Tuesday, November 12, 2013


November 13, 2011
The 8 week mark was up and this mama was anxious....so I started my phone calls.....
I got the number to the place where his test was being done from another mom who was waiting on her daughters test as well.  I'm sure they LOVED hearing from us.  We had this idea that if we annoyed them enough maybe they would take us seriously.
Well, they must have heard about our plan and decided to take their sweet time.  This time when I called they said they were under staffed and the test hadn't even been started yet!!!!!  Are ya serious?! I was told 7-10 days which turned into 8 weeks and now you're saying they haven't started?  Well, thankfully they informed us that once the test starts the results take a week......so I guess after waiting 8 weeks what was 1 more?
In the time being....Keean was able to increase his formula intake to help increase his weight.  He did come down with a bug after he had his Mic-key placed (which by the way was the most awesome transition ever).  It was so much fun to have a baby I could pick up and carry to the other room without a huge tube coming out of his stomach and a feeding bag attached.  He was on continuous feeds, but we were allowed to shut it off at times and play with him without the nuisance of tubes hanging everywhere and a feeding tube backpack. 
The GI doctor called us to talk to us about the biopsy results.  She said the villi did not look any different from the first biopsy they did on Keean.  This was not horrible news, but it wasn't good.  We had been hoping that we just had a run of bad luck and his villi were repairing themselves, but because they hadn't changed it led the GI doc to believe something else was going on.  So, we got a referral to the immunologist at Children's.  She also requested we start PT (physical therapy) and OT (occupational therapy) because Keean struggled with low muscle tone (which he still does) , would not bare weight on his legs and would not hold up his head when he was on his tummy (and he was 5.5 months old). 
So, at 5.5 months old, Keean was 12 pounds, had low muscle tone, damaged villi, trouble gaining weight, reflux, chronic diarrhea and watery stool and a diagnosis of Failure to Thrive (which isn't really a diagnosis....it's just what they say when a baby doesn't gain weight well).  But, regardless of his struggles, Keean was happy.  He was interacting with us, smiling, grabbing things, laughing, playing as well as he could and content.  I'm not sure if I have said this before, but my husband and I used to ask how good he would have been if he wouldn't have been sick because he was sick and he was simply amazing! 


  1. This story is incredible! I love seeing the pictures too. He is just so full of joy with his hands all up in the air :)

  2. You are such an inspiration. It's great to hear all your positive thoughts even though you have been through such a tough journey with him already. I absolutely love the picture. Great to see a smile on the little guys face since he has been through so much already!

  3. I applaud you for the amount of strength you have described thus far in your entries. I thoroughly enjoy reading your writing to learn more about the journey your family went through. Definitely showing hope in a time of struggle.