Mr. Winks and Co.

Yes, yes I have been posting all of these ridiculous pictures of our new dog Mr. Winks; he doesn't officially become ours till Sept 15th, but in Caitlin's words "Hes already apart of our family".  We weren't looking for another dog, but here's the story. 

It started out with us going out to get a few things, and then seeing that PETCO had adoptions every Saturday and Sunday. Of course Caitlin and I were the first to run in and look at all the adorable dogs and kittens that were needing foster home and ultimately adoption. I have this annoying urge to help anyone and anything if they are in need or if they need people to help with something, and I happened to come across 2, 9-week old chi weenies. They were adorable and after the rescue, Diamonds in the Ruff Rescue, explained to me that with fostering that they paid for everything, I thought, "WOW! I can help and actually just donate my time!" So I made plans with the lady, Robin to come back that evening and pick them up and take them home. 

Around 7pm when I was almost to the parking lot, she texted me and said that the chi weenies were getting adopted; I was really sad, they were so cute, well behaved and sweet. So they asked me if I would like to foster a different dog, and at first I wasn't so sure, but then I thought about all those dogs there that aren't the "popular" dogs or the "cute" dogs and realized I needed to help one of them. 

After explaining to the head of the rescue, Gayle, that Jasmine as a 55lb ball of energy/lap dog, she suggested Wink. There was this little tiny black and white puppy with a little under bite and the cutest ears, staring at me wagging his tail, and I knew I had to take him, especially after hearing his story.

He was dumped on the side of the road at a few months old, and someone found him and took him to a shelter that is now shut down. That shelter, refused to treat him for the viruses and diseases that they caused by not taking care of him properly, and because of the sickness he had, they were going to euthanize him. Upon hearing about Wink, Gayle ran straight to the rescue and saved Wink from death just hours before he was set to die and took him to her organizations shelter were they had vets on staff who nursed him back to health. He spent the next few months in the kennel because no one else could foster him and he was getting adopted because he wasnt a designer dog...no one wanted a pug/terrier mix. A person came into the shelter and decided to become a foster, but the very next day brought him back because he was "too energetic". 

That was the day we came in. So after talking to Gayle,  we brought wink home, but first Caitlin decided that his name needed to be Mr. Winks. Gayle also informed me that Mr Winks had never had a home, never snuggled in a bed, and never rode in the car without being in a crate.

Well the ride home should have told me why Mr Winks always rode in a kennel lol. Upon the ride home, I had my sister, and her best friend in the car as well as Caitlin and I. I told my sister she could role the window down just a little since he seemed to have horrible anxiety in the car and was running around like a crazy pup. He turned my blinker one, windshield wipers at one point, and rolled down windows with his tiny feet. Well I don't think my sister knew what a tiny bit was because the next thing we know, we are waiting at the front gate of base, and out the window Mr Winks goes.....Marley and me style. So my sister looks at me and yells "MRRRRRR WINNKKKKKSSSSS!" and flies out of the car to get him. I think we all about peed our pants that evening. 

After we got home, I was nervous about what Stephen would say because he was completely against fostering and thought I would try to keep the dog. Well needless to say, 1 hour into Mr Winks being home, he said, "That's it we are keeping him." I couldn't stop laughing at the fact that he was so attached after watching Jasmine and him play. But he was happy and that was all that mattered. 

Mr Winks is settling in nice here now and he loves snuggling up with anyone that's up for it, and has adapted so well with a life with Jasmine which those of you who have met her, know shes a little psychotic. He whoops her butt on a daily basis, and is not only a perfect dog for us, but has calmed Jasmine down enough to were she doesn't need to be crated anymore when we leave. It makes me happy that as of now our family is complete. I don't know how we got so lucky with 2, perfect for our family rescue dogs, with so much love, energy and snuggles for our little family.

The Dash

At my Little Grandmas funeral last week, my Aunt Frances read this poem. It is one of the most beautiful poems I had ever heard, and it honestly made me want to live my life better. Its been a hard couple of years for me, and for my family, but I printed this out and hung it in my closet, so everyday I can read it and be reminded of my dash in my life.

The Dash Poem, by Linda Ellis

I read of a man who stood to speak
At the funeral of a friend
He referred to the dates on her tombstone
From the beginning to the end

He noted that first came the date of her birth
And spoke the following date with tears,
But he said what mattered most of all
Was the dash between those years

For that dash represents all the time
That she spent alive on earth.
And now only those who loved her
Know what that little line is worth.

For it matters not how much we own;
The cars, the house, the cash,
What matters is how we live and love
And how we spend our dash.

So think about this long and hard.
Are there things you’d like to change?
For you never know how much time is left,
That can still be rearranged.

If we could just slow down enough
To consider what’s true and real
And always try to understand
The way other people feel.

And be less quick to anger,
And show appreciation more
And love the people in our lives
Like we’ve never loved before.

If we treat each other with respect,
And more often wear a smile
Remembering that this special dash
Might only last a little while.

So, when your eulogy is being read
With your life’s actions to rehash
Would you be proud of the things they say
About how you spent your dash?

Family

I am having a bit of a hard time coming to terms with the fact that my Little Grandma is no longer with us. Its not so much crying, as it is me thinking about what else we could have done for her, to keep her alive. I think, "Maybe we should have put a pic line in", or "We should have gotten her out of Summerfield Nursing Facility faster than we did", or "Maybe we should have kept her in the hospital and cleared up all her infections", and "What if we just made her eat a little bit more". It's all a moot point now, but it bugs me and bothers me that all the "what if's" come up after she is gone, and I know in my heart of hearts that her quality of life would not  be good.

We all thought she was going to pull through though, when she came home from that stupid god awful nursing home, she was so happy and strong. She was playing cards, asking for pancakes and mashed potatoes, ginger ale, water, and magic milkshake, which just so happened to be what Caitlin used to take through her tube. She kept telling me, "I'm so happy", everyday. Her life was her family; her kids, her grand kids and her great grand kids. She was surrounded by so much love every single day, and so much more in the last week of her life, that I almost feel like she was truly at peace. I dont think any of us said "I love you" more than that last week, although we knew but still had hope that she would rally. She did for those 2 days, and I remember looking at my dad and we were both in shock at how great she was doing, and we all had smiles on our faces. But I think I should have listened to my mom at that time when she said that it was great she was feeling stronger, but that there's a lot of ups and downs, and she wasn't out of the woods just yet. I think my hope got the best of me. I wanted her to be okay so badly; for me, for my family, for my daughter, and for her to stay alive to keep enjoying her family.

This last week was exhausting, physically and emotionally for all of us, and I feel like we worked so hard to be around her, make sure she was comfortable, and okay, and making sure she had everything she needed to get better, and I feel like we all got gypped. Not because of the work we did, but because we did everything right and we still lost her. I just dont understand.

The night she passed was a surprise to me and I think the rest of my siblings as well. We were in the pool taking a break, and planned on driving down there after we were done, when we got the call from my dad that we needed to get down there right away. I dont think I have ever moved that fast in my life. The car was quiet the whole way down, and I think we were all thinking the same thing, but continued to have a little hope because she had been doing so well.  We got there and were told the situation, and we all got ready to spend the night at my aunts house where Little Grandma was, because none of us wanted her to be alone. My Grandma actually asked to have all the kids there, so it was a little weird of her to ask that, but of course we were there. We got to spend some time with her, tell her we loved her over and over again while holding her hand and brushing her hair back with our hands. Then after we all had time to talk with her, she went to sleep, and she never really woke up. It was like she knew, and she was happy, and she had everyone she loved around her and she was okay with that.

There is something about being with a person as they take their last breath and it is an intense experience. Its horrible, sad, angering, and I couldnt understand how one second earlier she looked like my little grandma and the next moment she didnt. I dont believe in god, but at that moment it was like her soul went out of her body, and just went somewhere. I know that sounds confusing, but I cant describe it. But also at that moment, I knew she wasnt in pain anymore, and we know she'd been in pain all of her life, so it was also comforting to know that she was around all of us, and she wanted us there when she went almost to show us that she was truly happy now.

On Fathers Day, my Little Grandma came over to my parents house, and she was so happy. She got to watch her newest and favorite great grand kid, "Small" Steve, swim in the pool with his great uncle, and watch all the grand kids having a blast. She got to see smiling faces, feel the sunshine, be with family, and even nap poolside in her wheelchair. That is going to be a great memory for our family to remember.

I feel like I just went to a funeral when Popee died, and now I have lost my Little Grandma, my last grandparent. I am tired of losing loved ones year after year, and I know, its life, but I just feel like in the last 10 years there has been deaths every single year, and it just weighs on you after a while. Especially if you haven't dealt with one before another one happens.

I am very lucky to have the dad and aunt that I do, because they want all of us kids to help plan the service and be involved with everything that is going on, and I think in a way it will help with the closure. I keep thinking that is bringing our family closer together, I just wish it didnt have to happen this way.

I apologize if me writing about this in such detail offends any of my family members, that is not my intent, it helps me grieve by writing things out and sorting out my feelings.

All I can say is cherish your families; your grandparents, your aunts and uncles, your cousins, nephews and nieces  mothers and fathers, sisters and brother and so on. You never know when "that day" is going to come, and I dont know about you, but I will waste no time telling them all how much I love them, and enjoy every possible second with them.

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 :)

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!