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Posted 2016-02-22T20:04:47Z

We are going home and Eben has a message for you.

The time has come to go home!  Last week, we recieved some wise counsel from the first doctor we seen when we got to Mayo.  Her words of encouragement of going home and regrouping was just what this mom needed to hear.   Today marks our 7th week in Minnesota, and we just down right miss our family.  I don't know how many more nights I can put Blessing to sleep crying for his Pappa and Eben wanting Jada.  We just miss our tribe. 

As far as Eben goes, the doctor said he is medically complicated.  She is confident our team of doctors at home can continue with the monitoring and testing that needs to be done.  Eben will start out-patient rehabilitation and will begin to start seeing our team of doctors starting next week.  He will require a lymphadema team and a cardiac work-up, but those things can be done at MU.

He has been diagnosed with Reflexive Sympathetic Distrophy and he is having trouble with autonomic regulation.   All of this is to be expected with his lower brain stem degenerating. 

Our next trip to Mayo will be in May for 7-10 days.  When he comes back it will be to do an extensive neurological and sleep work up.  They want to get a baseline of cognition and how much cerebral apnea might be playing apart in his overall health. 

However, I must say.  This shunt set up that he has right now.  Seems to be really working. He does not appear to be over draining.  His stamina is increasing everyday, and today he was learning how to fall and get out of the floor properly.  It was so good to see him move without shaking and tremors that come from intracrannial pressure fluctuation. 

This has been a long row to hoe.  At times, it seems endless, but God has been faithful thoughout it.  Eben says he is ready to live.  So, we are going home to do just that.  LIVE! 

He has a message for you.  Here is a video, he wanted me to put on THE facebook as he calls it. 

https://www.youtube.com/watch?v=W8Em3dXN4cQ

We love you all.  We look forward to getting home and seeing some of your wonderful faces. 

 

 

 

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