Day 14: Morning at the Park

We started our Sunday off with a small breakfast in our room here at camp CHOC. Whitney ate a little bit of the bagel and sausage sandwich and some of her milk. Then we headed over to the Ronald McDonald house for a nice breakfast. It was just as good as going out to eat but free! Whitney started off with a few bites of celery. Then I got her a plate of bacon, strawberries, and a muffin (all preferred foods), but she didn't want any of it. So I just got her to drink about 3 ounces of her milk again. We were there from about 9 to 10 AM. Then we all left to go to Irvine Regional Park. It only took about 20 minutes to get there and it was already packed! 

I didn't realize you had to buy tickets to do everything and it was expensive at five dollars per ticket and everything cost at least one or two tickets. But they had a cute little zoo that only cost two dollars each so we did that first. The kids really enjoyed it and it was covered in Halloween decorations! 

Then around noon we found a picnic bench for lunch. Whitney started off with an apple slice and then took a few little bites of her peanut butter and jelly sandwich we packed along (mostly licking a little pb and small bites of the bread).  Then she drank an ounce of her milk but when I tried to get her to drink one more ounce she started to whine and cry and refused to do it. So it took a good 15 -25 mins or so of me trying to get her to do it. I tried to give her choices, start at the bottom of the steps to eating, I went from four drinks to three to two to one to make it more reasonable. The meal needed to end on my terms and not her crying and getting what she wants. I told her about the fun things we can do like finding a pumpkin and playing with Gramma. She really wanted to do those things but she still did not want to take one drink of milk. Eventually she said that she wanted to take a bite of her sandwich and then a drink. So I was like, okay let's do that then! So she finally got to be done and have more fun. That was so tough holding my ground and thinking of everything I learned to help her eat. Honestly I think she was the one testing me, trying to see what I would do; like would I go back to my "nice self" and just let her do what she wants or is this new eating thing for real!? And I expected her to eat. I know it was a new place but she was doing great at first, just like during our meals at CHOC. I think I was even clenching my teeth because I was stressed and was clenching them the whole time at the park, thinking about the meal all day long and by the time we got back I had a headache that lasted the rest of the afternoon and night.

I'm glad we got some fun pictures on pumpkins and in the (free) hay maze! 

The lines were long and the rides were expensive for us but we still had fun doing the free stuff! The weather was perfect! So nice to be outside and with family! It was time to leave around 2pm and get back to camp CHOC for the rest of the meals. Cameron was tired! As we left, the line of cars was so much longer to get in! Maybe it's just super popular/crowed on the holidays and weekends!?

Getting back to the routine was nice. Whitney threw a few more fits about random little things like needing help to go to the bathroom. Because of that I thought the 3:15pm snack was going to be terrible. Well she really didn't eat much of anything but she did drink 5 ounces of juice. We had ended early and do a bit of quiet time. I actually fell asleep ha ha! 

Whitney was also unhappy to eat dinner but started off with her pizza. She licked the sauce a couple times and then she took a bite and we did that for a while. She ate two pieces of corn and about a tablespoon of Spanish rice, and she actually drink 7 ounces of her BKE! Some volunteers came by with some crafts and we picked a rock to paint! So we did that while she was eating and it was fun.

After snack we watch Tangled the movie. A little bit into it we took our package of popcorn over to the nurses station and asked them to pop it for us. Then we put it in a bowl and continued to watch our movie. Whitney ate about four pieces and it was cute watching her nibble on the popcorn while she was watching a movie. She kept saying this is yummy! 

She eventually fell asleep around 8:45 PM. I don't know how she can have energy when she hardly eats anything and has a busy day!  I'm excited for tomorrow to get my family involved in her feeding sessions and learn more! 

Photos of the day: family photos from last November! 

Weight: 15.1kg 

Day 13: Morning at the Beach

This morning Whitney and I ate breakfast but we were too excited to see Cameron. She only drank 3 oz of chocolate milk (BKE), and few bites of her bagel with a sausage patty on it. We got all ready to go on our adventure to the beach. Daddy came first and then Cameron with my parents! My (big) baby boy ran to me and gave me a huge hug! He kept saying my name as if it were a question and that he was so happy to see me. I myself was crying with joy. It was pretty much magical. 

I guess the night nurse put the rail up on Whitney's bed last night. Whitney would not get out until the nurse came to put it down even though the other side was open. :) 

We signed out and left the building!  The kids loved watching the Finding Nemo tank but were more excited to go to the beach. I kept telling Whitney that we were going to eat a snack first then we can play. 

Apparently Cameron won't hold ours hands anymore and only holds his own hands! 

Whitney was fine starting our day out with a small snack. It was so fun to picnic on the beach! She drank about 4 oz of BKE, half an apple slice, and two pretzel sticks. It was fun having Cameron and family eat with us! Whitney still needed a lot if encouraging. I remember that we always try to feed her food before and during her tube feelings but if she didn't want it I never pushed her to do it. So this was totally interesting to see her try to refuse to eat and then realize that I'm not changing my new standards. 

Lunch was a bit more difficult because Whitney was already having fun. She just came in from the water and was rolling around in the sand. She wanted Gramma to dig her a whole and bury her legs. So I said we can do that after we have our lunch picnic together. It was rough getting her to sit and try to eat. But we did it. She basically shut down and told me no for a while. Then I started playing with the teddy grahams and she was interested. She finished her drink with another 4 oz and ate 2 teddy Graham's in about 20 minutes. So not bad at all considering we were in a totally new environment with lots of people. This was our first time not tube feeding her at the beach! Plus she didn't throw up like she usually does there! 

Whitney loves to write W's in the sand, and hearts, and her whole name!  She also loves to play in the waves!  Cameron's also loves the waves and exploring! It was awesome to have my parents here to play with the kids while Thomas and I soaked up the sun and talked and ate together. 

So happy together!! 

We only spent about four hours out and that felt great. Everyone else went back to the hotel and Whitney and I back to Camp CHOC. We showered and cleaned up before snack time. Whitney ate about a tablespoon of muffin and 6 oz of boost drink supplement. She loves to do these mazes as a reward! 

She watched Happy Feet till dinner time. She started off solid, eating the crust of her grilled cheese sandwich and drinking lemonade (sugar water). I busted out the celery and carrots and got her to dip it in cream cheese. Then she took a bite of the carrot and gaged and threw up.  Note to self: don't give her carrots until she can handle them! Whitney loves to eat them but it seems like almost every time she does, she can't handle it and vomits. She said she was tired and wanted to go to bed, so I had her finish her drink and off she went. 

She needed the calories of her night snack but she was too tired and so was I. She didn't even ask for her snack, which I thought she would have. 

She stayed awake in bed for almost 2 hours. She was literally waiting for the nurse to come tuck her in because she fell asleep a couples minutes after the nurse left. Guess next time I'll ask them to come in sooner, hehe. But she didn't start her night drip or meds yet because we want to wait till she falls asleep! 

Tomorrow we have plans to visit the park! I chose these destinations because they are outdoors and relaxing, fun, and familiar.  Goodnight everyone! 

Photos of the day: family at the beach in June 2014! 

Weight: 15.1kg 

Day 12: Rock 'n' Roll

When we left the room for breakfast today I said to Whitney, "ready to rock and roll!?" She was like what!? Haha. I said it to her all day and soon she would say that I'm rock and she is roll.  But Whitney really did "rock and roll" today at her meals!  

For breakfast Whitney ate little bites of toast and strawberry, and drank 6 1/2 oz of chocolate milk boost kids essential! She still whines a lot and gets distracted. If she is feeling too overwhelmed or anxious then she starts flapping her hands and playing with them and making noises with her mouth. We use to ignore this last week but this week I'm trying to use it my advantage. I give her some sensory input and try to see what her hands are, sometimes they are horses or monsters. So I try to be creative and involve them a little bit then Whitney seems more willing to continue eating. 

Snack went well also with Whitney eating one small apple slice with peanut butter (awesome that she dipped it a few times), 4 teddy Grahams, and 2 1/2 oz milk.  Afterwards she got to go to the play room for lots of fun! I can actually hear her from our room, having fun! 

We turned our mat over to reveal a town and map to drive on! Fun! 

Lunch went pretty well I think but Whitney told us she was full so we asked her to eat one more goldfish cracker to be done. But she gagged on it and threw up everything. She had "only" drunken 4 oz of BKE and 5 goldfish crackers. Maybe she was full or maybe she simply gagged. Hard to tell but we are all still leaning about how her body can tolerate all this food and we are trying to help her understand how her body feels. It's a learning process for sure and one that will take a long time to understand. She drank a little more after her emesis and was coughing a lot. 

Shorty after lunch was the big team meeting! A volunteer came to sit with Whitney while she watched Bolt on the computer. He said our room was big and wondered how long we were here for. So I happily told him why we were here and about Whitney!  Anyways the meeting was awesome and so positive! I'm so happy that Whitney meet and or exceeded all of her goals!! I'm excited for my husband to learn how to co-lead and lead the meals. It will be so helpful for our whole family! 

Here is an outline of our meeting:

We got a nice package from our friends from Breathe of Hope (CDH awareness group)! She even contacted my husband to add a little something special to our package...a bath and body works candle! And hand sanitizers just for me! Smells so good even when not lite! We also got a nice letter from our friend Grace!

Whitney watching her movie Bolt! 

So we got to do something new for snack! The Therapist suggested we go some place else, to kinda prep for the weekend outings. I jumped at the chance to go anywhere else but our small room we have our feeding sessions in with the therapist.  So we went outside to see how she would do in a new setting.  I think it went pretty well and maybe even a tad better than usual. Her intake wasn't great   and she was distracted a little by all the new things but it wasn't hard to get her back to eating. She ate a one apple slice, 3 ritz cheese mini cracker sandwiches, and 3 1/2 oz of BKE. It was fun actually and I thought Whitney looked so beautiful  eating in the outdoors! 

Whitney and Sarah! 

We stayed out side for a while longer. Then went to the "library" for a book, movies, and to play with the iPad. 

Dinner went well too! Whitney ate  a 1/3 piece of her bacon, a little banana, a few bites of pancake with butter, and 3 oz of grape juice. She got to have fun in the shower afterwards! 

For snack, I introduced to her the goodness of milk and cookies. ;)  She totally ate 1/4 of a regular-large sized chocolate chip cookie and drank 3 oz of milk. We still have to show her how to dunk the cookie in the milk but this is definitely going to be a thing around my house now! I'm excited to bond with Whitney on a whole new level! 

So we get to go out of the hospital tomorrow and I'm so excited! But I'm also freaking out about actually depending on food to keep her fed and not the tube! This is a huge jump for me! I'm so nervous and I'm going to bring my tube feeding supplies. I don't know how else to calm my self and feel safe. I will probably do this till she is completely weaned from the tube. But she will not receive a tube feeding while we are out trying to generalize her skills in the community, not even water!  And I'm super excited to see my baby boy and husband and family! Stay tuned for tomorrow's blog about our adventures! 

Weight: 15.1kg

Day 11: Drinking Cartons

"Wipe-out Whitney" did not wipe out today! Mealtimes weren't perfect by any meals but her food and drink volume seem to be increasing.  She didn't complain about her cheek at all today and we mostly focused on her drinking skills. She ended up drinking 28 oz total today! That's 3 1/2 (8oz) cartons of liquid supplement! 

I can't believe we are more than half way done with this inpatient intensive feeding program! 

Breakfast was interesting, I didn't offer her most of the food we got her and just focused on drinking and the crunching. Whitney drank 4 oz of boost kids essential chocolate and ate a tablespoon of Rice crispies! I had ordered her a grape juice but she says she wants hot chocolate like me in the mornings so I switched it out for a chocolate BKE I had in the fridge! 

Whitney then ate 4 teddy Graham's and 3 oz of the grape juice for snack time. It's not much but I'm still trying to be consistent with our rules and rewards.  As you can see this was pretty much how she felt about our snack time this morning.  But she perked up when she found out she could go to the play room afterwards! 

Photos of the day: my newborn Cameron almost 2 years ago now! 

For lunch we started out with a hamburger, which she took some good bites on her side teeth and ate about a teaspoon of it! Sometimes it's difficult to measure how much food she eats.  We worked on peas again by having her smash them in the shape of a W on a piece of paper and telling her to lick them before she could smash them!  Eventually she ate two green peas. In between all this we were giving her drinks of strawberry BKE and also rewarding her with the drinking because she likes it! Whitney drank a total of 7 oz!! I didn't believe it at first! 

Whitney seemed to have more energy and did so good for lunch that we went to see turtle talk again! It's totally cute watching her talk to Crush! She was saying something about the Orange Car (the color of the jeep we drive) and Crush was like oh is that a true or false question!? I'm going to guess true! And Whitney's like yeah! 

She didn't want to go outside but to the play room to make a craft. So we went and colored bookmarks. Then I was reminded to fill out her menu for tomorrow, I was having so much fun that I actually forgot for the first time.  So I left her there to play games with the awesome volunteers. 

Then it was time for afternoon snack at 3:15pm. Whitney was hungry and ate a little strawberry, apple cinnamon muffin, six Cheerios, and drank 4 1/2 oz of vanilla BKE! I'm getting good at redirecting her and trying to keep her focused and engaged in the food while also still having fun and staying positive about everything she is doing.  I didn't even have to pull out any books or games. Afterwards she watched Cat in the Hat shows but she was more interested in lining up her stuffed animals. 

For dinner we had a new food, Alfredo spaghetti. Well she had spaghetti before but with the red sauce not the white. So she enjoyed licking the sauce and got to do 5 licks in between drinking. Whitney drank a total of 7 1/2 oz!! Can you believe it!? That's almost the whole carton of milk! I almost cried with joy! Although I was still scared that she would throw up! I was just waiting for it to come back out but it didn't! 

I'm not expecting her to do that every time of course. But now we know she can and she is amazing. I'm glad we focused on drinking today. It seems to be a lot easier for her because she gets pretty worn out after chewing and getting motivated to eat solids. Whitney still gets most of her calories from liquid supplements but we are still working on solids every meal. 

We got to go outside and see the red balls light up and sort of watch the sun set. When we went back inside, I went down the wrong hall and we got nervous so we held hands and ran out a there. Whitney was smiling the whole time pretending that we were scared! Then we ran down the right hallway and almost into a huge cleaning machine that a man was pushing along. I gasped because it really did startle me (if you know me you know that I scream or gasp loudly, a lot).  Then we walked nicely by the security guard and said hello. And then we ran down the hall way to the elevators still pretending we were scared! We were safe back in our room. 

I only got Whitney to drink 2 oz of drink before bed time. She was laughing a lot still and stayed up till 8:30pm and we both fell asleep! I woke up later to blog late now. 

Can you see her on the far end of her bed?

I wanted to post some of the super helpful handouts about methods we use here with Whitney.  Positive reinforcement  is never about punishment, especially associated with meal times. We don't say she doesn't get to do something during the meal but at the end it's her choice if she wants to comply with the expectations or not.  Whitney also responds well to verbal praises like "good job, you're almost there/done, keep going, you can do it I know you can." And physical rewards like high fives and hugs and sensory input like joint compressions and facial stimulation. Then there's the steps to eating. Example the peas today, she's eaten them before but to day we had to start with having Whitney tolerate them, by holding and then smashing them. The we got her to lick them and kiss them. And using the positive reinforcements and if then's, she ate two peas and that was as far as we wanted to push her and challenge her. It's a lot of work to stick with this and I'm not perfect at it that's for sure! Whitney's first few years were spent on the first steps of eating. Remember that every child is different and even every family so I'm not trying to compare us and our situations and experiences with anyone else. Thank you again for all the prayers and support on our behalf. We truly appreciate them and are so grateful for our family and friends and team of specialists here at camp CHOC. 

Weight: 15.1kg 

She lost 100g but that's because we took 100ml's away from her night drip last night. But she totally made up for it by the end of the day with all her drinking! Yesterday ( wed.) she consumed about 550 calories by mouth! I'm loving this progress and hard work!