"TttEEEzzz"

Say Cheese Owen.... "TttEEEEzzzz"

This little hunk o' love is feeling MUCH better. He still has some gunk in his chest, but it isn't slowing him down. Kamryn is also feeling like her old self. I, on the other hand, caught some nasty strep and feel aweful but don't have time to let it slow me down. Carson is feeling congested, but caught up on some rest this weekend. For the family that never gets sick... I think we're just getting the winter bugs out of the way before winter actually begins.
Owen just celebrated, sick in bed, his 19 Month Birthday! Owen's biggest accomplishment this month has been talking more. His vocabulary is building and he has alot to say. Just last month he would say "ah" and point to what he wanted. We've been working on actually saying the name of the object or at least saying something other than "ah." Now he'll say "eh" (yes), "ni-ni" (night night), "baaafff" (bath), "toot-toot", "choo-choo" (train), "beep-beep" (oximeter probe, yes he asks for this all the time), and many more. We're working on trick-or-treat and it sounds like "Chi-ch-cheee." It's great to hear his little voice more, as soon as he'll talk on video, I'll get it up here.

Owen has also been working on standing more. I'm pretty sure crawling is never going to be on his to-do list. He can't pull to a stand, but if we help him up, he'll stand for a few minutes before his little thighs shake from exertion. Of course, we also need to find a motivator to keep him standing. He has learned that it's very easy to get out of standing.
We got Owen's Gtube surgery scheduled for September 16th at PCH. He'll be admitted to the PICU afterwards and if all goes well, we'll be home the next day. We're excited to get rid of his NG tube, but at the same time, it freaks me out to have him put under anesthesia when he's in heart failure.

We've been working on planning our vacation to California in October, since we have to go to Stanford for a cardiology clinic. If anyone has any great ideas of beaches, aquariums or restaurants to visit, let us know! We're planning to break up the drive a little this time.. 12 hours straight is not fun. We'll start by driving to San Diego, then up through LA and then to San Fransisco and back. We're excited for this much needed vacation!
Hope you had a great weekend!!

Sicky #2

Guess who was up last night with a fever and a case of the pukies?? Nope, it was not Owen, he slept like a rock. It was little Miss Kamryn. She said she felt tired and gunky when I picked her up from school yesterday. Sure enough, she has the exact same symptoms as her baby brother.

The best part about Kamryn being sick, with the exact symptoms as Owen? She can tell me exactly what she feels! She is only feeling puky because the mucus build up in her chest, not because she's sick to her stomach. She doesn't have any of the "typical" aches and pains you can get with the flu. The congestion is making her feel ick and she feels exhausted.

This gives me an idea of what's going on with the little guy. He has been puking off and on but it does seem it's only when he has congestion built up in his throat. He has been tolerating most of his formula feeds. He hasn't had a fever for 24 hours now either. He did take a 5 hour nap yesterday and proceeded to sleep through the night. Clearly, he's fighting something off, but I do not believe that it is the flu. I've held off on giving him the Tamiflu for the time being since he is doing so much better.

Kamryn on the other hand is acting normal. Congested, but otherwise feels better this morning. She got a "get out of school free" card today, since she was puking and fevery. Is fevery a word?

So today we are forced to relax, the kids will sleep and I will continue to disinfect every square inch of my house. We don't want Daddy to get sick and we don't want these germies hanging around our home.. they are not welcome here.

Influenza A

After a long night of checking O2 sats on the oximeter, cleaning up pukies, and giving tylenol for his fevers... I think we might have a diagnosis. Influenza A.

I took Owen to see Dr Laks (Pediatrician) first thing this morning. We swabbed his throat and nose to rule out strep and the flu. The strep and Influenza B tests came back negative. Influenza A had a very faint positive sign. Several doctors were in debates on whether to really call it a true positive.

Dr Laks said to keep a close eye on him and said it will rear it's ugly head by Saturday. If he gets any worse by then, we need to take him to Phoenix Children's. If he still has symptoms by Monday, we'll do some blood cultures.

Dr Laks just called after she spoke with Dr Stock (Cardiology) and they agreed to start Owen on Tamiflu, just as a precaution. They said to watch for neurological side effects, yikes. Any increased irritability and we need to stop the Tamiflu. Got it.

It goes without saying, that we will be homebound for the next 7 days or so as to not spread any germies to others. I just gave my house the VIP scrubdown!! Owen is sleeping like he hasn't slept in months. I just switched him from clear liquids to regular ol' formula and I pray he won't puke it up. We've had a break in fevers for the last few hours. Maybe he's already fighting off this bug. I sure do hope so.

Mister Owen is Sick

Owen has been sleeping all day, which I assumed was due to his inability to sleep last night. He has been puking throughout the day today, which I assumed was his tummys way to adjust to the changes in calories and back again. Perhaps I was right about both.

I got home from my pedicure, which is awesome by the way, at 5pm. Owen had just woken up from a late nap and he was snotty. Owen has never had a runny nose in his life, all 19 months of it. Well, there was no denying it, his nose was running like a faucet. I figured it's all clear so maybe he has allergies?

An hour or so later, he started to cough, a congested kind of cough. Darn it.

Since he was trying to clear the mucus out of his throat, he started vomitting like crazy.

We showered while Carson ran to pick up some little noses and a humidifier.

Meanwhile, Owen's sats dropped into the 60's, since he can't breathe and all.

I don't like to use the bulb suckers because his poor nose bleeds so easy due to the oxygen and NG tube. I let it drain out and I just use a soft burpee cloth to clean him up. I used the little noses saline mist spray, very cool contraption.

Now he's zonked out, fast asleep. He's on a liter of oxygen and his O2 sats are finally up to 80 again. I just felt his head and he's burning up. I gave him some tylenol and now he's shivering. Poor guy.

So here we are... Owen is sick for the first time ever and I don't like it one bit.

Surgery Consult

Owen is still feeling crummy. He didn't sleep much last night because his tummy was cramping. It's hard to see him in pain because he never cries. At around 1am, it dawned on me that he didn't start cramping and screaming until 5ish. That was when I started giving him the new formula recipe. Bummer. I should have known better. He was clearly not tolerating the increased calories in the new recipe the nutritionst created. I changed his feeding bag and made a whole new batch of formula, the old way. The way I have done it for the last 10 months. It took a while, but he drifted off to sleep.

He has felt better today, but he's exhausted from not sleeping last night.

We had our appointment with Dr. Graziano this afternoon. Not to be confused with her husband, Dr. Graziano, one of our cardiologist's partners. Dr. Graziano, the woman, is our pediatric surgeon who will be placing Owen's Gtube. She explained how she prefers the Mickey Button over the PEG.

She will go through Owen's belly button and stitch his stomach to the stomach wall. The button will be placed through the muscle on the left side of his tummy. He will be in pain for a few days as they are going through his tummy muscles, but she assured us that we will be on top of his pain management. We talked about the risk of infection and oozing around the site.. gross. Thankfully, Owen is a quick healer and hopefully this won't be any different.

We should hear back by tomorrow on the date of surgery, hopefully for the week of September 14th. She said she will only admit her cardiac babes to ICU post op and he will go home from there. Sweet deal.

Our next doctor's appointment will be September 2nd with Cardiology.

I'm off to get a pedicure. My feet are just gross and it's one of my few guilty pleasures. Maybe I'll stop off at Sonic and grab me a Diet Dr Pepper on the way to feed two pleasures at once. :)

Tummy Aches

Owen has had a rough day. His tummy hurts, he's constipated and he feels crummy. I blame it on the increased calorie formula. That, and the increased Carvedilol and Lasix. Or maybe it's just normal baby tummy aches. I don't know. Poor buddy.

We have an appointment with general surgery tomorrow to hopefully set a date for Owen's Gtube surgery. I have alot of questions about infection and pain management before we go ahead with it.

I talked with our NP at LPCH* today and we are scheduled for clinic on October 22nd. Owen will have been maxed out on his Captopril for 8 weeks and his Carvedilol for 4 weeks. My biggest question will be ... "what next?"

*Lucile Packard Children's Hospital at Stanford

I'm pretty hesitant to think that his heart function will improve in the next month, but only time will tell. If it remains the same, I'd love to be able to enjoy the winter at home. Keep Owen healthy and strong. Perhaps even convince him that walking would be fun!

The good news is that we are planning a little vacation the week we are going to LPCH. I am trying to stretch the trip over a week so that we have some time at the beach, maybe Sea World,and Kamryn really wants to go to the American Girl Place. I think we could all use a little vacation!

GI Appointment

We drove down to Phoenix Children's today for an appointment with Dr. Silber, Owen's GI doc. Before the appointment we dropped in on Daddy at work and took him to lunch. Then we were 45 minutes early for our appointment so we dropped in to meet our heart friend Grace and her mom Anneke. Gracie is such a little beauty and her mom was so sweet. It was great to meet you!!

Dr Silber checked Owen's weight and surprise... Owen is losing weight. I don't believe it. Since Owen is losing weight, we had to reevaluate his calorie intake as well as the amount of fluid ounces he receives.

A nutritionist came in to talk to me about Owen's diet. I told her the formula recipe we currently use.. yes, I did say recipe. It turns out that I have only been mixing Owen's formula at 22 calories per ounce and they want him to be at 26 calories per ounce.

The nutritionist created a new recipe for the Good Start and Dr Silber gave me a bunch of Pediasure to try. I suppose if he tolerates it, we'll switch over to Pediasure so that I can stop blending up Owen's formula using a recipe. It gets old. Owen will then be at 30 calories per ounce and I can give him less volume. But then I'd have to find a way to supplement the volume with more fluids (ie: water, milk, juice) so that he meets his 1000ml of fluids a day.

It's all a perfect science.

I often wonder what they would have said when Kamryn was that age. She lived on Peanut Butter on white bread, chicken nuggets with french fries, or grilled cheese sandwiches. Yikes. But hey... she turned out alright and now eats every vege, fruit and meat you put in front of her.

Dr Silber and I discussed the Gtube surgery and he would like to have it done the second week of September while he's working inpatient at the hospital. He asked me if I wanted Owen admitted to ICU or the Floor for recovery... HA... as if that is even a decision.

The PICU at PCH has private room, with a large couch to sleep on and one nurse per 2 patients. The rooms on the floor are shared with a little reclining chair to sleep in and a roommate. Not a tough decision to be made. PICU please. He then said he doesn't have much say either way, but to tell Cardiology and they can make it happen. At least he's honest.

I'll get into the nitty gritty surgery details with Dr Graziano, the general peds surgeon, on Wednesday.

Until then...

Lock your bathroom doors...

....Owen has discovered toilet paper!

If Owen is quiet for even a second, check the bathroom, because there's a pretty good chance that the entire roll of toilet paper is unrolled.

He can twirl it...
Rip it...

Pile it up...

Play Peek-A-Boo with it...

Pick it up with his feet...

Look ma, no hands

Throw it...

Play patty cake with it...

And tonight, he even ate it.
Toilet Paper... who ever knew it could be so much fun?

Another Angel

Another one of our dear friends has returned home to heaven. He fought the same battle with HLHS that Owen did, but had how own set of complications. He fought hard and always bounced back. My heart is heavy for this precious family. It happens that his family is in my father-in-law's ward and I always enjoy talking to Heidi about our little guys and their broken hearts. It always hits too close to home. Please say a prayer for Ethan and his family. Click here to visit Ethan's story. We will miss you buddy.

School, Tubes and Therapies, Oh My!

Oh how we miss Kamryn while she is off at school! Owen has been pointing to her picture saying "Bo-Bo, Bye-Bye." Our favorite time of day is when we can go pick her up, sweat any ounce of fluid on our bodies as we walk to the pick up area, and then back into the hot car. We always make a happy hour Sonic run on the way home. Totally unhealthy, and totally necessary.

I love summer, I really do, but I'm really tired of the 110 days. I'm okay with 105, but anything hotter is just plain too hot. There are promises of rain in our weekend forecast, don't let us down!
I had to switch out Owen's tubing the other day and he wasn't amused when I wanted to take his picture. He knows that when the tubes come off, they're coming right back on. In fact, if his tape starts to pull off his face a little, he grabs his cheek and says "aaAAhhHH." It's very sweet, but so sad at the same time. Oh and his poor little cheeks.

I use gauze with neosporin, then the tubes on that so they don't come to contact with his cheeks, then I tape over it. It works for the most part, but they still look aweful.

Someday Mister Owen, you will be tube free, I promise.

Want to know what we worked on in therapy this week??

Physical Therapy -- Getting in and out of sitting, pulling to a stand, using every bribe imaginable to get Owen to cruise along the couch, getting Owen to stay on his hands and knees (crawling is not happening).

Occupational Therapy -- stacking blocks, sorting objects, and not throwing hard balls at people's heads. "Owen we don't throw balls".. oh wait, what do we do with them then?! Correction.. "Owen we don't throw balls at people." We know he understands because he kisses you where he threw it to say I'm sorry.

Speech Therapy -- we have been working on two syllable words (ma-ma, da-da, bye-bye) and now we are going to work on changing the second syllable (ma-ME, da-DE, ba-BE). He loves to immitate so everything today has been "mmmmmmmmmm-EEEEEEEEEEEEEE"

Feeding Therapy -- Owen is such a great oral eater. If only we could get him to eat more volume. For lunch he had two Top Ramen noodles, a finger lick of ketchup, a pickle, one bite of hotdog (which he chewed for 10 min) and a small sip of milk.. "Ah-Dun" he said.

Owen loves all of his therapists!! He has such a great time when they are here (with the exception of PT when she makes him really work) and we are thankful to have them.

Anticipated Cardiology Visit

Today was Owen's much anticipated cardiology appointment. I have been anxious to see an echo so we know what his little ticker is up to. Since his last echo we have made some significant medication increases in hopes that it will do some good.

We started off with Owen's weight check... 25lbs baby. Thanks to the tube, he has never had an issue gaining weight. Then we moved on to his blood pressure 85/54, good pressures. Owen chit chatted with the blood pressure machine... he says "beep, beep, beep" right along with it.
Next came the EKG. He has always been fascinated with the stickies they put on him. He helps put the clippies (for lack of a technical term) on and then he watches while we wait.

Dr Stock has two great echo techs and Owen adores them both. We tried to convince him to watch a movie which was a bust as usual. He'd rather watch the echo monitor and talk to the tech the entire hour. He did get a little squirmy at the end, but Dr Stock saved the day when he gave him his IPhone with Green Day rockin' on it.

Then we went back to the room to wait. Dr. S was extremely busy today, so we made it snappy. The good news is, Owen's heart hasn't gotten any worse. The bad news is, it hasn't gotten any better either. It's the same. His function is still moderately decreased and his tricuspid valve still has severe regurgitation. There were no major surprises, so I'm happy.

We will continue to increase his Carvedilol (beta blocker) until we reach the maximum dose of 10mg a day. We have another appointment in two weeks to followup.

I spoke with Dr. S quickly about Owen's Gtube surgery and since Owen is stable, we got the go ahead to do the surgery at Phoenix Children's. Just to clarify, a Gtube is a button that is surgically placed in his tummy for feeding. I have put it off for 19 months and it's now time.

We have an appointment with GI on Monday and Dr. Graziano (the surgeon) next Wednesday. I want to get it done before flu and RSV season roll around.

I spoke with Stanford when we left cardiology today. I gave an update on Owen's echo today and let them know where we are with the medication increases. Ideally, they would like Owen on his maximum dose of Carvedilol for four weeks before doing another clinic/evaluation. I suggested we push back his appointment at Stanford until the end of October so that he will have maxed out his meds for at least four weeks prior to our visit. So that's the new plan with Stanford. No Gtube surgery there. Just a cardiology visit in October and perhaps we'll turn it into a little family vacation!!

Owen is not currently listed for a heart. He does in fact need a transplant, there is no way around that. He only has the right half of his heart, the left side is shriveled up like a raisin. His right ventricle and atrium is extremely enlarged. His function is moderately decreased and his squeeze is weak. His tricuspid valve (the valve that delivers blood from the right atrium to the right ventricle) is severely leaky. They could replace the tricuspid valve at some point, but his heart squeeze isn't strong enough to tolerate the new blood volume and pressures.

Technically, he could be listed for a heart right now. When listed for a heart you are put into a status, based on need.

1A is the top of the list, you are hospitalized on iv medications

1B is next, you are home on iv medications

2 is last, you are home and stable, controlling your heart failure with medications

Owen would fall in the last category, status 2. The chances of him actually getting an offer for a heart are slim to none in this status.

Another issue we are up against is Owen's antibodies are extremely sensitized. He is 98% sensitized, which means that he is at higher risk for acute rejection and is limited to the donor hearts he can receive. We attempted IVIG and Rituxin (chemo) treatments in January and didn't see significant success. We will do more IVIG and be more aggressive with the treatments when the time is right.

For now, since he is stable and doing okay with the oral medications, we will postpone transplant as long as possible. It seems silly to hear that we want to postpone our son's heart transplant, but it's for the best. Heart transplants come with their own set of problems. Rejection, immunosuppression, biopsies, and when it comes down to it.. I am very scared at the idea of my son getting a new heart. I'd like to put it off forever, but that's not going to happen. It will all happen when it is meant to.

Owen will get to a point where he starts to decline. He will show further signs of distress... sweating, heavier breathing, fluid retention, ect. We will continue to see Cardiology every three weeks until we get to that point. When he reaches the point that he needs to be started on IV medications, we'll know it's time to list him for a heart and start aggressively treating his antibodies again.

Until then... we will enjoy every waking moment with him.

And he'll continue to be spoiled with suckers and stickers at every single doctors visit along the way.

Catch Up and Relax

We made it through the first week of school. I will admit that it was easier than expected and we have gotten settled into a new routine around here. Kamryn couldn't be happier. I have heard every single detail from her school days, including who takes the most bathroom breaks, who sits by whom, what project she started in art, that her friends named their tree "Lydia" this year, and so much more. Owen and I look forward to picking her up from school every day. Owen squeals with delight when he sees her. Then we listen very quietly as she tells us all about her day on the way home.

Kamryn's teacher is amazing and even sends emails telling us what they learned that week and what they will work on next week. I love to be a part of her educational experience. I got a second email from her teacher stating "Kamryn is delightful, sweet and such a great girl!!" Ahhh... I'll take a little credit for that.
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We chose to relax this weekend, made no plans and enjoyed time together. It has been wonderful! I only took a few pictures this weekend. As you can see, the kids are lounging in our bed, in their pj's on a Sunday afternoon.

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Owen's Medical Updates

As you already know, we visited Stanford Children's Hospital back in May for Owen's transplant evaluation. Since that time, we have been increasing his medications, Captopril mostly. He was on 12mg/day (equivalent to 2.3tsp) in May. Now he is on 60mg/day (equivalent to 12tsp). We have also introduced him to Carvedilol, which is a beta blocker. These changes were made in addition to his other medications....Digoxin, Aldactone, Sildenafil, Lasix and Asprin.

We haven't taken a peek at his heart since May and have no idea if the changes in medications are working for him, or against him. His cardiac output, or the way that he appears on the outside, is great! This is deceptive though as he always looks great for having only 1/2 a heart and a failing one at that.

We have an echo scheduled for this Tuesday and I am anxious to see what is going on with his heart. Dr. Stock mentioned that maybe a cardiac cath should be in his near future, but we won't have that set in stone until Tuesday. We can only pray that the medications are working so we can push off transplant a little longer.

Some have asked us if/when Owen will be listed for a new heart. It's complicated and I will put that in his cardiology post on Tuesday.

Back to Stanford....

We had scheduled a followup visit for September 24th with Dr.Rosenthal (cardiology). During that time, I suggested that we go ahead and get Owen's Gtube placed.

He has been NG (nose tube) fed since birth and it's been 18 months. He has no issues with the NG tube and actually doesn't mind it being shoved up his nose and down his throat once a month.. a little weird, but Owen is as mellow as they come. As a mom, I feel it's time. He only has the stamina to eat a few bites at a meal and because his heart doesn't work properly, he needs more calories than the average 18 month old. So not only does he not have energy to eat what a normal toddler needs to grow, he needs more calories. I still give him 100% formula feeds in his tube (and his medicine which is a blessing), but I also let him eat all the solids he wants by mouth as well.

Anyway, we have been working to get the Gtube surgery scheduled for the same time we are there for cardiology in September. It should be simple, right? Well, they can get the surgeon, but not the cardiac anesthesiologist. Then it worked out that Dr Rosenthal won't be in on the 24th, so they moved his appointment to the 23rd. Then they can't do the gtube surgery until October 1st. Yikes, that won't work.

Long story short, or at least shorter...

I'm going to put everything on hold until Tuesday. We'll figure out what Owen's heart is up to. If he needs to go to the cath lab, then do we do it in Phoenix or at Stanford. If we are going to do the cath in Phoenix, can we just schedule the Gtube surgery for the same day and get it done with one shot of anesthesia. OR, if we are going to do it all at Stanford, can we schedule it all at Stanford within a few days of each other. So many questions... no answers until Tuesday. Until then, I will patiently wait.

Now you know why a relaxing weekend was necessary.

Little Green Balloon

The days have been quiet around here with Kami at school all day. Yesterday we ventured out to the grocery store. We're thrill seekers, what can I say? Thanks to my over-excessive germ phobia, Owen never goes grocery shopping with me. Yesterday, I had no choice but to take him with me.

As a side note, I do in fact take Owen out. We go to Target, Sonic, the bank, the library, Blockbuster (you get the point). I really don't know why the grocery store is any different. When we do go to public places, he always stays in his stroller and never rides in a shopping cart. Again, germ phobic.

Okay, I actually can explain why the grocery store is completely different! Have you ever tried to grocery shop with just a stroller, no grocery cart, an oxygen tank and feeding pump? If you have, you know exactly what I mean when I say that there is very little space to put your groceries. I wish I had a camera with me to document how I had stuffed cans, produce and cereal boxes all around him utilizing every bit of space I could find.

We were stopped (too many times to count) by our fellow shoppers asking "what happened to your baby?" I smile and say he needs a heart and try my best to politely move on and out of there. No such luck. My response is usually followed up with "is the heart waiting for him already? Where does the heart come from? Why can't they use a pig heart?" and too many to list. A 15 min shopping trip easily turns into an hour.

Don't get me wrong, I LOVE me a good conversation with strangers, but I just wanted to get Owen out of there and home.

We got to the checkout and I unloaded the stroller which was impressive as it filled up an entire shopping cart when bagged. Owen kept saying "ba-ba-ba-BA-BA" and consistently got louder and louder. When I finally realized what he wanted... a balloon, I was already done paying for our groceries. The Manager came over with a green balloon and strapped it on his wrist. Again, I wish I had my camera to document the excitement on his face when he realized the balloon was his balloon.

When we got home, after slathering Owen in sanitizer, Owen played with his balloon for an hour.

I don't know how the balloon survived the biting and pinching, but it did. Until this morning when we woke up and it was shriveled into a little ball the size of a raisin. Thank you green balloon for an hour of fun on a Wednesday afternoon.

Maybe we'll go on another grocery store adventure next week.

First Day of 4th Grade

We got up bright and early this morning. Ate Kamryn's breakfast of choice, cornmeal pancakes with fresh orange juice. I gave myself an extra 30 minutes to get ready so that we wouldn't be in a rush on the first day of school. Of course, we flew out the door at 8:30 to try to make the 8:40 school bell, in a rush.

Kamryn was very excited to see her friends, find her morning line-up and tell her teacher that she was feeling better. On the way to find her class, she had to stop and hug all her teachers from years past. Everyone stopped to say hello to mister Owen. Kamryn found her line and I stopped to snap what I thought would be at least 10 pictures of her. I quickly learned that she is getting older and one photo would have to do. At least she still wants me to walk her to her line, pick her up after school and volunteer in her class. I hope that doesn't change anytime soon.
I did sneak in a picture while she was lost in the chaos of kids looking for their lines.
I can't wait to pick her up in an hour. I love to hear all about her day, and she does not spare a detail!

Owen and I have kept busy and are establishing a new normal around here. Between doctors appointments, four therapies a week and our weekly errands, I think we'll keep pretty busy. If anyone lives in the valley of the sun and wants to get together.. Owen would love to play with some friends his age. I promise, he won't bite.

Strep and Scooting

Today was the first day of 4th grade. What I planned to post about was an excited girl, smiling ear to ear in her favorite new school dress. Instead, she spent the morning at the pediatrician, getting swabbed and tested for strep throat. Positive. Poor girl. It's nothing a little antibiotic won't kill and she'll be back to school by Wednesday. That will be her first day of school, and I'll get her first day of school pictures then.
Meanwhile... Mister Owen couldn't be happier to have sister home for a few more days! He has been butt scooting all over the place and has been picking up speed. The tubes still get tangled, he still runs out of energy, but he is on the move and I couldn't be more excited for him.

He's always on the search for Sissy. He goes up and down the hallway peeking into every room until he finds her. First he checks the den...

Then he checks her room...

She doesn't actually have to be in her room. By the time he gets to her room, he usually forgets that he is even looking for her. He has found a wonderland of things he can't have. All the tiny toys, electronic gadgets, big girl books and art supplies a little guy could ever imagine.

This is when I put the camera down to make sure her things aren't destroyed within seconds.

Meet The Teacher Night

Last night was meet the teacher at Kamryn's school. She has been looking forward to seeing her friends, picking her desk, and of course Mrs. N. We pulled in to find a perfect parking spot in a no parking zone, along with all the other parents. Kamryn found the map and squealed when she found out her classroom was going to be upstairs this year. Yeah, if they only had a working elevator to get Owen, his stroller and his equipment up there. I wish I had my camera out to get shots of us picking up Owen's stroller, with him in it, and lifting it up the stairs.

Kamryn was as sweet as can be as she introduced herself to the teacher. She had to fill out a paper "All About Me". You know, what's your favorite food, subject, hobbies, ect. There was a question that said "I WISH......" and she wrote "for my baby brother to get a new heart." Can she get any sweeter? Long story short, we were there a while because those that know Kamryn, also know that she is a perfectionist. She took her time on her "All About Me" paper and until it was complete and perfect.

We went to dinner at "the peanut place," as we call it. Delicious food, loud enough that Owen can babble as loud as he wants and peanut shells all over the floor.
As much as I don't want this little girl to grow up, I am excited that she is starting 4th grade. She is going to have a wonderful year and I love to watch her learn and grow. We'll miss you during the days sis!

New Look

I am almost done redesigning my blog. My intention was to go with fall colors, but my heart is still in summer. Perhaps it's because we choose to live in the valley of the sun and it's warm all year round. There aren't really any seasons in the desert, it's hot or hotter.

I can't decide on a background pattern. What do you like more???

1. Daisies

2. Swirls
3. Leaves

4. Fancy Floral

Both kids are doing great!! Kamryn is getting excited to go back to school. Tomorrow is meet the teacher night. I remember how excited I was to find my desk, meet my teacher, and see which friends were in my class when I was little. I love to experience the same excitement with Kamryn.

Owen is holding his own. He's had a couple of bad days, but I am choosing to be optimistic that tomorrow will be a better day! His echo is on the 18th and I am anxious to see what his heart is up to. I pray the increased meds are also increasing his heart function a bit. I am not ready for transplant just yet, not that I'll ever be.

My house is fast asleep. I should join them.

Time for change

Things are changing. There are only six days of summer vacation left until Kamryn starts 4th grade. She has grown 4" and 2 1/2 shoe sizes this summer. My babies are growing, changing before my eyes. Owen is getting more confident standing and he'll be walking before I know it. A year ago, he was learning to sit, and making our favorite face of all time!

In celebration of change around here, I am going to be redesigning the blog the next couple of days. Think blue.

We have a lot of fun planned before the first day of school. Most of all, I'll be enjoying time with my two little babes. Before I know it, Kamryn will be starting Junior High at the same time that Owen will be starting Kindergarten. I sure do wish I could slow down time.

Pictures

Today was picture day for the heart babes of Phoenix Mended Hearts. We drove to Scottsdale at 6am to meet up with the other heart kiddos, ate some Krispy Kremes and chatted. It was a disaster trying to round up a bunch of little ones for a group photo, but the photographer also took some shots individually. I'll post those once I get them.

While we were waiting I snapped some pictures of my own.. ENJOY!

The morning was great, but then we also won the drawing for a FREE family photo shoot from the photographer at Codina photography. I scheduled the shoot for October when Owen will no longer have his NG tube and I can just slip off his O2 for the photoshoot. It'll be the first pictures of Owen we'll have with no tubes. I am very excited!!