Our Amazing Kids

My favorite days are the ones where we have nothing on the calendar. No dance, no violin, no therapies or appointments, just school then home. Today is one of those days and I finally have a second to sit down and take a minute to brag about my two incredible kids.

I've mentioned how Kamryn is very shy, quiet, and such a great girl. She has a close group of close friends that are loyal and they all get along well. She was having a hard time breaking out of her "shell" and opening up to other girls at dance and school. It extends beyond her peers and she would never raise her hand and ask a question of the teacher in front of class. Gasp. That would never happen.

Yesterday, I picked her up from school and she was in an exceptionally great mood. She cracked a joke in home room and everyone laughed. That must have really made her feel great because she signed up for the talent show! I am so proud of her!! If that weren't enough for one day, when I picked her up from dance, she was chatting with all the girls and having a great time. I must have told her how proud I was a million times yesterday. She was so excited that she took a leap of faith and stepped out of her comfort zone.

At violin lessons, she talked to her teacher about the talent show and just like that she learned an entirely new song and after just a few hours of practice has it completely memorized. AMAZING!!

We had an appointment with Dr McOmber (GI) yesterday and mister Owen has gained a whole pound since we left Stanford. He is up to 33.5lbs and 39" tall!!! Everything looks great! A little story about his new GI doc.. so he lives in our neighborhood and we go to the same LDS church. He came over the night and Owen was watching football. Anyone that has the pleasure of witnessing Owen watch football knows how crazy this boy is about the sport. When the game is on, you might as well not exist, because Owen is zoned in on the game and just goes nuts!! As soon as a commercial comes on, he gets up and you are suddenly important again. The game comes back on and he zones into the game. At Owen's appointment yesterday, Dr M said he will never be able to watch football again without thinking of mister Owen. It was very sweet.

While we were leaving the office, Owen pointed to the restroom and said he had to go potty. Weird. He has never even sat on the potty before. I decided it couldn't hurt so we went to the restroom and he totally just did this thing! Then we flushed, washed our hands and we were both so excited!! He continued this trend all night and into today. He just says "I need to go potty" and he goes! I don't think it gets any easier than that! :) There have been times that he says "I have to go" and he doesn't make it and goes in his diaper. We still finish up like he were going and he is so proud of himself. It's so great!!!

Another amazingly, huge milestone that Owen has conquered is with eating! For the past two years, Owen will put food in his mouth, chew it up and stuff it in his cheek. I then have to go into his cheek with my finger and scoop out all the food and he just couldn't/wouldn't swallow. I have felt like this was never going to end. Guess what?

One week. No scooping.

He has totally been swallowing his food!! I can't even begin to explain how huge this is!! It's so hard to explain how difficult it is to have a child that is not an oral eater. It is just a skill that we all take for granite and we all do it. Too much of it in my case. Now that Owen is swallowing, with more practice, he'll be able to eat much more larger boluses of food! Way to go Owen!!!

Now for a story that cracked me up this morning...

We had just dropped Kamryn off at school and Owen starts the following conversation.

Owen: "I want to go to my echo"
Me: Right now? Silly guy.
Owen: "The echo where they put the mask on my face"
Me: Oh.. you want to be under anesthesia with the mask and have a cath?
Owen: "Yes.. right now.. let's go!"
Me: Oh Owen.. you are so great!!

I love that despite everything, he just loves his doctors and the procedures obviously don't leave him feeling negative.

Our kids are so great!! We are such lucky parents!!

Videos and Weekend Updates!

We have been so busy lately, I am totally neglecting my blog. I have been trying to find a balance between school, the kids' activities, and keeping up with the chores. It always takes me a couple weeks to find my groove after our long, relaxing summer. I'm getting there.

I suppose the most exciting news of the last few days is that I got an email from Owen's wish granter. His wish manager has been busy, and while the trip is not booked yet, the dates are solid. We are all excited for our 10 days of magic in early December! I'm pretty sure we have no idea what is about to come and how amazing this trip is going to be.. Make A Wish makes everything magical from what I hear. 

As I was tentatively planning our trip this morning and making some dining reservations, Owen was giving me input on what rides he is just definitely going to ride. Ha. He pointed at the Incredible Hulk Roller coaster at Islands of Adventure and said "I'm totally riding that!!" When I crushed his dreams by telling him he is about 14" too short and that they probably won't let an oxygen tank aboard he said "They will too let me.. just let me.. I'm Owen!" Umm.. I think we're going to be in trouble. He is such a little daredevil!

Owen did great at Gymnastics on Friday! I have an appointment on Sept 13th to get him fitted for foot orthotics. It can't come soon enough! He pronates significantly inward and his ankles roll in, so we need to correct his gait so he can start strengthening the correct muscles. He continues to LOVE gymnastics and was totally bummed when his PT mentioned she'd be out of town next week.

I took this video of Owen a couple weeks ago and it cracks me up every time I watch it. He is saying "Papoy!" He loves to quote movies and he was quoting the minions in 'Despicable Me' when asked to "get the little girl a new unicorn toy." To which the Minions respond "Papoy?" He thinks it's hilarious!

Here is Owen's Spiderman Tattoo and he gave Daddy the Hulk. Superheros are on his mind lately and he loves watching the old 67' Spiderman episodes on Netflix.

Kamryn had a dance team hair and make-up meeting on Saturday morning. They are doing the back comb, bump style this year. I can't produce a good bump for the life of me, but here it is. I am so happy they are keeping the pony straight.. it should keep things simple. Since Kam is on a precision dance team, all the girls have to look alike on the field, so they gave us a make-up sheet. Purple eyeshadow, red lipstick and black eyeliner are just a few on the list. It's not pretty up close, but the girls look so great on stage. The girls had final fitting of the costumes and they are adorable and modest. You know I'll be posting tons of pics from her first performance at the Diamondbacks game in Sept.

Last night was Grandpa Todd's 60th surprise party.  I totally forgot my camera and was so bummed.  At the end of the party, Tatum came home with us for a sleepover with Kam and of course, Owen.  He could hardly wait til 7am to go in and wake up the girls!   All the kids begged for Donuts and after the sugar rush they decided to have a Jam session in Kamryn's room.  Here's Owen jamming to Taylor Swift's "Picture to Burn".  He is singing.. "I hate that stupid old pickup truck you never let me drive!" 

I went in the other room and started planning out our Disneyworld Trip and before I knew it 2 hours had passed.  The kids were still singing and dancing in Kam's room.  Carson was doing guy stuff.. and you know what I did?  I fed Owen and sat back down for another hour of planning.  It's been a great weekend!!

For everyone affected by the Hurricane.. we are keeping you in our prayers!

Lately...

We are finally getting used to the new "back to school" schedule.  We were only late once this week, and Kam missed Monday due to tummy cramps.  Kamryn is trying to get her groove and find time for violin practice, homework, school and dance. 

I thought Owen and I would be so bored at home without Kam this year, but we haven't had time to be bored!  We are trying to find a schedule where we can do gymnastics twice a week since Owen loves it so much!  Owen is also doing Speech and Feeding therapy at home once a week each. Although, I think he's having a little bit of therapy burnout because this morning he woke up and said "Call Connie.. tell her I'm too sick today.. she can't come."  Ha.  We may be taking a break around mid October for fall break to give him a little time away from it all.  Until then.. I have been in contact with the school district and we have a meeting on September 2nd to discuss getting preschool services at home.  I am just hoping for once weekly curriculum so I can keep him up on what he would be learning if he could go to school. 

His therapy only lasts an hour in the morning and we have the rest of the day to play and rest up until it's time to pick up Sis.  We play board games, read books, do puzzles, play trucks, play doh and he loves to make me concoctions in his kitchen.  Sometimes he just gets my camera and says "take pictures of me mama!" 

Owen has been obsessed with Spiderman!!  Here is his newest web throwing hand...

He loves all things ninja, fighting, competitive, football, basketball, baseball, everything is a weapon, video games... you name it!  He has such a big boy exterior, but he can be so sweet and snuggly.  He always says "mom, I love you!" at the most random of times.  He also says "I want you!".  I can be snuggling him in bed and he'll say "I want you" and just snuggle closer.  My heart melts!! 

Stubborn is his middle name.  He likes to be the "bad guy" and it's hard as can be to get an apology out of him.  The other day,  Livvy was in the back seat of the car saying 'I want my mama' and he quickly said "Your mama ain't never coming back!"  Not nice Owen.  Not nice.  He has the most wicked cute grin, but he knows he's being a stinker.  I know it's just Owen being three.  He has such a sweet heart and loves everyone so much.

Owen likes to have a "plan" to his day.  We wake up and he says.. "what the plan today mama?"  Then proceeds to tell me his plan.. "I know.. we go take Bobo to school, then gymbtastics and then home to nap.. is that a good plan mama? .. is it? .. how about that plan?"  If I alter his plan, he usually says "I like my plan better!" 

Today was early release at school, so the kids got picked up at 12:30.  I love to take Kam out to lunch on early release days as a special treat, as well as every other mom in town.  The line at In-N-Out burger was insane!  We got our food and headed home to play.  When I was done picking up the chaos of lunch, I headed upstairs to find the kids jamming out to Kam's iPod music.  Kam won't let me post the videos.. they're too "embarrassing".. but she didn't say anything about pictures!

Owen was so excited to have Gigi come play after school.  He loves all his cousins so much!  We are so lucky to live so close to all of the kids' cousins.  Now it's nap time.  I'm hoping that tonight we can finally give up the "binks" to the binki fairy.  Owen is in love with cash and coins so I hope that the promise of a large amount of $1 bills and quarters will convince him to give up his beloved binks. 

Sas Dance Water Party

Tonight was the "Hello Party" for the new year of dance team! Kamryn is going to have such a good time!  First on the agenda was to find the girls' 'Sassy Sister' for the year.  They buy each other birthday gifts, and small gifts at the big performances (ie: Suns games).  Each girl got a necklace with either a key or a lock.  Kam had a pink lock and so she had to find someone with a blue key.  This little sweetheart's key fit and she was so excited!  Turns out another little 4 yr old sweetie's key fit too.  I love that they pair up the tiny dancers with the older ones.  

During the chaos, Owen decided to stay in the water and play in the water falls.  He has so much fun in the water.. especially the beach entrance pools. 

Gigi is on dance team and is on one of the competition teams.  Owen loves his Gi monster cousin.

I let Kam bring her best friend to the party with us so she had someone to hang out with.  She just decided to audition and start last week, so she hasn't had time to meet the girls yet.  She is quiet and a little "shy".  A couple of girls from school are dancing on the same team as Kam this year, so it was sweet of them to come and say hello.  We had a long talk tonight about ways she can open up a little more and come out of her "shell'.  She says "I'm shy.. what if they won't like me.. what if people think I'm weird for talking to them?"  She has reached a difficult age and it's so important for me to instill in her great self esteem and to know that she can be whoever she chooses to be.  We are all afraid of rejection and it's something we all have to experience throughout our lives.  I told her if they don't like you, or if they think you are weird, it's their loss.  She is such a funny, smart, silly girl... and I just want her to open up a bit, smile and say hello.  I am the opposite and making friends has always been so easy for me.  I am extremely outgoing and can talk to just about anyone.  It's hard for me to take a step back and not compare what I would do in a circumstance, but to just help encourage her to be herself.  I don't want her labeling herself as the "awkward, shy girl".. she can be whoever she wants to be.  Mothering a little girl at the verge of the tween years is not easy, but I'm going to do my darnedest not to mess it up. :)  I was her age just 20 yrs ago.. that's not too long ago.. right?

Anyway.. where was I?  Oh yes.. I let her bring her best friend so she had a great time!!  There was a HUGE potluck with so much food it was insane.  The kids would eat and play and eat some more.  Dinner consisted of chips, fruit, veges, more chips, cookies, cupcakes and juice boxes.  We like to keep things balanced around here.

It was a great time and we are so excited for the girl's first performance at the Dbacks game in September!  We have the hair and makeup meeting next Saturday and we'll hopefully get to see the new costume design.  I think I am more excited than the girls are.  I volunteered to be a team mom this year, so I get to hang out with Kamryn backstage at all the performances.  I know there will be many performances this winter that I don't want to drag Owen too and expose him to germs.. like High School Basketball games .  I am excited to have that one on one time with my favorite girl!  It'll be good for Owen to have some "guy" time with Carson as well.  It's a win-win situation all around. 

Ready to Go!

Owen woke up with a little burst of energy today!  He sat up in bed and said "Yay.. lets go to Gymbtastics!  Then whats the plan?  Shopping?  Toy store? What da plan?"  I guess he was ready to get a move on!  As we were getting Kam ready for school and out the door, I told Owen to hurry and grab what he wanted to take to Gymnastics.  He said "just a mimute.. I getting ready!"  I look over to see he has Kamryn's tennis shoes on and Carson's hat.  Such a goofball!

We headed straight to Physical therapy and he was amazing today!!  He went back and forth across the foam pits a few times, jumped on the tramp, played basketball and did the balance beam all by himself!  He was winded and blue.. but he kept going.  I was a proud mama. 

We were passing by the toy store on the way to Nana's house, so we stopped to use his gift certificate that Dr Feinstein gave him after his cath.  He bought a talking toolbelt, flashlight, power drill and construction hat.  I had to talk him out of the Lazer guns.. everything is a weapon.. everything!  He is such a BOY.. sports, weapons and super fighters are his latest obsessions. 

We made it to Nana's, ran to lunch wth Kel and Livvy and now we are home.  Owen was so exhausted he fell asleep as soon as his head hit the pillow.  I hate to wake him up, but it's time to pick up Sis at school.  We have a water park party again tomorrow, but the rest of the weekend is scheduled downtime.  We all need it!  

No word from cardio yet, but he pushed himself hard at the gym today.  I'm thinking he's fine.. just needing to heal up a little more.

An Unexpected Cardiology Visit

We had a quick and unexpected trip to Cardiology today.

Ever since Owen's cath a few weeks ago he has been tired, duskier than usual, and a little crabby.  He gets a burst of energy before bed and I have been hanging onto that little bit of energy trying to convince myself that he's fine.  He may just be fine, but too many therapists and friends have pointed out the obvious.  It took me a week or so to realize it's not in my head. 

I called Dr Stock's nurse this morning to ask that she schedule an echo in September to coincide with Owen's appointment.  She called back 30 minutes later and said Dr Stock wants him in sooner for an ECHO.  I said that's fine.. when?  "Can you come now?" 

That lead up to his echo today.  Owen's weight was down just a little bit, but his blood pressure was his normal low.  He chatted up Helen during his echo and she gave me the lowdown on what she was seeing.  His Tricuspid valve looks a little leakier, moderate stenosis and moderate regurge, nothing too worrisome.  His function looks pretty good, which was great news!  We couldn't get a good view of his pulmonary artery because he was scrunching up his neck to protect his cath site that is still healing.  He said "I don't know WHAT my problem is, but I just protectin it."  He's so silly. 

We had a quick chat with Dr Stock and he said he would review the side by side echos and call in a bit.  Owen got his sucker and stickers and we headed home. 

Dr Stock just called and said it looks fine, but he doesn't want to miss anything.  I love that about him.  He is ordering blood work... a CBC and a BNP.  The BNP will give us a heart failure number so I'm hoping it's low.  If it did some back high, he said the only way he could think to treat it at this point is to admit Owen and start him on Milrinone.  Obviously.. not an option in my opinion.. so we will get the blood work tomorrow and pray it's fine.

Part of me feels that he is just healing up from his cath.  He has never gone into a cath feeling great before.  He always goes into the cath lab feeling tired, blue, and he comes out feeling the same.  Maybe I'm just seeing him be sluggish this time around knowing that he felt so great going into it... it's just catching me off guard. 

It could also be that when they coiled his collaterals in the cath lab, his body is trying to adjust to the new circulation changes.  Or the fact that we started him back on Sildenafil.  Maybe it's a combination of everything. 

I am not too worried at this point.  His CBC and BNP numbers looked great after his cath at Stanford, so I'm expecting no change.  We just don't want to miss anything!

We'll bump up his next cardio appointment to a little sooner and go from there.  It's so hard to know that things can change in the blink of an eye.  We have so many little heart friends struggling in the hospital right now that could use our prayers.   Some are recovering from surgery, some are struggling with rejection and some are just fighting heart failure. 

We are so grateful that Owen is home and doing well.  I can handle the exhaustion, the muscle weakness, the dusky blue, the constant tube feeds and many medications.  Anything I can do to give him the best quality of life is what matters in the end.  I am so grateful for Dr Stock..  he doesn't take my concerns lightly and he is always thinking one step ahead. 

I'll keep ya'll posted after we get the lab work back.  Again.. I think everything will be fine...I just hope he starts perking up soon.

Meds

Owen's daily medications...

I'm so glad I don't have to attempt to give him these orally!!   I started him back on Sildenafil this week and he's tolerating his increased Lasix.  He's a little dusky and more tired than usual, but I think he just needs a few more weeks to fully recover from his cath. 

Weekend Fun!

We all survived the first week back to school. Kamryn loves being a sixth grader and is going to have a really fun year! She also decided she wanted to start dance team again so she jumped into four hours of dance a week! She picked up where she left off and is doing so great. She is going to also continue playing violin once a week and in the school orchestra. She's going to have a busy, but super fun year.

Owen started back to Gymnastics on Friday morning and he loves it so much! He jumped on the tramp, played basketball, built a house with the shaped mats, did "flips", and is becoming a pro at the balance beam. I have noticed he is turning blue more often since his cath, but he's tolerating it well, even on 2 1/2 liters of oxygen.

Saturday morning we joined HopeKids at the movies to see "Smurfs". Owen loved it and giggled the entire movie! I know it didn't top Kamryn's list of favorite movies, but we had fun. Thanks HopeKids! We headed home to pick up Carson and went out to lunch. After a much needed afternoon nap, we headed over to Mesquite Aquatic Center for Dr Mortenson's (Ortho) annual pool party.   We went last year and had so much fun, we couldn't miss it this year. 

Owen was so excited to go on the "Lazy Wibber" so Carson jumped right in with him.  He loves the buckets that dump water on his head and he loves to float.  I took a lot of pictures before realizing there was no camera cartridge in the camera.. awesome.  We finally found one in the camera bag and Larissa took pics for me.  

Connor, Rylee, and Tatum all see the same ortho so it was fun to hang out with them at the party.

Owen was splashing and walking around in the zero depth area.  There is a huge area with a bucket that dumps water and wheels you can turn to have water pour out of the play structure.  Owen was loving it!  I have never seen him so purple though.  I had to take him out a few times to dry him off and try to get him back to a shade of light blue. 

The pizza, snocones, cotton candy and soda didn't give my kids enough energy to stay awake last night.  They both came home, took a bath and were in bed by 8:30.  It's crazy how much energy playing in the water takes out of you. 

We slept in late this morning and it felt amazing! When we finally made it downstairs, Owen wanted to put on his Spiderman "globs" and mask.  He brought me my camera and said "I'm the fuper ninja man!"  I took a picture which he had me delete and take another until he approved.  Ha.  I think I'm going to have to hit up Costco for some more dress up costumes this month.  He is starting to have so much fun playing dress up and pretend.  Everything has a weapon and is set out to kick butt.   I love this stage!

We have a fun, relaxing Sunday planned.  I need to get ready for our another wild week around here.  Therapy, dance, school, play...  I wouldn't have it any other way!!  Hey.. that rhymes.

The first day of SIXTH grade!

My baby girl is starting SIXTH grade today!!  It is her last year of elementary school!  Kamryn is so excited to finish out her elementary years with her best friends and was totally excited to get back today.  Owen and I are sad and miss her already.  She is going to have a great year!  She has the same teachers as last year for ALP and for home room.  This morning was the first time in six years that I was able to just drop her off on the first day of school.  Owen teared up a bit, but I held it together.  While I'm sad that she is growing up so fast, it is also fun watching her grow into the amazing girl she is!   I posted these pictures last year, but I had to do it again.  These are her first day of school pictures throughout the Elementary years.. K-6.  I remember this first picture like it was yesterday!

Kindergarten

First

I searched and couldn't find a picture of her first day of 2nd grade. This was the next closest I could find. This was also just after we found out about Owen's heart.

Second

Third Fourth

Fifth

 Sixth

As you can see, she was less than thrilled to have her picture taken today. I even took her out back to take her picture so I wasn't making her pose in front of the school with all the other kids. :)  I hope you have the best sixth grade year ever baby girl!  Next year we'll be dropping Owen off at preschool and you'll be roaming the halls of Jr. High.  Eeek.  Let's just make this year go by real S-L-O-W-L-Y.

Getting Ready

I have been so busy getting ready for back to school week!  We had to buy shoes, clothes, school supplies and water bottles.  If that weren't crazy enough, Kamryn decided she wants to audition for dance team again.  She hasn't danced in a little over a year and so we had some serious shopping to do for that as well.  Jazz shoes, ballet shoes, hip hop shoes, dance clothes, black leos, tights for ballet.. oh my goodness. 

This brings us to today.. I am broke and my house has been seriously neglected.  Kam and I spent the entire morning cleaning house, scrubbing, and organizing.  It looks so great in here!  I even did all the laundry!!

Almost...

I figured I would let the pile of clean clothes pile up throughout the day today and I'll tackle it all at once.  Bachelor Pad starts tonight and I love me some mindless tv, but nothing says "leave mom alone" more than.. if you come in the room you have to help put the pile of laundry away. 

This little guy is happy as a clam playing iPad all day while I clean.   Here he is begging me to let him buy the new Captain America app.  Ha.  How am I supposed to say no to that cute little face?  If you say no.. he says "Please Mama?  One more chance!  It not fair.  But I have money!"   He doesn't really have money, but he says he does and if you ask him where it is, he'll reach around and give you 'pretend' money.   He's a charmer and a great negotiator to boot!

I also had to share Kamryn's latest art.  So we were sitting around with a box of crayons and paper the other morning.  Owen and I were attempting to draw rainbows and we were working on his shapes.  Five minutes after we started, I look at what Kamryn's drawing and see this elaborate fruit bowl she sketched up.  Just like that.   The girl has skills!! 

Tonight is back to school night, so I need to hop in the shower and get my kids dressed.  So long are our long summer days of lounging in our pajamas all day.  We'll actually have to wake up and get ready.  Major bummer. 

New Bed .. New Cath Date!

Owen is feeling better every day.  He has been lounging around a little whiny, but he's feeling better overall. Except for the pukes... the pukes are crazy! We have been watching RIO on replay, over and over again!  He loves the round red bird that is voiced over by  Will.I.Am.  "Drop it drop it drop it LOW.." 

Owen got a new big BOY bed from his cousin Luke.  He has been in a twin bed since he turned 2, but it was Kam's old girly white bed.  He loves his new super plush mattress and took a nice long nap in it.  Kam and I spent an hour this morning breaking down the old bed and carrying the new bed upstairs.  Then we assembled and assembled until we got it right.  I'm teaching her that girls can do anything men can do.. only better.

I finally finished packing from our trip to Stanford.  Not an hour after I put the suitcases up in the closet, did I get a call from Stanford.  The call was cath lab scheduling, calling to schedule his next cath.  Yikes.  Owen is scheduled for six months out and his new cath date is February 8th!!  It seems so far away, but it will be here in a blink.

Our days have been lazy this week and we are enjoying every last minute of them.  We are officially on the one week countdown until School starts.  Owen and I are going to be so sad.

Another Great Cardiology Visit

This is how Owen has been spending his days since Surgery on Thursday. I am so happy to report that his chest pain has subsided and he is feeling much better. He is spending his days in bed, or on the couch, relaxing. I have to remind myself that he spent a little over 6 hours under anesthesia less than a week ago.. his body needs is just trying to readjust.

We had a great visit with Dr Stock today!! We are all set to increase his Lasix dose from 13 mg/day to 30mg/day. I've already made the increase of oxygen to 2.5 liters. Next week, I will start his Sildenafil and work him up to his max dose. Dr Stock feels confident in our plan and along with his Stanford team, we are very optimistic!

Dr Stock said it best.. "we are throwing darts at the board and hoping one sticks." We just have to tweak and make adjustments until we can get Owen's pressures where we want them.

Owen walked away from the appointment a happy guy. He had stickers, suckers and a new whale friend.. he named it "whaleded". He just loves Dr Stock and the entire staff at his office so much.

We are clear for four to six weeks until our next visit!! I know most of our heart friends get to go four to six months between visits, but I think Owen would have major withdrawls, so it's a good thing he keeps us on our toes.