Day 4: Going Strong

We are still going strong here at camp CHOC! I feel like Whitney is improving and reaching most of her goals. It's very exciting to see her eating and drinking a bit more everyday.  We are keeping to the schedule and getting to have fun too.

We finally got to meet and talk with the other family that is here in the program. It's a little boy just a few months older than Whitney. The mom, dad, and older brother are here too but they all get to go home tomorrow. It was nice to discuss our challenges and hardships with each other about our child's eating difficulties. We have a lot in common and they actually live close by the hospital. I'm excited for them and they think they will be able to "pull the tube" next week for their son! 

Morning snuggles and silly faces with my cute girl! We both had a very good nights sleep! She got her meds and night drip of 480mls of formula last night. Whitney does not get any formula during the day and I hope to keep it that way! 

Whitney seems to be doing her best at breakfast time with the therapist.  She drank 2 oz of strawberry boost kids essential, ate 5 whole fruit loops, and took nibbles of bacon, eggs, strawberries, and waffle! 

Whitney also did very well with me for morning snacks. She ate 4 twist pretzels, 1 slice of apple with the skin on, and an ounce of Apple juice! 

She didn't eat the muffin but we may try that one again later!

Relaxing Whitney 

We like to go to the play room for a bit before lunch time. A sweet dog came in and Whitney enjoyed petting him! 

I decided to stay in the play room this time to make my own sign for the door. Volunteers who don't know what we are doing come in to our room and tell me about fun things to do and ask me if we need anything, which is totally nice but not during mealtimes. This hospital experience is very different from any we've had before. Whitney was always too sick and bed ridden to go anywhere fun and I was always worried about germs. She was too young also to participate in activities or crafts they gave us. But now that she is here healthy, and free, and older she is getting involved in lots of fun things!  The best part is that she doesn't scream and cry every time someone comes in the room and she's not in any pain! 

By the way I think my sign worked! 

Lunch time was difficult again and so was the afternoon snack, both with the therapist only. She's pushing back but we are trying to give her as many options as we can during the meals so she feels more in control.  Whitney ate just a few nibbles of celery, strawberry, and a few pieces of rice and drank 20mls of milk. Then for snack it was 40mls of milk, sucked on an orange wedge, and ate three sun chips.  She likes the crunchy salty foods best. We like to try a couple preferred foods and a couple new foods at each meal. But mostly we are trying to get her to take bigger bites and take in more volume. We still don't know what she likes and doesn't like to eat so we bring back foods that she is willing to try for example the oranges and not the the avocados.  

 CHOC had a grand opening for a brand new theater here sponsored by Disney and lollipop co. It's pretty cool that they now will show movies here that are still in movie theaters. They showed Alexander the bad horrible day... We got there shortly after it started but the part I saw with Whitney was not something I want my kids too see so we left after that.  But we got some popcorn and colored some. I made a picture for my dad's birthday today! 

I wrote happy cake because that's what Whitney calls it! We love you Grampa! 

Today's photos on my wall: Whitney's homecoming and the first time I held her at 15 days old.

The magnetic butterflies Whitney and I painted! So fun on our fridge! 

Carrying her snack to feeding therapy. 

Whitney and AJ waiting to go in! 

We pretty much hung out in our room and played and relaxed the rest of the evening. Whitney saw a picture of sunflower seeds in a magazine and wanted to eat some. I'm not sure if she was allowed or not because it wasn't meal time, but when she excitingly sat at the table I couldn't resist! Also I happen to have brought some with me for my snacking. She only ate a few and drank and ounce of Apple juice. 

For dinner with me she ate a quarter of her slice of cheese pizza, and drank 100mls of vanilla boost! That's the most ever and I was so excited! Her motivation was a timer on my phone and a shower! 

After shower fun she ate a quarter of a graham cracker and one sip of chocolate shake! Then it was bed time already. She fell asleep around 9pm which is pretty late considering she didn't nap today. 

Tomorrow they may integrate me into the meals with the therapist and we also have our team meeting!  

Weight: 15.1kg