The Calm After the Storm

Well its been a few days since I have posted, we have been settling back into our lives here at home, and are struggling a little with keeping up the feeding schedule with Caitlin. I find that I am constantly worried about if she ate as much as she did in the hospital or if shes eating the right things, and wanting to count calories. But I know that I just need to let it flow and she will eat at the times we specify.

I thought this was going to be a little easier to settle into, but in the hospital I guess there was no real distractions, no cooking, cleaning, going to the store, soccer games, karate or school. Now I have to figure out how to balance everything that I do with everything that she does, as well as continually watch her because she wants to sneak food. Her eating times are 8am, 10am, 12pm, 3pm and 6pm, and a bedtime snack if she asks, and I still manage to miss those times sometimes and then have to adjust her eating schedule.

Shes holding steady at 39.6lbs only 4 oz less than the hospital, so I'm hoping I am doing a good enough job of helping her succeed in her eating. I am a little discouraged though, because my support from the hospital is gone and I guess I felt "safe" having them there with us during the meals, and now I feel a little overwhelmed with this responsibility. Its hard for me to admit that, but its getting frustrating for me.  I have all the tools, and I try to use them as much as I can, but its so much different at home with the hustle and bustle of the home life.

At school today she told me she "lost" her bag of snacks for snack time, and that means she lost about 200 calories out of the day. She ate pretty well for lunch having a pb&j, danimals yogurt, jello snack pack, banana and a juice box. Tonight she ate pork chops, mac "n" cheese, and some sour dough bread with butter, and a side of lemonade. Of course she had ice cream for dessert.

We see the feeding therapist on wednesday so hopefully I can gain some insight into the issues that I am facing. Maybe I am just freaking out over nothing, maybe I'm not, but I think I need them to give me some peace of mind.

Final CHOC Update: Headed Home

I am pretty sure I had my number days mixed up, because it was 19 days and somehow I just miscounted. Oh well. Tomorrow will be day 19 and our last day at CHOC, and I have to say I am a little sad about leaving, but I guess thats what happens when you are there for so long. The team has been pretty fabulous to us and to the mission Caitlin had, which of course was to get her tube out. Technically today we weren't supposed to weigh her but my curiosity got the best of me and she was 18kg which is 39.6lbs, and I have no doubt tomorrow that she will hit 40lbs. I know thats not a huge deal, but she looks so healthy now, and her behavior has even started getting better as far as temper and anxiety, which is a huge plus. I know my relationship with her has changed a lot in the last 19 days, and its amazing how much closer we have become.

This morning, we had our first real family meal together, where we weren't directing her or arguing with her, she just sat, ate and talked to us like normal families do, and my husband and I couldn't believe how far she has come from the first day here.

Its going to be really weird getting back into the groove of our life and not counting calories or weighing her everyday. But I just cannot wait until tomorrow when we can go pick up Jasmine, drive home and toss every single thing that has to do with g-tubes, like the 35 cases of formula, all the boxes of pump bags, two pumps, 3 IV poles and on and on and on. That is going to be the best feeling in the entire world to know, that she will NEVER need that again.

She has gained so much self confidence through eating and through the positive reinforcement that she gets from all of us when she is trying new things or chewing the right way. She has retained so much information and I am so proud of her for being self motivated to eat, and to hear her say "Mom, I never knew there were so many foods that tasted so good!", just melts my heart. We beam with pride at every meal when we see her take the initiative to eat something we only asked her to take a few bites from, or like tonight just scarfing down ravioli like no ones business, without us even having to ask.

We always knew we had a pretty awesome kid, but I am really touched at how many peoples lives she has touched just by being here and being herself. So many people have come up to me and said that they will never forget her, and are sad to see her go, but happy because that means she did what she needed to do.

I am going to be forever grateful to CHOC and the feeding team for allowing us to participate in something so awesome and for teaching us how to teach her how to eat. I cant wait for our first meal at home and to actually sit as a family and eat. Its going to be an amazing feeling.

Thank you all for your support before and during all of this, it really means a lot to me and it really helped me to know that people were pulling for us and wanted Caitlin to succeed.

Tomorrow we will be having our last meals here, and having one final meeting before we leave, and I have a feeling I just may cry. I didn't when she got the tube out, but I think it was because I was just so happy that I was relieved that we no longer had to deal with it. But I think knowing that I probably wont see them again, and that they gave Caitlin a new life and did so much for her, its going to be hard to say goodbye. I wish I could make something for them or do something to let them know how much we appreciate them.

That is all from CHOC, and I look forward to seeing some of you when we get back :)

CHOC Day 15: "Hey, I Got My Tube Out Today"

Best words ever to come out of Caitlin's mouth. Today was an emotional day for all of us, she got her tube out and was so excited about that every person that she saw today, she lifted up her shirt and showed them her "smooth" stomach and said, " Hey, I got my tube out today". She was so proud of herself and multiple times today she told us, " I am so happy my tube is out, and I have a smooth stomach.", and "I cant believe I got my tube out! I am so happy about that!"

We are so proud of her and all that she has gone through in her little life, and now, its over. Its really over. Theres no more we can do to help her be "normal", she is normal now and its an amazing feeling to know she is going to live a long happy healthy life and she doesn't have to depend on a tube to nourish her.

I don't really have a ton to say tonight, we are dealing with a family emergency that I don't care to go into, but I ask that as you have supported me in Caitlin's endeavors that you keep our big family in your thoughts if you could.

CHOC Day 14: Closer to Normality

THE DAY BEFORE WE LEFT FOR CHOC

For Caitlin today was about deceivement, cuteness and how much she could get away with because today was Stephens turn to be the leader in feeding therapy. He actually did a really good job leading the meals, he has this gift of being able to talk to Caitlin to get her to forget that she is actually eating. They talk about where the food shes eating comes from, or how yogurt is bacteria, or which animal her meat is from. I think she throughly enjoys talking about it and learning about her food and how its made, and I think it helps her understand more and helps her eat.

TAKEN TODAY

It is funny to see how she reacts when I am leading and when Stephen is leading though. With me she doesnt mess around, we have a little bit of fun with our food, and it gets done fairly well. With Stephen, lets just say she has him wrapped around her little tiny finger, and found a way to try and negotiate with him, and try and be cute in order to get what she wanted. It was a little funny, I must admit, it was comical to see her tell her dad to "look over there" and then dump part of her meat out when he fell for it lol. I am proud of the control and the patience that he had today with her and eating, it can get really frustrating at times.

Tomorrow is the big day and her G-Tube comes out. Its amazing to me that all of us as a family were able to learn this together and help make the g-tube coming out a possibility and a reality in her life. Tomorrow is going to be the first day of the rest of her life, where she can wear a 2 piece bathing suit and not worry about people looking at her like in past years, and also the one piece not having anything poking out of it.

I no longer am going to have to worry about playing with her a little rough or picking her up and something catching on her tube, or anything. Its a very exciting feeling to know that the day you have been waiting for since she was born, is finally here. I think back on the 6 years of medical crap, hospitals, testing, and I just cant believe that this really and truly is the LAST medical thing that we will have to do with her. As of tomorrow she will be "normal" by society's standards, and I cant wait to see her beam with pride at the fact that she accomplished such an amazing feat.

The other thing I cannot wait for is Friday when we get to go home, and I get to clean out her room of every medical thing possible. Bye bye extra tubes and syringes, bye bye IV poles, bye bye feeding pumps and backpacks, bye bye 35 cases of formula and bye bye getting monthly shipments of formula and supplies. I just cant wait. I am going to be bawling through all of it, just knowing we will never need it again and that she can eat like a normal kid. Amazing.

CHOC Day 11, 12, and 13: Busy, Busy, Busy!

I do apologize for the lack of the blog posts for the last few days, it has been a little hectic, with Stephen finally here, our weekend out of the hospital, and trying to focus on Caitlin eating.

SHE ATE AN ENTIRE BEEF TACO FROM TACO BELL!!

We got some GREAT news on Friday, Caitlin will be getting her g-tube out for good on Tuesday March 8th which just so happens to be Mardi Gras :) We will be celebrating! She is also holding steady at 17.6 kg (38.8 lbs), and her week average calorie count last week was 2400 calories a day!! I wish I could eat like that! So because of all of the great she is doing they are not going to be weighing her anymore while shes here, because they dont want to be focused on the numbers, and they dont want her to develop an eating disorder by being obsessed with her numbers and with calorie counts.

AT KIDS DISCOVERY CENTER

Saturday we went the the Discovery Kids place near CHOC, and it was a blast! She got to pretend she was a hockey player and score goals in a virtual game, she was able to run around and see how weight works on the moon, and how past she could pitch a ball. She had a great time, and then retreated to one of our family's favorite spots, Barnes and Noble. Stephen was able to get Caitlin to eat and enjoy and Basil Pesto Tomato Caprieze Sandwich on artisan bread. Its insane how he gets her to try these things, I think she trusts him to not lie to her or trick her, and hes always very honest about whats in it and the texture.

AT KIDS DISCOVERY CENTER

Today was also a fun day, we headed over to the Irvine Spectrum to do a little shopping for the little munch kin who had gained about 4lbs since being here. She made out pretty darn good, with new shirts, now in a size small from xsmall, and size 6 pants, not size 5 or 6 slim, and dresses in small instead of xsmall as well. My sister Haley came with us and kept having to remind me every time I picked it up that it was in fact small she was wearing. We ate at the cheesecake factory, and Caitlin had about a 1/2 cup of fettuccine alfredo, and some yummy chocolate cheesecake. YUM! After lunch, thanks to my wonderful husband we headed to Nordstroms to pick me up a pair of TOM Shoes. I must say they are about the most comfortable shoes I have ever worn. I love them.

AT THE IRVINE SPECTRUM

I headed back to the Ronald McDonald House early tonight, because I am exhausted. I have been laying in bed since about 8 just waiting for it to be quiet enough here for me to fall asleep. Tomorrow is a big day for my husband who takes over feeding duties for Caitlin in therapy. Its going to be interesting how their relationship changes and grows because of this experience. I know Caitlin and I are closer than ever, and it was gradual but I'm not stressed anymore around her, and our relationship is so much more positive than it was before. The feeding team has done a lot in just a couple of weeks, and its already started being life changing.

EATING AT BARNES AND NOBLE!

I cannot wait for next week, not only because she gets her tube out, but we leave on Friday back to our house, our dog, and our life. I have to say Stephen and I's relationship is better because of this experience, we are a team now when it comes to Caitlin and I cannot wait to put that into action when we get home!

CHOC Day 10: A Special Surprise!

I TOOK MY MEDICINE BY MOUTH!

JUST READING A BOOK WITH AUNTIE HALEY

Today was so much fun! My sister Haley came to CHOC to visit Caitlin and I and share a meal with us. Caitlin had no clue she was the surprise and almost peed her pants when she saw her there! Today was also another fabulous eating day as we got to eat in many different places.

First things first, Caitlin has now taken all of her meds by mouth 3 times now, as she just did it a little while ago tonight. Second, she was running out of clean clothes (even though I packed 2 weeks worth), and so we went to try on jeans that fit her just 9 days ago and she couldnt put them on, because she has gained so much weight! Ahhhmazing,

I...CANT...BUTTON..ITTTT

Breakfast was good, 2 french toast sticks, 25% of a bagel with cream cheese, tried some scrambled eggs, all of her carnation instant chocolate milk, and some honey dew. We ate in the normal cafeteria at breakfast.
AM snack was peaches, goldfish and vanilla pudding, all of which were demolished, and we ate in our room because we were both lazy by that point of the day lol

Lunch was a little something different. She tried fish sticks for the first time and she LOVED them. She dipped them in -what else?- Caitlin sauce. She also wanted mashed potatoes and cooked carrots again. She ate both fish sticks, part of her carrots and almost all her mashed potatoes, and milk. We ate in the fancy cafeteria at the conjoined St Josephs hospital.

AM Snack

After lunch Haley showed up, and we just took it easy in our room and waiting for PM snack to come. Luck for Haley she got to be involved in one of Caitlin's therapy sessions and I am pretty sure she laughed through the whole session. Caitlin had a 1/2 of a ham sandwich with Caitlin sauce, Jello, sun chips and her milk. She did a great job and pretty much laid in a food coma on the way back up to our room.

Dinner was a little bit fun. Caitlin requested that we eat where radio lollipop broadcasts, so we set up shop there. Then At 6:00 I realized why she wanted to eat down there...it was a radio lollipop night. So after her chicken strip, carrots again, and french fries we headed into the studio, where Caitlin is obsessed with introducing songs to everyone listening lol. She did a great job, but we needed to give the other kids turns so we retreated our room for the night.

DINNER NEXT TO RADIO LOLLIPOP

I MADE AND ELEPHANT CUP HOLDER FOR MY DAD!

ITS THE BIEBER CURSE. NOOOOOOOOO!

She is now passed out happily with Jello in her belly from taking her medicine (that she spilled first then we got a second dose after a lonnngg wait). Tomorrow Stephen gets here and I think Caitlin just might become the happiest little girl in the world.

CHOC Day 9: Jello Makes Everything Better!

You know, I got woken up this morning in a not very good fashion, had to almost shank someone twice for my daughters wagon, and they didn't give me guacamole for lunch like I asked, but today ended up being amazing! Stephen is finally home and Caitlin finally got to talk to her daddy about everything that has been going on for the past 9 days, Caitlin ate amazing like she has been and the best news ever, SHE DRANK HER MEDICINE BY MOUTH!!!!! Sorry about the caps lock fury there, but this was one of the conditions of getting her tube out. It didn't taste good by any means, but we washed it down with some strawberry J-E-L-L-O :)  It was great she was able to call her daddy and YELL into the phone, " GUESS WHO DRANKEDED ALL HER MEDICINE BY MOUTTTHHHHHH? MEEEEE!!" Most awesome feeling as a parent ever, when your child is so proud of herself that she wants to tell the whole wide world, including the nurse :)

Best back off my ride, yo.

Breakfast was eaten again in the cafeteria. It was hash browns, banana with peanut butter, milk and some cream of wheat (she thought that was slime too lol).

AM snack consisted of goldfish, Jello, and milk in which she scarfed down like there was no tomorrow. :)

You can see how much weight shes gained by her cheeks lol

Lunch was a little new for her today. She really liked the chicken tacos from the other night and we are still trying to work on meat with her because her jaw is so weak, so we did beef tacos! Guess what? She ate the whole thing. We separated all the ingredients, let her throw them together along with animal crackers and french fries in the taco lol, and she gobbled it all up.

We have learned with Caitlin that she has to have something to dip it in, and we need to make her a recipe book called Caitlin's Creations. This child has come up with her own concoctions (she calls recipe), that she thinks that she would like to write one. For instance, Caitlin sauce is mayo, mustard, and ketchup, you mix it all together and its the color of her hair, hence Caitlin sauce LOL. I love this kid.

We were counting how long it took to chew her goldfish

PM snack was a little difficult only because she had strawberries and thats really the only thing so far texture wise that has her wincing every time she eats it. She got to dip it in chocolate sauce and whipped cream so it wasn't bad, and mommy got the leftovers ;)

Dinner was great, she ate half a hot dog, half her mashed potatoes, 5 cooked carrots, half of my roll and a whole 8oz glass of carnation instant breakfast (Caitlin's chocolate milk).  The room service forgot to put her Oreo's on the tray when they brought it up, so after dinner because she did so great, we went and got cookies from the downstairs cafeteria :)

All in all its been a very fun week I think all around so far and its only going to get better as my little sister Haley, is going to come up to surprise Caitlin tomorrow and come eat dinner with us, and Stephen gets here on Friday! Then this weekend we get 4 hours on Saturday and 6 hours on Sunday to leave the hospital and go wherever we want, but not home lol. I think Saturday we will do the kids discovery museum here and then Sunday we will hit up Irvine Spectrum, a movie and Cheesecake factory. Haley is also coming up on Sunday so its going to be a really great weekend!

Another thing that I am super stoked about is that the Feeding Team told me today that at the beginning of next week they are admitting another feeding team patient! This is the first time they have ever overlapped patients and they are hoping to use Caitlin as a little bit of therapy for the new child that is coming in. I am so excited both for the new patients family but for Caitlin, as shes going to get to help him learn how to eat for a week. They are also excited that Caitlin will be the one here for this because of her outgoing personality and because of the way her eating has progressed they are hoping that the other child will see it as a positive. I have nothing but high hopes for the new family. I know their child will do amazing and I haven't even met them yet :)

CHOC Day 8: Day of the Sickenss

Well last night at about 1 am the crazy coughing started. Unfortunately being in a hospital you are going to undoubtedly get sick, even so its never fun. She finally got some cough medicine tonight so I am hoping we can both get a good night sleep tonight.

The morning went really well, she ate all of her waffle, some apples, bacon, milk and yogurt! It was her last therapy in the little rooms because we feel shes at the point already that she can go out into the outside world and thrive without hindering her eating.

Lunch was pretty fun, we went down to the cafeteria and ate with her therapist and then we saw Caitlins dietitian and her twin sister so they came to join us. Caitlin did amazing even with all those distractions! She had a half of a ham sandwich with "Caitlin Sauce" which is mustard, mayo and ketchup all mixed together to make the color of her hair LOL. She also ate celery again, animal cracker and milk. I think she was a little overwhelmed at first with not eating in therapy because for once the child couldnt even speak lol.

PM snack was also a blast, we ate in the neighboring hospitals cafeteria, with a few friends. She had a giant banana, vanilla pudding, chocolate milk, and carrots.

Dinner I decided since we were rolling with the abnormal eating places, that we would eat downstairs in our cafeteria again and then head over to radio lollipop. For dinner she had baked mac n cheese, peas which she actually liked, french fries and milk. I let her have the frozen yogurt from the cafeteria and I think she just about peed her pants.

All in all a good day. I didnt get to take any pictures, I was leading the sessions today so I didnt have time. Now I am going to pass out early to get some decent sleep.  Sorry for the boring post tonight, I will make it up to you all tomorrow :)