Halloween Carnival Performance

The girls performed at our local Halloween Carnival today!! There was a small stage that the girls were dancing on and Kamryn was so nervous that she was going to dance right off the stage. She is not used to dancing on small stages. The girls usually dance on courts, fields, and auditorium stages. This was a new experience and they did a fantastic job!!

Kamryn and Daddy saving seats way before the show.  SO glad we got there early and found a shady spot.  People were standing up in the heat all over.. ugh.  It was pretty hot at 90 degrees!  I am looking forward to fall temps soon.

I usually just videotape Kamryn's performances, but today I tried to snap a few pictures too.  Major fail.  Ha.

Here is Gigi rocking it on stage too!  She is such a ham on stage!  She had a really quick costume change.. like 60 seconds.. so some girls are still wearing their fishnets. 

After the performance, Owen was begging to ride the train around the park.  At first he was on with Grandpa Todd, but got nervous and wanted me to ride.  When we switched arms I wacked Owen's head on the top of the train.. poor guy. :(  Mom fail.  

After the performance, Owen was exhausted.  There was a second show but there was no way we could stay and have Kamryn perform again.  So we missed the second show.  Bummer.  We hadn't eaten and it was 2:30, so we went with Grandpa Todd and Monica to Joes BBQ.  Out of the heat and fed our bellies..  we felt so much better after that! 

The girls have another performance next Friday and then a parade in December.  Then the real performance season begins!!!   Good job girlies.. you danced great as always!!

Bilirubin Update and Three Big Gives!!

Owen started his new medication, Ursodiol, last night.  I spoke with Dr M. (GI) this morning and he explained the reasoning behind this new medication.  the most basic explanation is that it will help excrete the bile from his liver and get the antibiotics out of his system quicker.

 All of his doctors are calling Amoxicillian the culprit to Owen's jaundice and we are putting it down as a drug allergy.  We plan on only giving Owen the Ursodiol for about two weeks, assuming his bilirubin levels continue to drop.  I just got a call from Dr Robin and she said that his labs from today show significant decrease in bilirubin, not perfect, but SO much better!!  We'll retest him in one week and then discontinue the new med if his bili levels are normal.

I am so glad to have this behind us.  I am also glad I listened to my Momma instinct to stop the antibiotics when I did and take his yellowing skin seriously.  I know there was a time that I would have shrugged it off and continued the meds for the prescribed 10 days. 

On a fun note.. we have three new BIG GIVES to update!!  The first package came on Wednesday after we got home from the hospital.  This package came from  disname: mommy2princesses!

She sent us all custom Epcot shirts!!  Carson thought they were giant Christmas ornaments with Mickey ears.. he obviously has never been to Epcot.  Ha.  We all got a  matching shirt with our name embroidered under it.  Owen is blurry and tired.. it was a long day!

Kamryn and my shirts have Minnie bows on the ears.  So cute!

Thank you so much.. we LOVE them!! 

Our next package arrived today from disname: cjbear!

Inside the package were two wrapped packages for each kid.  They loved the cards on the front.  Very cute. 

She made homemade pajamas for both of the kids.  Kamryn's favorite thing to lounge around in are satin pj bottoms!  She was so thrilled!!  Owen loves Spiderman so much and they are perfect for him. Both of my kids put them on and won't take them off. 

Thanks so much cjbear!  The jammies are great!!  You are awesome!

Our last package of the day came from disname: cantwaittoseemickey!

Inside were homemade cards from their own kids that were so sweet!!  Owen and Kamryn both got itunes gift cards and they are already begging to load them up! 

Owen had a long day, but he was totally faking it here!  Thank you to the B. Family.. the kids are thrilled with the gift cards!!  It was very generous of you!!

That wraps it up! We have to get crackin on Kamryn's Halloween costume if we are going to finish it before Monday!  Eek.  Kamryn has a dance performance at a huge Halloween festival tomorrow.  We are hoping to make it to a pumpkin patch tomorrow evening as well.  Where has the time gone?? 

Ultrasound Results

We are home.

We started fasting at 10am and checked into the hospital at 1:45. They didn't have a record of Owen at admissions, but we got things straightened out.

Owen was right on schedule for his 2:30 abdomen ultrasound. The ultrasound techs aren't technically allowed to give you information as they are not doctors, but we had an especially nice one! She explained every bit of what we were seeing! The great news is that his bladder, pancreas, gallbladder, kidneys and liver look fantastic!! Wonderful news actually.

They contacted Dr M. (GI) to consult with him and no further testing is needed.

  We made our way to the cafeteria and had one of the worst meals ever. We were so hungry that we scarfed it down anyway! Owen again proved to us that he can eat like a champ when he is hungry. He ate a whole bag of goldfish, some pretzels, french fries, a pickle and now he's eating popcorn. That was all at the same time that I fed him 4oz of blended fruits, veggies, yogurt and oatmeal.

  I called Dr Robin (peds) from the car and left a message. She just called back after consulting with Dr M. (GI). Owen's bloodwork continues to look great.. Hepatitis was negative, as well as the Mono test. His liver and kidney function numbers continue to look great! It's just the darn Bilirubin that looks high.

The consensus is that we need to draw another set of labs tomorrow to just check in on that bilirubin. I am hoping that the number has significantly dropped.

The common thread here is that he started Amoxicillin on Friday and turned yellow on Saturday. I stopped his Amoxicillin yesterday, so it would be wonderful if the Bilirubin drops. That would be a slam dunk in answering our questions and we would know to stay away from Amoxicillin in the future. I'm sure there is very little research done on the effects of Amoxicillin used in combination with Captopril, Sildenafil, Aldactone, Digoxin, Asprin, Carvedilol, Lasix and Omeprazole.

Carson and I are leaning towards pointing the finger at the Antibiotics.

We were so thrilled to know that his other organs are functioning so beautifully. I always wonder what damage his lowered cardiac output has on his other organs. Not to mention the side effects of his many medications. We appreciate all your kind words and prayers!!

Jaundice

I received a call from Owen's pediatrician this evening.  His liver/kidney function numbers look okay, but his bilirubin levels are at around 7.  Normal numbers are under 1.5.  He definitely has Jaundice, now we just need to find the source.  Dr Robin consulted Owen's Gi doc and they agreed that the next step needs to be an abdomen ultrasound.

Owen is scheduled for an ultrasound at Phoenix Children's tomorrow at 1:45.  If they find a blockage of some sort, he will undergo surgery to remove it. 

There will of course, be plenty of research on my end. I will be consulting Cardiology, both here and at Stanford.  I don't take the idea of surgery lightly, but I know we need to resolve the issue quickly.

Owen is acting fine, no pain.  He is tolerating his food more and more.  I questioned if the issue was a rare complication of the Amoxicillan.  He has never had antibiotics orally.. only the IV antibiotics after surgery/caths.  I researched and confirmed that Augmentin can have side effects including jaundice, but he was on Amoxicillan.  Hmmmm.

I'll will update when I know something tomorrow.  Keep the little guy in your prayers! 

Yellow Boy and more Big Gives!!

Owen is still puking up the majority of the food I give him, but is tolerating fluids like a champ!! On the downside.. he's still Yellow!! His pupils and mouth are yellow as well as his skin. It all started on Saturday and he has seen plenty of sunlight and had plenty of fluids since then. I spoke with Cardiology on Sunday and I pulled back on a few of his meds. I took him to see his pediatrician this morning and she confirmed that he is indeed, yellow. I ran him to the lab to get a blood drawn and we are currently looking at his bilirubin levels, kidney/liver function, ruling out Mono, and testing for Heptitis. All of the above can be reason for yellowing of the skin. Dr L. put a stat order on the labs so we should have results by days end!! She will consult with Dr Stock and we will figure things out. I'd be lying if I said I wasn't a bit freaked out.

On a much lighter note.. yesterday was a big day for gives around here!! The kids got three packages after school!! The first package came disname: miprender. 

She made each kid their own Autograph books for the parks and inside there is a page for each character to sign with their picture on it!!  I made reservations for many character meals, thanks for FREE dining, that we should fill those books up easily!

Owen got the cutest Cars outfit!!  He has an embroidered cars shirt with matching comfy shorts and he loves it so much that he's wearing it today.  :)

Our next package came from diser: purple ears.  Owen loved that the package said "for: Kamryn and Owen".  He could totally read it and was thrilled!!

She made the kids the cutest embroidered patch work skirts to go with their Mickey safari shirts!  They are going to look so great at Animal Kingdom!!

Look at all the detail in this skirt!  All the animals have Mickey hats and there are sillouette Mickeys around the skirt as well.  Owen wouldn't take his shorts off for me to get a close up.. but they are so adorable as well!

The third package was from diser: sgarrity.  We have been following their pre trip report as they are going on their wish trip just weeks after us!  They will be at the Magic Kingdom for Christmas and New Years!

They got the kids pixie dust.. such cute things!!  Owen got Cars pajamas, a McQueen car, a book and a monster bag.  Who knew that a Monster bag could be so fun?  He carried that around all night putting things in it!

Kamryn got a super cute Minnie tee, a paint by number book (which she worked on instead of her homework) and lipgloss!

The lipgloss was immedietly opened and modeled.  This girl loves her make up.

Thank you to all of your amazing packages and love you put into them!!

I will post later today or tomorrow.. as soon as I hear what's up with Owen!!  Thanks for the prayers!

Our Weekend

Owen is starting to feel better!  He is tolerating fluids, but not food yet.  Yesterday I noticed he started looking yellow and that has continued throughout the day today.  I did call his cardiologist (on a Sunday) and we talked about it.  He doesn't seem to think the jaundice is a result of heart failure (or liver failure).  To be cautious, I am backing off a couple of his cardiac meds.  We will run to the pediatrician in the morning just to get him checked out.  I'm hoping he'll wake up his normal, dusky, self. 
Last night was Heart Moms night out and we had a great time.  I am so lucky to know such a great group of ladies that 'get it'.  On my way out I found Mickey Mail in the box.  The kids were excited to open it this morning.. with the exception of Owen feeling crummy from lack of sleep.  This package came from diser: hey-jude.

Inside the package was a super cute Mickey bag for me!!  I love it so much.  It is big enough to put all my "stuff" in while we are at the parks and then I can throw it over my shoulder to jump on/off rides. 

Inside the bag were packages for Kamryn and Owen.  They got matching Mickey safari embroidered shirts to wear to Animal Kingdom.  So cute!!

Thank you so much.. we love everything!!

This evening I was helping Kamryn work on the armor for her Princess Zelda costume. There are about a million steps in turning a sheet of $.99 foam into metal looking armor. I felt like such a nerd as we were surfing the net looking for the right designs. Kamryn is such an amazing artist and can just sketch exactly what she sees in the video game. She was working on the sketch for her headpiece here..

Owen and I enjoyed a little time outside.  I was hoping a little Vitamin D would solve his "yellow" issue.  He looks like such a big boy here!!  I can't wait til the day that he can just run around outside without a leash connected to his face and up his nose.

We had a great weekend!

Strep

Owen has Strep. 

I have to document it as it is his first real illness.  He's never needed an antibiotic outside of the hospital for cardiac related infections. 

It all started yesterday when he broke out in a weird red rash.  Looked like pin needle marks all over his body that were just slightly bumpy.  He was drinking a ton of water and said he felt "puky".  I figured he was refluxing a lot so he was thirsty and that the rash was detergent related.

I gave him a bath last night and he started shivering afterwards.  A slight fever, some tylenol and he was sound asleep by 7pm. 

This bring us to this morning when he woke up asking for ice water.  He then said "Mom.. I feel sick.. I need to go see Dr Robin."  I called at 7:45 to make the appointment and was told that she was booked up and wasn't seeing patients.  As soon as I told the nurse it was for Owen, we had a 9:30 appointment. 

Guess who finally hit the 34lb mark for weight??  I am so excited!!!  He is 34lbs and 40" tall!!

Back to the doc.  The nurse took one look at the rash and thought it looked like Strep. Really?  She did a throat culture which he hated and then she brought him a bouncy ball to make peace. 

Dr Robin came in and gave him the look down.  She said it's probably strep.  His hands, tongue, belly, back.. everything is covered in those red bumps.  I never thought to check his tongue?!

The strep test came back positive and we are sending it off to culture it as well.

Owen told Dr Robin.. "I have a rash all over my belly.. and my back.. and my neck.. I'm just sick."  He let her listen to him and check his ears.. he looks good otherwise. 

She mentioned that he needed medicine and he freaked thinking that meant a shot.  Then Dr Robin took him to the sticker stash.. not the basket that all the other kids pick from.  But the sticker stash of new stickers they get.  She found him a ton of new Captian America stickers and he suddenly felt better.

"Dr Robin.. I'm not sick anymore!  I'm all better.  Thank you!"

THREE Big Gives!!

Today was early release for the kids and we had an afternoon of relaxation planned.  Owen isn't feeling like himself today.  He is pukey.  The rash on his arms and legs is super angry.  Poor guy.  He just feels crummy overall. 
It was a great day to get not one, but three Big Gives in the mail today!! 

The first package came from disname: tricia.. all the way from Canada!!

Inside were the cutest Toy Story coordinating outfits for our day at Disne's Hollywood Studios.  We are so excited for this theme park as it's where all the Pixar characters hang out!!  Kamryn got the cutest Alien dress that fits her perfectly!

Owen got a Buzz embroidered tee with alien shorts made from the same fabric as Kamryn's dress. 

Tricia even sewed an Alien patch on the back of Owen's tee!!  So cute. 

Here is the closeup of Buzz!  I love embroidery and would never have the patience for it.  Thanks so much Tricia.. the kids love these outfits!!

The second package came from disname: ellenbenny.  I have seen her work on previous Big Gives and love what she makes.

The kids' things were wrapped in individual presents.  Gigi was hanging out with us today and thought it was the best day ever to come over!  She helped the kids open their gifts and read all the cards to us. 

Kamryn got the cutest ruffle skirt with matching tees.  The first tee was an embroidered Sassy Tinkerbell.  Kamryn loves it!!

The second shirt was an Ariel Cutie tee. Kamryn LOVES the princess cutie tees!!! I should have brushed Kamryn's hair after school, but it was crazy hat day at school and we were lazy.

Owen's received an adorable three-piece Monster's Inc outfit!  SO cute!  There is an embroidered Randall tee, and he loves Randall!  She also made him some comfy shorts and a bowling shirt.  The shirt has an embroidered Sully and Mike on the back. 

Aren't those adorable??  I love this outfit!!  We love everything you made Ellen.  You are super talented and we appreciate you sharing your talent with us!!  Everything is a perfect fit!

The third package had to wait until after Owen's nap.  He looks a little rough in these last pictures.  The last package of the day came from Colleen.

Inside the package with a Mickey's Clubhouse box full of survival goodies.  She thought of everything!!  Wet wipes, chapstick, bug spray, hand sanitizer, sewing kit, tide stick, bandaids, qtips, kleenex, Sunblock, gum, glowsticks and even nail files.  Thank you so much Colleen!!!  That was so thoughtful and we love it!!  I do hear there are tons of bugs in Florida.. someone please tell me this isn't true?!

Thank you so much ladies for all your love and hard work.  We appreciate every single package so much and feel really spoiled. 

Big Give!!

Thank you all so much for the advice on Owen's foot orthotics. Owen's OT was here today and we tried some different methods and it is definitely going to take some getting used to. Thankfully, I have already seen improvement while he's wearing his new Stride Rite Darth Vader shoes. He still takes his shoes off and wants to be barefoot the majority of the time, but we will get there with baby steps. I read a fantastic article this week.. take the time to read it here.. it's so well written.  

On another note.. Southwest airlines has a great deal on airline tickets right now.  I booked our flights to Stanford for February at $65 each way!  I spoke with his docs at LPCH and Owen is scheduled for pre-op, cardiac catherization and cardiac clinic.  I am not nervous about his next visit and perhaps I should be.  I'm going to enjoy the happy place we are in right now.

Speaking of happy... we got more MICKEY MAIL today!!  This package came from dis: Crissyjb. 

Both kids got the most adorable handmade and embroidered pillowcases and backpacks.  They love them so much!  Kamryn got Tinkerbell...

Her backpack was full of goodies!!  Word search, mickey purse, Puzzle, notepad, bubble yum, manicure set and a french manicure set!

Owen's package was Car themed.  He looked like such a big guy with his backpack on!!

Owen's backpack was full of Bubble Yum, Cars PEZ, Silly bands, coloring books, a growing towel, Spiderman book, and a new Lightening McQueen car!!  He LOVES PEZ and ate a ton of it.. lemon flavored is his favorite. 

Now I need to convince both of my kids to pick up their Pixie Dust and put it away.  They are so excited about everything they received.  Thank you SO much Chris!  I am loving all the embroidery and wish I knew how to sew. 

I continued to be amazed at the generosity of total strangers.  They are making the countdown to Disney very exciting and we appreciate every single gift!  Checking the mail was never so fun around here

This GIVEAWAY is still active.. leave a comment for a chance to win $100 VISA Giftcard and Don't Fret The Sweat gift pack!!