2 steps forward, 1 back

This week Leo's volume has actually gone down.  He is experiencing some tummy, bowls and reflux issues.  Tomorrow we go to his surgeon who takes care of his g-tube, reflux and nutrition.  I am hoping we can figure out what is not agreeing with Leo and get him back on the upward track to eating orally.  

 The lack of measurable volume has been discouraging to me.  We are trying to figure out the balance of feeding Leo and living life.  We need to be able to do this long term.  If this marathon is going to take years (yes, I said years) then we need to slow our pace and figure out how to live life and keep Leo moving forward with eating.  

 Yesterday, we spent the day together at a family water trampoline park.  It was a lot of fun and we had a great time, but we had opted to leave Leo home with his nurse.  Leo was too little to participate in any of the activities.  This was a first for us.  Leaving Leo home from a family activity and not home with a parent but home with his nurse.  We totally trust his nurse and she had a fun day planned for Leo.  We needed to be ok leaving him home with her.  Leo would have been miserable with us. The heat alone would have made him uncomfortable.  I would love to be able to say, we won't do a family activity unless all of us can participate but that wouldn't be fair to the rest of the kids.  I know life isn't fair, but trust me when you have a brother who has multiple medical special needs your life needs a little crazy fun that doesn't involve g-tube feeds and seizures. 

Tomorrow, Jeremy and Tyler leave on a mission trip with our Jr. High Church Youth Group.  They will be gone 12 days and are headed up to Moose Factory in Ontario Canada.  They will be serving in a VBS, construction projects, street evangelism and church services.  Please pray for them as they travel and serve and for me and the other kids as we stay.  Please continue to pray for Leo and his eating and that we find some answers at tomorrow's appointment.  

The Magic Cup

My brain translated the face book post to read- 

If you buy this Renflo cup your child is guaranteed to drink an ounce like mine did.

The cup has an insert that only permits small amounts of liquid to come out at a time.  It doesn't matter how you are holding it, if it is tilted liquid will come out in small amounts.  No sucking skills required.  

 After reading the post, I thought if  Leo's friend, who also has WHS, can drink an ounce from this cup then so can Leo.  So I did what any respectable, loving mother, who is desperate, would do.  We drove to Whole Foods, who happens to sell these cups, and bought one.  

Looking at the above picture, one could be led to believe that Leo is actually drinking.  Don't be fooled, he loves the idea of drinking from a cup, but still does not have the ability to swallow in an organized manner.  Let me take that back, Leo will swallow if you are shooting a liquid, that is neither too thick nor too thin, into his mouth using a syringe (it must be a 3 cc syringe so that it fits perfectly into his mouth) as you repeat over and over again "Leo it is time to eat", "Quiet hands" interspersed with singing along with Barney as he visits the farm for the one millionth time.  When you aim said syringe into Leo's mouth, avoid hitting his front teeth as it will then splash back out at you.  If your aim is good, you may just get 2 ounces in over the session. We repeat this process over and over and over again for 17 minutes, 5-8 times a day.  

Now, let me tell you what the face book post really said- "I found this training cup at a second hand store and **** liked it!! Unlike a regular sippy with a valve, it's an open cup with tiny openings all around so wherever they attempt to drink they are successful! He drank a few oz the first time! He is very reluctant to try new thing...so I wanted to pass it along"

Why do we do it to ourselves, the comparing.  Just because another child can drink from this cup doesn't mean that Leo will be able to do it.  But I had to try.  I really wanted to believe that there was a "magic" cup that would suddenly allow Leo to swallow successfully.  Yes, I do believe that some day Leo will be able to successfully drink from this cup, but unfortunately there is no magic here.  All that we can do is persistently repeat the above process over and over until Leo's mouth muscles become stronger, his brain signals figure out what swallow means, and with lots of hard work someday swallowing will just happen automatically.  You see the child in the face book post never lost his ability to swallow.  He can suck successfully from a bottle.  He is ready for this cup.  Leo is not ready.  Two different boys, they have the same syndrome, but it is not fair to them or to ourselves to compare them.  Comparing only causes worry and stress and unplanned trips to Whole Foods.  

So, next time you sit and eat a meal.  Think about swallowing and say a prayer that Leo's swallowing skills will become more automatic and that his volume will increase and that we will have the stamina and persistence to keep on practicing everyday.

smile emotico

Progress

We are currently into our second week of eating at home.  

The first week was horrible, stressful and felt like we had wasted our time at the feeding clinic.

I was feeling very discouraged.

I think I can safely say that Leo has turned a corner. 

Leo's nurse, Sierra, is doing a great job feeding Leo orally.  

It is a challenge to her to see how much she can get in during a session.

Really, it is a sorta competition among us to see who can get in the most.

Leo has stopped a lot of his fighting.  His volume is slowly going up.

He is back to taking what he was during our last week at Hershey, 

which is about 1 to 2 ounces a session.

We return to Hershey on Monday.  

Our goal is no weight lose.

Weight gain would be a bonus.  

Thank you for praying. Please continue praying that Leo increases his volume during a session.

Also pray that Leo's mouth muscles become stronger and better coordinated so that he can maneuver and swallow baby food.  He is currently only able to swallow thin liquids.

Eating is hard work.  

Playing with Ben is fun.