Wednesday, July 15, 2015

Happy Birthday Jonathan!

Six years ago.... We saw a picture of a little boy named Li Futing.  He stole our hearts.  We knew he was our son.

Six years ago... He turned 3 and we celebrated his birthday here in the USA while he was waiting for us in China.

At that same time, we were able to have a cake delivered to him in China.  
Happy 3rd Birthday, Jonathan.

Today, we celebrate Jonathan's 9th Birthday.  
He is an amazing young man.  We are so proud of him.
He plays chess, swims, plays basketball, and sees no reason
why he can't play flag football next season.

He is perpetually optimistic.

And, he is growing in his understanding of God.
He loves church and takes his Sunday School lessons there

Happy 9th Birthday, Jonathan!

We are so proud of you, and we can't imagine our
family without you!

We also celebrated Mom -mom's Birthday!  
We love you, Mom-mom

Thursday, July 2, 2015

No Regrets

When Jeremy and I explored the Hershey Feeding Program a few months ago, we had no idea how successful Leo would or wouldn't be.  We knew there was not a money back guarantee, but we both felt we needed to give Leo this opportunity and try it.  We didn't want to look back in five years and say what if.  We have no regrets about the amount of time, energy, and resources we have put into Leo learning to eat the last 8 weeks. We learned so much from the therapists at Hershey and it really has catapulted Leo's eating full force ahead.  We have invested too much in Leo learning to eat to go back now.

All that to say, after our appointment at CHOP with a specialist who we trust and respect and who "gets" Leo, we are needing to change our feeding path.  We have tried the "Hershey" way for 8 weeks and although it has helped and worked for hundreds of kiddos, it is not working for Leo.  There are some other physical issues like constipation and reflux which are being caused by the tiniest amounts of a certain formula that we have had to stop and get Leo back to where he physically was before he started eating by mouth.

The reality is that Leo is considered a medically fragile kiddo.  He has had surgery that has altered his stomach, affecting the way he digests food.  His little body, fights change and immediately goes into a defensive position when any change good or bad is introduced.  Leo looks great and is doing so well in so many other areas it is easy to forget just how fragile he is especially when it comes to this thing called digesting food.

We are still doing 2-3 daily eating sessions with Leo.  They look different then what we had been doing, but Leo is enjoying them more and is much more compliant.  The downside is the intake volume is not there during these sessions, but we are trusting that given time and practice the volume will come

I will admit that I am actually somewhat relieved.  Life feeding Leo was stressful and wasn't enjoyable for any of us, especially Leo.  We are in the process of formulating new strategies to help Leo.  This isn't the end of Leo's eating career.  I still believe that is it possible for him to be g-tube free some day.  As with any journey, you sometimes need to make a u-turn or take a detour, Leo's eating journey is no different.  We covet your prayers as we continue on this journey. We are so thankful for all of you that pray daily for Leo and we ask that you continue to pray for Leo as he continues to learn to eat.

Tuesday, June 30, 2015

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.