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.  

3 days left

3 days left.  Please pray for a feeding frenzy our last three days.  We need a miracle from our Mountain Moving God to increase Leo's volume during a session.  He is holding steady at 1.5 ounces during 14 minutes.  Please pray that we can increase that to at least 8 ounces during a session.  

Walked Out.

Today was a frustrating day and at one point Leo and I walked out.  We walked around the block for about 20 minutes.  We had a talk and Leo convinced me to go back in.  

In an effort to get Leo to drink in the most effective way, they introduced a honey bear cup to him today.  Basically squeeze the bear belly and the liquid goes up a straw and into the mouth.  This is a great invention but requires skills Leo doesn't have yet.  I want volume up so that we can come home on as few feeds as possible. Learning a new skill decreases volume.  So we walked-literally.  I did go back and explain my concern.  We reached a compromise that I think will work.  We will try it tomorrow.  

A praise- Leo did cooperate the most he ever has.  His "fights" per session were down.  This was awesome.  

This is our last week- 4 more days- I am chanting "I think I can, I think I can."  Please pray that God gives me the strength to finish strong.  Please also pray that Leo cooperates tomorrow and that his volume intake is back up.