CHOC Day 7: One week!

So we have arrived at one week, awesome. It feels like time has gone so slow but really fast all at the same time, if that even makes sense.  Now on to the good stuff.

Caitlin doing what she does best after she has some energy and eats :)

Breakfast was pretty good, she tried and loved hash browns, pop tarts and as always her toast with mound of butter on it. The oatmeal on the other hand was not a popular item. In fact it was referred to as "nasty slimy slime". So that was a no go lol.

AM snack was pretty uneventful, pudding, grapes, goldfish, and apple juice. Those are all now staples in her diet which is fantastic! 2 of the 4 were already there, but its great she added another fruit :)

Lunch was what I thought was a bust, until the therapist told me it wasnt. She had 25% of a quesadilla, 1/2 her uncrustable sandwich, a couple bites of spanish rice, and some chocolate milk.

PM snack was pretty fun actually. We had our favorite therapist Audrey, and she brought her snack to eat with us. Caitlin had a turkey sandwich, a strawberry slushy, some cheese and all her animal crackers.

Dinner was equally as fun. We had pepperoni pizza, some carrots and peaches. And of course we had our oreo dunking contest again.

The best part of my day though, was watching Caitlins face when my husband sent her an email, she calls it texting. He started sending her emails, because she was jealous that I got to talk to him on a daily basis via email. She would ask why he didnt write her one, and how come she couldnt talk to him. So this started. And its adorable. Some of the questions she asked him made me chuckle, like, "Since your on a boat do you eat seafood?", or "I do know I am a star at radio lollipop dad" or "Wow. That sounds serious. Congratulations". All random things that just make me laugh. He passed a very important test back a few months ago, and had to write a resume and is now CISSP certified. It is a big deal to him and apparently to Caitlin too.

Caitlin is still sick. They are going to give the the final answer tomorrow about what we are going to do about it as its starting to affect her eating. They said antibiotics and/or chest xray since her cough is really bad and she keeps hacking stuff up.  Hopefully she gets better soon and we can continue on. She is still getting an amazing amount of calories in, so I, nor them are very concerned about her intake, just about the ability to try new foods. She still has an amazing energy that only Caitlin have have while sick lol. So dont worry folks shes still good to go :)

CHOC Day 6: Looking Up

After yesterdays fiasco, I was a little concerned about today, not gonna lie. I was telling myself last night that it wasn't my fault and to keep my chin up because that was going to happen either here or later after we were out of the hospital, and that it was a learning point for myself.

This morning she was pretty brave, jumping straight to the french toast sticks she had laying in syrup. Although I guess everything looks pretty great doused in syrup lol. She also had a little bit of bacon and 1/2 a danimals yogurt and she even ate about 1/4th of a blueberry muffin with about 4 oz of whole milk.

AM snack was a breeze again, I really didnt need

to direct her too much, as I got smart and wrote meals for today that I could actually coach her with. She ate her whole banana with tons of peanut butter on it, 1/2 an uncrustable, and all of her apple juice.

Lunch was kind of a shocker for me. I had on the menu cooked carrots, grilled cheese, chips, peaches, vanilla pudding and a chocolate milk. She actually ate more cooked carrots and peaches than she did grilled cheese. Cooked carrots, who would have thunk it. This is the third time shes surprised me here at CHOC. 1rst with the tomato soup, then with the chicken tacos, and now with cooked carrots.

PM snack was yet another little but welcomed surprise. Celery. Yes, that funky stringy green veggie that most kids despise. Not only did she like it, she liked it plain, with nothing on it. Then she started her dipping; applesauce, ranch, and whatever else I had on hand. I was not complaining so she just had fun with it.

Dinner was pretty awesome, again, I didnt need to coach her through anything. She started seeing that the fried chicken strips were just like chicken nuggets and since I had honey on hand, decided to dive right in and tackle it. She ate an entire big chicken strip! She also dug right in to the mashed potatoes and gravy, the side roll with tons of butter, and her milk.

She did so well after dinner I surprised her with oreos. They were supposed to be on her tray, but they didnt give them to her, so luckily I had ordered some with my meal for her. She just about peed herself when she saw them . If she was allowed to she would eat them for every meal, every day, every month, and every year. She normally just eats the insides and then finds creative ways to dispose of the carcass without me knowing. But today I got to show her the art of dipping the outside into milk. Oh yeah, it was a big hit. 1 point for mom.

As I am sitting here typing this, Caitlin says, " Hey mom, remember the night we made and ate tacos here?". "Yes Caitlin", I said. " Well could we have them again for dinner one night this week? I really liked them." I am about on cloud nine with that statement. She wants to make something she had once and never tasted before that night, again, because she LIKED it. Thats amazing to me. With that I am off to go snuggle the little ginger I call my daughter :)

CHOC Day 5: Rough Day in the Hood

I was pretty confident the last couple of days that I would be great with the weekend, Caitlin would eat a ton, and we would both be proud of ourselves for it. Quite the opposite in fact. Caitlin is sick, stuffy nose, sore throat and coughing, I'm a little sick, but mostly just tired, and Caitlin hasnt eaten very well today. I assume part of it is that shes sick, I mean who really wants to eat when they are sick, but also I think I over estimated my skills in the feeding therapy department. Its a little frustrating, I am still extremely proud of Caitlin today, she even told me this afternoon, that "I'm proud of my self mom". That made my day, she should be proud of herself and everything that she has accomplished, so far in feeding therapy.

This morning I introduced biscuits and gravy thinking she would love it because its dippable and it involves bread. Wrong I was. She thought it tasted nasty and gagged the entire time. I ended up wiping all of the gravy off and she only ate one side of the biscuit. But she also ate a piece of toast, 2 oz of peaches, and all of her chocolate instant breakfast, that adds a good amount of calories to her diet.

Needless to say by the time AM snack came, she was starving. She did really well at snack, eating all of her ritz bitz peanut butter crackers, all of her pudding, 4 oz of milk and 65% of her sting cheese. I had one of the therapists watching me this AM for snack just to make sure I would be okay over the weekend. I guess I passed lol.

Lunch didnt go to well either, and that was part my fault, I went into it a little discouraged and I think Caitlin felt that. We ordered a cheeseburger, french fries and and strawberries. I probably shouldnt have done any meat without the team present because it is something new. I hope I didnt ruin it for her. She ate 1/8th of her cheeseburger, 1/2 her french fries, and 3 strawberry slices.

PM snack was really good, so I was a lot more hopeful, then again she probably was starving by the time snack came around. She ate all of her banana, all of her strawberry banana yogurt, 2 oz of milk and some peanut butter that she dipper her banana in. That was when she told me she was proud of herself, and I told her she should be and that she has done amazing.

Dinner actually went pretty good as well, she ate almost all of her chicken pasta primavera and about 1/4 of her roasted potatoes. She ate her entire dinner roll with 2 pats of butter, 4 oz of milk, and was so full that she couldnt even be bothered with ice cream. So at least I know she got one good meal in.

I am being very hard on myself, and I recognize that, but I just want what is 100% best for her, and I felt like I failed her a little today. I know she probably doesnt know, nor care but I do. I guess this is why we are doing feeding therapy though, so that we can learn how to get through the tough foods, and I cant expect myself and her to get the knack of it after only 5 days, no matter how well she is doing. I am keeping my head up, and keeping a positive attitude for tomorrow so that she will feel that and keep on trucking.

I'm exhausted, hopefully tomorrow will be better.

CHOC Day 4: Making Great Progress

Today was quite an exhausting day. Its 7pm, my kid is in the playroom and I am sitting on her bed typing away, and wanting to fall asleep all at the same time. I think we are both a little homesick at this point; we miss our beds, our DVR's, Stephen, and Jasmine. But with 4 days down 15 to go and the fact that shes doing amazing is what keeps us going.

This morning for breakfast she 1 1/4 pancakes, tried some cottage cheese, tried some orange juice, ate 1 pear and 2 oz of milk. Not a ton this morning, but I think she wasnt feeling to good.

Snack was 3 slices of apple, 2 graham crackers, 2 oz strawberry milk, 1/2 of an uncrustable,

peanut butter (she dipped her apples and crackers), and 2 oz of whole milk.

Lunch was a ton of new things for her. She ate 1 oz of chicken noodle soup, a slice of an orange, all of her milk, 65% of pasta salad, and 75% bag of sunchips.

Snack pm, she ate, 5oz of Chocolate milk, 1/8th of a granola bar, 40% of her turkey sandwich with honey slathered all over. Gag lol.

Dinner was awesome! She had a whole dinner roll with 2 tbsp of butter, 22 grapes, 75% of her penne pasta noddles, 50% of the meat sauce, 4oz of milk, and you know she was full because she only had 80% of her ice cream.

We also had our Friday meeting with the team today, in which Stephen actually got to call in from the boat to listen in and ask questions. Caitlin has surpassed all of her goals this week with flying colors. Her goal was 1700 calories a day, and HER average is 2100 a day, shes had 0 night time feedings, and shes actually tried about 15 new things instead of 8. They are really proud of the work she is doing and how much she wants this.

The next goals, are going to be having her eat harder foods and getting her to take her meds by mouth instead of the tube. I assume this week is probably the "honeymoon phase" and that she will start rebelling a bit as we go into next week.

I have to say I dont think I have ever been prouder than when she looks at me at dinner time and says, "Lets Eat!". She has also taken a liking to writing in her food journal again but drawing pictures of what her food looks like, colors and all. I am happy that this helps her feel "safe" with food.

That is all for now until tomorrow. Hopefully bedtime is coming soon :)

CHOC Day 3: Perfect Ending

We had a pretty great day today! We found out that yesterday Caitlin consumed 2100 calories! Holy Moly! And not a tube feed in sight. I am learning a lot of the feed tricks are actually just changing words around as to not allowing her the control, but making her "think" she has control by giving her choices, instead of just asking "do you want...". Thats one of the biggest things I have learned since being here. The other thing I have learned is to let Caitlin have fun with her food, make whatever concoctions she feels like making and dipping. Dipping is the huge on with Caitlin. She will try it and eat it, if she can dip it in anything dippable lol. Ok on to today....

This morning for breakfast Caitlin ate a whole bowl of fruit loops, 1/8 of a sausage link, a piece of toast with butter and jelly on it, and peanut butter at one point lol. Also 6 oz of carnation instant breakfast chocolate milk!

Snack time she ate 3 carrots that she decided she wanted to dip in applesauce and ranch..gag lol. Some v8 pomegranate blueberry juice. I want to say there was goldfish too, but she ate so much I cant remember lol

Lunch time was fantastic as well, she had a WHOLE hot dog. The entire thing, bread and hotdog, dipped in katchep of course lol. She also had a half a bag of chips, all of her apple juice and even tried corn, which didnt go over very well because, " Mommy forgot to order butter, and have me dip my corn in butter". My bad lol.

PM snack didnt go to well, she has a lot of issues with things with seeds either on it or in it. She had 1/2 a strawberry with a whole bowl of whipped cream, a bag of teddy grahams, and 1 oz of strawberry milk.

Dinner was fantastic tonight as she had cheese pizza, and actually ate the entire personal cheese pizza with the cheese!!!!! No more sauce pizza for her! She piled salad, ranch, and marinara all over her pizza and went to town. She ate about 1/4 of her salad with ranch, and then 5 grapes, and all of her milk.

After dinner, we headed down to radio lollipop! She had an absolute blast down there. They let her DJ with them the entire night, and she was talking to kids on the telephone in their rooms taking requests. It was an amazing experience for her, and it was great to see her smile, laugh and do what she wanted to do not on a schedule. I am so glad we went down there tonight. I have a couple of pictures of just how much fun she had.

About 8:30 we got back to her room, and she said she was hungry again, so out with the snacks! I let her have a gogurt as that used to be her life staple and shes only had 1 in 3 days, so I surprised her and told her since she was doing so amazing eating that she deserved it (yes bedtime snacks were okay'd by the team).

She is now in sleep land where I know she is having some fabulous dreams....perhaps dreams about a future career ;)

CHOC Day 2: AMAZING DAY!

Holy heck today was an amazing day for Caitlin. I bawled like a baby at dinner, and when the nurse came in, Caitlin said, "This is my mom, she crys all the time cause shes happy I'm eating" LOL. Nice kid, nice.

This morning was a bit of a struggle with Belgium waffles, as they are not the kid she was used to, as well as a danimals crush cup she wasnt used to as well and some milk. But all in all breakfast was a success! She tried some bacon and didnt like it, I dont know if she really is my child lol.

For morning snack she had she went to town on a banana (ate the whole thing), goldfish crackers(ate 1/2 the bag) and about 1/4 of a cup of pudding. She wasnt too keen on the strawberry milk so she didnt really drink that.

Lunch time was great as well. I shed a bit of a tear when I realized my child was eating a bowl of tomato soup, and LOVING it! She also ate half a grilled cheese sandwich, wasnt keen on the green beans or the fruit cup, but we will work on those. She also drank milk there was well.

For 3pm snack she had a full uncrustable, including the fancy endings and all, tried bbq chips but didnt like them, ate a piece of cantaloupe, that she said was only a 2 on the 1-5 scale. She also drank 3 oz of chocolate milk, in which upon tasting it, she walked up to me, put her arms around me and said, "oh thank you so much mom!" Apparently she thinks I ordered it lol. The nutritionist did, but I'll take what I can get ;)

For dinner, she ate a whole freaking chicken taco, with refried beans, avocado, cheese, flavored chicken, shredded lettuce, and diced tomatoes. I seriously bawled like a baby. She cut the tortilla into 4 and then made mini chicken tacos, and ate every single one. Oh and of course she had her chocolate ice cream at the end .

I really thought tonight was going to be a bad night, and I was going to struggle with her eating, and I was so worried she'd be hungry after, and etc...but she did amazing. I am so proud of her.

Anyways, that is all for the day. She will have a bedtime snack around 7:30 or 8 that will be juice and crackers or something.

I am just amazed after only 1 day of being here, that she is listening so well and trusting the team in what they say as far as trying things. I think thats the difference between home and here. She feels the support here and wants to do good, wants to get strong, and wants her tube out. I am sitting here in our room while shes at the play room, just in awe thinking about how much better this is going to get over the next 18 days and how much I am going to enjoy helping her get there.

CHOC Day 1: Admission.

Well we made it! Woot! We are alive and kicking at CHOC and Caitlin has done amazing thus far. Well about as amazing as one can do with one feeding therapy ;)

I have realized I may have completely over packed as you can see in the pictures, but at least she is happy and comfortable in our new home for the next 19 days. I think she has more toys here than she does at home at this point, and the room came with a dvd player which is a major plus. No one really comes in our room because there really is no medical reason for them to do so, so thats nice to be in a hospital for once and not get woken up at 8, 12 and 3am lol.

The staff has already been amazingly sweet and someone even comes in to take Caitlin to the playroom which just happens to be just 2 doors down ;) I think Caitlin has made friends with just about everyone she can here, and shes really energetic about the therapy, so all in all she loves it. I have a feeling that she will not want to leave :)

I'll update more tomorrow. This blog is an easy way for me to update everyone, so thanks for reading!

1 Week!!!!

I got a phone call about 2 hours ago from the psychologist from CHOC, and it suddenly got really real. I am so stinking excited for the 22nd.

I almost cried when I got off the phone with her, because it is finally happening for Caitlin. I must say I really liked Rady's Children's until I learned that they had a feeding program all along and never spoke about it to us. I would think that would be your first thing to do with a child with a feeding problem, not just stick a tube in them. We have since moved all of Caitlin's medical stuff to CHOC, because the staff there is amazing, and really takes a genuine interest in Caitlin's eating and they have this amazing program to help children eat instead of be dependent on feeding tubes until god knows how long. Rady's told me Caitlin would have her tube till about 11 or 12. At 6.5 years old, she has a real possibility of getting out.

I have talked with Caitlin a lot about the upcoming hospitalization, and possibly getting her tube out, and that kid has the best attitude of any kid I have ever met, about eating. She wants to get strong, she wants her tube out and in her words she want to "wear a bathing suit and not have her tube sticking out". I don't blame her lol. Although shes worried about being in the hospital I *think* I have calmed her fears a little bit with all the fun stuff they have to do there.

I am also excited because people who know us know, that Caitlin for all of her life has seen doctor upon doctor, and been in and out of hospitals, and now there is a possibility that this is it. This could be the end of everything that we have been through as a family for the last 6 years. I thought that day would never come, and now that I know eventually it will be here, I am ecstatic.

I am also excited, because they are going to give us the tools to help us understand her eating problems and how we can help her get over her fears and eat normal meals. To be able to understand, and be able to help her, I know will be an amazing feeling.

I am so proud of what she has accomplished thus far. I do credit her karate teacher and her therapist with a lot of the motivation behind her eating. Caitlin wants to get strong for karate so she can do a demo with her Sensi on April 20th, with weapons (lord help us) lol. Her therapist has been a huge help to Caitlin and us, because she is so positive with Caitlin and her eating, and she has taught us a lot about positive reenforcement when trying to help Caitlin with her eating.

Whew sorry so long winded, but I just cannot wait. I am excited like I am going to Disneyland or something, but this is such a big step in all of our lives.