Rainy summer day AT HOME!

It is SOOOOOO nice to be home!!!!  I was so disappointed that it has been raining since we got out of the hospital this week but today I ended up really enjoying the gray day at home.  Kai and I had a morning doctors appointment, visited with family and had lots of snuggle time.  He was so happy to spend some time with dad! They are so cute together.

Transitioning from a weeks stay at the hospital back to home life is still hard on me sometimes.  There are such highs and lows when we finally get to spend some time at home.  In the hospital yor at work.  Investigating questioning everything. Doing tests. talking to nurses. You forget about life ‘on the outside’. Being home i am reminded of all the things we are missing out on. All the things that are so much harder now because of feeding tubes, medications and worrying about germs. And then there’s still the sleep, or lack of sleep,  which always seems a million times harder to deal with at home???  I guess we’ll give the sleep study one more shot.   This is really our last chance of finding some explanation besides just the tumor.  Some cause that we could treat or change or fix.  Of course I don’t want there to be anything else wrong, but if its the tumor causing him not to sleep I’m afraid there is not much we can do about it and i really dont know what were going to do if this is how it’s always going to be…

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