Week 8, Day 3

I think Gavin and I have both hit the wall!  We struggled through the first two sessions today.  We went through a cycle of blocked bites, swings at my face, and cups being thrown across the room…it was REAL fun!  In response, I put Gavin in a headlock twice to take his bite, learned a new phrase, “quiet hands,” to positively encourage Gavin to keep his hands down and not hit, and took control as keeper of the cup!  In a nutshell, the advice I've been given is to use positive but firm words to keep things pleasant and swift actions to show you mean business.  Hopefully this will keep Monster Gavin tamed…although, I’m sure we will have many fun encounters down the road! 

At lunch, both Gavin and I were told to go take a nap!  If only I could… Our nap routine here has reverted back to driving countless miles to induce sleep.  I know, not a great habit to start, but the sacrifices I’ll make to come home with a little eater go on and on!  After one day of driving for two hours and almost 100 miles with a wide awake little boy the whole time, I started tracking the miles thinking I needed to set some limits!  On a good day, we can drive 1.3 miles before Gavin’s asleep, and on a bad day it’s more like 44 miles.  Today he fell asleep in 22 miles, so that wasn’t horrible!  At least he napped!!  I on the other hand made it back to the Clown House for a quick bite to eat with some coffee and we were back for rounds three and four at the clinic.

All of the therapists fully acknowledge that Gavin I have reached the end, and they are very sweet in trying to help encourage us along.  Although, it does seem to be quite humorous to hear the random outbursts from Gavin that have started to pop up during the meals.  Emily says the best explanation she can give for these moments is just Gavin dealing with life!  His screams do not seem to be food related, just Gavin getting bored and trying to make things interesting.  From my prospective, there’s a circus going on around us…how could he possibly be bored?!  In the interest of my sanity, Chris stayed in the room with us for the third session to help entertain Gavin.  Then, I got a huge relief the last session when Cara fed Gavin!!!  If only I could take them home with meJ.

Dr. Powell answered a million of my questions after the last session, which has helped to settle my nerves a little about going home to the real world.  We talked about what to do when Gavin gets sick and doesn’t have an appetite, specifically with how we should handle tube feedings if needed.  Her advice was to definitely use the tube throughout the day when he’s sick.  She mentioned that they recommend every child who has a button make it through one bad sickness without needing to resort to tube feeding before removing the button.  As far as solid foods, she said to go back to smooth purees and then work your way back up in texture as he gets better.  The tricky part will be to know when we are ready to transition to new textures and stay on track with good habits.  Dr. Powell was so nice and assured me that they know real life is different from the ideal setting of the clinic.  She warned me that my purpose in life will be feeding Gavin for a while, and it’s important to know that it’s okay to modify the routine slightly as needed to accommodate life.  Dr. Powell also promised that they are not going to just drop us when we walk out the door on Friday!  Thankfully they will do their best to support us from afar.  The hardest part for me is going to be not pushing Gavin too quickly through texture grading to solid table foods.  I am so anxious for him to eat like any other three year old, but I understand I can do more harm by giving Gavin foods and textures he is not ready for.  Patience is still the theme of this long journey.

While we are SO excited to get back home, we are really going to miss all to people we have met during our eight week stay.  All of the staff and volunteers here at the Clown House are so supportive and friendly.  I have been so touched by the kindness of so many strangers, and I am very blessed to have met all of them.  In the past two months, Gavin has really come out of his shell and become such an expressive, energetic little boy (probably thanks to all the real food he is now eatingJ)!  He has loved having a constant stream of people and kids at the Clown House.  I don’t know who Gavin is going to miss more...Jeremy, the executive director of the RMH, or Lacy.  Every time we come back to the house, Gavin asks if he can play with Mr. Jeremy!  Playing with Mr. Jeremy became a reward after good sessions with no spitting.  He is quite the playmateJ.  Lacy has been the one constant friend and resident of the house throughout our stay.  Gavin has informed her that she is going to miss him…but I think he was trying to tell Lacy that he is going to miss her!  We are very excited to hopefully meet Baby Alex on Friday and send Lacy and Andrew home!!!  We are also going to miss all the amazing therapist, doctors, and staff at the clinic.  Together they have changed Gavin’s life, and there is nothing I could ever say or do to fully show them my appreciation for that. 

Gavin finally got a sticker/coloring book from Grammy and Grampy in the mail!!  Sorry guys, from the markings on the envelope it looks like it’s had quite the tour of IndianaJ.  Gavin was so excited to get it in the mail and loves the book!!  Thank you!!!

TWO MORE DAYS!!!!