Back to Life

Well, we’ve been home now for three and a half weeks now, and life is good!  Transitioning home has been harder than I expected, but Gavin has managed to do well with his eating through it all.  I am loving being at home with Gavin every day, although I do miss the adult working world from time to time!  Our days seem to be a never ending battle of preparing food, weighing food, getting Gavin in the highchair, doing exercises, timer time, weighing food, and cleaning up…and then starting it all over again in a couple of hours!  The hard part is coordinating his naps.  Gavin actually does take naps at home without requiring a 44 mile drive…most daysJ.  The problem is that he sits in his bed for an hour before actually falling asleep.  Once he’s out, Gavin could sleep for three hours!  This makes getting a snack in between lunch and dinner a bit of a challenge.  We used to just hook him up to his pump for a feeding, but I refuse to go back to that option!!  It is funny though how tube feeding suddenly seems like such an easy alternative!  I have found myself sometimes missing the ease of tube feeding Gavin in his chair and sitting there for the thirty minutes as we play and laugh.  It took no effort…just time.  Now, time and effort are involved in each meal, which gets a little exhausting.  Don’t get me wrong, I wouldn’t change this for the world!!!!  It is amazing to have four successful meals with Gavin per day!  I don’t understand how he isn’t just as exhausted as I am by the time naptime comes around!!

I wouldn’t say that Gavin has regressed too much since we’ve been home, but we did have to take a step backwards to very smooth purees.  I’m not sure if Gavin was fighting off a bug or just extra sensitive with the transition home, but we had three days our first week back where he threw up at least once a day on textured foods.  After washing his highchair for the fifth time, I decided enough was enough and we pureed everything down to super smooth and slippery.  I’ve been very gradual in introducing texture back into his meals.  We started back up with gritty peaches and pears, and then moved back up to fork mashed NutriGrain bars mixed with applesauce and fork mashed bananas.  Last night, we finally gave him some gritty pasta again, and so far so good!!!  Gavin has continued to do really well with solid table food but still consistently inconsistent with how much he will accept on his own.  He has discovered peanut M&M’s and after a few failed trials is now able to successfully chew and swallow them!

There have been days that we’ve been out and unable to go back home for lunch to feed Gavin, so I’ve brought his lunchbox of pureed foods with us!  He’s actually done really well each time out!!  I have not been bringing the iPad to have a movie for the meal, but we still set a timer to set the expectation that it is time to eat.  That seems to be enough to get Gavin to focus and accept his bites.  The excitement of being in a busy restaurant is usually enough to keep Gavin distracted and entertained. 

Here is a fun list of the Top 10 Things about Being Home:

10. Cooking in our own kitchen fully equipped with a Blendtec Blender and food processor!  I am able to puree our dinners and freeze some to build up a good food supply for Gavin.

9.  We got to be home to celebrate Easter with my parents!

8.  Going out for ice cream with Gavin and having him eat a couple of bites!

7.  Gavin has so much energy and is turning into such a big boyJ…it’s hard to believe he’ll be three in a few weeks!!!

6.  Gavin has tried a few new tricks to throw me off during our feeding sessions (blowing through his straw into his milk to create bubbles, continued throwing his cup once in a while, blocking his face for exercises…), but I have stuck to the procedure, and he has stayed on course with taking his bites!  I have successfully reinforced that I am boss at homeJ.

5. Catching up with friends.  From parties to play dates to visiting daycare, it has been so nice to have a little bit of “normal” time with all of our friends! 

4.  Gavin has gained a pound since we’ve been back!  For whatever reason, he had plateaued at 26 pounds and seemed destined to stay there forever!!!  At our last doctor’s appointment he was 27.4 pounds!!!

3.  Every night for the past three weeks, Gavin has said, “We’re home! J” as he climbs into his bed.  He’s happy to be home!

2.  Eric, Gavin, and I are all together again!!!

1.  We have not tubed Gavin any source of nutrition since we got home!!!!  He has consumed everything by mouth since we got home!!!  We use to use a banana stand to hang Gavin’s tubes so they would dry.  This banana stand is once again finally used for bananas!!!!  Better yet, Gavin actually eats these bananasJ.

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! 

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!!!! 

Week 8, Day 2

We made it through our last Tuesday!!  Gavin continued to do as well as can be expected for week 8.  He had two little meltdowns where he starting crying for daddyL.  Poor kid.  I am happy to see him doing so well with texture grading!!  He was able to handle gritty chicken pasta primavera today without a single shutter, but he struggled a little over carrots.  He can do them pureed, but they tend to scare Gavin a little when they scatter in the mouth as solid pieces. 

I got some sad news today.  Our amazing therapist back at home will not be able to see Gavin anymore due to health issues.  Tiffany is a miracle worker, and I am so sad that she is unable to continue her work at this time.  We are lucky she lives close to us so we can remain friends!

Sorry for the short entry…I’m exhausted!!!  Three more daysJ.