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!!

Week 6, Day 3

We made it to Chuck-E-Cheese today! J  The first two sessions were great.  Gavin fed himself, ate half a slice of cinnamon bread (over the course of an hour and a half…but he ate it with very good chewing skills!), and he ate some Mott’s Applesauce!  Up until this point, all the applesauce had been pureed, so this was a big deal!  The third session probably should have qualified as a bad session, but we are giving him some credit because of my poor cooking skills.  He was given chicken and rice that I had cooked with very little seasoning.  I tried it after the session and realized that was cruel and unusual punishment to feed him that.  Once it was taken out of the circle, Gavin improved and continued to take his bites with some hesitation but without turning on Monster Gavin!  Eric made it to the fourth session, and Gavin did great!  He ate strawberry applesauce and loved it. 

I have been in a panic this past week thinking Gavin was going to shut down and we would be sent home.  I know it is a lot to ask a two year old to perform four times a day for eight weeks straight, but I need him to hang in there!  I talked to Dr. Clawson today, and she assured me that she has Gavin scheduled through the first week of April, completing our eight weeks.  It is often recommended that kids return to the clinic at a later date to learn new skills that they were not ready for at the first stay, but I cannot see leaving here with the intention of coming back.  We have our therapist, Tiffany, at home to help us through the rough times and keep us on track, and if we end up getting into a rut at home down the road and need to come back to the clinic, that will be fine.  I feel like Gavin is so ready to eat and picks up so quickly on what he is being taught that we have to give it everything we’ve got now.  If that means we go to Chuck-E-Cheese’s every night until we have left to keep us motivated, that is what we will do!! 

Our next two weeks hopefully, assuming Gavin accepts it well, will be focused on texture grading.  I am told it a slow and structured process, just like everything else in feeding.  I cannot wait to learn everything about it so we can go home closer to solid table foods!!!  I do see more and more hope each day that Gavin is accepting solid table foods.  He ate about five decent bites of pizza at Chuck-E-Cheese’s, and then ate some mashed potatoes and cornbread back at the Clown House!  I know one day he will be eating like the rest of us and all of this will be a distant memory.  I’m ready for that day!

Weekend 5 & Week 6, Days 1 & 2

We are still here hanging in there!  We’ve been busy having fun with Eric, and blogging has taken a backseat…sorry!  It is so nice to have Eric here for the weekend and week…he came at the perfect time for me.  We have been in a little bit of a slump.  I am told that at six weeks, kids in this program typically hit a “wall” and it is hard to get them to perform much longer.  While I completely get this and will accept that our end is near, the desperate mom in me is still doing everything I can to keep him going and extend our stay.  We have made great progress in the last five weeks:

      1.       Gavin now loves peaches!  If you remember, our baseline session where Monster Gavin made his clinic debut was with peaches.

      2.    Gavin is successfully able to use his tongue and chew solid table foods.  It might take him FOREVER, but he can eat about ten little bites of a solid and swallow without gagging or vomiting!

      3.       Gavin eats pureed table food!  His diet has drastically expanded from his beloved yogurt, and we can even have a meal without it!!

      4.       Gavin is weaned from his buttonJ

So, we have accomplished a lot in this long SLOW journey!  Our next step is texture grading. 

Eric came in Saturday around lunchtime.  We had told Gavin all week that Daddy would be here Saturday, and he was eagerly awaiting his arrival!  In all the excitement, Gavin managed to fall asleep five miles from the airport, so he slept through Eric’s arrivalL.  We went out to a local pizza/microbrewery, and when we got to the restaurant, Eric was transferring him to the stroller when Gavin mumbled in half consciousness, “is it Saturday?!”  Gavin managed to sleep through lunch, and Eric and I had a very enjoyable and relaxing time!  After lunch, we went back to the Clown House and Eric and Gavin played outside on the playground for about two hours.  They were two happy guys!  My weekend was focused on cooking food for Gavin.  I made spaghetti and meatballs on Saturday night.  On Sunday, with Eric’s help, I made chicken stroganoff, chicken and rice, and a lasagna…all low sodium!  We stayed in to have dinner at the house both Saturday and Sunday nights so I could cook.  It was SO nice to have Eric here for some help!!!

 

Sunday was our friend from the clinic, Noah’s 2^nd birthday!!  Jennifer sent us a video of him blowing out candles on his cake…Gavin watched it at every meal!!  Thank you JenniferJ.  Sweet little guy even got to have some cake and ice cream for the big day!  We miss having them here in the house and at the clinic to celebrate all these little milestones with.

Monday was another rough day at the clinic.  Eric came to the first session, but unfortunately, that didn’t seem to give Gavin any incentive to excel.  Things went downhill with the first biteL.  By the third session, I was watching from closed circuit TV in the other room.  Monster Gavin was out in full force.  The real battle seemed to focus again around his much needed water.  Gavin took a nice long nap just before this session, and he did not drink very much before the session started.  Once we started he immediately started crying again for his water.  Last week, we had discussed the option of allowing water in the circle rotation during a meal to prevent the binge drinking that occurs before each meal, filling his tummy.  At the end of the day, water will always be included in a meal as Gavin gets older, so it is not entirely realistic to remove it now.  With that in mind, and my concern that he truly was low on water for the day, I asked the therapist if we could include a little in the meal.  When a change is made to the structure of the meal, like any other toddler, Gavin tests the limits to see how much he can get.  It took a few rounds of the circle and a lot of tears for Gavin to understand that he gets three drinks of water after the milk, but he picked up on it.  The funny part was that a few opportunities when Gavin was given his water to drink, he refused.  This again shows us that his response is more behavioral than anything.  He needs water though, so I think this is a good modification to the circle.  The last session was better.  Gavin was very excited to tell everyone that he gets water in the meal now!

After a long Monday back, Eric suggested that either I get out for a break or we go out to dinner.  I really wanted/needed a nice glass of wine, so we decided to go to a local Italian restaurant, Smitty’s.  It was very good!!  Two nice things happened at dinner to remind me that we are going to be okay.  First, Gavin ate half a little bag of Teddy Grahams without gagging or being prompted to eat!  And second, we were told by just about everyone in the restaurant how good our little boy isJ.  He does such a good job (most of the time) when we go out to eat.  We are really proud that he can sit there so well with very little effort on our part.  He’s a good kidJ.

Today, Tuesday, I decided we needed to add an extra incentive to encourage good sessions, so I told him if he ate all of his bites at ALL four sessions without spitting or acting up, then we would go to Chuck-E-Cheese’s, Gavin’s favorite place!  He was all excited and on his way there after the first very good session.  Unfortunately, the second session involved some spitting and we had to resort to using a baby spoon after a number of refusals.  It wasn’t horrible, just not great and not acceptable.  The last two sessions went well!  Eric made it to the last session, and we FINALLY started texture grading!!!  In addition to the smooth purees in his meal, Gavin was given a bowl of apple sauce from a pouch that was not pureed first.  He did great with it!!  Eric sat next to him for the meal, and I think that helped.  After the last session, the sweet little guy looked at us and said, “Now we can go to Chuck-E-Cheese?!”  It was so hard after such a great two sessions to say no, but we have to keep our high standards.  Instead, we decided to go to Chick-fil-a to play on their playground and get some ice cream.  We got three ice creams…one for each good sessionJ.  On our way back to the Clown House, we passed the clinic and Gavin asked if we could go back for a fourth session so he could do well again and go to Chuck-E-Cheese’s!  Hopefully we can make it tomorrow!

Gavin got a few more cards the past few days!!  Eileen and Carey sent another card, and so did our Missouri Ross relatives up on “The Hill”!  Thank you all so much!!  Your words of encouragement are so helpful!  Gavin also got a package from Grandma and Grandpa and another one from Grammy and Grampy!  Grandma and Grandpa sent a SF Giants shirt from spring training…thank you guys!  Grammy and Grampy sent a Cheerios car with a trunk that opens so you can put cereal in it!!!  Gavin LOVES eating cereal out of the back…thank you!  Gavin also got a present from Lacy and Andrew here in the house…they got our little water boy a huge cupcake cup!!!  Hopefully it will inspire him to eat as he drinksJ.  Thank you guys!!!