Thursday, April 30, 2015

Happy Birthday!

Happy Birthday, Leo!   5 years ago you were born.  You were loved.  Your birthmom loved/loves you deeply.  We don't know what the doctors told her when you were born, but we know from your many diagnosis that were given at birth they most likely painted a bleak picture.  She loved you with her whole heart and I know she still loves you and carries a piece of you in her heart to this day.

Four years ago this month we received a call about this little boy who needed a family.  Life expectancy was bleak.  Diagnosis were overwhelming, but God.  God knew you belonged in our family.  Your medical needs have stretched us physically and emotionally, but your determination has inspired us.  Your personality is contagious.  You have taught me so much.  God has used you to grow me spiritually.

Leo, you have defied the odds in your first five years of life.  I know God has plans for you.  Plans to give you a hope and a future.  Today we celebrate you Leo!  We celebrate your life and we look to the future knowing that God goes before us preparing the way.

Happy 5th Birthday, Leo!

Sunday, April 26, 2015


Why, does Leo need to go to an intensive program to learn to eat?  When Leo entered our lives four years ago he was one years old and being fed via a NG-tube.  Basically an NG  tube  is inserted through the nostril, down the esophagus, and into the stomach.  Leo was born with a cleft lip and a cleft palate.  He could not suck efficiently. His lip had already been repaired, and within 2 months of coming to live with us his palate was repaired.  The palate surgery was successful but due to trauma in his mouth, Leo had breathing complications.  After the palate surgery, it was nearly impossible to get Leo to open his mouth.  

We had a wonderful feeding therapist who worked with Leo weekly, but due to all the trauma of the surgery Leo was an extremely resistant participant in this feeding process.  When you don't eat, you lose the ability to know how to do it.  Eventually we made the decision to have a g-tube placed.  Leo has had consistent feeding therapy with excellent therapists.  He has made slow progress in the area of eating.  

The thing with Leo is if he is learning a new ability, all other progress stops in other areas.  So when Leo was learning to crawl or walk, he made no progress in feeding or occupational therapy.  Leo has come so far in so many areas of his development with the exception of feeding.  Leo's progress in eating was always been slow.  In the last 6 months, Leo discovered his brothers ate food.  His brothers are his role model.  Whatever they do he will attempt to do.   A light bulb went off that if his brothers were doing this eating thing then perhaps he should too.  Leo now lets things in his mouth.  He wants to eat.  He will pretend to eat.  He actually gets food into his mouth.  The problem is that once it is in his mouth he doesn't know how to move it to the back of his mouth and swallow.  So everything comes right back out of his mouth.  Leo will sit at the dinner table and "pretend" to eat, putting a spoon up to his mouth.  Leo is now a walking choking hazard as he has the desire to eat, but doesn't grasp the fact that he doesn't know how to eat.  

Leo has had numerous surgeries in his short life.  He has however been stable for the last year since his heart surgery.  No surgeries are on the horizon.  He has been seizure free for the last 4 months.  All of his doctors (he has 8 plus specialists that follow him) and therapists agree that the time has come for Leo to learn to eat and that an intensive program is the way to go.   

Now is the time.  Homeschooling work is concluding.  Jeremy will be finishing the semester from teaching.  He will be teaching a summer session but will have some flexibility with his schedule to be home more.  Leo is ready.  Leo wants to learn to eat.  We know once a week therapy is not cutting it.  Leo needs feeding boot camp or as a friends daughter called it "chewing camp".  We need to be able to focus on eating with no interruptions of life.  Hershey has an intensive program that has come recommended to us from various doctors and therapists.  They believe Leo can learn to eat.  They also have the ability to safely  decrease Leo's g-tube feeds. (Leo has never felt hungry) They also can be more daring in what they offer him to eat as I am always on chocking hazard alert.

Will Leo ever lose the tube?

Our prayer is that enough progress will be made during the intensive program that Leo will be able to eat by mouth and that his g-tube feeds will be considerably decreased if not stopped all together.  Leo takes a few medicines and the reality is that it will take time for him to be able to take meds by mouth.  We would love to someday be g-tube free. 

 It is our goal that someday Leo will be able to eat watermelon and not just pretend to eat it.  

Wednesday, April 22, 2015


Leo and I leave in a week and a half to start the feeding program at Hershey. We will be there a minimum of 3 weeks, maximum of 5. It will be a stretching experience for our entire family.

This time last year Leo had major open heart surgery that resulted in a second hospitalization and basically the end of April and all of May were a wash as we were in and out of the hospital. Friends and family stepped in and provided meals, play dates and prayer support. Apparently, I think Leo, hospitals and the month of May go together.

This time away will be like no other as it will be just me and Leo. I don't think Jeremy and I have ever been separated like this in our 18 years of marriage. We went to China together to bring Jonathan home. Last May, when Leo had surgery we were able to be at the hospital together a lot of the time. The thought of having this latest adventure without him by my side makes me homesick and I haven't even left. The thought of parenting from afar and making sure all the plates on the home front keep spinning seems overwhelming. Poster board weekly calendars are being made with everyone's schedule on them so that nothing is missed or forgotten. The idea of sacrificing family life for the sake of one was not a decision made lightly. We as a family daily invest in each other's lives and we all want to see Leo succeed. Each of our kids is willing to let Leo and I "go away" for a time if it means Leo learning to eat by mouth.

Yes, I am overwhelmed at the thought of being away from my family. We do life best together. But I am also overwhelmed by friends and family who are once again stepping in and helping to carry the load. Mom-mom, my mom, will be moving in during the week. She will be here while Jeremy works and she will home school the middle 3 boys and basically run the house. Friends have offered play dates and to be available for whatever we need during this time. A friend has organized a meal train so that Mom-mom doesn't have the pressure of cooking each night. Yes, tonight I am overwhelmed, overwhelmed with gratitude that friends care. They care enough about us, they also want to see Leo learn to eat, they are willing to walk along side us and make life a little easier. Oh, how God has blessed us and that is the best reason to be overwhelmed.

 He wants to eat so badly.  He just doesn't know how to chew and swallow.

if anyone feels led my friend Melissa set up a mealtrain to help with meals while we are away. the password is password.

Friday, April 10, 2015

Get up and eat, for the journey is too much for you... (I Kings 9:7)

Ok, I know that's a silly choice of Bible verse for this blog post. But it was the first one to jump into my head and I'm going to roll with it!

Today we got a phone call. A really, really good phone call.

Our insurance has approved Leo's treatment by the Penn State Feeding Clinic in Hershey PA.

Hooray!  Leo is (as most of our friends know) entirely G-tube fed. He has had what's known as an "oral aversion" his entire life, and consequently he never developed all the coordination and reflexes necessary to chew and swallow.

The irony here is of course that he looks like the sort of kid who should really enjoy food. He's happy, a bit pudgy, and he likes to pretend to eat.   The food goes up to his lips. He makes a smacking sound and an appropriate looking mess ends up on his hands and face and the table. But nothing actually gets eaten. Nothing is ingested.

So today's good news is that he is approved for 3 to 5 weeks of feeding therapy at this specialty clinic, starting May 4th.  This could mean that Leo could, at last, transition away from being G-tube fed and get all the benefits, physical and social, of eating table food.  That's not to mention the fact that I can only imaging that eating real food must (must!) be more enjoyable than getting food through a tube.  So there's a definite gain in the quality of his little life on the horizon here.

So, 3 to 5 weeks.  In Hershey.

That's going to be something else.... something that we will ask you to join us in prayer for.   Kim will be with Leo while Mom-mom and I hold down the fort here with everyone else. As much as I love my mother in-law (I mean it, zero sarcasm there) I will miss Kim dreadfully during these weeks, and the rest of children will too.

Leo too, will need your prayers.  The little guy will experience the discomfort of hunger for (possibly) the first time in his life.  That won't be fun for him.

We also have accommodations to pray about.  Please pray that Kim and Leo will be permitted to stay at the nearby Ronald McDonald house ... otherwise we'll end up spending a small fortune on their hotel stay!

So, that's the great news for the day.  Thank you, friends, for praying.  God is good and He answers prayer!