Weekend 4 & Week 5, Day 1

Good news…we remained healthy all weekend and have returned to therapy!!  We had such a nice weekend in Indianapolis with Eric!  Saturday morning we woke up to a sweet little voice saying, “Mommy, is Daddy here?”  He was practically crying with excitement when Eric responded!!  He was one happy little boy….and dadJ.  It was a relatively nice day, so we were able to make it to the zoo.  Gavin had a great time seeing the penguins and polar bears that we do not have in the tropical Houston zoo.  It is amazing how weather plays such a factor in Gavin’s livelihood with his kidney condition.  Our trips to the zoo are usually on hot and humid days.  It is amazing to see Gavin really come to life with excitement at the zoo in a cooler climate.  He actually likes being outside!! 

Most of our time was still focused around feeding Gavin, so we didn’t go too far from the hotel.  The good news was that I was able to feed him a few times at restaurants and he did pretty well.  Our strict feeding regiment is a little tricky to follow in public as it is easy to give in to Gavin’s innocent demands to avoid a scene.  The problem is that just like “giving a mouse a cookie” (sorry, that was our bedtime bookJ) he quickly figures out that I am not going to stand my ground and he gains control of the feeding session…we all know where that gets us!  So, we were able to still be successful by embracing our surroundings and using whatever was around us as a distraction/reward.  I wish we could have a couple sessions a week out at a restaurant to get a few more pointers on how our structured perfect feeding world is possible in the chaos of everyday life…maybe I can work on that towards in the next few weeks!  I talked to Dr. Clawson a little about it today, and her advice was to use small toys, but to not let him hold them.  The less of a power struggle there is in removing a distraction for the bite, the better.

We dropped Eric off at the airport just after lunch on Sunday, and poor Gavin did everything he could to hold back tearsL.  It broke our hearts to have to break up our family for another week, but we know this is the best thing for all of us in the long run.  Eric will be coming to Evansville this coming weekend and staying for the whole week!!!  He will be working from here, but that is okay…so are Gavin and I!  It will be good though for him to go to some of the sessions to learn how to feed Gavin. 

The Clown House opened back up today after a deep cleaning, and the clinic opened at 10:00 for our second session.  They thoroughly wiped everything, including the walls, three times with bleach!  It smells a little like a swimming pool in there, but as long as all the stomach bugs are gone, I’m happy.  Gavin was not so thrilled to be back at the clinic at first, but he slowly came around.  The most exciting part was today’s weigh in!  The check his height and weight every Monday and Friday, and so far, he has not gained any.  Well, he lost a little at first but then gained it back last week.  Since our last weigh in, Gavin gained 9 oz!!!  We managed that all on our own out in the real world without weighing every ounce that Gavin consumes.  It was a nice feeling, but still a little nerve racking for me!  The engineer in me likes it when life can fit into a spreadsheetJ.  Looks like we can do just fine without it though!  Since Gavin has done so well with chewing so far, we are graduating to some new chewing stretches.  When he uses the tri-chew to practice consecutive chews with his back teeth, we will have him chew once and then touch the tri-chew with his tongue.  This will help train him to use his tongue while he chews to move the food back to his back teeth.  We even stepped up the chewing practice by using a decent size bite of a Chewy granola bar.  Gavin did great!!  No gagging or difficulties.  He was able to follow cues to move the food from the left side to the right side of his mouth and use his tongue to keep the food in the back side of his mouth by his teeth.  It was so cute to see how proud he was of himselfJ.

We are also working more on self-feeding.  Gavin is trilled to have the independence and control over the meal, but again, “when you give a mouse a cookie…”!  To facilitate self-feeding, Gavin is given a plate that was divided into thirds forming the “circle” that he eats in.  Gavin picks the spoon up off the plate, scraping the bottom of the spoon, and then takes his bite, cleaning the spoon.  The TV is turned off completely while Gavin takes his bite in the “circle” and takes his drink.  Then, as the reward, he gets to watch TV for about 20 seconds before the next round of bites.  This is the first step of slowly phasing out the TV.  It is amazing to see how excited Gavin is to eat with this method!  For the first half of the meal, he was doing all the work, it was great!!  Then, it was my turn to help prompt him to take his bites and drinks, and everything immediately fell apart.  Thankfully, we really didn’t see Monster Gavin, but you could sense his presence!  Eventually we had to go back to me feeding Gavin, but we were able to finish the meal relatively well.  For our first try with the “circle plate,” I’d say Gavin did pretty well!  We have more time to perfect it, so we’ll get there!!

The best part of our day was arriving back at the Ronald McDonald House to fine six packages!!!  Again, we are the most loved people out thereJ.  Gavin’s Grammy and Grampy sent a book and a box of bunny crackers for our good little chewer!  Gavin was very excited to eat them!  

Our family friends Carey and Eileen sent Gavin a cute car name plate for the door and a “build a road track” set with two cars!!  Gavin loved them!! 

Eric’s brother Adam, Katie, Ruth, and Ben sent us a little winter survival kit and some construction toys for Gavin…Ruth the lip gloss is perfectJ.  

My Uncle Jeff, Carolyn, Jack, John, and their dog Cody sent an endless care package of toys, food, Gavin’s own Cody #2 (complete with food for the trip!), Jeff’s old UCLA wrist bands for the times when I need to “put up my dukes” in our feeding sessionsJ.  Gavin wore the sunglasses and heart bubble necklace all night…even in the bath!  

We also got an endless package of goodies from my high school friends Betsy, Meridith, Emily, and Jordana!  You guys are the best friends I could ever ask forJ  They included everything we use to have for a girls night back in high school…magazines, gummy bears and M&M’s, nail polish, and our favorite movie classics: Grease, Footloose, and Clueless!!!  Gavin even got some crayons and a coloring book!  

Thank you all so so much for everything.  We are halfway there, and we are ready to go strong to the end.  Thank you for all of your support and fun distractionsJ