Wednesday, June 3, 2015

Odds are Not in our Corner

Another hard, long day. This has been a hard, long, emotional, physically draining journey.  Learning to eat is not easy.  This has been hard work for Leo.  He has made great strides.  Leo has so many good things going for him.  Things that make learning to eat easier.  He is not as combative as some kids, he really does want to please, and physically he is able to do this and his body is able to handle it.  His biggest giant to eating is  his  low tone and his poor oral motor coordination.  His swallow has gotten gotten a lot stronger in the last 5 weeks.  You can now hear him swallow.  That is huge.  

Today the doctor reminded me that the odds are and have been stacked  against Leo ever eating by mouth.  Just having the diagnosis of Wolf Hirschhorn Syndrome puts him at a disadvantage to eating my mouth.  (By the some of Leo's WHS friends do eat my mouth)  BUT the team at the feeding clinic all believe Leo can do this. They see Leo and not a diagnosis.  They believe in Leo. They also know this is extremely hard work for him and they are realistic.  I was reminded once again that this is a marathon not a sprint.  Leo will master this, it will just take time.  They are predicting Leo will eat and chew by mouth and get off his feeds, but on Leo's time table not ours.  

Now we prepare to transition to home.  Leo came to the clinic taking 5 g tube feeds a day.  He will go home on 4.  Progress.  We will return June 22nd for a follow up and adjust his feeds accordingly.  

Please continue to pray for Leo. Pray we finish strong and that even in these last 2 days Leo's volume increases.  

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