Feeling Good

Mister Owen has been feeling pretty good lately. The evidence is in my totally messy, toys everywhere, food smashed in the carpet, home. I wouldn't have it any other way!
He's been playing with all his toys, climbing on the table, walking from the table to the couch with no hands (wahoo), crawling up and down the stairs, standing in the middle of the room with no support, making playdoh creations, coloring, talking up a storm, and loving his new little potty.

Today he got his own cracker out of the pantry, climbed onto his train table and got his electric drill out so he could drill his cracker into a million tiny pieces. A normal reaction would be to have a chat about how we don't eat in the family room, or climb on tables, or drill our food... but I was so thrilled that he had the energy to do all that, I couldn't help but praise him!
The only negative to his increased energy is his decreasing oxygen saturations. I have him up to a liter of oxygen flow and when he plays he is barely tapping the high 60% range. When he stops to rest for about 10 minutes, they'll drift back up to the mid 70's.

Don't ask me what's up with the socks. Owen likes to be naked with accessories lately. Socks, hats, mittens, necklaces, belts... you name it.. he wants to wear it. It's so hot that I usually just let him play around the house in his diaper all day. It saves me at least a couple loads of the dreaded laundry each week.

I have tons of blogging to catch up on but it's harder when Owen is so busy all day. I can't wait until he realizes how much less energy he'll burn when walking. Have you ever tried to scoot around the house on your bottom??? SO hard!

Kamryn is busy getting ready for school to start in two weeks. She just found out who her teacher is going to be and she is thrilled! She was selected to play the Violin in orchestra next year and that's the instrument she wanted to learn. We just finished up our back to school shopping and now I think she's counting down the days. I, on the other hand, am going to be sad to send her back. I'm pretty sure her little Bro is going to be devestated. :(

Relax and Play Some Games

Where has the weekend gone? I feel like time is flying by lately. Can you believe that we are in the last week of July? Wow. We had another fun weekend and we didn't even leave our house!

Carson had to work on Saturday and so we watched my nieces and nephew for the day. Owen loves the older kids and he knows they adore him right back. They were all eating spaghetti together and Owen kept reaching over and snatching Connor's pasta...
Bad, bad manners. He ignored my "Owen... please don't stand up in your seat and steal other people's food." I'm pretty sure he was more interested in the 4 older kids giggling hysterically. He loved the attention and at that point, I just let him go with it. He hasn't tried it with us yet, he knows better. Ha.After we ate, we played a game of Pictionary Junior and Apples to Apples. The kids spent a couple hours building forts in Kamryn's room again. They built four forts and then brought Owen in to destroy them. Again... laughing hysterically!
I have two kids that love to snuggle. They cuddle and played in bed the whole of the late afternoon.
We had Daddy all to ourselves today. Other than a quick trip to the grocery store, we stayed home and played together all day. Kamryn helped me make some M&M Rice Krispy Treats and then we proceeded to eat half a pan.
After we were loaded with sugar, we decided to sit down and play Monopoly. We had played Clue the day before and Kamryn started crying when she realized HER player, Mrs. Peacock, was indeed the suspect that murdered the millionaire. She said she doesn't ever want to play that game again. So... Monopoly was her choice today.

I haven't sat down and played a full game of Monopoly since I was 12 or so. We played for... FOUR hours!!! Owen rolled the dice, played with the hotels and watched Elmo in the family room while we bought property and built houses. In the end, Carson clobbered us by $99 million. Kamryn and I went bankrupt.
At dinner we talked about how much fun we had this weekend. It was nice to not run errands, clean house or do projects. Now, we're ready to tackle another week.

Fun Friday

I am so bummed I forgot my camera today....

Owen and Kamryn have been begging to go back to the theatre to see "Despicable Me". Owen has parts memorized and I love watching him imitate the scenes. Hilarious! So we woke up early and caught the first movie of day. We went to a different theatre than our usual, but only because I had to use up an old gift card before it expired. I always pop my own popcorn and put it in baggies, bring my own treats from home and then we grab a $1 soda refill with the reusable cups. This "other" theatre was crazy expensive and I ended up spending $10 on 1 soda and a bottle of water. Seriously?? Do people really pay that??

Ok, so I guess I just did.

Since we were already half way to Tempe, we decided to visit Carson at work and go to Oreganos for lunch. The kids loved playing with the balls of pizza dough and we all shared a Pizookie before we left. We love lunches with Daddy!!

Carson took the kids into his office to say hello to his co-workers while I enjoyed fifteen minutes to myself in the car. I'll take what I can get. I don't understand the excitement of visiting Daddy's office, but the kids LOVE it! They talked about the Peanut Butter M&M's and missing Daddy already, until they drifted off on the way home.

It's been two hours and Owen is still asleep. Kamryn is playing her DSi in bed. Bliss.

Have a great weekend!

Potty Time

I think it's time to start potty training Mister Owen. He is ready. I have read all the websites and I have done all the assessments. "How to know when your child is ready...."

I have done this before and Kamryn took it easy on me. She just went at two when she was ready. No work, no sweat, no accidents. I know I got off easy the first time around, and I don't expect that from Owen. In fact, I don't expect him to be fully potty trained anytime soon. Don't get me wrong.. if he does it... I will be overjoyed.

My plan is to just start introducing the idea of going to the restroom. I want him to have fun with it, no pressures... for now. I ordered this fun little video today....
And this silly little toilet! I like that the seat detaches and the bottom can be used as a stool. You know... if he decides to walk ever. :) The little yellow "splash guard" is removable as well, although I don't know if that is a good idea. I haven't done this with a boy yet. The reward is that Elmo will say ten phrases in spanish and english when you're finished. Who doesn't love a talking toilet? I joke.

This Elmo toilet will find a home on the family room floor and I hope he'll just start by sitting on it, perhaps while enjoying the potty time movie. My plan is to peak his interest a little.

Owen tells me when he's going to the bathroom, or when he needs to go and he immediately asks to be changed afterwards. We got that going for us! He also has a small, totally not weird, obsession with playing in the bathroom. Unrolling the toilet paper, throwing it into the toilet and then flushing. This may be easier than I think. I sure hope it is.

>I was going to wait until he started walking before starting the toilet training process, but at this rate, he'll be going to college while butt-scooting. Joking again.

I don't know if I'm ready to start him in pullups yet, nor am I ready to implement a "reward" system for pooping. But, my hope is that he will go a few times a day and eventually, when he is fully ready... he will go on his own.

No pressure. No sweat. Just Owen having fun on his potty.

Please... do share what works for you, any advice on books, movies, ect.

Strong Willed

Owen is changing each day and his personality is a BIG one! Not an hour goes by that we aren't laughing because of his antics. He just started with this smile, but he only does it for pictures, then he laughs at himself afterwards. Silly goose.
Since he's been feeling better the last few days, I decided to setup his train track and he is loving it! I never had brothers and I just don't understand why he has to try to "crash" the train or pull the track apart so it will fall off the table. He also puts other cars on the track in the direct path of the train so that they both fall off the track and crash on the table. It must be a BOY thing.
Oh, and the wintry, knitted hat. You're probably wondering why he's wearing it in the sweltering heat of the Arizona sun. He found it the other day and won't take it off. He goes to the store with it on, he wears it around the house and he even wore it swimming. I've tried the ol' switcheroo with his baseball hats, but he says "NO Mama..." and then picks up this one and puts it back on.

It's not only the hat. He is Mr. Accessory. The other night we were headed out the door on our way to the dance studio and he wouldn't leave until I put Kamryn's bright pink mittens on him. He wore them the rest of the night. On Sunday, it was the knee high baseball socks with the knitted hat combo at the grocery store. The boy knows what he wants!
He knows what he wants and he knows how to get it! Last night was his first "real" tantrum ever. I'm a stick-to-my-guns type of mom. If I say no, I'm not about to give in. At first it was Owen wanting to play in my bathroom sink. I don't mind if he wants to splash water all over my clean mirror or soak the floor with flooded sink water. I just don't like it when he turns on the hot water instead of the cold. He knows the difference and as soon as I turn my back he turns on the hot water and smiles. The mischievous smile. He was given two warnings and then he doesn't get to play in the sink anymore. I'm sure you can predict the rest of the story.

An hour later, we were tucking Kamryn into bed and he wanted ALL of her stuffed animals. We let him pick one, but that wasn't good enough. He screamed and cried like I've never heard him (not even when he's had surgery) and then I sat him on his bed to do his thing. Zero attention usually works. Not with Owen.. he puked all over. Crying induces vomitting in his little body and then the tantrum was over.

I'll be happy if that never happens again. And he ended up going to bed with none of Sis's stuffed animals. I stick to my guns.
99% of the time, this little boy is happy, playful, helpful and LOADS of fun!! He is in love with music and knows which songs he wants to hear and he'll let us know. He loves the laptop and knows how to navigate the internet quite well for a 2 year old. He can't walk, but he can surf!

I have learned to embrace his stubbornness, but it was a long time coming. If he doesn't want to eat orally, I don't push it. If he doesn't want to walk, nobody is going to make him do it. Oh, and he just started saying "NO JUICE" and "Wait Mama" when I try to feed him through his Gtube. It's every 30 minutes throughout the day, so I hear this often. He doesn't want to be fed through his Gtube, but he also doesn't want to eat orally. Another way he voices his opinions.
I honestly believe that this boy is going to do amazing things in his life. I love his strong willed attitude, his love of life and his "I'm going to do it my way" personality. I took a video of him today and as you can see, he doesn't do anything I want him to do. I love the new "sssshhh" and his sweet "I love you" at the end.

You make my days pretty amazing buddy!!

Untitled from Andrea Simmons on Vimeo.

Wrapping it Up

The sweltering heat continues in the Valley of the Sun. I'm not a fan of staying indoors, but when I go outside I feel like I am melting. It doesn't feel like our usual dry heat, but rather a moist heat. Yuck. We got our first taste of Monsoon storms tonight and I hope they will stick around.

This being said... we spend the weekend indoors and cool. I got caught up on some little chores here and there, but mostly laid around. Exciting blog content, I know.

Owen continues to feel pretty good. He has been up, playing, exploring and is talking up a storm!! He has also just started throwing a fit when he doesn't get what he wants. I'm going to consider us lucky that it just started at 2 1/2, and not sooner. I'll have to save the details for it's Owen post.

Kamryn is excited for the week ahead.. we have tons of fun planned.

I'll wrap up this less than exciting, picture free post. Hope your weekend had a little more "spice' than ours!

Feeling Good

Owen woke up yesterday... feeling great!!! I have been praying for this day for weeks and it continued on through today! He has been playful, entertaining and SO happy! The only downfall to the increased activity is that he is a puke-a-holic. I'll take it. Instead of laying in bed... or the floor... or the couch... he's been standing up and getting into mischief. You can probably see me smiling through the computer screen.
We ventured out to the movies this morning to see "Planet 51", but Owen was less than thrilled that it was NOT "Despicable Me." He kept saying "Done" and "bye bye". Thank goodness for short movies! We made it up to him by bringing Tatum and Rylee home with us after the movie. Owen doesn't have any cousins his age, but he has many that are older.... ask him if he minds the attention. Ha. They cater to him and give him anything he wants. We are in SO much trouble when he actually has to socialize with kids his own age.
The girls built a fort by dragging the kitchen chairs upstairs and raiding the linen closet. It kept them busy until it all came tumbling down. If they were boys, they would have rebuilt it with better construction. Instead, they cleaned up the room and brought the chairs back downstairs. So sweet! I had to bribe Owen to take a nap today, that's how good he felt. He was thrilled when he woke up and Connor was here to play too.
Kamryn only has four weeks left of summer and are days are packed full of fun. We are all happy that Owen has a little energy back. I am concerned with the puking (5-6 times daily) and his lowered O2 sats. He's up to a liter of oxygen and sating in the low to mid 70's. Just three months ago he was on 1/4-1/2 liter and he was sating in the low 80s. Without the continuous flow oxygen... forgetaboutit.

GI Visit

We had a visit with GI this morning and it was pretty amazing. What an improvement on the docs part. I've been open about how I felt regarding his GI doctor's bedside manner. Today he was so sweet I wanted to hug him! He played with Owen, was genuinely concerned about him and we worked together to try to come up with a solution. That's all I ever wanted. :)
He seems to think that when Owen got his virus a few weeks ago, that his GI track basically shut down. That brought on the pukes and now the dreadful constipation. This along with his cardiac issues is not making for a very happy Owen. The solution? Dr S. says we should shock his GI track and wake it up. Not literally shock him, but we need to get things moving along better.

I have been giving him a cap ful of Miralax daily for the longest time. Too much information? Sorry. I need to journal this stuff for him to read one day. He'll be so proud that I shared it with the world. Speaking of Laxatives. Dr S. said to continue with the Miralax and add Pedialax once a day. I will continue to pump him full of fluids just because... have I mentioned how hot it is outside??

I have.

We are also going to start him back on Prevacid. It's not going to stop the puking, but it will help with the acid burn. That's gotta sting when he pukes 4-5 times a day. I have some crazy puke stories, but I will keep those to myself. And poor Kamryn has been traumatized enough as it is. I'm sure she's going to be THRILLED to go back to school soon.

There we have it. A GI plan of action. We left with two suckers, some prescriptions and a handful of stickers that are stuck to the floormats in my car as of now.
Owen continues his lazy summer days of lying around on the floor. Today I rented him "Spun-Bob" from Redbox to give me a break from "Yo Gabba" and " Mel-Mo". Happy Tuesday to you!

Bake to Broilen

Those are the words of the meteorologist tonight. It's supposed to be a HOT week. In the desert, we are used to dry heat... burn your skin off heat. Then the Monsoons come in and bring lots of moisture and humidity... only there hasn't been any rain to back it up. It is so miserable outdoors!

My mom and I took the kids for a dip in our pool tonight. Owen lasted only five minutes before he wanted to go indoors. I guess where I am getting at is what do I do to keep my kids entertained indoors all day?? I am not a homebody. I like to get out and have fun. I don't even feel like shopping lately. That's how bad it is.

I can't wait until the Monsoon storms roll in and bring with them the furious rain and thunder. I LOVE me a good Monsoon storm. Until then. We will broil, just like the weatherman predicted.

Don't think for a second that I'm getting a nice golden tan. I am glow-in-the-dark white... trust me on this one.

A Monday Morning Update

Owen has been having it rough lately. I feel like a broken record. The puking is making me crazy. I just want him to wake up and feel great!!

The headband and crazy hair courtesy of Sis

We had a family movie day and went to see Despicable Me this weekend. The kids loved it!! Owen came home and didn't get out of bed for the rest of the day. He always gets a little burst of energy for 30 minutes at night. It's a time we look forward to. He tackles sissy, climbs over Daddy and he likes to give me lots of kisses. It never fails that with all this activity, he pukes. :)
I just spoke with the NP at Stanford. It sounded like she didn't totally believe me when I told her how Owen has been doing and requested to bump up his cath. She asked me if Dr Stock suggested it? Of course! I'm not making this stuff up. She said she would request his clinical notes and then discuss it with Dr Rosenthal. I sometimes feel like they don't take me seriously. I wouldn't request a cath earlier than necessary... nobody wants to put their babe under anesthesia unless they feel there is a problem. I don't like the way I just felt on that phone call.
I love this face. I look forward to the mornings that he feels up to playing. We played Mr Potato Head for about 30 minutes this morning. It was sweet! Off to feed the little man.. I need him to gain some weight!!

Great news.... Owen just started 3 word sentences!! "More ball peas" "I juv ooo" "poo poo peas" (change me). There are some more, but that's all I can think of right now. Ha. I love that he is developing in speech. It's progress! :)

A Morning Swim

I'd had it. We have spent too much time indoors and it was time to get out and have fun. This morning, just after breakfast, we ran over to my mom's for a little dip in the pool. Gigi came along and the kids played for a couple hours. Owen likes the little jets that pop-up on the stairs and blow bubbles everywhere.
They played, and played, and played some more. Owen puked a couple times, but he was gracious enough to give me a warning to get him out of the pool first.
The girls fought over the noodle and the goggles. Then they played mermaids. Kamryn twirled Owen around and around (which led up to the puking), and he loved it!!
We called it quits at around noon because it was HOT!!!! As soon as we got home, we took a shower, ate some sandwiches and now it's time for a nap.
This is what I love about summer!!!

Pukey Pukey....

Owen has always been a puker. He was born with reflux and it must run in my kids because Kamryn was the same way. The difference is that she stopped as soon as she started solid foods. And then Owen stopped when I started him on his blended diet in January. He has done a wonderful job tolerating his real food and has gained weight like a champ.

Over the last few months, the pukes have made a comeback. Owen doesn't eat a normal bolus schedule. He gets 2oz every 3o minutes ALL DAY LONG. I am always feeding him. That gives him small volumes of food and he has 30 minutes to empty his tummy before the next 2oz gets squirted into the tube. This is the ONLY thing that has worked. If I try 3oz.. he pukes. If I try 2oz every 15 minutes... puke.

It's cool. We found something that worked. I don't need a life anyway. :)

Back to the point. Owen started puking back in May. It only happened when he was active. Butt scooting too much, or climbing the stairs, or tackling us in bed... puke. The only time he didn't puke is when he was resting... which is the majority of the day.

Ever since he caught this naughty little virus, he's been puking ALL the time. It's making me crazy!!! He has been such a sweetheart to point to the sink and let me know that he has to puke... a warning is nice. But seriously. How much more weight can he lose?

The wonderful thing about blending his foods is that I can blend up anything. This morning he puked something as bland as greek yogurt and strawberries. For lunch, he puked up some blueberries and oatmeal. And most recently he just puked up mangos and spinach.

AAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHH.

Ok. Done Venting. I'm waiting to hear back from Stanford on bumping up his cath.

Cardiology Today

We had a cardiology appointment today, bright and early. As we were exiting the freeway, Owen saw the hospital and got really excited. He LOVES to go places... but the hospital... that had us laughing.

Owen's sats were low today...70 on 1/4 liter, 74 on 1/2 and then 65 when we took him off to go weigh him. He was delightful and cooperative. He loves when they take his "beep beeps" (translation: blood pressure and o2). His weight was down to 28lbs again. Not cool. He was up to 29.5 at our last visit four weeks ago. This virus really did a number on him.

His length was the same, so at least he didn't shrink. Ha.

He has been wiped out, which is to be expected. I just hope it doesn't take him too much longer to recover. The poor little guy is breathless when he plays and he'll roll himself in the middle of the floor and just lie there for an hour or so. Happy. But relaxing.

Another concern we have is that his blood pressure remains really low. Too low to increase his medications at all. We are stuck. There is nowhere to go from here. If his sats are going to start decreasing and he's getting exhausted easier.. what do we do from here?

Dr Stock scheduled him for an echo in five weeks and he suggested I contact Stanford about moving up his Cath date. He is currently scheduled for the third week in October, but we're not sure we should wait that long. How much longer can he go before he needs to be listed for a heart? That is the main question. Who makes the decision? Stanford.

Why wait to list him?? I hear that question all the time. So here is the best answer I have been given. Right now, Owen is pretty stable with his own heart. He's not thriving, which is heartbreaking. He is growing and developing (a little behind schedule), but he's moving along. With transplant comes it's own complications and we are only trading one heart problem for another. He will need biopsies frequently. He will be immunosuppressed. I'm sure he will be fighting rejection like crazy because of his naughty antibodies. His are significantly sensitized at 98%. We'll have lots of pre-transplant treatments of IVIG, and post-transplant treatments, including plasmapheresis. He may not make it. The reality of what lies ahead is frightening.

He is home and remains stable on his many (incredibly large doses) of medications. His oxygen remains between 75-80 with continuous flow between 1/4-1 liter. He doesn't eat, he doesn't walk (yet, but that has alot to do with stubbornness) and he just can't keep up. A new heart will give him the energy, that he never knew existed.

Transplant is inevitable. I don't know when but I always have it on my mind. I will enjoy the next five weeks before the echo. It's also the last five weeks that Kamryn is home from school.

As we were leaving the hospital today, Owen kept saying "Moooorrreee beep beeps!!" Over and over and over again....

Don't worry buddy... we'll be back all too soon!

In a Funk

I have been in a little bit of a funk lately. Maybe it's a bit of "groundhog day" syndrome. The days are all smooshing together and I feel like I am not making any progress. I know it's because Owen's been sick and puky, Kamryn has been bored, and I am going crazy at home all day. You can only clean your house so many times before you just give up and say... let it be. :)

Now it may or may not look like a tornado has blown through our home... I would never admit if it had. Ha.

It's time to burst out of this funk and get a move on. Nothing motivates me more than to buy new cleaning supplies. I'm on my way to target for new scrubbies, cleaners and dusters. That should put a little spring in my step.

Another small confession... I haven't worked out in a REALLY long time and my body is a reflection of that. I'm getting jiggles in places I didn't know were possible. It's time to give my body a little shock and wake up call.

Ok. Off with the Funk. I'm going to go enjoy some outdoor time with my little ones, then roll up my sleves and tackle the house. Tomorrow will be a better day!

I have a blended diet post I am almost done with. Owen's 29 month post (so late). And then we'll have a new Cardiology post for tomorrow. Life is SO great!! Funk gone.

Independence Day

We had a wonderful Independence Day this year! We watched a family movie, took naps, and tried to shake this virus that has ripped through our home. Kamryn is the only one that has escaped it thus far. Owen is still struggling to get rid of it and still isn't tolerating any of his feeds and so he is dropping weight like crazy. Poor Guy. I continue to attempt blending up bland foods... rice, applesauce, bananas... in hopes that he'll keep it all down. I have been giving him tons of Pedialyte to keep him hydrated in the meantime. We see Cardiology on Wednesday.
I tried to get some decent 4th of July pictures of my kiddos and Owen had the cutest outfit that said "All American Boy". Of course, he puked all over it before I got my camera out. Such is life.
Then he was less than cooperative. Poor Kamryn tried so hard to get him to smile.
Owen was happy when he was playing with scraps of toilet paper. This boy LOVES toilet paper and can shred a roll within minutes.
He was rolling around Kamryn's lap.... anything but look at the camera.
We went to my parents for a bbq and drove to a church parking lot to watch the nearby fireworks while sitting in our air-conditioned car. The show was less than impressive, but at least we saw some "boom booms!"
Fourth of July in Phoenix is HOT HOT HOT and so all you can do is swim. It's too hot to go to the local parks and enjoy the festivities leading up to the big firework show. We stayed up late watching the "cool" firework shows on tv... it was almost as if we were there.
We can't wait to see the Fireworks show at Disneyland in October!! Hope you all had a great 4th of July this year!

Germs Germs Go Away

Another day was spent at home trying to get this little guy to recover. He spent most the night coughing and puking. It wasn't pleasant. Today the cough was persistent and the puking never ending. I took him into his pediatrician and she said his lungs sound perfect. He wouldn't share his cough with her of course. Little Stinker. He has lost a whole pound this week. It took at least four weeks to gain that one pound.

I continue to pump him full of pedialyte since it was 118 degrees today and I can't stop drinking myself. I am getting as much bland food into him as possible, but all it takes is one cough and it all comes right back up.

Thankfully, the fever has stayed away and his voice has returned. We just need to get rid of this cough so that he can keep his food in his tummy. We have an appointment with Cardiology on the 7th.... that will give me a little peace of mind too.

I hope you all have a fun and safe 4th of July weekend!

Sick Day x4

I wish this little guy would just feel better soon. The fevers stopped. That saved us a trip to the hospital for chest xrays and blood draws. He lost his voice yesterday and sounded so sad and hoarse. Today, he is full of mucus and can't stop puking. I haven't given him more than a couple hundred calories a day for the past 4 days. That's going to put a damper in his weight gain and we have to go to GI next week. HA.

Dr Stock and Dr Jean have been calling us daily, a couple times, and have been so sweet!! I love that he has so many people that love and care about how he's doing. I guess we're doing all the right things. I'm going to buy stock in Pedialyte.. we have gone through SO many jugs of that stuff. Anytime I try to put food in his Gtube, he says "Stop... Wa Wa...Please?" He knows that he feels puky and only wants the Pedialyte.

My house is getting in order since we are stuck at home. It's not a bad thing seeing as it's a million degrees outside. Hopefully he'll be feeling up for the 4th! I LOVE Independence Day!!