Day 19: Last Day!

Today is day 19! And that means it's the last day of our inpatient stay! It was a good day but I had mixed feelings about going home. But overall I'm so happy to be home.

The day started off with a challenging breakfast with just me and Whitney in the therapy room. The therapist was there too but she sat back away from the table. She only ate a little bit of watermelon and some chocolate Boost Kids Essentials. We're doing good with working through her behaviors and sensory issues but it's still hard to get her to take a consistent volume at every meal. It's something that she needs to do to progress. 

Then for the morning snack with me, Whitney only drank 2 ounces of her BKE and ate two Teddy grahams. She was actually way too excited to do much. Because she was going to dress up as Tinkerbell and go trick-or-treating! So we were both excited for our family to come and get dressed up and go trick-or-treating.  I also started cleaning up the room while we waited.  My husband had taken half of our stuff back to our apartment last night and stayed the night, then he took a test in the morning and drove back to camp CHOC. 

As soon as daddy, gramma, and Cameron came we went downstairs for the big trick-or-treating event. It was huge and very exciting. A little over whelming but still fun.

I'm Mr. Smee! 

Our white board! 

Apparently Halloween is a big deal here! They had costumes available in the playroom, but we brought our own because we knew he would be here for Halloween. Here's Tinkerbell and Peter Pan!

I took a ton of pictures so I decided to just put them in a few collages! There were so many people handing out candy and toys, and even some gift cards and coupons! It took us about an hour to go through the whole thing and there were a lot of other patients there too!

We had one more feeding therapy session before we were discharged! So at 12 PM Thomas and Whitney got to have a meal alone for once! Thomas had the "bug in his ear" and the therapist was telling him that he did a great job and giving him some points. My mom and I left to pack up the room some more. But I came back in for the last 15 minutes to watch the session. I thought Thomas did a great job and Whitney seemed very happy too. I know that Whitney ate a bunch of string cheese but I'm not sure what else she ate. And I also know that she drank 8 ounces of her strawberry BKE! We were so excited to end our last meal on such a good note!

Shortly after that we had our big team meeting and this time Thomas got to come too. It was very informative and productive. We went through all of Whitney's goals and she met some of them and is still progressing with most of them. We also went over our goals for the "fourth week" which is at home where we will be trying to keep to the schedule and making sure Whitney gets the nutrition she needs. We have a lot of follow-up appointment with G.I. doctor, pediatrician, and feeding therapy. Also this week we're going to just stay home and focus on Whitney's eating skills... so one more week without church and preschool for now but next week will go back to normal and try to integrate that into Whitney's feeding schedule.

I love this group photo! Seriously, these people were like my best friends for the past 3 weeks! This amazing multidisciplinary feeding team is like a family. From top to bottom left to right we have Amanda, Tessa, Jessica, Sarah, Robyn, Dr. Katz, Cindy, Whitney, Jen, Erin, and Audrey! Missing is Alyce (one of the dietitians) and Amber (the "conductor").

We finished packing up our car and we all piled in and left the building! Unfortunately it was right during rush hour so what usually takes us an hour or less took us over three hours to get back home. Whitney ate a lot of some kind of fruit stick in the car because she was hungry! So fun! Both kids took a nap and eventually we made it back home! Our apartment is covered in our luggage and all the fun extra things we brought home. Whitney did pretty good that night... we asked her if she wanted chicken nuggets or pizza and she chose pizza! So daddy went and picked it up! She did a good job eating the pieces I cut up for her and she also ate an apple and drank a lot of BKE. She also ate a little piece of a candy necklace later. It's so nice to be home and to be free to do what we want! It will definitely take some time to get used to the schedule but it will actually be a little bit easier then tube feeding her five times a day! And I'll use that time to prepare her more meals!  Please pray that our family can keep up the skills and progress at home that we learned at camp choc. And that Whitney will eat and drink more

Weight: 15.0kg

Day 18: Going Good

I can't believe we are going home tomorrow. It's been a really long journey and it's not over yet! But it's going good today and I'm so happy for Whitney and her accomplishments. I'm excited to go back home and figure out our own routine and help Whitney to learn more. Excited to be with my family and make meals and snacks for us to eat. The therapists have been telling me to think about how things are going to be at home and try to have a game plan for the next week. I am just so grateful to have been able to have this opportunity to be here at camp CHOC and to help Whitney learn how to eat. I'm grateful for my family and my friends who have helped us so much along the way. We really appreciate all the hard work that Whitney's therapist throughout her life have put into her well-being. We are so grateful for the doctors and nurses with their knowledge and skills to also help us. And of course we acknowledge Heavenly Father's hand and all the good around us. 

For breakfast, the therapist took Whitney and I to a cafeteria in the St Joes hospital across the street in the basement. We went in a quiet room that was still part of the cafeteria, kinda like restaurant table seating. Whitney had fun and did well. She tried Raisin Bran Cereal for the first time and loved it. We did a sticker chart again to help motivate her. 

Then she painted a picture and we got ready for her little party. She had spilled a lot of chocolate milk on her outfit during breakfast so I changed it.

I had asked Icing Smiles if they could help us out with some cup cakes! They asked Shauna at Curious Cupcakes to do it for us! The cupcakes were beautiful and delicious! Only 4 of the team members came though. And Whitney only licked the frosting a few times. 

"We Believe In Whitney"

Little brother Cameron devoured his frosting. Best part I guess.

I love my collage with Whitney and Shauna surrounded by the cupcakes! 

For lunch we had Daddy and Cameron in with us. I started out leading the meal while daddy took care of Cameron. It was a little bit overwhelming again for Whitney but she did her best. After about 15 minutes Cameron was finished eating so we excused him from the table and left to go play with Gramma. Then I let daddy take over the lead of the meal and I gave him the "bug in the ear" so he could listen to the therapist. He did really good and I'm glad he got the opportunity to do that. We did the sticker chart again for Whitney and she really seems to like that. We tried to get her to take bites on her side teeth and not just small nibbles with her front teeth.

Then we went to turtle talk one last time. It was fun and we're going to miss it. Then Whitney watched Peter Pan because she's really excited to be Tinkerbell for Halloween tomorrow. Daddy took Cameron home this time while Gramma stayed to be in on the snack session.

Snack time was interesting. I lead the meal and therapist was there to help and Gramma was there to cheer Whitney on and be a good model. Started out with Whitney refusing to even lick a piece of broccoli. Which is not a new food and she is actually ate it a little bit a few times before, so my request was not unreasonable. But she did good drinking and really wanted to eat her goldfish. In the end it went really well and we got to teach Whitney some new things. Gramma also learned a lot too and she did really good during the meal being a good motivator and example. 

Later Thomas picked my Mom up and then went back to the hotel. Thomas has to go back home and has to go to school in the morning to take a test and he will come back to pick us up tomorrow.

When our dinner tray came Whitney was happy to sit down and get started. We ate some sun chips, watermelon, juice and a new food… A hotdog! At first she was just eating the bun and then I asked her to try the hot dog and she said she loved it and then she took a lot more bites of it and kept going when I didn't even ask her to do anything. It was really fun watching her enjoy it.

After dinner, we watched Wreck it Ralph, so we had her snack on her bed. She did good eating a couple Ritz bits sandwich crackers, couple apples, and some drinks of her chocolate BKE.

Photos of the Day: throwback Thursday Halloween on the right is the year 2012 right before Cameron was born and on the left is the year 2013!

Weight: 15.0kg

Day 17: challenges

Today was a bit more challenging for most of our meals. Which isn't necessarily a bad thing. This isn't a race to see how fast Whitney can be tube weaned, it's a really long journey to a better quality of life. I believe that this program was the jump start we needed to help us and Whitney be able to tube wean. It's good that we are all learning how to mange Whitney's behaviors here so can apply it at home. Speaking of which we only have 2 days left here! The first two weeks seemed to drag on while this week is flying by! 

Daddy got to lead breakfast again today! He did great working through Whitney's behaviors and figuring out how to calm her down and bring her back to the meal when she gets overwhelmed by the expectations. Whitney ate 1/2 a strip of bacon, 6 Cheerios, and 5 oz of milk! 

Daddy also lead for our stack time in our room. It was also pretty challenging and we could only get Whitney to eat one pretzel and 3 ounces of her milk. She said she was full and I didn't want to push her again this time. Then she said that she had to go potty! She's been a little bit constipated while here and that does not help with her appetite. So after she went potty she felt much better I think.

For lunch at 12 PM, Cameron got to join us! So it was just our family daddy mommy Whitney and Cameron. It was so interesting to see us all together and get a feel for how it would be when we go home. It was a bit chaotic with an almost 2-year-old with us. So daddy was in charge of Cameron and I lead the meal with Whitney. I could tell that Whitney was pretty overwhelmed with the situation. She did good at first it into Sun chips, but when I got out some chicken strips and fries for her to try she pretty much shut down. I had to stand my ground for a long time to get her to at least lick apiece. She also drank 4 ounces of grape juice during the meal. Meal lasted about an hour but half an hour in we excused Cameron because he was done. 

She ended the meal on a good note so we were able to go down to turtle talk afterwards! The kids love it and I heard Whitney talking all about being Tinkerbell for Halloween again!

They finally had a good movie playing at the theater, it was despicable me. They also gave out a free Blu-ray of that movie to everyone that came! Whitney was laughing a lot so it was really fun and nice to be there with her.

Daddy was with us again for our 3:15 PM snack and a therapist was in the room also. But this time I got to lead again so that we could let Whitney know that I was still in charge. She did a bit better this time and ate six goldfish, about a quarter of the string cheese and 3 ounces of her BKE. It was interesting to be able to tell apart how Whitney is feeling. For instance lunch it was definitely more of a sensory overload but for the snack time it was more of her behaviors like say no and laying down on the table. 

We relaxed for the rest of the afternoon until it was dinner time. Daddy was the leader of dinner and he did great with the new chart that we implemented during snack time. Whitney likes it I think and does good at putting the stickers on it knowing how it works. She ate half a teaspoon of her cheese quesadilla, a little bit of potato soup, over 20 small bites of a chocolate chip cookie, and 5 ounces of her juice.

After our shower I got Whitney to drink two and a half more ounces of her chocolate BKE and then we got to paint her nails. She didn't fall sleep till about 930 tonight!

Photos of the day: Our kids with our parents! I'm beyond happy that Whitney won't have to wear her back pack around all day and bring it everywhere we go when we get back home! 

Weight: 15.1kg that's an increase! 

Day 16; Daddy's Turn

It's been just Whitney and I for about two weeks here at camp CHOC! We love being here learning how to eat! We have also done a lot of fun things together! 

But now it's Daddy's turn to learn to co lead and lead the meals! For breakfast, he got to go in the room with the therapist for a meal while I waited outside and watched! He watched and learned about what to do during a more difficult meal and it was pretty stressful.  Whitney ate 10 front loops and drank about 5oz of BKE. 

Snack time with me went much better except for the vomit part. Whitney ate 4 teddy Graham's and drank 6 oz of milk before she thee up. She was having as usual with the teddy grahams and drinking her milk in between with out too much asking. But I noticed she didn't look good so I asked if she was okay and how her tummy felt. She said she was fine and felt good. Then she drank some more and gaged and said I need to barf. I've never seen her gag on the milk before and I was sad that she threw up everything. I had a talk with her about trying to figure out how her body feels and works about eating. Then she wanted to finish her cup of 2 oz of milk. 

Cameron comes in and finishes his sisters meal just like at home! 

Bubbles and games fun! 

Lunch time Whitney and I ate together while Thomas and the therapist watched and listened from another room. Whitney ate a little pita bread, 1 tablespoon of Spanish rice, and drank 4 oz of juice! She still stalled and had some sensory overload but we over came them and she did well. 

Cameron with Dora

Playing outside

Then Gramma and Cameron went back to the hotel for a nap and Thomas stayed for snack. He lead but it seemed like we all lead. I helped with the reward and Thomas made the expectations. Whitney ate a little of sandwich crust, strawberry, string cheese, and strawberry flavored BKE. She seemed engaged and liked the reward which was a very hungry caterpillar game/sticker board. 

For dinner with Daddy and I, Whitney did okay too. We had fun eating some sun chips, a little quesadilla, tried a bite of a fish stick, and drank 3 1/2oz of juice. Then he had to go. Some volunteers gave us a craft that we had fun with. Then Whitney colored in her princess book and was not happy to stop for snack time. 

Whitney ate a little chunk of watermelon and drank 2 1/2 oz of BKE chocolate. Then she went right back to coloring and was again not happy to stop and go to bed. 

Photos of the day: My Cuties!

Weight: 15.0kg

Day 15: A Happy Day

I'm glad today was a happy day! Especially because it was my birthday! 

Breakfast went alright, Whitney ate a little bacon, pancake, and 2 oz of BKE. When I say a little I mean just a few small bites. 

I told Whitney it was my birthday so she found my candle and sang to me! :) 

Snack went well, Whitney ate some muffin (cupcake!), and some milk! 

Afterwards Thomas, Cameron, and my mom came over! The kids finally got to paint their pumpkins. Whitney had been asking all night and day to do it. 

Then we had lunch! I was in the room alone with Whitney and had a 'bug' in my ear to listen to the therapist outside the room. She stayed out there to explain everything I was doing to thomas and mom. She really didn't tell me much at all about what to do and just said I did really good. I'm glad my husband can learn how to feed Whitney this week! 

Twenty eight years old!! 

After that my awesome mom stayed with my kids while Thomas and I went out for ice cream!! So thankful that I could get a little break on my birthday! We also got some real food to eat! 

We got back just in time for afternoon snack. We did the same thing with just me in the room and Thomas watched and was told what I was doing. It was weird being like there therapist but also cool! I guess I did a good job again because she didn't say much to me. Sometimes she said yeah that's what I was just going to say to do! Whitney ate a little string cheese, banana, and 5 oz of strawberry milk! It's not necessarily the amounts of food she eats that count but it's the quality of the whole meal. Trying to teach her appropriate bite size while sticking with preferred foods. And of course we want her to eat more buts it's a very slow process. This program is awesome though at teaching how intense this has to be to help Whitney learn how to eat. 

Dinner time was a bit silly but Whitney ate a little apple slice, some hamburger bites,  licked lots of ketchup, and tried a tater tot! She thought it was so funny that I asked if her nose could take a drink and when she tried it I said gross! So we kept doing that over and over again! Cutie! 

I got a few nice things from my mom and mom in law and tons of happy birthday wishes from all my family and friends! 

Whitney got to choose her snack tonight and string cheese it was! She ate about a fourth of it! 

Whitney was so cute playing with her whales till she fell soundly asleep! 

Photos of the day: Whitneys fourth birthday and my first birthday as a new mommy! 

Weight: 15.0kg it's going down but no worries yet... She is still 94% range of her ideal weight! If she losses too much more and goes 10% below her ideal weight range then we will have to do something else. Whitney is still only getting 8oz of formula plus 5 oz of water via feeding tube at night. Please pray that she can eat enough to gain weight and stay healthy!