Week 3, Day 4

We have almost made it through three weeks here!!!  Gavin continued to make progress, especially when it comes to eating table foods!!  He successfully ate almost half an ounce of a solid bananaJ  I was happy to hear Dr. Clawson say that we need to keep pushing Gavin with chewing more solids, even after yesterday’s vomit over a blueberry muffin.  The only way he will learn is with practice, practice, practice!  Table foods were incorporated in the food rotation during the first half of Gavin’s meals today.  It is interesting to me that we are practicing foods at two different extremes…table foods with purees.  I guess that’s what “normal” kids do around 12 months though…I don’t really know!  Hopefully that means we are close to texture grading Gavin’s food to closer to a stage 3 baby food.  It sounds like Dr. Clawson wants to push him a little harder since he is doing so well with chewing!!

I had a wonderful birthday today!  One of the therapists, Emily, brought in donut holes and donut balls.  (I didn’t realize there was a difference, but apparently there is!); a couple here in the house with a baby in the NICU slipped a birthday card under my door; and my parents arrived tonight to take us out to dinner, which included a much needed glass of wine!  I even got two packages from my Aunt Janet and Uncle Bob with books for Gavin, a purse for me, and beautiful cookies.  Thank you guys so much!!!

 I think the best part of my day was that Gavin actually ate a little bite of each birthday treat that I got!  He ate some of a strawberry donut ball, the cookies from Aunt Janet, three rigatoni noodles from my dinner, and a tiny piece of the key lime pie!!!  I couldn’t ask for a better birthday present.  I’m sure you can all guess what my birthday wish wasJ

My parents arrived just after our last session today.  They flew into Louisville and stopped at Churchill Downs for a tour before driving to Evansville.  It was so nice to see them again!  We had a nice little birthday celebration in their hotel room before heading to dinner.  They will come to the clinic tomorrow and hopefully get to feed Gavin as well.  There is so much structure required for Gavin to eat, it is important that I am not the only one who can feed him in case I’m ever sick or out of town.  Hopefully Monster Gavin plays nice with Grandma and Grandpa!  It will be nice to have some company (and help) over the weekend.

 Thank you all for the nice birthday wishes through Facebook, email, and text!

Week 3, Day 3

I keep wondering if I had a prescription for a glass of wine each night, do you think the Ronald McDonald house would let me have it? J  I’m sure I could find a doctor that would agree that it is a medical necessity!!  I think Gavin and I are starting to suffer from too much togetherness.  I love him more than anything and would do anything for him, but our time here is wearing on us.  I keep reminding myself that he’s two, even though he is developing a 12 year olds attitude!  Thankfully, my parents are coming tomorrow!!!!!!  They are taking me out to dinner to celebrate my birthday and will be here for the weekend.  It will be nice to have a little relief!!  Sometimes you just need your mom and dad to make things betterJ.

Gavin did well at the clinic this morning.  He seemed to like the potato and chicken soup again, so that was great!  The technician who prepares Gavin’s foods senses my desire to expand Gavin’s limited diet, and she has decided to test his limits a little!  Naps continue to be a struggle here.  We have about an hour and forty-five minute break for my lunch when Gavin should be napping.  For whatever reason, Gavin will not go down for a nap.  I end up driving all over Evansville to get him to sleep.  He usually falls asleep after an hour!  Today I had had enough.  I brought him back to the clown house and he cried and screamed in bed fighting the nap.  He did fall asleep though…just before we had to leave to go back to the clinic!  Thankfully I was able to squeeze a little lunch in.  Gavin slept as I carried him to the car, drove the short distance to the clinic, and carried him up to the clinic’s playroom.  We skipped exercises and chewing to give him a few more minutes of sleep.  By some miracle, he actually woke up happy to take his bites!

The last session was a little rough.  Dr. Clawson wanted to test Gavin’s chewing abilities, so they had him practice chewing a piece of cheese and a blueberry muffin.  He wasn’t a fan of the cheese, but loved the muffin!  We decided to put the muffin in the rotation of purees and PediaSure to see how he did.  Everything was going great!  Gavin was chewing on the side of his mouth, his tongue was working, he was the poster child of chewing…almost.  Then, in the last bite of muffin, a piece got stuck on the back of his tongue and the gag started.  He has been so good at recovering from gags and not vomiting, but this was just too much.  EVERYTHING came back up…including some of the food from the previous meal two hours before.  It was not a pretty site.  Gavin just looked stunned, but did not cry thankfully.  He was a trooper and just continued eating once we cleaned everything up.  When the session was over, instead of running to the playroom, he bolted for the door, not even caring that his clothes were covered in vomit.  Poor kid.

We took a little break from eating and went to Chuck E Cheese’s with Lacy.  It was really nice to get out and have some company.  Gavin loved the little games and riding cars.  It was a good time!  When we came back, we met another family that is starting the intensive day feeding program tomorrow.  The have two kids, a 3 year old boy and a 14 month old girl.  The little girls was here for six months back in November, and this is the boy’s first time in the program.  Gavin had a lot of fun with more kids in the house.  Noah we still miss you though!!!  Gavin has been sleeping with his little doggyJ

I’m afraid we may have scared the new family during Gavin’s meal.  With only a 30 minute power nap, things tend to go downhill fast.  Monster Gavin had been hibernating for a few days, but I managed to wake him tonight!  Oh was he angry!  Thankfully there was not spitting, and we did manage to get some decent volume in him, but it’s just a tough way to end your day.

The best part of the day was when we received two packages!!!  Ms. Ann, a close family friend who runs the Humble ISD daycare that Gavin use to go, sent Gavin a huge package of toys, books, and stickers.  She had decorated the box with all kinds of animals, it was so cute.  Gavin loved them all!!!  With each thing we pulled out he’d say “open this! Open this!”  It was full of confetti, and Gavin had so much fun throwing it all over the place.  I almost told him to stop, but it was nice to hear him squeal with laughter and excitement!  Thank you so much Ann!!  We also got a box from Grammy and Grampy (Eric’s parents) with a book for Gavin and a birthday present for me J.  Thank you guys!  I love the shirt, bracelets, and body wash! 

Week 3, Day 2

Our day started off a little scary, but everything was fine.  I awoke to a loud thud and cryingL  Gavin had managed to fall out of bed.  He had rolled to the end of the bed and found the corner that was not fully barricaded.  He cried for about a minute, but then started laughing and bouncing all over the bed!  I was glad that he appeared to be doing okay, but then he stopped and looked at me really seriously.  He said “You’re not Ms. Anna…you’re mommy!”  I guess he is dreaming about his therapy sessions now!  Better than mean alligators.  He was fine, but has a little bruise on his back.  It doesn’t seem to slow him down at all!

Our day went really well.  Gavin actually said that he liked the chicken that was mixed in potato soup!!!  He is very vocal when he does not like something, so I trust that he did like it.  We have graduated from the squeeze bottle we were using for the PediaSure to a toddler cup with a lid and straw!!  Gavin likes his independence, and has really embraced the idea of drinking on his own…most of the time!  We are still using a one-way valve that keeps the liquid in the straw to decrease the amount of air Gavin swallows.  He tends to get a bit burpy…He is definitely getting better at burping and moving on without a big production.  Towards the end of the meal when his little tummy is full is when we tend to slow down if he’s having too many issues. 

In each session, we do exercises and have Gavin practice moving his tongue and chewing.  When introducing new foods and textures for chewing, we tightly wrap the food in mesh fabric in order to keep the bite together and allow only a few food particles free in the mouth.  The mesh is held by the feeder in the back of the mouth on each side where we chew, and then Gavin bites down repeatedly like he would if he were eating the piece of food.  We start with a fine mesh like you see in a wedding veil and then move up to a wider mesh with bigger openings before finally introducing the food alone into the mouth.  This has been a long process that we started with Tiffany back in Houston.  When we got here, Gavin was accepting a strawberry Nutri-Grain bar in the fine mesh…most of the time.  Today, he bit off pieces himself from the Nutri-Grain bar and ate it like a normal three year old!  Well, sort of…he kept pointing to the side of his mouth to assure Ms. Anna that he was chewing on the side! J

Gavin will not be getting any PediaSure tonight, so we are back on track with a full day without tubing!!  It is tough trying to judge how much food/drink Gavin needs.  I am so used to our dietitian giving us a set volume of PediaSure that he needs in 24 hours, and just making that happen.  I spoke with Dr. Clawson and the dietitian here a little bit last week about how we should track Gavin’s food intake for the day.  Dr. Clawson reminded me that in the real world we do not weigh our kid’s food before each meal and calculate the exact number of calories they consume exactly.  That just happens in this perfect world of feeding clinics.  She suggested that for now we track his intake based on the total ounces of food/drink that he consumes in the day and have a target number to hit each day as opposed to calculating the number of calories in each food to hit an exact calorie goal.  The goal is to have him eating a balanced healthy diet like any other kid…minus the processed foods J I look forward to that little bit of normalcy, even if the foods are still pureed!

We are going to keep pushing new foods.  I have a few low sodium cookbooks, and I am eager to try some of the recipes for us to puree.  It is hard to keep thinking that we are only at purees, but a year ago, Gavin wasn’t eating a thing by mouth!!  We are just following the natural progression of food from six months on up…just a little late, but that’s okay, we are eating!!!!  One of the ladies that works in the office at the clinic said that she was a climber when she was a kid.  She told Gavin that he needs to eat all of his food so he will be strong and she can teach him to climb.  Apparently her favorite climbing mountain was the refrigerator!  Thankfully Gavin has not been a climber, and we do everything we can to discourage it.  I think I’d be okay bringing him back to Indiana to have him learn to climb that refrigerator after he eats his first big hamburger if it would give him a little incentive!!

Gavin ate a little bit of cake tonight that one of the volunteers made!!!  I don’t know why, but the idea of him eating cake for his birthday is such a milestone that I want him to reach.  I’ve even considered pureeing it for him for his 3^rd birthday, but I think that’s going a little too farJ  After tonight’s progress with this cake, I am fairly confident he will at least consume a crumb of his cake this year!

I know so many of you are asking for our address.  That is so sweet of all of you.  We appreciate your thoughts and prayers alone, please do not feel obligated to send anything.  Our address is:

Gavin Matthews #205

The Ronald McDonald House

3540 Washington Ave.

Evansville, IN 47714

Week 3, Day 1

I keep reminding myself today we are a quarter of the way there!!!  It was a rough one…and thankfully not because of feeding challenges.  Gavin had a nightmare last night that an alligator was going to get him.  I ended up in his bed for the night, and he is not a good sleeping buddy!  He kept waking up to make sure I was still next to him.  I reassured him this morning that I got rid of the alligator in the trash.  He asked if the garbage man took him away, and seemed satisfied when I said he did!  He thanked me, and he seemed better. J  We were both dragging a little today.  We came back after the first two sessions for what was supposed to be nap time for both of us today.  This also happened to be the time that all of Gavin's full tummy kicked in and he got a second wind!  He was literally bouncing off the walls for an hour and a half!  By the fourth feeding session, it unfortunately all caught up to him.  Throughout the meal, Gavin was stroking his hair, and then with ten minutes left, he just looked at me and started balling.  The poor baby kept saying “Mommy get me out!”  Anna suggested I leave the room since he was looking to me to be rescued.  The mom in me wanted to tell her that my job to rescue him when he’s tired and needs me!  I have to trust that they know what is best for this therapy to work, so I stepped into the viewing room to watch.  While Gavin continued to cry and tried to force himself to gag and vomit, Anna kept on going, and sure enough, Gavin kept on eating!  She calmed him down and he finished the session with a decent volume and no throw up.  I made sure to give Gavin plenty of hugs and loving after that session!  Needless to say, he fell asleep on our way back to the clown house.

We will be moving onto some new foods this week!  Today we tried vegetable soup, and it went pretty well.  I made some chicken for him tonight that will be pureed and added to some soup tomorrow.  It will be good to expand his diet a little.  After almost a week of no tubing, I will be adding some PediaSure to his pump tonight.  He’s been having so many fruits and vegetables, which is great, but he is a little low on calories.  We’ll get there though!  It has also been a week since Gavin vomited up food, so we are making good progress!!

Week 2, Day 5 & Weekend 2

Gavin and I have had an eventful three days!  Friday went pretty well.  By then end of the day it was clear that he was done with therapy for the week, but he was a trooper.  I fed Gavin the entire third and fourth sessions, and they went pretty well!  Monster Gavin did give me one somewhat intimidating look during the last few minutes of the last meal, but with Anna’s help we quickly distracted him and my sweet little boy returned.  I would say we had a very successful week!  Whether it was Gavin’s increased appetite due to the antihistamine, eliminating the night feeding, or the effectiveness of the therapy, I am just happy to see him eating so much!!!  We have not tubed him any PediaSure since Tuesday night!  Gavin now successfully eats broccoli, carrots, apricots, peaches, pears, sweat potatoes, pureed shredded wheat soaked in applesauce, potato soup, chicken noodle soup, and of course yogurt!  This therapy is working J

The clinic sent me home with tons of pureed foods for the weekend.  Between the meals here at the house and this food from the clinic, I am pretty spoiled now!  Not sure how I will transition back to real life after eight weeks of this!! 

The best part about Friday was picking Eric up at the airport!!!  Gavin had been telling everyone since Wednesday that his daddy was coming.  About an hour before we left for the airport, he like a recording on repeat saying “My daddy’s coming and I’m going to hug him and tackle him and we are going to giggle lots!”  I wish I had a video of Gavin running up to Eric at the airport!  The Evansville airport is tiny, and security is right next to the gate, so you can just about see people coming off the plane.  There was a crowd there waiting to greet people as they came off.  When Gavin saw Eric he started yelling “that’s my daddy! That’s my daddy!”  Once Eric got past the security Gavin took off running through the crowd into his arms.  It was very sweet J

We had a great time with Eric here, and it was SO nice for me to have a little break and help!  I think I only changed two diapers the whole weekend, and Gavin is known to pee a lotJ.  I was also able to sleep through the night for the first time in two weeks as Eric woke up for the 2AM diaper change each night.  It was great!  Saturday was a beautiful day here in Evansville, so we were able to spend some time outside at a park down by the river and the transportation museum.  Eric took us out to a really nice Italian restaurant to celebrate my birthday.  It was so nice to be out again and feel like a normal person.  The best part was that we got to celebrate with some amazing red wine!!!

Eric brought a little bit of mail Gavin had received from home.  Gavin was very excited to receive Valentine’s Day cards from his Great Grandma (my mom’s mom), Great Grandma’s friend Marybell, and Aunt Grace (Eric’s Aunt).  Thank you guys, Gavin loved the cards!!  Aunt Grace sent him two dollars, and Gavin decided that he was going to pay for dinner with it.  It was so sweet, Gavin tried to hand the waiter his two dollars when we got to the table saying he was going to pay!  The waiter said we could split a coke if that was all we hadJ  Gavin quickly decided that he’d rather save the money to buy a toy later!

Eric was also happy to see Gavin’s progress and how much happier meal time is!  I successfully fed Gavin four meals each day with no tubing!!!!  I am especially proud that Gavin ate the highest volume in one sitting that he’s ever done, 8.5oz, and it was with ME feeding him here at the house!  Last weekend I was a little frustrated because we did well on Saturday but really seemed to regress on Sunday.  Thankfully that did not happen this weekend.  Eric’s parents were able to watch Gavin eat while we talked to them on Skype, and they too were impressed with how far we have come in just two weeks.  Other than a few moments here and there that reminded us that our struggles are not over, Gavin accepted all of the different foods that we had tried in clinic almost like he liked them!  We can do thisJ

Saturday morning was a little sad as we had to say goodbye to our new friends Noah and Jennifer.  It is amazing what a connection you can make with a stranger in a matter of minutes.  Jennifer is such an amazing, strong woman and mother, and I am so lucky to have met her and know that I will always have a friend who “gets it.”  Noah has come so far in his struggle, and I look forward to seeing how he grows into a healthy little boy and a good eater!  Gavin will miss his new “cousin”!  Noah and Jennifer gave Gavin a little dog “Tee-tee” to remember them and take throughout his journey. 

Jennifer and I have also become good friends with a mom, Lacey, who has a little boy in the NICU.  Lacey has joined us for playtime/mom time with the boys each day, and she is such a sweet girl.  Jennifer and Lacey got me one of the Willow Tree figurines “Surrounded by Love” to remind me that they are always there for me.  I am so touched by their friendship and am so lucky to have their support as well through this journey.  Thank you girls!!!!  

Tonight we said goodbye to Eric again.  Gavin decided he wanted to go with him and tried climbing into Eric's suitcase!  Poor kid fell asleep about a mile from the airport and did not get to say goodbye to Eric.  We took him into the airport and tried to wake him, but he was out!!  Thankfully Gavin seems to have accepted our new living arrangement, and while he did call for Daddy a little when he woke up, he quickly calmed down.  It helped that my sister-in-law Jill had just sent a video of her boys have a dance party!  These cousins love their dance partiesJ.  Gavin was very easily distracted by that…thanks Jill!!!

Also thank you again to all of you who are following along.  Your messages and emails have meant so much to me.  We are lucky to have all of your love, support and prayers!!  Thank you!!

Week 2, Day 4

It is hard to believe that we have only been here for two weeks, but at the same time it kind of feels like two months already!  Thank goodness tomorrow is Friday and Eric will be here.  We went out to dinner tonight with some of our new friends, the other mom from the feeding clinic and her little boy Noah and a mom with a little baby in the NICU.  It was so nice to get out and feel like a normal person again!  We were finally able to get some much needed margaritas!!!  Alcohol is not allowed in the Ronald McDonald HouseL.  That was one good margarita!!! Noah’s last day at the clinic is tomorrow, and we were celebrating the amazing progress that he has made.  We are really going to miss them when they’re gone.

Gavin had an amazing day in terms of volume!  He consumed 34.5oz of food/PediaSure, which is more than he needs.  They track his weight pretty closely, so it will be interesting to see what happens.  We even moved up to toddler spoons on Gavin’s preferred foods, which are still really just yogurt and the banana/applesauce puree.  I brought the Mac & Cheese from last night’s dinner, and Anna incorporated into one of Gavin’s meals!  He ate .28oz of it before his chewing started to slow, and it was clear that his muscles were getting tired.

We also had to go for blood work today to check Gavin’s sodium levels.  The older Gavin gets, the harder this becomes.  He is extremely hard to draw blood from.  During our hospital stays in the past they have had to have nurses from the NICU come to get blood from veins in Gavin’s head.  Two of the most important people in Gavin’s life are the only two ladies who are able to take his blood at Texas Children’s Hospital, Rennet and Sophia.  I wish we could fly them up to Indiana for the next six weeks!!  We were sent to one lady in the basement of the hospital’s office building who is supposed to be a vein whisperer.  The room they have was so warm and inviting!  They had stuffed animals all over, even hanging from the ceiling.  It worked well to distract Gavin.  Unfortunately, this lady had numb fingers for whatever reason and at the last minute had to call someone else in to get the blood.  He was able to get it on the first time, but poor Gavin was very vocal for the rest of the day that it hurt a lot. L  Immediately after they took the blood, they handed Gavin a big Snoopy stuffed animal to have!  Apparently they don’t do stickers here… Gavin was happy about his new dog and carried him around all day.  I had also saved for after the blood work a little video that my sister in law had sent me this morning of Gavin’s cousins Ruth and Ben having a dance party.  Thankfully that helped to distract Gavin as we watched it 20 times!!!  Thanks Katie!

The other not so pleasant excitement for the day was the weather!  We had tornado warnings for most of the afternoon and evening.  It was pretty creepy when they came over the loud speaker in the clinic and announced that there was a Level 1 Tornado Warning!!!  Apparently that means you need to close all of the blinds.  Dr. Clawson, who is from the east coast and is also not a fan of these tornado warnings joked that it was so you don’t see them coming.  We couldn’t figure out how closed blinds would actually help during a violent tornado, so that seemed like a reasonable explanation!  It is also a little strange that the tornado warning siren in town also goes off as a thunderstorm warning.  How are you supposed to know when to run to the basement?!?  I would prefer to just stay in the basement all day if they would let us!!!  Thankfully, the tornado warning seems to be over.  I never thought I’d say this, but I actually miss Texas and the hurricanes that they see coming from miles away!

Gavin got another Valentine’s Day card in the mail today from Aunt Janet and Uncle Bob!!  Thanks you guys!!  Gavin carried it all around the room telling me Happy Valentine’s Mommy!!  He enjoyed the mailJ  

Here are some more pictures from the past week!