We Made It...Eight Weeks!!

We did it!  Eight long wonderful weeks of intensive feeding therapy are now behind us!!!  It has taken me a few days to find time to write this and to wrap my head around all the emotion and exhaustion we are feeling.  Someone needs to pinch me and wake me up from this dreamJ.  I am sitting here at our kitchen table while Gavin sleeps upstairs in his bed!  It is so nice and comforting to be home.  We have been through SO many ups and down these past 2 1/2 (almost three!) years with Gavin on our feeding journey.  I cannot believe how far Gavin has come and how well he has done throughout this long process!  At the end of the day, Eric and I would do anything for that little guy, and I am so happy we were able to find such an amazing program to help him.

The last couple days in Indiana were a blur!  It was so hard to say goodbye to everyone at the clinic.  I do not know how I could ever thank all the therapists, doctors, and staff enough for changing our little boy’s life.  Eating is supposed to be natural and an event that brings pleasure and satisfaction.  If you gag and vomit after each bite, how could eating be an enjoyable process for anyone?  The people at St. Mary’s feeding clinic were able to help Gavin learn the basic skills of using his tongue to keep the food on the side of his mouth and chew with his back teeth.  Slowly, we have watched Gavin’s skills improve and his confidence and acceptance to food go up.  During our baseline nightmare session Day 1, I was given peaches to feed Gavin…yikes, what a scary experience that was!  Now, Gavin LOVES peaches!  He would be happy if peaches were included in every mealJ.  We have had so many successes.  The engineer in me created this table to compare where we were Week 1 to our progress at Week 8.

Week 1	Week 8
Gavin ate one meal a day that consisted of yogurt and Pediasure.  The average oral intake per day was 5oz.	Gavin eats 4-5 meals a day with a wide variety of foods in his diet.  The average oral intake per day is 33oz and increasing!
Tubed 22oz of Pediasure per day.	Tubed 0oz of Pediasure per day!
Main source of nutrition was from Peidasure.	Pediasure replaced with whole milk and a more balanced diet (with a daily multi-vitamin!)
Gavin would gnaw at a banana but spit out any actual bites that made it into his mouth.	Gavin eats decent size bites of banana in his meals!
Gavin blocked every bite with the back of his tongue.	Gavin accepts each bite allowing the spoon to go directly into his mouth without angling up to get over his tongue!
Gavin would gag and vomit on textured foods.	Gavin is accepting gritty foods!
I cried because I was scared that Gavin would never eat and thought he would hate me forever because of this process.	I cried saying goodbye not knowing how to thank everyone for performing such a miracle that allows Gavin to eat!!  I am happy to say my tears were not for fear of going home, but because I had hope for the futureJ.

I continued to feed Gavin most sessions alone in the room the last two days, and he continued to challenge me!  Eight weeks is a long time to push a little guy, but I feel like I personally got the most out of our eight weeks of therapy in the last two weeks.  I need to know what to do when Monster Gavin wakes up and tests me, and that’s what he did at the end there!  I was given a write up of our protocol that we follow at each feeding session.  It was so helpful to actually see it written down and go over it outside of the feeding session.  At each meal, I follow the following steps:

1.       Present the plate and prompt Gavin to take his bite.  Gavin is given about five seconds to kick into gear and take his bites on his own.

2.       If Gavin is not feeling especially independent at the moment, I pick up the spoon, “scoop and scrape” and offer the spoon to Gavin to take his bites.  Allow another few seconds to let Gavin take control of the bite.

3.       If Gavin does not take the spoon, I prompt him to take his bite.

4.       Hopefully Gavin will take the bite at this time, but that does not always happen.  After giving him a few seconds and prompting him again to take his bite, I count slowly to three.

5.       If I reach that dreaded number three without a successful bite, then I immediately move to the back of a little spoon, the “helper spoon.”  I load a small amount of food to the back of this spoon and again present the bite and count to three as needed.

6.       If Gavin still does not accept the bite, things get a little ugly.  I use the head lock and put a small taste of food in Gavin’s mouth.

7.       Move on…after a small break to hopefully regroup, start at Step 1 and hope for a successful bite!

The important part of this process is to stay positive and be his helper through this process.  Gavin does a good job of recovering after challenging bites and getting back on track relatively quickly.  Neither of us like to go to Step 6, and thankfully that has only happened a handful of times.  It is a very structured way of eating, but it really works for Gavin!!!

While I am not a feeding therapist or a doctor, and everything that I have described in this blog is simply my understanding and interpretation of what we have learned in the past eight weeks, I do know that this process works for Gavin and so many other kids.  Each child and their condition leading to feeding disorders are different, so I cannot say this is THE cure for feeding struggles, but I truly believe this is the best model out there to provide your child with safe parameters to allow them to be successful confident eaters.  Assuming there is nothing physically preventing a child from eating, the consistent procedure limits behavioral outbursts and establishes expectations at the table.  Again, it is a long process and takes a ridiculous amount of patience, but Gavin should be eating gag free and independently by kindergarten!!  That is just two years away, so I’m happyJ.

The clinic had a little graduation ceremony for Gavin on Friday!!!  All of the therapists and staff were there to congratulate Gavin and send us off.  They got Gavin a bag of goodies…toys for mealtimes, a new movie, a carrot necklace full of bubbles, and a gift certificate to Chuck-E-Cheese’s!!!  It was so sweet of them and meant so much to Gavin and I.  I told Gavin he did such a good job taking his bites that they told us to go home!  Gavin hasn’t looked back since that moment!!  He has reminded me many times that he’s all done there and we are going homeJ.

 

We also had a long week of saying goodbye to everyone at the Clown House.  We have formed so many special friendships there with other residents, volunteers, and staff; it was hard to leave all of them.  From meeting Jennifer and other moms going through their own feeding journeys to the parents of babies in the NICU, we have met some amazing people.  I wish them all the best and thank them for their friendship during this challenging time. 

Gavin got a chance to walk in Ronald McDonald’s shoes before we left!!!  They are quite the shoes to fill!  Gavin is going to miss coming back to the Clown House for playtime with Mr. Jeremy, Ms. Theresa, and Ms. Katie who all work downstairs.  The three of them have been so supportive throughout our stay, and have been there to celebrate the high points and supported us through the low points.  The Ronald McDonald House will always have a special place in our hearts, and we hope to do everything we can to pay it forward to them in the future.

Friday we were finally able to meet sweet little baby Alex!!  Lacy and Andrew took us over to the NICU, and I got to go in to hold the little guy.  He is adorable!!!  Gavin even got to meet him at the door!  Thankfully Lacy and Andrew are finally home as well with Alex!!  It’s been a long two months for them, and I am happy they can finally start life as parents outside of the NICUJ.  Good luck guys!

                                     

Saturday was the best day!  Gavin and I said goodbye to Evansville, IN and headed to Memphis to pick up Eric (he flew in to finish the drive with us)!  I packed seven perfectly portioned and measured pureed meals for Gavin and we were on our way!!  We stopped twice on our way to feed Gavin, which was challenging, but he did well.  It was so nice to finally make it to Memphis and Eric!  We had a nice dinner at the Hard Rock Café and then kept on going to Little Rock.  Then, finally, we made it home on Sunday evening!!!  Our house was such a happy sight.  We had so many good surprises waiting for us at home!  My parents had made a welcome home sign complete with balloons and wineJ.  They also filled our fridge with dinner, fruits, and vegetables!!!  I received a nice card and gift certificate to a day spa from my cousins Laurie and Lisa…thank you guys!!!  I think I will go this SaturdayJ.  As much as I love being with Gavin 24/7, I will enjoy the time to myself!  We also received a fun bouquet of balloons from The Russell’s and my grandma!  Thank you guys!!!  Gavin LOVED them!!

                           

So, now we are home and ready to continue this journey on our own.  It is not going to be easy, but we are so grateful for how far we have come!  I will be keeping up with this blog hopefully on a weekly basis.  Gavin still has a couple years of therapy and structured feeding sessions in front of him before he actually eats willingly and independently.  I want him to hear the final happy ending when he reads this many years from now!  Thank you all again for your support, love, and prayers through the past eight weeks.  We could not have made it without all of you!