 PM

Hello friends,
For all those of you on the other side of the world and the night owls here in the US, Micah will be having an MRI at 6:45 AM on the 13th.  I will let you know what the results are when we get them.  For those of you wondering what this is about you can look at the previous blog.

Monday, January 11, 2010

January 11, 2010 6:30 PM

Hello friends,
     It has been a cold week for us, but today it warmed up a little.  I don't remember how many times I heard, "It's really nice today".  I even said it myself and the temp was around 25 with a "feel like" in the high teens!  Not even warm enough to melt some of the snow we had.  The kids will be wanting to wear shorts when we get home.  
     Speaking of home, we got a tentative discharge date of Feb. 3rd today.  So, possibly we will get to come back home, that would be nice after almost 5 months away.  There are days when I feel like I will never again see my home or the people there that I miss so much, but the end is near.  Wow, I just remembered that my New Years verse started out with those very words!  

  The end of all things is near. Therefore be clear minded and self-controlled so that you can pray. Above all, love each other deeply, because love covers over a multitude of sins. Offer hospitality to one another without grumbling. Each one should use whatever gift he has received to serve others, faithfully administering God's grace in its various forms.   I Peter 4:7-10

     We had a care conference today for Micah and talked about many things.  There are so many things to consider with bringing Micah home and none of them any thing that we want to even think about.   The Dr. (no surprise to me) did not get the response to the pump that he was hoping for.  There is some good from it:  Micah is more relaxed, tone is better, vitals are better and he has been able to get off of some of his meds.  We will be having another CT done this week just to make sure that there is nothing amiss that would keep Micah from having the progress that they expected.  Honestly, I think they will find nothing, but we will wait and see.  
     I don't know why we are having to go through all this or when it will all end, but I do know that there is a purpose.  God has a purpose for Micah's life and this period of his life is going to be a huge part of that.  
     I will blog again in a couple of days after the CT results come in.  May the Good Lord bless you all richly, thank you for your prayers and cards!

Tuesday, January 5, 2010

January 5, 2010 10:30 PM

Hello friends,
     I trust that all of you had a good Christmas and a Happy New Year.  As Thomas said before, we had a good time with Micah and family here.  We are doing well in our new residence and I now have my in-loves (Thomas' mother says it shouldn't be in-laws) with me.  For those of you who don't know them, they worked in Nepal as missionaries/teachers for years.  So I now am blessed with help in the school department. 
     Thomas family has a tradition of every New Year drawing a verse for the year.   His parents will pray and choose more than enough verses for the family and then take turns drawing out the verses for each person and reading them.  This year since they were with us we did all the drawing and sent copies to the rest of the family.  I wanted to share Micah's with you.
     Micah:  Ps.66:8-12

Praise our God, O peoples,
       let the sound of his praise be heard;
 he has preserved our lives
       and kept our feet from slipping.
 For you, O God, tested us;
       you refined us like silver.
 You brought us into prison
       and laid burdens on our backs.
 You let men ride over our heads;
       we went through fire and water,
       but you brought us to a place of abundance.
     Thomas & I both drew the verses that dealt with comforting others, loving others unconditionally and giving to them out of what God has given to us.  It is a good tradition and 
God always gets the right verse to the right person.  
     Micah has been doing well this last week, sleeping good every night and having a very minimal amount of vomiting.  His Dr. said that he feels that it is due to muscle tone being affected by the meds and it will get better.  He has been much happier and has been smiling a great deal.  Today I went for his therapy sessions and when I got there I had to laugh because Micah looked like a mummy all tied down to the incline/standing table!  He had straps all over him!  When the therapists saw me coming they started laughing too and told me that they hoped I would show up for this.  Oddly enough, his body was almost completely straight and he was sound asleep.  They said that this was the most relaxed they had ever seen him.  When the took the strap off that was holding his head up, his head stayed up!  It stayed up for 3 1/2 hours straight, hands down in his lap and him sound asleep!  He missed speech therapy because we could not wake him up.  It was so nice just to see his head up.  Unfortunately he slept most of the day and it was due to his pump meds, but the Dr. wanted to let it go for the day and he believes that his body will adjust to the dose.  The good news about this part is that he will most likely get to come completely off of another of the old meds that was being given for blood pressure.  The less meds we're on the better I feel.  
     I took both sets of grandparents up to see him this afternoon and once they had him up in his chair we were able to keep him awake for a little while.  When the kids aren't with me the adults have to act like idiots or lower our standards to the level of 11 yr old boy humor (need I say more?) to get the kid to smile, but once he starts then they come easier.   We have had a lot of fun with him lately.  
     A couple of days ago I was praying and God gave me a verse out of Ps. 63.

"Because You have been my help, Therefore in 
the shadow of Your wings I will rejoice."  vs. 7

This was in my mind the rest of the day and what God spoke to me was this:
He is always there protecting us, watching over us.  We go through nothing without Him.  During those "seemingly" dark times we need to understand that we are not in darkness, but His shadow.   What safer place could there be than this?  Does it still seem dark?  Yes.  Is it still scary at times?  Yes.  But we must learn to recognize His presence and choose to not live in fear, but to rejoice in His protection over us.   There are days when I feel like I am walking through a dark tunnel that never ends, and each day God strengthens me to keep taking another step and another and another...  Every day we ask like a child and keep reminding God of the promises given long ago, we keep believing and we keep loving our Father who knew we were going to be here before the foundation of the world.  If we can't trust our Father then we can trust no one.
Blessings to you all,