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Sunday, August 19, 2012


Tomorrow will mark one week that Jacob and I have been home. Home. It's amazing how much more comfortable life is when you are in your own element.

Jacob turned back into his old self 2.0 seconds after walking in the door. He was laughing with his sister, playing toys, running around and playing hide and seek outside. It was an amazing transformation! His check up on Friday looked good - his numbers are on the rise and everything sounds good. We were hoping to get his NG-tube pulled next Friday but it had plans of it's own and fell out last night. I told Jacob that as long as he ate a good amount I wouldn't put it back in and so far he's eating at about 90% of his normal rate so I'm hoping we can say goodbye to the feeding tube forever!

He will have weekly checkups, which will hopefully go to twice monthly soon. He will be having a CT scan soon and then hopefully we will just have to go in every three months.

Things aren't normal though. He still has to wear a mask when outside and in public places. He is on lots of medications. His skin can burn easily and still has a purplish hue from the rash. We have to be careful about sickness and keep the house clean from dust and dirt as his immune system is still quite low. I still worry about scans and check ups. We rejoice in being home now and that is all that matters at the moment!


  1. I'm glad to hear you're home and thing are going well. A friend of my introduced me to your blog and I have been thinking of you an your family and praying for you everyday.

  2. Great news that Jacob is home! Enjoy these last couple weeks of summer. Praying for future awesome test results for Jacob!

  3. Praising The Lord that you are having alot of good reports and good news!!!
    We will continue to lift each of you up to our Heavenly Father daily and trust in His neverfailing love and guidance.

    Carol Ann Singleton
    from Maryland



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