TGIF -- NOT!

Dear Medco...

Each and every month, my insurance requires me to order Owen's Viagra through you. I do understand that Owen is under 18 and therefore Viagra is not something you like to pay for. I don't understand why I am punished each month by having to call your call center to refill this prescription. I could save you a ton of money by allowing me to have my local pharmacy fill this RX, instead of having you shipping it overnight in a cooler with tons of icepacks.

I gave you the confirmation number and the representatives name that took my refill order last week. I was also told I would receive it by today. What's that? You have no record of me calling??

Sigh.

Ok... we have to leave for Stanford... how do you suppose I am to get this medication filled before tomorrow? Can you overnight it?

You can't, I see.

Ok, so I am supposed to call the cardiologists office. Have them fax Owen's prescription to Walgreens (where I pick up every other compounded RX) and have them fill a temporary supply to get me by.

What's that??

Oh, I get to pay an extra $50 copay to them!! Seriously?

This happens Every Single Month!!

I understand that you don't speak English well... and you apologize for your incompetence... but how does that help ME?

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pack.. blend foods... finish laundry... run errands (in case we don't get to come home from Stanford)... load up the car with movies so the kids are quiet for 12 hours... and visit the doctor for antibiotics because guess who woke up with strep?!?

I am so in need of a pedicure and eyebrow wax... tonight. Tonight will be better.

A New Placard

I have put it off long enough.

I kept telling myself that we didn't need one. When other drivers park REALLY close to Owen's side of the car, it's okay to just climb over the seat with him and his oxygen tank and buckle him in. I am flexible like that. We have managed just fine for the past 19 months on oxygen.

Then I had to admit to myself that the oxygen isn't going away anytime soon. Owen isn't walking yet and he isn't getting any lighter to carry. When he does start walking, he isn't going to have much stamina to walk far.

I decided to print the form this week and took it to the pediatrician for an autograph. We spent 15 minutes at the DMV and we got one!!

Owen has no idea what it is.. but he loves it.. because I told him it's HIS. Toddlers like everything to themselves.

Here's to closer parking spots and no more lame drivers parking so close to my passenger side that I can't even open his door.

Monday

I have no pictures from today, or this weekend. I've been busy. Carson has been sick and flat on his back the majority of the weekend. We are doing our best to stay away from him and let him rest.



When I say "keep busy"... I mean organizing, cleaning carpets, running errands and getting ready for our trip to Stanford. Owen has been delightfully clingy and Kamryn has been extremely helpful!



Owen had Physical Therapy today and continues to refuse to do any physical activity. As soon as PT left, he was up and cruising around. Just a few minutes ago, he took a risk and transferred from the train table (coffee table) to the couch.. on his FEET! Usually...he'll stand at the table, then sit and scoot to the couch, the pull back up on the couch. Not today. He stayed on his feet through the transition!



Back to WHY he won't do these things when his therapists are here.... he's stubborn. He likes to do things when HE wants to do them!! He gets it from his Daddy.



Totally off subject... last night Owen was climbing all over our bed, giggling and having a great time!! Then he turned extremely blue! This has been happening alot lately, especially when he is doing a lot of physical activity. I monitored him a bit last night and today. When he's active, his sats are dropping into the low 60's-high 50's. I'm a little concerned to see what happens when he starts to walk.



And onto yet another subject... Kamryn is testing for the gifted program at school again this week. She came home and said "I don't have any homework tonight because I missed math due to ALP testing and I missed the math lesson... I have NO idea how to do the math she taught today!" That's awesome Kamryn... when will you learn this said math lesson. "I have NO idea?"



We're off to Kamryn's school bookfair at Barnes and Noble .... then Dance. Owen gets a thrill out of taking the girls to dance. Kamryn and Giselle have class at the same time in different rooms. Owen sits in the hallway and dances to "Imma Be" (by the Black Eyed Peas -- NOT EDITED VERSION!) and "Walk the Dinosaur" (by Queen Latifah). **I linked to the songs if you want to get your groove on!

Gtube Success

It finally happened. I said it wouldn't happen.. I am too careful.. but it did! Owen's gtube got clogged. I have no idea what piece of food made it's way out of the blender, through the strainer, into the tiny syringe and then through the extension tubing... but it found it's way into the Gtube and refused to budge.

After many backfires of blended food.. in my face, up my nose, in my hair.... those of you that feed your kids through a syringe know exactly what I'm talking about. For those of you that don't....

When you squeeze liquid through a syringe and the exit is clogged.. the syringe is full of pressure and backfires... MESS everywhere!! Good times.

I tried pulling back on the syringe, I tried flushing it with every method I could think of, and then I tried Coke. I have used Coke many times before and it works like a charm. Except this time! I squirted it into his tube, only to have it shoot back out at me. I gave Owen the syringe full of soda to hold for me while I went to the sink and when I came back.. it was GONE! He drank it all!!

He said '"MMMMMMmmmmm" and then "Mooorreee!!"

After I attempted to unclog the tube with 1/2 a can of Coke... I gave up.

It was time to change the tube.

Taking the old one out was painful ... for all of us. Carson held Owen down... Kamryn was in charge of the syringes and water... I did the dirty work. His removed tube was indeed clogged... it was disgusting!!! There was a giant scab surrounding his tube... I was pretty grossed out.

I got the new tube in pretty easily and then got his gauze in place.

He has been happy ever since! Happy and completely out of control with all the caffine and sugar he guzzled in the Coke. Yikes. No soda for that boy!!!!

We Love Fridays!

Where did the week go?? I can't believe it's 6 o'clock on Friday. We sure do love Fridays! This is how we're spending our Friday night....

Owen is learning how to dress himself. I like to start em' early.
The big event of the week was picking out Owen's new hat!! He LOVES his new hat!! I'm sure Daddy was getting tired of him stealing all his hats and "hiding" them around the house.
He wears his hat all the time and when we leave to go somewhere he asks for his "HAT?!" Doesn't he look like such a little boy??
I was trying to get Owen to open his mouth in this picture to show proof that he had a wad of toilet paper inside his cheek. The boy loves to chew on paper. Whatever makes him happy. Kamryn is outside and Owen scooted out to play at his sand/water table. Look at those chicken legs.. no wonder he can't walk yet! We need to start doing some squats.. I guess coming down the stairs will help with that.
Kamryn was outside blowing bubbles. At first it was for "Owen's" enjoyment, but it looks like she was having plenty of fun without him!

This is how we are spending our Friday night. Daddy will be home in a minute.. we're making steak quesadillas and then it will be time for snuggles and a movie. We LOVE Fridays!!!

Scooting Downstairs -- Caught on Tape

Owen has been scooting down the stairs for almost a week. It was such a breeze for him to go up and he would sit on the top step and holler for someone to bring him back down. The other day, he just came down on his own! He does something new just about every week and I just know walking is in his near future. We are SO excited for him!!!

I took a few videos of him coming down the stairs, but all the file sizes were entirely too large to upload. I took this one tonight. I loved this one more because Kamryn was in it too! Enjoy.

Suggestions....

I purchased my first SLR camera last year and LOVE it! It's the Canon T1i and it takes great pictures and HD Video. The problem I have is that the video files are SO large when I try to upload them it takes hours. I also run out of storage space and the file sizes are often too large to upload to VIMEO and Youtube. Does anyone have any video camera suggestions?? I am thinking about getting a little HD Flip Video. One that I can put in my purse and take lots of videos while we're out. Another option would be a smart phone... but I like my ancient motorolla phone. I hardly use it and I know that if I had an iphone or any other smart phone, I would spent entirely too much time on it.

Also.. while we're making suggestions... does anyone know of any great lenses or places to rent?? I'm thinking of renting a lens for our CA trip in a few weeks. I want something that takes great pictures outdoors. I currently have the kit lens 18-55mm and the 50mm prime lens.

I have some GREAT videos of Owen this week. Not only did he learn how to come DOWN the stairs (it's hilarious, trust me), he can also walk with his Gait Trainer. I don't think I took pictures of his Gait trainer that we ordered through the home healthcare company... it's a fancy piece of equipment and we ordered a bunch of prompts for it. Turns out, he uses just the frame for support while walking. He's going to take off on those two feet anytime!!!

Special Prayer Request

Please keep Mason in your prayers. He is rejecting his new heart and is undergoing some pretty intense treatments. The next five days are a critical time for him and his new (Easter) heart. You can read more HERE.

Rejection is scary for any transplant patient. Sometimes it's minor and can be treated with medications. Other times it is more severe and that is where Mason is. I am so scared for the day that Owen is transplanted. I know that he already has extremely sensitized antibodies (as does Mason).

Doing pre-transplant treatments, such as IVIG (immunoglobulins) and even Rituxin (chemo), they are able to put the antibodies to sleep. It also opens up the donor pool to allow patients to get a donor organ. They can come back (or wake up), and that is why there are treatments such as ATG (a stronger globulin) and Plasmapheresis (a type of dialysis that depletes the body of Plasma without depleting it of it's blood cells). Mason is currently undergoing the last two treatments I mentioned.

I am scared to list Owen for his heart. Each visit to Stanford brings new insecurities. I know that Owen is doing well right now. You just never know what will show up in an echo or on an ekg. We have been incredibly lucky up until this point. We'll know in two weeks, when we get to Stanford, what our next plan of action will be.

We can't wait to meet our friend Mason and tell him how much we have prayed for him. We pray that he will be thriving with his new heart and the rejection will be under control!!

Playdates and Nightdrip Update

I had good intentions, I did. I fed Owen his full calories during the daylight hours yesterday. Then I felt guilty not feeding him during the night. Wouldn't he starve? Wake up wondering why his tummy was growling? He doesn't know what hunger feels like. Am I totally cruel to leave him hungry all night? All he's ever known is a full belly while he sleeps. So.. I caved a little and gave him a night drip from 11pm-2am. Coincidentally, he woke up at 2am and was trying to unplug his connector from his Gtube. He's a genius like that.

He then remained awake until 4am. "Ma-ma!" "Da-da!" Those are the sweet words we heard for two restless hours in the middle of the night.

I am paranoid. Owen still sleeps in his crib, pushed up against my side of the bed (rail off) and that way I can sleep knowing he's alive. I find myself reaching over to feel his heartbeat a million times a night. We are getting ready to move him into a twin bed this weekend. I contemplated moving him into his room, like a big boy. Then I wake up at 2am with Owen pulling out his Gtube extension and realize the oxygen cord is wrapped around his neck... twice.

I think he'll be sleeping in our room forever.

On another note. He woke up hungry and grouchy. He clung to me like my shadow. There was no puking. I suppose there was just nothing in his tummy to puke. Victory. Then I fed him 2oz of yogurt and blueberries (the same breakfast he has every morning) and five minutes later... puke. Defeat.

I'll keep working on it.

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This little girl has a post coming up soon. She got her 3rd term report card and GASP, there was a "B" in writing. Kamryn prides herself on "A's" and nothing else is acceptable. She doesn't get it from me. Turns out the "B" was a teacher error and was quickly corrected. Straight "A's" all year means she qualifies for a Golden Scholar Award. There will be a ceremony in May and she is very excited to be a part of the "smarty pants" at her school. Like I said... she doesn't get it from me.
Today was early release at school. I picked up Kamryn and one of her friends, while another friend and her mom met us at Paradise Bakery. We ate outside on the patio and the weather was amazing! Owen has been insisting on sitting in a regular chair lately and he chewed on a piece of bacon the entire time. Kinda like bacon flavored bubble gum. He might be onto something. Kamryn is now downstairs and I can hear the girls squealing as they enjoy the silly string I picked up at the dollar store.

We also ran into Katie and Jean at lunch today. Background... I nannyed for Jean when Kamryn was 4-6. Her boys are just one and two years younger than Kamryn. They are like another family to us and Katie was born just a few months before Owen. Here they are last year....

Katie and Jean came over to visit and play yesterday. Then we ran into them at the mall today! I wish I would've taken my camera to lunch today... bummer.

That's all the updates I have today. Owen is passed out. Kamryn is downstairs with the girls. I should be doing something like scrubbing toilets or blending food, but instead... I think I'll go buy myself some clothes at Gap.com. :) I like to prioritize like that.

Goodbye Night Drip

For the first time in Owen's life, he will not be eating while he sleeps. While this concept seems obvious to most of us... Owen has never had an empty tummy all night long. For the past 2 years, I have filled up a bag with formula, hooked him up to an IV pole and the pump feeds him all night long. I think it's time that we call it quits.

I think I figured out a way to get 1300 calories in his tummy throughout the day. I start at 7:30am and feed him 2oz every 30 minutes until 10pm. Don't be jealous. I don't really need a life. :)

I mix up 5 different blends of food throughout the day. I set the timer every 30 minutes, so I don't forget, and then it's time to inject. I can push a 2oz syringe pretty quickly, so Owen can be free to play. No more leashes to a pump. How awesome is that??

This is just another small milestone. I'm excited to see if he's interested in breakfast after waking up with an empty tummy. I plan on letting him get used to the new feeding routine and then I'll work on maybe feeding him 4oz every hour so that I'll have a break.

Owen is really working on his Gross motor skills and so his oral eating is at a standstill. He nibbles all day long and is still totally interested in all foods.

Speaking of Gross Motor skills... he is pulling up on EVERYTHING, climbing, standing with no support, and has figured out how to get out of bed and off the couch. We continue to be amazed.

GI and Cardiology Updates

This week we had back to back appointments with Cardiology and GI. The great news is that Owen continues to gain weight and is up to 27lbs 10oz! He's also lengthening out at 36" tall.
Our cardiology visit with Dr Stock was pretty simple. No EKG or echo.. just a simple weight and length check. We chatted for a while and are both pretty excited about how great Owen is doing (on the outside). Of course, we'd love to see him come off the oxygen, but sats in the low 60's are just not cool.
We scheduled our next Cardiology appointment for mid June. That seems like forever away, but we have a visit at Stanford in three weeks. I'm excited to not only see where Owen is medically, but also to go on vacation!!!
We visited with GI yesterday and all I can say is glad that's over. It is such a painful experience (for me) every time we go. We're spoiled with doctors that genuinely care about Owen and know him. His GI doctor is not one of them. I know he's a busy guy, but he really just wants to how many cans of formula Owen is getting and the hours. Nothing else about his health. Not how much energy he has. Not that he's not puking anymore. Not that he's constipated. When I mentioned the last of the three, he said to just give him more Miralax. Genius. Why didn't I think of that. Sigh.

Anyway... I mentioned that we are only giving Owen 1 can of Compleat formula in his night drip and I am stopping that immediately because of the morning pukes. He said that I need to give him at least 8-10 oz of the formula daily so that he's getting enough vitamins. When I proceeded to tell him that I spoke with his nutritionists.. ( to let him know that they reviewed his food diary in detail) he cut me off and said sign here and started getting up. He spent a total of 5 min with us and didn't even acknowledge Owen in the room.

Anyone know a good GI doctor??
Regardless of the experience... I am stopping Owen's night drip tonight. He had a painful puke this morning and I am not going to let it go on anymore. I'm just packing more calories and fluids into the day to make up for the night feeds. Have I mentioned that he's thriving on real foods?? Just kidding.
That is all I have for now. I'm praying that we get to Stanford in a few weeks, they take a good look at him and his heart and send us home for another six months. I'm sure we'll have another cath before/in October, since they hate to go more than a year without a cath. I have read some articles on Stanford pushing the Fontan (the last stage surgery for HLHS) until the kids are around 20kilos (40lbs). Wouldn't it be great if his heart would improve and he'd qualify for that instead of transplant? We'll see what's in store as time goes on. I never say never. :)

Phoenix Children's Museum

We have had a really fun weekend. Saturday started out with me, taking "me" time, getting my hair colored and cut. You'll see the end result later in this post. Kamryn went to a birthday party and we had my entire family over that evening.

Today we went to the Phoenix Children's Museum and it was fantastic!! Thanks to the culture pass from the library, admission was FREE! We met up with my best friend from High School, Ami, her hubby Drew and sweet Ashley. We haven't seen each other in years and it was so great to see them!!

The museum is definitely geared towards kiddos a bit younger than Kamryn, but she had a great time in the "noodle forrest". There were hundreds of noodles hanging from the ceiling and you walk through them. I don't even want to think of the million germs that are in there....gross.
Here is my new hairdo! Ok, so it's the same as it is every time I go to the salon. Blond, curly and trimmed. The noodles made it wacky and every time I came out of the "noodle forest", there were bystanders laughing. Good times.
There was a vacuum ball system on one of the walls. You put the fuzzy balls into a vacuum and they sucked them through a hose system and shot them out . Owen thought it was a dream come true. This little guy loves balls!!
Then we found a room full of ball mazes.... another little piece of heaven. There was musical instruments all over the place.
Kamryn climbed up a "fort" and dropped a ball in the tubing that wraps around the entire room until it finds it's way to a bucket.

My favorite part of the museum was a giant shopping center and kitchen area they had setup. Owen loved digging into the lentils.
Ashley was the only one that thought the shopping center was fun. They had little grocery carts and food everywhere. You can shop and check out and then go next door to prepare "stir fry and pizzas". There were booths and dining tables for the parents to play with their kiddos.
Another of Owen's favorites was this bicycle car wash. Since he can't ride a trike yet, Ashley did the driving while he went for a ride.
Here they are going for another round. Ashley was so sweet to pedal Owen around! Kamryn was way too big for the trikes.
I can't wait until Owen is walking! We will definitely be getting a membership to the museum so he can go play and explore. He and Ashley really had a great time! We are planning a trip the AZ Science Center in a couple weeks and I'm sure that'll be more exciting for Kamryn.

After we left the museum, we headed over to Toby Keith's for lunch. Yummy food and a live band! If only the mechanical bull was operating, it would've been perfect, and we would have some more exciting pictures of the adults. I wish I would take more pictures of the adults. I have none. I guess we are all so busy with the kids that we forget to take pictures of each other.

Tomorrow starts another week. Kamryn has AIMS testing all week and Owen has lots of doctor appointments. I'll have an update from Cardiology tomorrow.

Blended Diet 101

Whew. I finally finished this post. I started it over a million times because my methods keep changing. I keep finding new, simpler ways of doing things and I'm still trying to create a lasting method. I called it Blended Diet 101, because it's a beginning course. I will have a 202 class coming in a couple weeks after I master how to travel with blended foods.
It all started the end of January, just before Owen's 2nd Birthday. He was puking at least 5 times a day and I continued to pump Pediasure into his tummy. He needed to gain weight and that was what the doctors told me to do. I was to a point where I couldn't watch him suffer anymore. The puking was aggressive, he was exhausted and he wasn't developing well. I spoke with Avery (Bela's Mom) and she gave me the motivation and encouragement to try a blended diet. I will never be able to thank her enough!!

Fast forward 9 weeks and Owen is a different boy!! Very minimal puking and it is mild. He is pulling to a stand, crawling up stairs, only napping for two hours a day and playful the rest of the time. It makes us happy to see him finally feel good and I also have the satisfaction of knowing I am able to control his nutrition.

No more cans of Pediasure packed full of sugar. Can you imagine drinking a heavy, sugar filled "milkshake" all day?? Yuck. Now imagine eating salads, lean proteins, meats, fresh fruits and veges instead. We all know how great we feel when we eat a healthy diet! That was all I needed to hear to get started on a new diet for Owen.

I started off switching him 100% the first day. I knew that he had no food allergies and so the options were endless. I kept a journal of everything I fed him because I knew that his doctors and nutritionists would be curious and skeptical, to say the least.

I had no idea what I was doing or where to start. I knew that his body requires 1300 calories a day and around 30 ounces of fluids. I started there. I also know that we should get 40% protein, 30% fats and 30% carbohydrates for a balanced diet. I am not a nutritionist by any means, but I know what foods are good and what foods are not.

I measured everything out during the first month to ensure that he was getting enough of each food group. Now, I just eyeball it. You have to read a lot of labels and I kept the laptop handy when I needed to look up nutrition info on produce and meats. I have learned more than I ever wanted to know. :)

I had a blender already, but it's a pain to clean. I went to Costco and purchased the Magic Bullet and I love it!! It has been good to us and I rarely have to strain chunks out of Owen's foods before injecting it into his Gtube. You do have to use soft foods, steamed veges and warmed fruits... it's a "magic" bullet, but it does have limitations. I still haven't figured out how to blend up some rices and meats yet. More on that in a minute. It works great, it's easy to clean and I will be taking it on vacation soon.
Because the Magic Bullet isn't able to do everything and I am definitely committed to blending Owen's food long term (until he has enough energy to orally eat), I figured I would go ahead and order the Vitamix. This is the Granddaddy of blenders. They do roadshows at Costco and I have seen them throw in some crazy stuff and it pulverizes it. Amazing. The good folks at Vitamix also offer a medical discount which takes a little sting out of the $400 price tag. I am looking forward to getting our new blender soon and I'm sure it will change the way I blend many things... that will also be in my next blended diet post.
Before I start on the foods that I am feeding Owen... I will share with you a couple resources that might be helpful. I personally started with neither of these, but I am a risk taker like that. The first book is written by Marsha Dunn Klein. She is a doctor/nutritionist based out of Tucson and is a big supported in blended diets in tube fed kids. The book is a bit pricey, but can be found here. Another heart mom gave me this book a couple weeks ago and it has some great recipes and tricks to blending foods. The information in this book is for making homemade baby food using your blender which also applies to tube feeding. You can control what's in the foods and also the textures of them. When feeding your kiddo by tube, you have to make sure there aren't chunks or pulp in the foods or it will clog it. Nothing a little shot of Coke won't unplug, but still, not idea.
It's time to bring on the food! It's really so simple, but I will just share some of the foods that I use daily. I use TONS of fruits and veges!! Avocado and Bananas seem to have the most calories, while berries and dark greens pack a nutritional punch. I usually steam the veges and hard fruits (apples, broccoli, squash, pears) before blending so they are soft. Soft fruits and veges go straight in the blender (bananas, avocado, strawberries). I am not against using frozen fruits and veges as well. You need to blend up the foods with a little liquid, but instead of using water, I like 100% fruit juices. It adds calories, and the more calories the better!! I will throw in a cup of Apple Juice with a few heads of broccoli. Or a cup of Orange Juice with a blend of zucchini and squash. I love the Simply Juices because they don't have additives and I also like the Naked Juices. When I blend up fruits and veges... I do big batches and pour them into ice cube trays and freeze them. I then store them in Ziploc freezer bags and they are readily available when I need them. Just pull about 4 cubes of different fruits and veges out of the freezer, defrost them in the microwave for 20 seconds. Since produce doesn't have enough calories for an entire meal, we need to add some goodies.
We all need lots of complex carbohydrates for energy. I love to use oatmeal.. this is our favorite kind! We eat it all the time and I always have leftovers for the blender. I am just figuring out how to use Barley, Quinoa, Whole Wheat rice and Lentils in the blender so that it doesn't clog his tube. Any advice on this? I usually just cook these items, blend them up with some whole milk and strain them if needed. I'm sure the Vitamix will help grind these grains a little more than the Bullet does and this process should be easier. I usually throw in about 1/3 cup of oats, lentils, barley.. any of the above mentioned..in with the produce I just defrosted.
We also eat a ton of beans around here. It's so easy to open up a can of beans and throw a cup in the blender with some whole milk, some fresh produce or frozen cubes (from above) and a cup of whole milk. Lunch is ready within minutes.
Owen needs nuts and proteins, just like the rest of us. Blending nuts is probably not the best idea if you're going to inject them into a tube. It might work but I haven't tried it. I use nut butters because the hard work is done for me. This is about keeping it simple. We love the organic peanut butter and the almond butter from Costco. A tbsp of either of these packs tons of protein and fats. It's also 1/2 the calories he needs for his entire meal. Awesome staple in blending!
Honey is another ingredient I use daily. One tbsp has 60 calories and natural sugars. It's a great way to sweeten the food without using sugar. You know.. in case Owen decides to eat one of his meals. My newest discovery this week is Coconut Milk. It has 140 calories in 1/3 cup and 14 grams of fat! Owen needs a lot of (healthy) fats and this provides just that. There are also no sugars in this product which I love. This is also great for kids that have milk allergies.
Eggs are a great source of protein and other great stuff, totally not a nutritionist here. I'll scramble up a few eggs or throw some leftovers in the blender, add some whole milk, a cup of blueberries and a tbsp of honey. Breakfast of champs.

I love applesauce and we always have it in our fridge. It's packed with calories and sugars (usually natural if you get no sugar added). I will throw in a 1/2 cup of this, with some black beans, a tbsp of flax oil and some whole milk (maybe even coconut milk).

I used to use the fatty Yoplait yogurts but realized how packed full of sugar they were. I switched over to this Yoghurt and love it!! It's totally gross if you are eating it because it's not sweetened, but great for tube feeds! It's thick and creamy, full of calories 180cal per 1 cup, and Owen gets it every morning for breakfast with fruit and whole milk.

I love using oils in Owen's diet! I only use Flax Oil or Olive Oil because they have tons of Omega fats (healthy fats) and they pack a lot of calories in 1 tbsp. I use them daily, in at least one meal.
While I am talking about Flax.. I LOVE this flaxseed (again from Costco). I use it in our foods as well. It's packed with GOOD stuff for you.. protein, fiber, omega 3s. I think meat is optional, but we are meat eaters around here. Beef, chicken, fish, and pork is where we get the majority of our protein. I have been blending up fish (mostly Salmon) for Owen and it works great. The other meats, I just can't get to liquefy enough in the Magic Bullet. Bummer. I have been purchasing these Organic chicken and turkey meals from Super Target.. they are made be Happy Baby. It's the same concept of pre-cooking, using an ice cube tray and freezing your meals... only the work is done for you! Also, you can buy the baby food meats because they are pureed for you as well. Whatever you do, make sure your little one is getting enough protein!! Owen requires a lot of fluids due to his heart condition. I try to maximize his fluid intake at every meal by flushing his tube with at least 2 ounces of water after each meal. This gives him an additional 8oz throughout the day. I know it's empty calories, but we all need lots of water. I also make sure to use Whole Milk as his base on all his foods. I have tried Soy Milk and Almond Milk as well.. and Coconut Milk has been a new addition to that trend.

I think that pretty much sums up the foods that I give Owen. I'm pretty sure he eats healthier than any other orally eating toddler out there. Kamryn lived on chicken nuggets and pb&j's and turned out great!! I love that I am the one controlling his nutrition. If Owen was a normal oral eater and gaining weight, there would be no question as to what foods he was eating. Even though he'd probably be eating a lot less healthy diet than I am providing him now. The biggest challenge we faced with doctors was that they don't like the fact that they can't read a label on a can to make sure he's getting his nutritional needs met. That is why I kept a food journal in the beginning. I also consulted with several nutritionists, at both Stanford and PCH. I faxed them his food journal and we made adjustments accordingly. Now, all the doctors are on board and they are amazed at how well he is developing!!

Another HUGE issue that nutritionists and doctors had was sanitation. I usually throw all the syringes into a sink of HOT water with some dish soap. I clean them several times a day and lay them out on a towel to dry. You can throw them in the dishwasher but they do warp too. I get a box of 30 syringes a month from home health care and I just rotate them.

When the rubber on the syringe starts to stick from washing them... you can use a spray of Crisco on the rubber and it slides like silk through the syringe. Just a little tip ...I learned the hard way!!

That wraps it up!! If you have any questions, email me at andreanicolesimmons@hotmail.com

Also.. ALL TIPS ARE WELCOME! I am not a pro at this. I can use any and all advice you have to offer. We are leaving for Stanford in a few weeks and I am trying to figure out the best way to travel with blended foods. I thought about preparing his meals in advanced and freezing them in cubes and then putting them into individual freezer bags. I don't know how well it will work though.

If I can help one mom or one kiddo... this post was worth it!! :)

Disney On Ice

Last week we had the opportunity to go to Disney On Ice with Hope Kids. At first, I felt bad signing up because I felt guilty taking up tickets to an event when there may be other kids that are wanting to go and the waiting list wasn't short. I had to remind myself that Owen IS sick, and he deserves to go as much as the next kid. I forget how much he goes through on a daily basis because it is so normal for us. The echos, the shots, the blood draws, the constant therapies, doctors visits and daily puking is "our" normal. It's a lot for him to go through and so why not enjoy a special treat of a family night out! That's what Hope Kids is all about!
It was Disney's 100 Year Celebration and every Disney character you could imagine was on the ice. When we arrived, the great folks at the arena bumped us to handicapped accessible seating so that we didn't have to lug Owen and his oxygen tank all over the arena. They have no idea how awesome that was!

Owen stayed in his stroller the majority of the time as we were on the balcony of the second level and he could just peek over the edge and watch the show with no obstructions. He really loved it!! Kamryn was dying for some cotton candy and it came with this groovy Mickey crown. Owen stole it from his sis within seconds and didn't want her to wear it. Thankfully, Kamryn is the best big sister in the world and let Owen have her crown for the entire show.

My parents and Gigi just came back from Disneyland last week. Good thing they brought back light up toys for my kids so that I didn't have to spend a billion dollars on toys while we were there. Owen was more interested in the light up gadgets than he was certain parts of the show.

It was a great night!! Nothing beats a night out together as a family. I don't know if Carson would ever go to another ice show, but Kamryn and I love them. Except for the part where Kamryn gets embarassed cause I'm singing along to the show. Ha. Does anyone else do that??

I'm almost done with the blended diet post. I'll have it posted tomorrow.