Model Dentist Patient

I'm pretty confident in saying that no one enjoys the dentist quite like Mr Owen.  My kids are a rare breed and they have never experienced cavities, local anesthetic or the drill!  I was that kid that had a billion cavities at every visit and my awesome luck continues.  I go every six months for cleanings and each time they find something.  I'm so grateful my kids get to avoid the same dental chair experiences I have always had.   Kam did get my genes in that she was missing a few permanent teeth requiring an extra year in braces, but she will have some fabulous teeth afterwards.

Mr Owen went in for his cleaning today.  It has been a while since he couldn't go near a dentist chair for at least six months post transplant.  He let the Dr W get in there and scrape his plaque, polish, brush and gave him a good coating of fluoride.  

Seriously so calm and happy.  When he was done he said.."I think I earned myself a prize out of your treasure chest... "

Of course he went with the loudest, most obnoxious toy he could find. :)  Cavity free once again and we go back in six months!

We came home in time to meet the carpet cleaners.  It feels so good to have the carpets cleaned the grout is back to it's intended color.  Now we are off to pick up our car from the body shop. 

Weekend Rundown

Sometimes you just need a weekend to get things done.

Weeds pulled...

Hit the gym...

Grocery shopping...

Caught up on laundry...

Rearranged some furniture...

My Sis' birthday party...

Kam went to the Japenese festival...

Daddy hit another home run at his softball game...

a lot of Lego Marvel playing...

and a little downtime.

Happy Monday!

Another Week Down

"Mom... Isn't it nice to have a break from the medical stuff?  No IVs, biopsies, or things like that." He is right.. it totally is.  We haven't had a total break though.  On Tuesday, Owen had a swallow study at Phoenix Children's.  His feeding therapist joined us and I brought all his favorite snacks.. we were prepared!  He was really cooperative, drank the barium thin liquid and had no issues swallowing.  Then I handed him a tortilla chip covered in barium and his reaction was "are you serious?  I'm not eating that!"  I took a big bite to show him how 'yummy' it was and it was really disgusting.  Being the rock star he is, he took a big bite of the barium covered chip and chomped it up.  He thought it was cool to watch himself chew on xray, but couldn't get it back and swallow it.  We tried pretzels and strawberries with the same results.  In conclusion, he can swallow thin liquids and he's protecting his airway, which was the biggest concern.

I have been working on a post about Owen's eating issues.  Honestly, it is so difficult to even write.  Aside from the cardiac issues, feeding has been one of our toughest challenges.  Owen loves food and eats all day long, but mostly pockets or spits it out.  We are just trying to get to the bottom of why he won't just kick it back and swallow it.  Even something as simple as a mini M&Ms gets lost in his mouth and he can't figure out how to swallow it.  Then ten minutes later, he is gobbling down tortilla chips and salsa.  It's a process... a long, patient process.

Yesterday, we headed back to the hospital to see dermatology.  Owen has always had a mild case of keratosis, but it's been flaring up lately.  Cardiology sent us over for a consult to ensure it was just keratosis and nothing else.  The dermatologist says "It's keratosis pilaris... very common...use some moisturizer on it."   Anyone have any suggestions?  I have not tried much since it's on his face and mostly flaring up due to his anti rejection medications (Cyclosporine).  This picture doesn't do it justice.. it's really red and bumpy right now.

Another side effect of the Cyclosporine is hair growth.  While we love his Caterpillar eye brows and awesome back hair, the hair on his head gets out of control!  I took Owen to get his haircut yesterday and he was such a chatterbox the entire time.  He is just so social with everyone.  If you pass him in the store, you will be met with a smile and a wave. 

After the haircut, we picked up Sis and then he jumped in the tub to wash the itchy hair off.  I was in a rush to get his school work set up before Mr C arrived and asked Kam to get him out of the tub.  This is what I found.  Kam used to love to get Owie out of the shower, wrap him up and call him her little worm baby.  So she did the same thing yesterday.. only he looks huge now!  I don't know why this picture cracks me up...

So while we don't get a break from doctors completely, it is nice to get a break from the hospital stays.  Our 2014 calendar keeps filling up and it makes me so happy.  So much fun to look forward to! 

**Don't forget to comment on THIS post  for a chance to win a $1000 gift card.

Weekend Getaway -- El Conquistador

We had a crazy fun, and busy weekend getaway.  Kam had a dance convention and competition at the Hilton El Conquistador in Oro Valley.  We left our house at 5:30am on Saturday to arrive at the resort in time for the convention to begin at 8am.  Kam danced from 8am-2pm on Saturday, competed that evening and danced again on Sunday.  There was a lot of downtime for the rest of us though.

We explored the resort for the first few hours while we waited for our room to be ready.  We found some great pools, a koi fish pond, waterslide and splash pads.

My sis drove up with Liv and Gigi.  Gi was busy dancing as well, so Owen and Liv took over and explored.  The weather was a fabulous 85 degrees both days!!

We ran to Lucky Wishbone for lunch and got back in time to feed Kam and Gi.  They only had a 45 min break for lunch.  So they ate and ran!  I had an observer wristband so I could drop in and watch Kam dance from time to time.  When I stopped in a little after lunch she was in tears.  She sprained her ankle and the teacher didn't realize it so he called her out in the middle of the room and made her do the combination again.. in front of everyone.  She felt defeated and her ankle was SO swollen.  Thankfully we were checked into our room and she was able to relax and ice her ankle for a while.

There weren't any more classes for the day, so I ran to Target and grabbed a swimsuit for Kam and we laid by the pool for a couple hours.

I could have relaxed a few more hours, but it was time to run back and get Kam ready for competition.  I loved the view all around the resort.. this was on our way back to our room.  I love living in the desert!

Carson and Kelli ran down to that little restaurant on the left and got us an awesome table on the patio for dinner!

We had delicious food and great company.  Gigi was done dancing for the night as she got to compete earlier in the day.  Kam was just getting ready to go...

I love these girlies.  

After running Kam to the dressing room I came outside and enjoyed desert poolside.  We attempted a selfie picture... another fail.  I am not cut out for selfies. :)

Gigi, Liv and Owen dipping their feet in the water...it actually makes me excited for summer.

Kam danced well and she didn't complain about her swollen ankle.  By the end of the night it was as big as a grapefruit.  We were out late, but got a good night sleep.  That was until Owen's pullup leaked all over our bed... darn Lasix.  Nothing like waking up in a hotel to soaked sheets.. ugh.

Kam was up and at the convention with Gi by 8am  Owen, Carson and I tried another restaurant and ate breakfast on the patio.  It was so gorgeous outside!!  Liv, Lucy and Owen ran around the grass and resort like they owned the place.  (Lucy and Bridgi came down late Sat night to play with us too).

We got the kids in their swimsuits and hit the pools early.

Owen was so excited "Look at me swim!"  This was the first time he has been in a pool without oxygen!!  It was like a whole new experience for him.. I was so happy for him!  He's going to be a little fishy this summer.

We decided to head over the splash pad and let the kids go wild.  Bridgi loved it! 

Owen liked chasing the girls around..

I ran and grabbed the big girls for their lunch break, Kel ordered food poolside for everyone and Carson packed up our room for checkout.  It was only a tad bit stressful (sigh) but we did it!  Kam's ankle was DONE at this point so dancing was over for her.  The kids chowed down and we hit the road earlier than planned. It was a great weekend... where else can you eat chips and salsa poolside in February? 

Midweek (totally) Randoms

I have some catching up to do...

I love this picture.  We took the kids to see the new LEGO movie this weekend.  It was pretty "Awesome" according to Owen and the rest of us loved it too. "Everything is Awesome....." (Sing along if you saw the movie)

Owen loves getting his picture taken in front of these movie signs.  He made us take his picture in front of Robocop, Captain America and Spiderman 2.  I think my little guy likes action movies.

We have been busy.. so so busy.  Kam had dance auditions at the high school this week and we still don't have results yet.  Owen has been busy with therapies.  We also had a pre-IEP meeting at the school following an eval with the Kindergarten teacher.  Owen is testing just a smidge behind the other Kindergartners on the reading and phonics, but is spot on for Math.  YAY!  We have been working hard and it's paying off!

We are waiting for speech, OT and PT to come evaluate him and are talking about adding more time to his homebound schedule.  Four hours a week is just not enough to fit in an entire common core Kindergarten curriculum.  We do our own homeschooling curriculum at home, but I also want him to be exposed to common core so when he does go to school it's not so foreign to him.

Today we got in a little crash.... eek.  It was my fault.  We were on our way to PCH for cardio clinic and the kid in front of me slammed on his breaks.  I saw it happen so I swung right and up the curb to avoid the impact of the crash and just scraped his bumper.  Just enough to shake us all up, and cause a headache of dealing with insurance companies.  The s never did show up.  We exchanged info and we made it to our cardio appt.  I'm sure the curb was fine as well.

Owen's echo looked good.  Still some higher pressures in his SVC, but it's been stented since October.  I'm sure they'll measure pressures at our next biopsy in April.  Owen's Keratosis Pilaris is flaring up so we got a referral to go to a dermatologist. Owen has had a higher voice ever since transplant and coughs often when drinking fluids.  He has a barium swallow study set up for Tue with his feeding therapist at PCH so we'll see what shows up.  If he is aspirating, even if he's not, I'm going to have him see an ENT at Stanford to check out his vocal cords to ensure there is no vocal cord paralysis from transplant.  I have a sneaky suspicion that he's totally fine, but that may just be denial too.

Aside from all that... Kam has a dance convention and competition this weekend.  I need to go find a body shop and rental car.  We have IVIG in two weeks at PCH (double ugh).  I have been having fun trying out new classes at the gym... Hip hop, Pilates, Zumba, Tabata...I even tried to cycle the other day (horrible).  My fave is Hip Hop...hands down! I'm hoping that one day I'll see my efforts paying off. :)

Oh.. I almost forgot!  It's TUBE FEEDING AWARENESS WEEK!  I'm working on a post for tomorrow!

Heart Week

This week is CHD Awareness week.  The statistics are 1 in 100... one in every one hundred babies are born have a congenital heart defect.  Owen wears his scars proudly and they tell a mighty story.  One of a brave boy who has defeated all odds.  The zipper down his chest has been opened four times.  He has eight scars where chest tubes have been placed, the most painful part of any heart surgery.  He has multiple scars on his arms and neck from PICC lines and IJ lines.  His Gtube still used daily to help him get enough nutrition. Then you look at up his smile and sparkle in his eyes and it has all been worth it! 

What is a CHD?
Everyone has their own story.

Owen's story is..

 THREE open heart surgeries to "fix" a broken heart

TEN cardiac catherizations
FIVE years on oxygen

ONE Heart Transplant
TWENTY IVIG infusions (and counting)
ELEVEN Cardiac Biopsies (and counting)
Countless lab draws, hospitalizations and daily medications.. forever.

Do you want to know what you can do to help??

*Donate Blood* -- Owen has had more blood transfusions and blood products than I can count.  I am guilty of putting this off.  You can organize a blood drive or just simply donate yourself.

*Pulse Ox Testing* -- If you, or a loved one, is pregnant and having a baby did you know you can ask for a simple, non invasive pulse ox test at the hospital.  Some states are mandating pulse ox testing {finally} and this can be an early indicator of a CHD in your infant.  1 in 100 babies are born with a CHD and many go undiagnosed. 

*Sports Physicals* -- This isn't one that gets talked about a lot, but my heart just breaks when I constantly hear on the news about a child coding on a football field or basketball court.  Most of the time, it is because of an undiagnosed heart condition.  You can ask for an ECG test during a sports physical and many times this will indicate if there is something going on with your child's heart.

*Organ Donation*-- This is obviously one that is so close to my heart!!  Talk about organ donation with your loved ones.  Make your wishes known to those closest to you.  One organ donor can save many lives!!  We pray for Owen's donor family all the time and hope they know how grateful we are to them!

*Raise Awareness* -- I feel like Owen is a walking billboard for CHDs. There is no celebrity endorsers for CHDs, you probably won't hear any big news coverage, there is no major marathon to raise funds for research, and no big funding coming to the CHD world.  There is no cure.  There is no pharmaceutical company that can make millions off a miracle drug to fix a broken heart.  So as heart moms, we are doing what we can to support each other and pray that our doctors continue to find surgical advancements to improve the quality of life for all these kids.

Six years ago, we had never heard the word Congenital Heart Defect.  Our world has forever been changed.  Too many of Owen's friends have fought so hard but lost their battles way too early.  My heart just aches when I think back and see each of their little smiles.  Life is so short and can be so unfair.  The greatest lesson I have learned in the past six years is to cherish every moment! 

Please continue to spread CHD Awareness this week.  You can share this post or you can share the photo below that was made for me by another CHD friend.  Each day we have someone new post on FB that their infant was diagnosed with a CHD and they are terrified!!  They had never heard the words heart defect or even thought of it as a possibility.  I understand because we were that couple in the ultrasound room.  Thanks you.

Moroccan Infusion and $1000 Gift Card Sweepstakes!

I live in the desert and that means everything is dry, including my skin.  I drink a ton of water but I also have to moisturize my skin all the time.  The winter is the worst time of year for my skin!  I was thrilled to try out Suave Professionals^® Moroccan Infusion Body Care line, which features authentic Argan oil from Morocco.  It is a new product line giving women everywhere access to premium quality products with the finest skincare ingredients.  Suave Professionals® Moroccan Infusion features authentic argan oil from Morocco, a lightweight miracle oil known to be rich in nutrients and antioxidants.

When I like a product I am hooked for life, and this is one of those products.  As I've gotten older, I have started to really enjoy taking baths before bed.  I figured it was a great time to try out the NEW  Suave Professionals^® Moroccan Infusion Dry Body Oil Spray. I sprayed it all over and massaged it in and it is very hydrating.  My skin felt moisturized without feeling oily because it absorbed so quickly and seals in the long-lasting moisture. The next morning I woke up and my skin looked radiant.

  Since it's cold and flu season, I have been washing my hands constantly and using gallons of hand sanitizer.  It's no surprise that my hands are cracking and look awful!  I started using the NEW  Suave Professionals^® Moroccan Infusion Body Lotion as a daily moisturizer about a week ago and have seen a significant improvement in my skin.  I like that it absorbs quickly, is not greasy and leaves my skin feeling radiant.  I started using it on my hands throughout the day, then it gets rubbed into my arms, then my legs. I really like it!

For the first time in a while, my skin is looking silky and radiant. I no longer have the scaly, dry skin that winter in the desert brings.  In another month it will be warm enough to break out the shorts and I will be ready.  Now I just need to get a little sun on these legs so they don't look so pale.

 

  Visit the Suave Beauty Facebook page www.Facebook.com/SuaveBeauty to get tips for radiant skin, style advice from celebrity stylist Brad Goreski and enter the "Radiant Wishes" sweepstakes for a chance to win Suave Professionals® Moroccan Infusion products, a spa day or a trip to Los Angeles. 

For a chance to win a $1000 gift card, let me know which of the Suave Professionals® Moroccan Infusion Body Care products you would most like to try.
            

 

 Sweepstakes Rules: 

No duplicate comments.

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Our Busy Week

Wow.. we had a crazy week and this one isn't much better.  Owen had a fantastic birthday!  Kam was home sick with the Flu.. yes, Influenza A!  Owen and Kam were both put on Tamiflu and it was magical.  Owen didn't get a single symptom and Kam was on the mend by day 4.  I took Owen to see 'The Nut Job' on his birthday and he loved that we had the theatre all to ourselves.  We opened presents when Daddy got home from work, ordered Chinese takeout (Owen's request) and cupcakes for desert.  It was a simple and perfect birthday.

By Friday, Kam was back to herself and feeling fabulous.  Then we picked up her make-up work at the Jr High and she was slammed with work to catch up this weekend.

On Saturday evening, we had tickets to tour the new Gilbert Temple.  This beauty is in our backyard.  I drive by it a million times a day and it's so gorgeous.  One of the prettiest temples I have ever seen. 

After a short 15 minute video, we got to walk through the temple and it's the only time the public is invited through the temple before it is dedicated on March 1st.  If you are local, you must go!

My parents, Uncle Rog and Gigi came with us.  My sis and her fam had tickets too but they came down with Strep and the Flu the same day.  BUMMER.  Tis the season for sickies.

After the temple, we went to my parent's house to celebrate these crazies' birthdays.  They all share birthdays really close together so we do one big hurrah with family.  It was late after the temple, they were all in pjs and totally exhausted.

Except for Kam...

I found about 45 selfies on my phone just now. 

Owen spent all morning Sunday building his new Lego sets.  Then had me take pictures of all of them. Selfies from my girl and Lego pics from my boy.. being a mom is my favorite job.

Sunday afternoon, we had yet another birthday celebration at Grandpa Todd and Monica's.  We did a combo birthday/Superbowl party.  Too bad the game and commercials were just bland this year.. where was the excitement?  I didn't take pictures either.. I guess I was just enjoying the moment.

Tonight was Kam's orchestra concert at the High School, followed by another one tomorrow.  Owen stayed home with Daddy, who is sick with a head cold.  The germs need to just go away!  Is it summer yet? 

Owen is doing so great at homebound school, but that's a post for another day.  I need some serious school advice.. so I'll save that for a post of it's own. 

Thanks for bearing with me.. that was a long post.  Enjoy this awesome video from Kam's orchestra concert tonight.  You'll recognize the song and start singing along!