Tuesday, August 31, 2010
Wiped Out
Kamryn got her first violin ever and I can't wait to post some pictures of her playing. Right now it kinda sounds like a "scccrrreeeecccchhh" when she plays, but she'll figure it out.
This is the first school year that Kamryn has needed to bring text books to and from school. Don't get me started on how heavy her backpack is. Poor thing. With her new textbooks, come lots of homework. She seems so grown up sitting at the table doing all the odd math problems for an hour at night. Last night I taught her how to use Microsoft Word so she could type up her first essay. I am amazed at her intelligence and drive to learn!! I was nothing like that at her age.
I am off to spend a good hour on the phone with insurance companies, home healthcare and the doctor's offices. Sigh.
Sunday, August 29, 2010
Party Weekend
Saturday night I got a call from our bank letting me know that someone had my debit card and they were enjoying themselves to a shopping spree in Georgia. I told the fraud department that I was looking at my card so there is no way they have it. I'm sure they duplicated it somehow. Rotten crooks. The criminals picked the wrong person to steal from because there wasn't more than $100 left in that account until payday. This is the only time I will ever be excited to be broke! :)
This morning we woke up and headed out to the Hope Kids Luau! It was SO much fun!! We were one of the first families there and settled into a cozy table next to the huge splash pool. We took Owen's long oxygen tubing and he scooted around and around the pool for several hours. We visited with other heart families and chowed down on burgers and dogs.
I realized my true age when Kamryn and I rode down the water slides over and over again..

Around 12:30, we were beat. We packed up and headed home for bath time and a long afternoon nap. Thanks Hope Kids for another amazing event!!!
Wednesday, August 25, 2010
Booked
I found a Portable Oxygen Concentrator and it's only $220 to rent for four days. A couple other places had them for over $400. Insane. I'm hoping our insurance will reimburse us since it's medically necessary to get us to the hospital. I'll deal with that later.
I purchased our airline tickets and got a pretty decent deal through Southwest. I am still a little iffy on the details of flying with his medications since they are compounded in jugs. He's on such high doses, you should see the bottle sizes of some of his meds. Much larger than the "FAA Approved" liquid. There's also the issue of taking his blended food on board in syringes. My blended creations often look a little sketch and so I'm trying to figure out how to handle that too.
I used Priceline for a rental car... can you say GREAT DEAL!?! I am more excited about my super deal for the car than anything else. I get excited about great deals.
We are staying at our favorite hotel, the one we always stay at. What's not to love about large rooms, comfy beds and free breakfast by the pool? It's impossible to get into the Ronald McDonald House, but I'll keep trying. We've never had any luck.
I appreciate you all telling me about Angel Flights. I will for sure look into that as soon as Owen is oxygen free. For some reason, there is an issue flying on the small planes with oxygen. There is something about the cabin pressure. I don't know.
We have been fortunate to have the resources available to us so that we have the ability to travel to Stanford. We have been stashing money into Owen's transplant account for a couple years now and have had some pretty amazing donations. I'm sure you've noticed the ads on the blog and the revenue from those go straight into Owen's account as well. We are so blessed to have this opportunity to get the care that we feel is best for Owen.
In two weeks, we'll be jumping on a plane. If anyone has tips for flying with toddlers, oxygen, medicine, anything... let me know! I haven't been on a plane in over 11 years and never with a little one, let alone a little one with tons of equipment.
Tuesday, August 24, 2010
We have a date

It took me hours today to track down a portable oxygen concentrator that would offer continuous flow and extra batteries for our trip. The airlines only allow a few oxygen concentrators on board and only one of those models will work for Owen. Of course, they are out of stock everywhere!! None of the oxygen rental companies will bill insurance as portable oxygen is a "convienience item". Awesome.

I found some smokin' airline deals, but still need to figure out if they are refundable. We never know if they will keep Owen and list him, or send us home. I'm sure the one time we purchase airline tickets, they'll keep him. Just cause. :)

I know I am looking forward to hearing the transplant team's opinion on how Owen is doing. You can only see so much from an echo, but a heart cath can tell a whole other story. My hope is that they can fine tune him a little to buy him more time. We'll see. He has already bought himself A LOT of time since we first learned of transplant almost 2 years ago.

I have a lot of details to work out in the next two weeks. Kamryn should stay in school and with family, but I will miss her terribly. I am selfish and want to bring her along for the fun. I know she'll be terribly bored at the hospital all day. I've never left her. I hate to leave her.

We're praying that this little guy will be home again in no time, hopefully less blue! Let the countdown begin...
Monday, August 23, 2010
Guilty
... than tackle this!!!These are all clean clothes, ready to be folded and put away. Wrinkled? A little. Why is it so hard to get them from the dryer into the drawers?? The rest of my house is shiny and clean. I can close the door and pretend this doesn't exist.
Tonight, I will tackle this. Knowing that tomorrow, it will start all over again.
Friday, August 20, 2010
MRI Results, Stanford News, and a Blue Boy
Now an update on the little guy. He has been doing this a lot....
When he's active, or sad, or doing any activity other than sleeping... he is BLUE. I took a comparison picture today. My hand is pink. Owen's feet are NOT.
Which is why I had one of these bad boys delivered today. We've always had BIG green tanks in our home for Owen's low flow oxygen (1/4-1/2 liter). As of the last month, he has required SO much more oxygen and with that new flow, I have had oxygen delivery men here around the clock switching out tanks. I finally bit the bullet and we had them bring the dreadful oxygen concentrator. They also brought this super obnoxious machine for on top that is a "at home fill system." We not only get to listen to the grinding of the concentrator, but the constant puffing of the fill system as it keeps our travel tanks full. Now if that wasn't awesome enough... the delivery guy said I can't store the concentrator in my under the stair (aka "oxygen closet"). Nope. It has to be stored in an open room, away from walls. So it sits in the middle of our family room. Isn't it lovely?
Speaking of increased oxygen equipment, blue toes and an active boy. I received a call from Stanford tonight and they wanted to know which date would work best for us to come out for Owen's cath and transplant clinics. The options? August 31st or September 8th!!! Talk about soon! I told her "anytime would be fine... we are totally available!" She is going to talk to Dr. R. and get it in the books. She'll let us know on Monday our exact itinerary. Totally off Subject...
This little girl is LOVING the fifth grade! She will get her violin on Monday and she started ALP this week. She loves being pulled out of class to go hang out with her friends and drown themselves in "challenging" work. I love my little book worm!!
Tuesday, August 17, 2010
Higher Education
It took me a while to figure out what I wanted to do when I grew up. When I had Owen, it hit me hard. I want to be a nurse. I want to work in pediatrics and someday work in the ER and with trauma patients.
I have researched nursing schools all over the state and there are waiting lists just about everywhere. I say "bring on the competition!" The only classes I have to take are Chemistry, Biology and Anatomy. Usually high school sciences will count, but I guess I'm too old. Ha. I was going to start slow, but then I thought about how fun sleepless nights and stressful afternoons would be. I am starting off with an accelerated version of Biology and Chemistry, including the labs. I am so also doing "at home" classes through the Internet so I can be home with little boy BLUE.
Yesterday, we ventured down to the college campus and purchased my books and lab kits. We were able to visit with Grandpa Todd (one of the VP's of the college) and Grandma Monica. I am now armed with all my materials, I already typed up my welcome letters and signed the course syllabus. I think I can do this. I think.
I have six weeks to complete both of these courses and then I start right into my Anatomy class. When these are completed, I can get my fingerprint clearance, forward my transcripts and take the nursing entrance exam. Then I wait.....
While I wait...
Owen will hopefully get a new heart and become a strong little boy.
Speaking of transplant. I spoke with Stanford this morning and let them know just how blue this little boy has been. They agreed that they will try to push up his cath date.
I'm hoping to get these classes done ASAP. I'm excited for Kamryn to work on my labs with me. She's going to love dissecting a squid on our very own kitchen table and mixing chemicals for chemistry. I'm ready for this next adventure and I just hope Owen continues to take a 2 hour nap every afternoon so I can get some work done!
Wish me luck. :)
Sunday, August 15, 2010
Water Park Fun
My kids' favorite place was the lazy river. There are huge splash pads with buckets that pour water on you, water slides and a torpedo tub (you know... the ones that suck you in like a toilet). I never knew this little splash pad existed and the regular fee to get in is only $.75. We'll be going back for sure!
Owen loved, LOVED the buckets of water that dump on you when you float under them.
He was giggly and pretty blue the entire time.
After about 100 times of going around and around, we got out to eat.
It was still over a hundred even as the sun was going down... one of the joys of living in the desert. Owen was chillin' in his stroller waiting for Daddy to get his snocone. All he really wanted to do was go back in the water.
But.. we waited until these three went down the water slides. Kamryn's cousins also have the same ortho so it was fun to play with them at the park.
Rylee
Kamryn
It was my turn to float around the lazy river with Owen in my lap with his oxygen tank. We went around... and around...and around. Owen wouldn't let me hold on to him so he almost went overboard on more than one occasion.
I love this little face!!
Here we are about to get dumped on... he's already anticipating it... priceless.Thursday, August 12, 2010
Medical Update
Owen's appointment was originally scheduled for Friday at 8am in at PCH. I got a call from Dr Stock's assistant yesterday and she said that he was going to make a special trip to the Mesa office JUST to see Owen. He heard about my bum knee and he also didn't want me having to lug Owen to Phoenix that early in the morning. Best Doctor Ever!!!
Owen started with a weight check that was less than impressive at 28.5lbs. All of his new motor skills are burning calories faster than I can pump them into him. It's time to bump the calories to 1500/day. Yikes. If that doesn't get him gaining, I don't know what will.
He was perfect for his EKG and his length was 37". He cried when the nurse took the EKG stickers off his chest so she gave him a new sheet of sticky EKG stickers. Those were soon stuck all over his legs and stroller. Good times.
I'm sure his echo tech was thrilled to watch "Elmo's Potty Time" for the full hour in the echo room. I will never get over how well he behaves for his echos. He just lies there with his snorty and watches a movie while the tech adjusts him, rolls him on his side and then arches him over the pillow to get up in his neck. He did say that he was done on more than one occasions, but he was easily distracted by the jumbo stuffed Elmo in the room.
Dr Stock came in after reviewing his echo and nothing has changed. It's good and bad new all at once. I always secretly hold on to hope that his echo will improve.. the function, the leaky valve, anything... so that maybe another surgery would postpone transplant. No such luck. Not today. The good news is that he is stable. I'll take stable.
His sats are a little concerning lately... he is up to a liter, sometimes a liter and a half of oxygen. His sats are barely hanging in the mid 70 range on that liter flow. When he's playing or walking (wahoo!), his sats plummet to the 50's and at times into the 40's. He quickly recovers back to his baseline with rest, but I'm seeing more blueberry boy that I'm comfortable with.
Owen's blood pressure also remains ridiculously low, but he tolerates it, so I guess it is what it is. We can't increase or adjust his meds due to this, so he is on the same doses as he was over a year ago. We are going to try to wean the Viagra over the next few weeks, the only sign I can look for that he's not tolerating the wean is that his oxygen saturations will drop. Yikes. More decreasing oxygen sats?
Dr Stock once again feels that it's best to move up Owen's cath at Stanford. If we were to do it here, we would have it scheduled for the end of the month, but we all feel more comfortable having it done at Stanford. In case something were to go wrong in the cath lab. Dr Stock will send off Owen's echo and clinic notes and I will call Stanford on Tuesday and talk to them about bumping things up from Oct to Sept. If not... at least we have things booked for October.
We have another appointment scheduled with Dr Stock in a few weeks. Until then... Owen will keep on walking! He is getting so confident on those two feet of his. We're going to buy his first "real" pair of shoes tomorrow. We are so excited for him!
Wednesday, August 11, 2010
It's that time of year....
I remember taking her for her first 1/2 day of Kindergarten like it was yesterday. Here's a look back on all of Kamryn's 1st days of school.
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
Fourth
Fifth
We are so excited to hear about your daily adventures at school! You are going to experience so much this year... from violin and playing in the orchestra, to starting in ALP and enjoying your new quirky, fun teacher! Fifth Grade is just beginning and we know you are just going to love it! Glad you had a wonderful first day!!
Monday, August 9, 2010
He Walks!!!!
Untitled from Andrea Simmons on Vimeo.
Randoms
Sunday was spent running errands, putting groceries away and cleaning out the fridge and pantry. Boring, but productive.
This brings us to today. I walked downstairs at 7:30am and my house looked like a tornado came through. I'm not joking, it was a disaster. Every single room was a disaster. How does that happen over the weekend?? My guess is that it built up over the week since I was out of commission trying to regain function in my left knee.
If there is one thing that will make me crazy, it's a messy home. Kamryn and I got started and after four hours, the house is sparkly clean! From the toilets, to the baseboards, the house is done. The laundry is almost all washed and put away. It smells nice. I am happy and everyone seems so calm.
We'll just see how long it stays like this.
Kamryn goes back to school on Wednesday and she already has planned out what she's going to wear and what she wants for lunch. I remember those days. My favorite part was visiting with my friends that I hadn't seen all summer, getting to know everyone in my class and trying to figure out how much my new teacher would let me get away with. I was a wild one. The opposite of my firstborn. She is calm, intellectual, always obeys and steals the hearts of her teachers each year. She is going to LOVE fifth grade.
But she's mine for two more days so I am off to spend some time with her before she's gone for 7 hours each day.
Thursday, August 5, 2010
Owen is 2 and a half
Owen... you are so amazing!! Each day spent with you in a blessing and we LOVE every little thing you do! At 2.5 you are weighing in at a mighty 30lbs!! You don't eat much, but you love all things food. Your favorites are beans, veges, corn-on-the-cob, chicken legs, all sauces, noodles, bacon and you prefer to drink milk. You will try anything we give you and you never spit it out. You are still storing food in your left cheek and it's not only amazing how much food you can stuff in there, but how long you can keep it there. When you are done chewing all the flavor out, you ask me to "scoop peas". I then get the honor of sticking my finger in your cheek and scooping out goops of chewed up food. It's a good thing I love you so much. Our next goal is to get you to swallow that food. But you'll figure it out soon enough.Mommy continues to blend you up lots of yummy foods and inject them into your tube every 30 minutes. You like to protest by saying "no juice" and covering up your tube. You think it's hilarious and sometimes I even bribe you to let me feed you. You are still young enough to fall for little bribes like... if you let momma feed you, I'll give you a kiss!
You have been talking up a storm the last few months. You imitate everything we say and you love to come up with new words on your own. The other night in the car daddy said "Oh, geez!" when he was a little irritated with Momma and then you said ... "oh geez!" from the backseat in your little voice. It made the car erupt with laughter.
You love to go to "bobo's moom" and play with her DSi. You also love to sit on the little computer bench and watch her play her games and only slam your little hands down on the keyboard to annoy her. You always remember to say "peas" and "tank do" and "I juv u". You give kisses when someone is sad and you are SUCH a cuddler!!
You love to listen to music... not kid music... but Black Eyed Peas, Usher, Taylor Swift, Ludacris (don't ask), Beyonce, Sugarland. You have your favorites and asks to listen to them over and over again. When you're in the groove you bounce around and make some kind of hip hoppity face that cracks us up. Here you are in mid hip hop move....
You aren't walking yet, but you have improved so much over the last few months. You cruise around on the furniture, climb up and down off the tables, crawl up and down the stairs, walk with "no hands" from the table to the couch and you'll even sometimes walk while holding momma's hands. Everything is on YOUR terms and you have a bit of a stubborn side. I don't know where you get it from, but certainly not from me. ahem. We're all pretty convinced you're going to start walking soon.
You have had a few weeks of feeling great and we are so excited to see you up and playing! You have enjoyed having sissy home for the summer and I know you will miss her when she goes back to school. Each day you play with playdoh, color, play with your choo choo trains, throw balls around the house, build blocks, push your trucks around the house, play sissy's dsi, watch a few cartoons, eat a few snacks, go swimming, take off your diaper multiple times a day (this is new), and you take a long afternoon nap. You are a busy little guy!!
I forgot to mention that you don't like to wear clothes. I'm pretty sure you are in your diaper anytime we are home. You love all things hats, socks, and shoes!! It's not unusual to see you scooting around the family room with knee socks, tennis shoes and a diaper on. You are quirky and silly and we like you just the way you are! We love you little buddy!!
Here you are doing a silly karate pose so Kamryn would take a "moomie" (movie) of you! :)
Wednesday, August 4, 2010
Knee Appt and Countdown to School
Speaking of knee... I had an appointment with an Ortho doc today and we did some xrays. The good news is that nothing is broken and his advice was "wait and see" what happens. He didn't want to order an MRI unless it gets worse over time, instead of better. His suggestion was rest, ice and to elevate the knee as much as possible. I have a followup on Tuesday with my real ortho doc when he gets back from the beach. I am praying it just magically heals itself with rest and that I'll be back in fighting shape by Tuesday.
I am off to reschedule our pedicures and hair appointments. I'm pretty sure I deserve some TLC and so does Kamryn for being such an amazing nurse to her momma! Carson ended up taking today off work to run me to my appointment and to be my man slave. HA. Joking. I am still doing most everything on my own.
Tuesday, August 3, 2010
The Accident
It was only then that I assessed the damages. My knee looked like a giant marshmallow, but hard. I couldn't bend it, nor straighten it. Sweet. Now I had a car full of groceries and a 30 lb toddler that doesn't walk. I called Carson and he said "did you file a report at the store??" Do people do that? What kind of report? I called the store and told the manager that there was no way I was unpacking the kids and coming back in right then. It's been 24 hours and I'm off to do that. I'm not going to sue the store, but they have to have reports on file of all injuries.
Here's the beauty of a swollen knee today. Notice the scars from my ACL repair in high school. I re-tore it a few months later but it never bothered me. I have a feeling that it's going to come into play now. Bummer.
Thankfully, I just so happen to know an amazing orthopedic surgeon whom I nannyed for. I called him and he's on vacation at the beach. He told me to get in with one of his partners (tomorrow at 8am) for an MRI and Xray. He'll be back on Tuesday and we'll go from there. Meanwhile, I am to stay off it and ice it. Ha. :) Easier said than done. I have no idea how I am going to do this.I can hobble off and on but it hurts like a son-of-a-gun. Owen is especially needy because he just "knows" I am off my A-Game. Kamryn has been wonderful as always and she runs up and down the stairs for me. I have to crawl.. it's sexy.
My mom had her knee replaced last year and just so happened to have this cool ice machine that has continuous cold rushing through it. So at least I'm not messing around with ice cubes and frozen packs. Carson is going to work this week because what am I going to do if I need surgery??? Yikes. I just won't think about it now. 
Monday, August 2, 2010
Happenings
Kamryn's room is DONE. All her "too small" clothes are passed down to cousins, her junk (she calls them treasures, I call some of it junk) is put away or pitched, and you can now find the books on her bookshelves. Just in time for back to school next week! She was less than thrilled to do the work, but loves the end result.
We tackled the den this weekend and Kamryn helped me build a desk for her and Owen. I got their computer all hooked up and they love having their own area in the den. Owen thinks it belongs to him and loves playing games and watching videos. I still need to build a bookshelf in there and hang the pictures. I'll take pictures when I'm done.
Next on my list is the Master Bedroom but it's hard to make it feel romantic when we have Owen's bed in our room. I'm on the lookout for the perfect bedding set and some lamps to pull it all together the best I can for now.
On Saturday night, my dad took Gigi and Kamryn to the dollar theatres to see Marmaduke. My parents have been taking the girls to the movies since Kamryn was about 4. They don't miss a kids movie and Grandpa always brings Kam home sugared up on popcorn and Slurpees. I love that she is making so many memories with her Grandparents and Gi-Monster (Aka: Gigi).
On Sunday, we celebrated my Dad's 56th Birthday. We made him grill the burger and dogs and he forgot to take the paper off the cheese. Good times. Kamryn and Gigi kept Owen and Livvy occupied while the adults visited. It was all fun until Livvy got her hands on Owen's oxygen stickies and then he pushed her over. They both proceeded to cry for 30 minutes. We all couldn't help but laugh at the commotion.
Kamryn wouldn't smile for a picture so I told her I would post one of her being silly.... she didn't believe me. :)
Owen was a bit grumpy and the only thing that made him happy was sitting in his own chair with a plate of beans. He ate most of those! This boy loves his beans.
Happy Birthday Pops!! I hope you had a good day, although I'm sure it was much calmer once we got the crazy kiddos out of there!
Now that the weekend is over, we are back to another busy week. Owen woke up feeling super crummy, poor guy. He sat up crying and said "bobo's mooom" (Kami's Room). She ran in and took him into her room. We thought that would be the end of the crabby boy, but it continued until 11 when he finally fell asleep. I hope he'll wake up feeling like a champ!
Tomorrow is a pampering kind of day. We're going for back-to-school pedicures tomorrow and then we're going to get our hair down. Owen included!




