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.

Week 8, Day 1

What a great way to start out our last week…celebrating four good sessions at Chuck-E-Cheese’s!!!  I was so proud of Gavin’s accomplishment, we had to buy a t-shirtJ.  I was especially shocked when my timid little boy jumped up and took off running when he saw the mouse come out for his hourly appearance!  Gavin ran right up to him waving the whole way and gave him a high five.  I guess that’s a sign we’ve spent too much time there, but it’s worth it! 

Gavin and I were alone in the room again today.  Last week I had an earpiece in my ear with the therapist on the other end from the next room in case I needed a little coaching through the rough moments.  Unfortunately, the wire to the earpiece is loose, and there’s a lot of static on my end making it hard to focus in an already challenging situation.  We opted not to use the earpiece today to keep me sane!  I was truly on my own, and thankfully did not require any rescuing!!  Gavin seems to find a new way to test me each week…last week he started randomly screaming and this week he has come up with what he calls a “new game” where he drinks his three sips of milk as he is instructed and then throws the cup across the room.  I’m told this is typical toddler behavior and he is just looking for a reaction from me.  While screaming is annoying, it isn’t as disruptive to a feeding session as throwing cups.  That one needs to be addressed a little more head on if it continues.  I’m hoping he forgets about that one soon!

Spring has FINALLY found Evansville, IN!!!!  Gavin and I walked back after our 1:00 session, changed into short sleeve shirts, and went out in the courtyard here at the Clown House for Gavin to ride their bike!  It was so nice to be outside and not have to be bundled up in snow suits.  It looks like the rest of the week will be nice tooJ.

Gavin and I both got such nice cards from Jennifer and Noah today!!  Noah sent Gavin some stickers that he loves!  We will take them to the clinic tomorrow for after each session.  Thank you guys!!  It is so nice to hear from you.  I just wish we lived closer so we could see each other and watch the boys play!  

Weekend 7

We made it through our last weekend here!!!  We had a nice low key weekend trying to keep up with all the feedings.  Gavin had a wonderful day as far as feeding is concerned on Saturday!  He had 37.4oz of food/milk in only four feeding sessions!!!  Our record volume of 38oz on Friday was with five meals.  I’m happy to see that Gavin can handle the same volume in fewer meal…for my sake!  It is exhausting to feed him so many times a day in such a rigid structured fashion.  With four meals in a day I will hopefully have time to make it to the grocery store once in a while. 

I spent most of the weekend in the kitchen again.  Today, it so nice because the volunteers who came to make dinner saw that it was a little challenging for me to cook and entertain Gavin at the same time.  They arrived at 2:00, and had plenty of time before dinner, so they took turns reading books to Gavin and playing with him.  It was a lifesaver!!  Gavin giggled all day longJ.

I have a feeling this week is going to fly by!!  We leave Saturday morning (after feeding Gavin of course) and head to Memphis to pick up Eric…he’s flying in around lunchtime.  We will drive to Little Rock that night and then finally back home on Sunday!!!!  I miss home.  I miss Eric.  It will be so good to be back to normal life again…well, our new normal with feeding Gavin real food!!  Eric ordered us a Blentec Blinder that they use here at the clinic.  It is amazing.  In 90 seconds, it can puree anything down to a smooth puree!  Gavin has done well with the increased texture of some foods, but it is a long process.  We typically have one or two gritty foods along with a smooth puree in each meal.  The bulk of his calories still come from this smooth puree.  The good news is that we do not seem to have issues introducing new foods!  He asks what he’s having at each meal and simply says “Okay.”  Such a sweet little boyJ. 

I will be keeping up this blog when we get home…probably more on a weekly basis.  While we are so much closer to our end goal, I’m afraid it will be a long time before our lives are completely “normal” with Gavin eating on his own.  I will be home with Gavin continuing this journey until we can send him back to school.  I think I will probably stand out in the hall at each meal the first week he goes back to daycare to watch him eat on his own!  Let’s pray that day comes before Kindergarten!  

Week 7, Days 4 & 5

The end is near!  We have reached the final test…Gavin and I were alone in the room for two sessions yesterday and all the sessions today!!  I had an earpiece in my ear with the therapist on the other end watching from the observation room.  It was a little weird to be alone in the clinic room feeding Gavin with an audience in the other room!  During the first solo session, Gavin picked up pretty quickly that the therapist was watching thru the camera and would wave and say hi to the camera once in a whileJ.  We did okay.  There were a few rough points in each session, and it was obvious that he put up a better fight when it was just the two of us in the room.  It is easier to distract Gavin and ignore certain behaviors when someone else is in the room.  Strength in numbers I guess!  Although, I am still yet to determine the exact recipe for a perfect feeding session.  Sometimes a new movie or new toys help to keep Gavin’s mind off the meal, and other times all he needs is good conversation to keep him going.  Whatever we were doing in the last session yesterday did not seem to have a positive impact on him!  Before the meal even started, I was helping Gavin with his exercises, and he just shutdown.  He put his fingers in his mouth and just stared straight ahead for a good ten minutes.  He was done.  The tough part is that he has to buy into the decision to keep going, so we had to figure out what we could use to snap him out of the funk.  After turning on the TV for a few minutes, bringing out new toys, a coloring book, and doing everything but a cartwheel, Cara was finally able to get the session back on track by asking Gavin to point to different body parts.  I was exhausted by that point, and Gavin hadn’t even taken one bite!!!  We survived the rest of the meal with less drama!  Today the first three sessions went really well!!  Gavin chewed banana, granola bar, a PB&J sandwich, and pears.  The last session again was a challenge.  Monster Gavin came out and I was so exhausted from the day, making it tough to redirect him. 

Gavin and I went out to Chili’s for my dinner last night!  I fed Gavin before we left, so he was ready and excited for a bowl of ice creamJ.  Unfortunately, somewhere between when it was brought to the table and when he picked up the spoon Gavin seemed to have lost interest in the ice cream.  Oh well.  Gavin is actually able to carryout a decent conversation for a two year old, so I decided to ask him why he has trouble taking his bites sometimes.  He told me that he gags and it scares himL.  I tried to explain that we are trying to help minimize the gagging by teaching him how to move his tongue and chew on the side.  He seemed happy with that response and moved on to happy topics.  Tonight, we went out to the mall as a treat for three good sessions today.  They have little vehicles that Gavin likes to ride…not quite Chuck-E-Cheese’s, but Gavin enjoys it!  We hit another volume record at dinner tonight…10.7oz!!!  9.5oz was our previous record, so I’d say we did pretty goodJ.

 

Our friends Mike and Tracey left with their baby Cash yesterday!  We are so excited for them to start this new chapter in life at home, but we will miss them here in the house.  Our other friends, Lacy and Andrew will hopefully be leaving soon too.  My Aunt Janet makes beautiful quilts, and after hearing about my friendship with Lacy, asked if she could make a baby quilt for Alex.  It is beautiful!!!!  Thank you, Janet, Lacy and Andrew love it!!!

Gavin got another package in the mail yesterday from our friends Eileen and Carey!  They sent a book all about a mommy bear and her cub, a little voice recorder, and stickers.  Gavin loved them!!  Thank you guys.  I spent the evening covered in ice cream and watermelon stickersJ.

 

Week 7, Day 3

 

We made it to Chuck-E-Cheese’s today!!!  I’ve never been so happy to see that little mouseJ.  I have come to realize that four perfect sessions is a tall order for a two year old…especially one who has been through seven weeks of nonstop therapy.  So, instead of lowering the expectations, today we worked the system a little!  Gavin truly had three great sessions.  The last session has become a tricky one because we are pushing him with chewing.  Today’s solid food for chewing was vegetables…zucchini, summer squash, and red peppers.  It was a stretch.  I talked to Chris, the therapist who was with us the last session about our great day and the trip to Chuck-E-Cheese that was on the line.  We both agreed that we needed to manipulate the session as much as possible to keep the experience positive to allow Gavin to get another reward for his success.  As expected, things started to go south with the first taste of veggies!  We quickly moved to putting them in the mesh, and that got us through the first “circle.”  By the time the veggies came around in the second circle, Gavin had decided that he was not a fan, not even with the mesh.  Chris acted quickly and explained to Gavin that this was the last bite of veggies we expected him to try, and he all we needed him to do was allow the mesh wrapped veggie to touch his tooth to the count to ten.  She assured him that she had the actual food he was going to chew after that, but we just needed to get through this bite.  For extra encouragement she through in a little mention of the mouse that was waiting for him!  It worked!  The sweet boy even chewed the piece of zucchini in the mesh the whole count to ten because he has been trained that that is what he is expected to do!  We moved onto a friendly pretzel, and things improved.  Chris asked him about different games at Chuck-E-Cheese the entire session, and we survived with no real issues!  Gavin was so excited when the timer went off.  He jumped out of his chair and bolted down the hallway yelling “I’m going to Chuck-E-Cheese!!!  Four good sessions!!!  I’m going to Chuck-E-Cheese!!!”  Throwing the last session a little was definitely worth it todayJ.

There was a nursing student, Robert, observing patients in the clinic today, and I had mentioned to him that Gavin has NDI, which has led us here for feeding therapy.  Robert has been an EMT for many years and was familiar with the condition, but not surprisingly had never actually seen a patient with diabetes insipidus.  He ended up asking me questions for the hour between sessions about our experiences with Gavin and asked if he could share Gavin’s story with his class.  In our conversation, he asked me how Eric and I have coped with having a child with medical needs and feeding issues.  At first I didn’t know how to respond because we are typically focused on how Gavin is handling everything.  We don’t always stop to really see how much this has changed our lives.  Sure, we think about it, but if Gavin is good, we are good.  Then, I realized that sharing Gavin’s story is what has gotten us through the hard times.  Eric and I are very open about Gavin’s condition, and in telling his story, we have in turn received so much love and support from family and friends.  Writing this blog has helped me to express the highs and lows of the process.  I thank all of you who are reading this for being invested in Gavin’s journey and providing our family with so much support.  Through telling Gavin’s story, I hope that we can help other families who are also struggling with feeding disorders and spread awareness of NDI.  There is nothing we can do to change Gavin’s condition, nor will I ever know why God has chosen Gavin to have NDI, but I do know that if Eric and I do not accept and cope with his condition and everything that goes along with it, then we will not be able to provide Gavin with the ability to cope with his own life.  He needs to feel that he has our love and support, and can’t spend his whole life asking “why?”  Again, NDI is a manageable condition, and Gavin will live a nice long life.  That is what we are focused on! 

Week 7, Day 2

We have officially begun our transition from therapist led sessions to Mommy led sessions!  I have been involved in feeding since we got here.  I typically feed the last half of most sessions and many all on my own with one of the therapists there to assist when needed.  Now, I am doing all the exercises, chewing practice, and facilitating the meal.  Next week, the therapists will move to the other room to watch, leaving me to entertain and distract Gavin on my own!  The idea is to get as close to real life as we can in this ideal therapy environment.  Hopefully, Gavin will realize that it is just the two of us in it for the long run and accept me as the primary feeder!  I’m not too worried.  It is funny though…I used to be terrified of sitting down at the table to feed him.  When we started our sessions back at home with Tiffany, my hands shook as I awkwardly presented the spoon to Gavin’s mouth.  I was scared he wouldn’t open his mouth, would gag, throw up, choke, scream, and/or freak out.  I am happy to say I am not scared of my two year old in the highchair anymore!  I’m still nervous when we sit down and say a little prayer for a good meal, but I know that we can work through the rough times and have some good meals!  I am coming to accept that Gavin will challenge me daily, but my job as his mom is to stand firm and be consistent…sounds like good parenting advice overall!  I look forward to the day we can sit down at the dinner table and have a nice conversation without having to say “bite’s turn, open for your bite…good open….drink’s turn…one…two…three…good drink!”  SomedayJ

Gavin had an okay day.  He seemed a little out of it when he woke up this morning and then again after his nap, so we kind of tiptoe around him just a bit!  The last session again kept us from going to Chuck-E-Cheese’s.  Gavin practiced chewing meatball.  We still laugh and joke about Gavin’s cousin Ben at Thanksgiving running around the house yelling “Meatball!  Meatball!”  He LOVES meatballs!  At first, the reminder of Ben peaked Gavin’s interest for the meatball, but halfway through the first bite he decided it would be more fun to chew it real good and spit it out.  Then, he started packing it in the back of his mouth saying it was gum and he couldn’t swallow.  I think Gavin needs a few pointers from Ben! 

Eleven more days and 32 more sessions before we go home!!  We will have had 148 sessions in the eight weeks that we’ve been here!  That is basically three years of therapy in two months!  Gavin and I, with the help, love, and support of Eric, family and friends are going to keep at this for as long as we need to until Gavin reaches his end goal of eating.  We still have quite a journey ahead of us, but we are SO much closer to the end than we were!!!  This feeding clinic is truly amazing!!!!

Week 7, Day 1

We had a pretty good day…especially for a Monday!!!  Gavin came so close to earning another trip to Chuck-E-Cheese’s, but the last session was a rough one.  Poor kid just gets pooped by the end of the day.  The first three were really good sessions thoughJ.  Gavin finished his entire meal before the timer went off in the first and third meals!  Those are typically the meals where we focus on volume.  In the second and fourth sessions, a solid table food is included in Gavin’s meal to chew for at least the first half.  Gavin had little pasta stars with marinara sauce in the second session, and he loved them!!!  He sped through the pureed foods to get to chew the real pastaJ.  It was so encouraging to see!  The last session Gavin chewed some homemade Mac & Cheese (lower sodium than Kraft…and not as goodL).  Unfortunately, Gavin can taste the difference and was not thrilled.  He chewed it pretty well, but it took a while.  We are going to go back to chewing that one in the mesh again and see if that helps.  Today we really noticed improvement in the time it takes Gavin to chew and swallow certain solid foods.  He practiced chewing some cinnamon toast before one meal, and he finished a quarter of a slice in just under five minutes! 

There has been another little boy (22 months) staying at the Clown House for the feeding clinic today and tomorrow.  He has been coming once a month for the past three months, and it was so nice to see him again today and notice such a change in him in just a month!  He has gained a pound and grown two inches in height!  I talked to his mom for a little bit, and it was so refreshing to hear how this program has really changed their lives as well…in only three visits!  It is amazing how kids thrive on structure and consistency.  Once boundaries and expectations are set at the table, kids learn how they are supposed to act and feel safe enough to take their bites. (For a concept that sounds so simple, it is sure hard to establish and follow through with!  After a year of therapy at home and six weeks of intensive therapy, we still struggle!)  My conversation with this mom also reminded me of our last trying session of the day.  Dr. Powell was in the room, and she could see my whole world crumble when Gavin started refusing the food, spitting, kicking…  In a relatively short time period, we were able to turn him around and finish on a positive experience.  Dr. Powell was very encouraging, and suggested that I accept that we are going to have trying times, but to just take a deep breath and focus on how well my two year old corrects himself when things start to go a little south.  We had a day full of great feeding experiences, and that is what I am so proud of.  Gavin is a good little eaterJ.

Our friends Lacy and Tracey are going to be headed home with their babies…hopefully by the end of the week!  We will miss them very much, but we are so excited for them to take their now two month old babies home!  We got to celebrate little Alex with Lacy and Andrew tonight with a few little treats.  I can’t wait to meet Alex when he is headed home!!!

Gavin and I had a little fun tonight after a decent dinner and bath.  With a few somewhat warmer days, Gavin wants to be outside all the time now…even when it’s not so warm anymore!  As a treat, we put Gavin’s snow suit and jacket on over his PJ’s and went outside for a couple of minutes to play some ball.  Gavin was pretty excitedJ.

Gavin got two cards in the mail today!  My parents sent Gavin a card promising trips to Chuck-E-Cheese’s, the zoo, and pizza when we get homeJ.  We’re ready!!!  Jim and Sheri also sent another card with Trenton, Tanner, Coltyn, and Morgan our Missouri cousins.  Gavin hopes to play with you guys again soon too!!!  Thanks for the encouragement!!  

Week 6, Day 5 & Weekend 6

Week 6 is over!!!  Gavin actually had a pretty good week!  We started a little rough, and unfortunately our last session was not so pretty…no Chuck-E-Cheese for FridayL.  Eric was there for this final session of the week.  As expected, Gavin was excited to show off his good eating abilities, and he happily announced “I’m ready!  I’m ready!” once we strapped him into the chair.  Eric sat right next to him with Emily on the other side to facilitate the meal while Dr. Clawson was there to observe the chewing practice and Dr. Powell watched from the other room.  It was quite the audience!  For whatever reason, something set Gavin off the second the meal started.  I think it was the broccoli that was in the meal…  Gavin is starting to express more when he does not like a food, and he puts up a good fight to get that food removed from the meal.  Two bites in, Gavin started crying and whimpering “Mommy…MOMMY!!!”  It was suggested that I excuse myself from the room to allow Gavin to recover and know that I am not there to rescue him (poor kid…isn’t that what mommies are for?L  I guess this is called tough love!).  While I watched from the other room with Dr. Powell, Gavin continued to become randomly unglued for the throughout the session, but he seemed to be taking the bites okay.  The funny part was when Gavin turned to Eric and said, “Go find Mommy!!!”  Gavin is typically a HUGE Daddy’s boy, so it was almost sweet that he wanted me so badly.  He finished the meal with a very low volume, but accepting small bites throughout the meal.  Dr. Clawson was nice enough to assure me that it really wasn’t that bad…we’ve seen worse from him!  It’s just hard to still see these meltdowns after six weeks…yes, from my two year old!  I have to keep reminding myself that he’s only two.  This is hard on him, and this behavior is age appropriate.  Not good, fun, or acceptable, but almost expected behavior from time to time.

While I am sad to say Gavin did not get his reward of Chuck-E-Cheese Friday night, that left time for us to go out to a nice dinner with a perfect glass of wineJ.  Gavin got some ice cream too, which he decided he did like this go around!!  It was so nice to have Eric here for one last weekend!  Gavin loved playing with him outside, even though it is a little chilly!  Our days revolve around feeding Gavin, so there really isn’t much time to go out on big adventures.  Feeding Gavin out at a restaurant is still a struggle, and we’d like to avoid it if possible.  He does a good job of nibbling on solid table food when we do go out for Eric and I to eat, so that’s good to see.  We got him a cheese quesadilla at Chipotle for lunch on Saturday…in the time it took Eric to finish his whole burrito, Gavin had successfully finished his second bite of quesadilla!  He takes FOREVER to chew!!!  But, he chews on the side and is able to move the food from one side of this mouth to the other when instructed.  Efficiency will come with practice and patience on my end!  

I spent today making more food for Gavin…macaroni & cheese, spaghetti & meat sauce, pasta primavera, meatballs, and vegetables.  I am told they are really going to push him this coming week!  In texture grading, meats can be a little trickier to handle, so we are going to start with some meat-free pastas.  Hopefully Gavin will be up for the challenge!

It was hard to see Eric leave this evening, but we will see him again in two weeks.  More importantly, we will meet him in Memphis on our way home in two weeks!!!!  It will be so nice to finally be home again and get back to a more normal life.  It will be quite a change from before, but we will keep up this circus act for feeding as long as we need to.  Gavin will eat at the end of this!!!

Gavin got a nice singing Snoopy card in the mail from our family friend, Karen Fitzgerald!  Thank you!  Gavin laughed so hard as he showed his Snoopy dog the cardJ.  

He also received such a nice package from our good friend Ann Gardner!  Gavin loved the air plane, “Planes” movie, books, recorder and sticker book…and of course the confetti!!  Thank you so much Ann!!  Gavin ran all over the house talking about youJ.

Week 6, Day 4

We truly had four great sessions today!!!!  We have been given the go ahead to continue with texture gradingJ.  One gritty food is introduced into the circle at each meal so it won’t shock his system too much.  The gritty purees are prepared by pulsing the food in a blender until you reach a relatively consistent consistency.  Less liquid is needed compared to a smooth puree.  This pureeing process isn’t perfect as some larger chunks of food often remain in the effort to keep the puree gritty.  We have to do our best to pick around them during the meal to prevent the dreaded gag or vomit episodes.  Gavin successfully accepted some gritty peaches and gritty turkey lasagna!!  He made a few funny faces after each bite, but they seemed to get less frequent and awkward as the meal progressed.  We did have one unfortunate experience with the gritty lasagna at the end of one session.  As I was feeding Gavin the lasagna, I noticed one of those larger pieces on the spoon just as Gavin was closing his mouth.  It all happened in slow motion to me!  You first saw that look of panic when Gavin found that unfortunate oversized piece of noodle, then the gagging started and that paralyzed look of fear took over.  We lost a few of those hard earned bites to that large noodle, but it wasn’t too much in the end.  The other psychologist, Dr. Jen was in the room when this happened, and she had me feed Gavin a small taste of that gritty lasagna before we moved on so he knew that food was still “safe”.  (I don’t know that I will ever get over continuing a meal after I watch Gavin vomit, but I do understand that it is an important message to send to him.  For some reason so many of these feeding kids, Gavin included, learn that if vomiting gets them out of the chair then they will force an eruption…so smart, yet so ridiculous at the same time)  Gavin put up a bit of a fight, as you would expect, but he accepted another bite of the lasagna.  We continued one more circle successfully and let the last minute of the timer run out while Gavin was happy and ended on a positive eating experience.  Bottom line, double check gritty foods BEFORE shoving the spoon in your little one’s mouth!!!

We have continued to allow for self-feeding at the beginning of each meal.  Like any toddler, it just depends on the mood Gavin is in!  Once it looks like he is going to try to flex a muscle of independence and derail the feeding session, we immediately take the plate away, redirect, and finish the meal feeding him.  We have seen a lot more of Mischievous Gavin now who is just trying to outsmart us in the feeding process.  He will tell long dramatic stories and rub his eyes like he has a horrible itch to stall the meal.  We will work on ways to keep him focused in the next two weeks.  I’m just happy we did not see Monster Gavin todayJ.

Eric was able to feed Gavin in the last session today!  Gavin was of course very excited to take his bites for Daddy.  They did a great jobJ.

After four good sessions, Gavin was given the choice of going to the playground or back to Chuck-E-Cheese’s, and you can see what his decision wasJ.  He loves that place!  When we got back to the Clown House, there was a third grade class that was there to make dinner.  Of course Gavin loved having all the older kids there to play with…or more like hop around as they played!  They were such nice kids and really liked talking to Gavin.  It was a good end to a good day!!