Moms Night Out, Baptism and a Movie

This weekend has already flown by and I'm so excited that tomorrow is Memorial Day! On Saturday, Owen and I went to watch Gigi get Baptized. It seems like just yesterday she was pouring syrup on my kitchen floor and hiding on the shelves at the Dollar Store. We're so proud of you Gigi monster!! Kamryn was still feeling pretty crummy and was sad to miss the baptism, so Carson stayed home with her.


In the evening, it was time for our 3rd Heart Mom's night out. I always have such a great time with these ladies and they "get it". We try not to talk only about medical mumbo jumbo, so we talked about which docs were hotter than the others. Good times. Lots of laughs. I'm just saying.. we get each other. We ate at Postino's winebar and I am so excited they are opening up a new one on the East side. The atmosphere and food was fantastic! Next month.. casino night!We just got home from taking the kids to Kung Fu Panda 2! It was really great and the kids LOVED it! Owen decided half way through that he wanted a "hambuburger". My boy and his crazy cravings.

Tomorrow is Memorial Day. We have a fun day planned.. assuming everyone wakes up healthy.

School is Out!

It has been a brutal week for this Mama. It turns out I had the same nasty bug that Owen just got over and let me just tell you... it's terrible! I feel awful that Owen had it for 10 days and not knowing the extent of crummyness he felt. I feel even worse now that Kamryn is fighting it off today. Now that I am back on my feet, I am disinfecting my entire house!

On a much more exiting note.. School is out for summer!!! Can I get a WAHOO!!! We are so excited to have Kamryn home for the entire summer to play. Day one of summer break got off to a rough start when both kiddos decided that a 6am Mommy wake-up call was in store. Then Kamryn started feeling crummy. Tuesday we will officially start celebrating!

Owen and I have been doing a lot of this all week...
There is nothing thrilling on that tv, just PBS kids and Netflix reruns of Caillou, SuperWhy and Word World. He's actually not a huge tv watcher, but this week was a special treat, so I could rest.

Owen is in a very demanding stage. He wants what he wants and he wants it now! It's not working out too well in his favor, but time will convince him of that. His language has totally exploded and he's finally talking in sentences.. real sentences!

Owen is also walking all over like he has been for years! He still has an old main gait.. I have a video, it's just taking years to upload. I suppose strength and practice will improve his strut.

As far as eating is concerned.. wow! He wants food 24/7 and he never stops eating! He must be growing! I still tube feed him all day.. every 30 minutes.. but he wants the oral stimulation as well. Awesome for practicing his swallow.. if he ever decides that is what he is going to do with his food. I am thrilled that he is showing the desire to eat so much. It's great!!

We have a relaxing Memorial weekend planned and can't wait to get it started! It's always fun to have Daddy all to ourselves for three whole days in a row! We tried to plan a little Staycation for the three day weekend, but decided to wait until Father's Day/our 12 yr Anniversary/my birthday to do it! There are some amazing resorts in the desert and they have fun little waterparks for hotel guests, cabanas by the pool, it's going to be pretty great!!

Have a great Memorial day, be safe!

Cardiology

We had an early morning appointment with Cardiology today and both of my kiddos were getting a full workup. I wanted to make sure Kamryn's heart is perfect so I never have to wonder... and my mind was put to ease. Her heart is wonderful!

During Kamryn's echo, we were hanging out watching Harry Potter. Then Owen had his turn and chowed down on pretzels while getting his echo done. My kids are SO easy!!! I started feeling sick to my stomach when the echo tech seemed like she was concentrating on Owen's Tricuspid Valve.

We headed back into our room and waited for Dr Stock. He started by saying "Kamryn's heart is great! I have no concerns!" Then came the "How's Owen been doing?" You don't want that question from the get-go. Besides the crummy stomach bug that wiped him out for over 10 days, he has been doing great!

He has been eating .. a ton! If he would swallow the amount of food that goes into his mouth, I wouldn't use his gtube all day. He eats that much! He wakes up asking to eat. He always asks for random foods.. a hamburger, ice cream cone, peanuts, carrots, cheetos, Diet Dr Pepper, almonds, and it's always at random times throughout the day. It's constant and I am always scooping his cheek out so that he can stuff more food in. It's practice.. and I figure he has to feel great to have such a monsterous appetite, especially with me feeding him 1300 calories through his tube during the day.

Owen is also walking more, playing a ton, taking a small afternoon nap, wants to go shopping and get outta the house, ect. His oxygen saturations have been okay on a liter of oxygen and he turns blue less often (than before his Tricuspid Valve repair in February).

Dr Stock said his Tricuspid Valve, that we just fixed, is leaking more. UGH. His liver is down, which he said wasn't good, and I don't understand the whole liver part of it anyway. His fraction gradient, the pressures backing up in the Right Atrium were lower than his last echo, which can be positive, but we just don't know. His murmur was much louder this time around, which indicates more regurge into the Right Atrium.

Dr Stock said we won't know anything for sure until his cath and MRI on July 28th. His Tricuspid valve is still tight, but the amount of backflow is up. We don't know what Dr Hanley will want to do, but I am going to be so heartbroken if we have to put Owen through another TV surgery to replace his valve. Heartbroken.

We discussed the Fontan and Dr Stock was talking about the different ways to go about it and what Dr Hanley is going to look for in the MRI and Cath. The entire room started spinning, I felt every ounce of blood rush out of my face and I lost it in the garbage can under his sink. He, of course, made sure I was okay.

I don't know what happened. Everything just hit me at once. I wanted to hear that his heart is doing great.. his valve leakage is just as we wanted it.. he is on track for the Fontan. I didn't hear any of it. It was a blow. Then the worst part of it, for me, is not knowing what will happen in July.

I came home and crashed. Realized I had a fever, chills, achy body and didn't want to get out of bed. Am I sick? Maybe I have a bug that caused me to puke. Maybe it is the Progesterone I am taking to regulate my cycle. Maybe it was the combination of everything and getting news that I didn't want to hear. I have never wanted to get out of the cardiologists office so bad.

I am so glad Kamryn was home with us today to entertain Owen and help take care of him. I am grateful that she is so healthy and smart! I am going to do my best not to worry myself crazy over the next two months until we leave for Stanford. We will just enjoy our summer vacation and I will just continue to pray fir Owen's heart. It's all I can do.

My kids stats from today's visit...

Kamryn: 5'3" -- 102lbs -- sats and blood pressure fantastic!
Owen: 38" -- 30lbs -- sats at 80% on 1 liter -- blood pressure 70/40 (norm for Owen)

"Tea at the Whitehouse"

We had the honor of attending "Tea at the Whitehouse" this week. The 5th grade at Kamryn's school put on the event and each student had to pick a famous man/woman in US History. After a little research, Kamryn decided on being Helen B Taussig. Dr Taussig was not only the founder of Pediatric Cardiology, but also was a pioneer in pediatric heart surgery. She, along with Dr Blalock developed a surgery to get more oxygenated blood to "blue babies" to allow them to survive. Owen received the BT shunt, during his Norwood surgery at 5 days old. Kamryn had so much fun researching and working on his four week project.

The students had to dress up as their researched character, write a report, and also create a poster board presentation. I love assignments like this one! The students aren't just memorizing and copying information, they have to research and get to know their character. Kamryn had a lot of fun! I'm pretty sure that when she was all dressed up I got a little giddy that my baby girl might have an MD at the end of her name one day! On Kamryn's presentation board, she hand drew a heart, created a stamp that would be created in honor of Taussig, and drew a portrait of her. I love that she added flowers and pearls to her board!! I am so proud of my baby girl and I am glad that she was able to research something as amazing as Taussig. If you haven't seen the movie "Something The Lord Made".. go rent it! We watched it and it tells the story of Dr Blalock, Vivienne Thomas (surgical tech) and Dr Taussig and how they created the BT Shunt.

There are only four more days of school!! EEEKkkkk... I can't wait!!

May Days

The weather is heating up and I think I am starting, maybe, to show signs of a little tan. I am looking forward to the long summer days of laying by the pool with the kids and then coming indoors to check out our tan lines. You know.. the one where you see how white your bum is compared to your legs.

I can already smell the cocoa butter, sunblock and sweaty kids. Lots of sticky on my kitchen floor thanks to the endless boxes of popsicles that we consume. Fresh fruit and salads for lunch, with big glasses of lemonade, before our long afternoon relaxing time.

Summer break is almost here! Kamryn only has 9 more days of school and we are counting down the days. Owen is still sleeping off this nasty flu bug. He is not back to his full feeds and is still puking quite a bit. This bug has knocked him flat. No playing, no eating, no scooting around for almost a week now. He wants to take long naps, watch movie after movie and constantly says "Mama.. I want you!.. Laaaayyy down with me!" Of course, I oblige.

This May is flying by. I can't believe it's half over already. I am making plans for our trip to Stanford in July.. hotel/driving vs flying/food budgeting/beach time. I'm trying to make a little family summer vacation out of it, since we don't know what the rest of the year has in store.

Both of my kiddos have Echos scheduled for next Monday. I'm not even a bit nervous..I think I'm getting over the anxiety of going to the cardiologist every six weeks. The cath and MRI in July have me scared out of my mind, but that's a whole other ballgame.

"Mommy.. come here and lay down!" Owen is calling me. Gotta run.

Academic Night

Kamryn made Golden Scholar again this year!! Only the students with perfect grades, all "A"s, make it to this special Academic Night recognizing their achievements. Rumor has it that 5th grade is the hardest of the Elementary years and it was also Kamryn's first year in the Gifted Program. We are so proud of Kamryn for working so hard and taking on big responsibilities.

She does her work on time, has perfect penmanship, and she takes pride in everything she turns in. It helps that she has good genetics because all three of these smarty pants come from the same blood line. I love that Kamryn gets to go to school with her cousins and it helps that they are all such amazingly smart kids!
Owen was a stinker, turned comedian at the ceremony. He repeated every single name the Principal read off.. "Kamryn Simmons... Rylee Richardson..." you get the point. I was trying so hard not to be the mom that laughed out loud, but I couldn't help it. He was just plain bored and found a way to entertain himself.
There was a little reception on the basketball courts afterwards...cookies, lemonade and friends. Kamryn's besties were there... I love that she surrounds herself with good friends. I can only hope that she continues to make good choices in her friendships as she gets older.
It was a great night and we are so proud of our girl! I was never recognized for any academic achievement, with the exception of writing. Carson was the one that had perfect grades and was embarrassed when he was called on as the "highest score!" Education just came easy to him, and I was more of the social, cheerleader type. We all have our strengths and I am so glad that Kamryn continues to recognize how amazing she is!

Tummy Bug Confirmed

After another long night of puking, little sleep and a fever to boot... Owen is officially feeling crummy. He woke up this morning asking "let's go to the dotor?"

His pediatrician said there is a nasty, nasty stomach bug going around. She even experienced it first hand.

Major tummy cramping.. this explains Owen saying his tummy hurts.

Vomitting for at least 24 hours... check.

Diarrhea to follow for about 72 hours.. praying to avoid this.

Owen mouth is sticky, but moist and is still having wet diapers every 4 to 5 hours. He's not dehydrated and he's finally tolerating small, very small, amounts of Pedialyte. He is super thirsty and takes sips of water constantly. This is the one time I am grateful he's not a guzzler, but a sipper.

I got a script for Zofran in case the puking comes back with a vengeance and I'll take him in for IV fluids if he starts to get dehydrated.

Sleepy... he is so very tired. The little guy slept all day yesterday, only to wake for a sip of water or to puke. He is on his 3rd nap of the day today and it's not even noon.

I'm counting down the days until another one of us comes down with the same bug. It ripped it's way through my sister-in-law's house and Dr L. said most often, the entire family get it one after the other. Awesome.

It sounds like we are in for a super fun weekend!

Tummy Bug

Owen has a tummy bug. He was kinda puky last night when I started his night feeds.. so I turned them off. He woke up at 3am puking and puking and puking. It has been 12 hours and he is still not tolerating even little sips of water. Poor guy.

I can handle puke. I just freak out when he can't keep his heart meds down.

Kamryn stayed home from school today because she was "sick" too. I think it was more she wanted to get out of watching the 5th grade puberty video.. we all remember that one! Ha.

I have a couple more posts to catch up on, but I need to work on the puky laundry. Hopefully, Owen will feel great by tomorrow.

Barium Swallow Study

Owen had a barium swallow study this morning. He hadn't had one since he was 7 months old and that was just a tragic experience. When we first met his new GI a couple weeks back, I talked to Dr M about ordering a new study. I was not too concerned about aspiration, but more so, wanted to know what is going on when he eats food. For over a year now, he eats small niblets of anything you give him.. then he stuffs them in his left cheek. The only way it comes out is when I put my finger in there and scoop it out. Only a mother can do something so gross.. trust me on this one.

My concern was that he was having difficulty swallowing food for a reason other than lack of practice.

I didn't want the test to be a negative experience and tried to build it up as an exciting event. I told him he could pick out any food and drink he wanted to take.. he picked goldfish, milk, pringles, "strawbaberry" and his favorite.. carrots. I told him how exciting it would be to watch himself chew his food and swallow it on camera. He was stoked!!!

The feeding therapist and radiologist were fantastic today!! They took their time with him and we only used a little bribery. At first, he sipped the barium plain.. his reaction was "I do not lite dis!" Then we added a little KoolAid and I told him it tasted like a juice box... he took another sip.. "eeewwww... not that!" Then we tried a little barium to his milk.. "milk nummy!" ... then he took a sip and said "that yucky!" The great news is that we got three big sips in!!

Then we tried chewing foods. He was not a fan of his carrot being smothered in barium "I don't like icing.. wash it off." I told him one bite and I'd get him an ice cream afterwards. Why didn't I just bring ice cream? Then we tried goldfish and he wasn't having it... until I told him to be a shark and eat the fishy on the camera. It worked!

The results? HE PASSED!!!

He had no issues swallowing any of the liquids or foods. He did only swallow 1/2 the goldfish and stored the other one in his cheek and the same goes for the carrot. Go figure. The feeding therapist stayed to chat with me about the stuffing issue.

It all comes down to practice, practice and more practice eating! I'm considering an intense feeding therapy program after he fully recovers from his last surgery this fall. He has the desire to eat.. he has all the motor function to eat.. it's just a matter of making it a habit. He has to be motivated and feel hunger on a daily basis.

I never thought that I would be dealing with feeding issues well into Owen's 3rd year. It is not a huge deal as I have a means to get him all his nutrition and he eats healthier than anyone I know.

My goal is to have him tube free by his 5th Birthday and I pray that it happens sooner for him. Owen was a rock star today and I am so glad that he had a perfect study!!

**Keep reading to the next post.. I wrote about Kam's orchestra concert.

Orchestra Concert

Kamryn had her end of the year Orchestra concert this week. She worked so hard this year to learn the Violin and is progressing really well. She really wants to start private lessons this summer to help her advance quicker. She loves to practice and has mini concerts in the family room when she practices new songs. Connor (cousin) played Bass in the 6th grade orchestra, made it into honors orchestra and also plays in the symphony. These two were in diapers once.. it seems like yesterday.. so sad they are growing up.

Here is a little video clip of Kamryn playing the "Can Can" allegro. She had to audition to play in the allegro part and she was so proud of herself (as we were for her) for making it! She's standing up.. 2nd from the left, a row back.

I can't wait to go to many more orchestra concerts as the years pass on. I still can't believe that 5th grade is coming to an end. Only two weeks left!

Mother's Day

I had such a great Mother's Day this year. I woke up grumpy and tired, but after a big breakfast and a two hour nap, I was thrilled to be a mom again! We met my family for Mother's Day brunch at a new hotel in town and it was fantastic. We ate way too much, played in the photo booth, and talked to the owner (my parents friend)about his plans for the new waterpark. It was so nice to not cook or clean.

This is what Mother's Day is all about... loving on these two.

Carson got me such beautiful flowers and I appreciate it so much. I can't stop smelling them today and each time I walk into the kitchen I can't help but smile.

Kamryn made me the best card .. she always makes great ones.

I love this...

I had to inclue this photo because Owen had such a great day today. He walked more than any of us had ever seen. He was all over the ballroom and stuffing his little cheeks with food. It was great to see him feeling so good!

Mother's Day was beautiful this year. I only wish the laundry was magically folded, the bathrooms were scrubbed and the floors were mopped.

A Family Party

Grandpa Todd and Grandma Monica had us over for a Birthday/Easter/Mother's Day celebration this weekend.


The kids swam for about 30 minutes until they got out shivering.. it's warm outside, but not warm enough to heat up the pool yet. After dinner, the boys played some Wii.


And the girls played outside. I love listening to the girls play.. you hear "princesses, magic flowers, and let's pretend!" The boys just say "get em.. punch em..ahhhh.. that was awesome!"


Before it got dark out, Grandma Monica surprised the kids with a little Easter egg hunt. Owen got a little head start...




The kids found money, candy and giant light up balls. We came inside, sang Happy Birthday to the birthday bunch, and then settled in with some dessert. It was a great night with family!

Stanford Dates

After a couple months of waiting for the cath lab to open up their summer schedule, we finally got the call with dates. Owen will have his Cath and MRI on July 28th! This is going to be a lucky day because Owen will be exactly 3 yrs 6 months.. to the date. Ok, so it's not really a significant date, but I am choosing to be optimistic.

Owen has to rock this appointment! His echo has to look good.. no surprises. The cardiac MRI has to show mild to normal function. His tricuspid valve has to show mild regurgitation, showing that his TV repair in February was indeed successful over time. The cath has to show great pressures. Then... and only then.. will we get word that the Fontan is possible. I am so optimistic. Cautiously optimistic.

Transplant has been the only option for so long... so the idea of Owen having a successful Fontan is exciting! I can't even imagine his little cheeks tube free.. it's been forever!

So we will travel to Stanford at the end of our summer. Maybe we'll drive up the California coast and enjoy the beach for a few days on our way. We might fly and spend some time in San Fransisco instead. It's time for this momma to start planning.. it's what I do best.

If we get the go ahead from Dr Hanley, Dr Rosenthal and Dr Stock to move forward with the Fontan... we will have a quick turn around back to Stanford. I want to get him in for surgery before August ends. I don't want him in the hospital during the icky respiratory season and he isn't in a position to wait until the Spring.

It looks like we better have some serious fun over the next three months of freedom. Lots of swimming, movies, bbq's, family time, ball games, and lazy summer days cuddling on the couch. Life is so good!!

Monster Trucks

We had another great weekend!! On Saturday morning, I took photos for some Mother's Day projects and then Owen played at the outdoor mall playplace.. for the first time ever! I never stop to let him play because I am so afraid of germs, him being clobbered, or the fact that his oxygen cord is so short and I don't want another kid to trip. I'm so glad I threw caution to the wind.. he had SO much fun playing with the other kids and I just walked around with his oxygen tank a few feet behind him.

On Saturday night, we had the opportunity (thanks HopeKids) to go to our first ever, Monster Truck Show! The show was at an outside racetrack and we got sweet seats..front and center.


I am so glad that we were told ahead of time to bring earplugs. It was so loud! The show started out with motorcycle stunt guys and Owen loved it!! I ran to find some food, and while I waited in the hour long line for fries, I heard the cars reving up their Jet engines. SO LOUD. I also ran into some interesting characters while waiting in line.


It was so cold.. probably only 70 degrees.. and we were shivering. I didn't think to bring coats since we live in Phoenix and it's May. We totally needed them though. Kamryn was hungry, bored and freezing after 15 minutes in and was not interested in smiling for the camera. She did have a great time.. er okay time.. afterall.


I think our favorite part was when the monster trucks crushed the cars and vans. Owen kept yelling "that car BROTEN!!" .. "that one Broten.. that one broten too!" (as he pointed at every single car) He was in heaven!! He yelled and hollared and laughed. Kamryn just kept asking "can we go home now?!"


Around 9:30, they started a huge firework show while they cleaned up the destruction that the trucks left behind. We decided to wait until the end to see RoboSaurus! Then crowds of people started coming up and packing in right where we were sitting and we decided to get outta dodge! Good call! We missed all of the traffic and were home and in bed by 11. It was so much fun!!


We all slept in on Sunday and even took a mid morning nap. Then we headed to Kona Grill to sit on the patio for lunch. It was so gorgeous out! As soon as we got home, we went for our first swim this spring. Both kids jumped right in!! Owen said "swimming swimming.. I LOVE swimming!!" He really wants to go under water and just get to it, but I don't know about the nasal cannula getting submerged in water? He is so brave, I hope to have him swimming on his own by the end of summer.







Kamryn has tons of school activities coming up as she wraps up her 5th grade year! Owen has a Barium Swallow study scheduled for May 10th and Cardiology on the 23rd. This week is going to be busy and full of fun!! Happy May!