Finally...

So we have some good news and some ok news.  We finally have some answers about what has been upsetting JW and possibly causing some of his sleepless nights.  The "ok" news is that the doctors believe JW has reflux.  Not so great, but good that we can get to work on fixing it!  He has been started on 2 medications for this and Allie says he has already been resting better in the hospital.  Yay for that!  The good news is that they have pretty much determined the cause of JW's episodes...his monitor!  Yesterday he had two episodes, one at 4pm and one sometime in the middle of the night.  Both times, he was hooked up to his home monitor AND the hospital monitor.  During the episodes the hospital monitor showed he was fine and his home monitor showed his heart rate plummet!  After the 4pm episode they put a brand new probe on his home monitor, but it still did the same old thing when JW had the mid-night episode.  This is what led them to determine the whole issue stemmed from the monitor.  So, a new one is in route and hopefully this next one will work correctly and give Allie along with the rest of us some real peace of mind.  Also, mom sent me a photo via cell phone from his second day in the hospital and JW's arms were almost straight down by his sides!!!  The botox is definitely working and helping his little muscles to relax and stretch out.  I will try to email it to myself and upload it so you can all see the BIG difference.  We are expecting JW to be released tomorrow, but that is subject to change, of course.  We still aren't sure about what is upsetting JW so much to bring on his episodes of crying...where we cannot calm him down in the slightest.  It could be the reflux, could be his hips, we just don't know at this point.  So, please keep praying that whatever is bothering him will be revealed to Allie, us, the doctors, someone...or that whatever it is will just go away.  Thank you for all your phone calls, emails, help, encouragement, support, and most of all your love.  We need each one of you more than ever and we are so glad that you have been so willing to share in all of this with us.  I know it means so much to all of us, especially Allie.  My prayer is that JW's experience thus far in this world and all the hardship our family has faced will not be in vain but that each one of us will be a testament to the faithfulness of our Lord...His power, His love for all of us, and that all we do will bring immense glory to God alone.  God's purpose and plan, particularly for JW's life, is SO much bigger than what any of us can ever possibly imagine.  I am so thankful that He is in control and has been with us EVERY step of the way, before and since JW entered this world.  God purposed JW's life even before he was created in the womb.  I know we are blessed to have been chosen to be JW's family.  Allie, God chose you!  He chose us!  He loves you and JW more than you can imagine and HE IS WITH YOU.  Remember these things: "Be strong and courageous.  Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you."  Deuteronomy 31:6;  "As I was with Moses, so I will be with you; I will never leave or forsake you."  Joshua 1:5;   "'For I know the plans I have for you', declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.  Then you will call upon me and come and pray to me, and I will listen to you.  You will seek me and find me when you seek me with all your heart.'"  Jeremiah 29:11-13.  The wonderful thing is that you can rest in knowing that God is in control, His perfect plan and timing is at work in you, JW, and our family.  May you feel the peace, comfort, and love He has to offer you.  And may He help me and the rest of our family to love you, help you, comfort you, and strengthen your spirit when and how you need it.  Praise Him for the miracle of JW's life and how well he is doing!  May he continue to bless JW and heal him in every way.  I love you and JW with all my heart and I am here for you both to the end of my days!  Love, Lindy