Friday, April 25, 2008

Newest Nick News

We heard back from Dr. Cowley yesterday. It's still nothing definitive. The cardiologists and surgeons are not opposed, per say, to doing another operation, but Dr. Cowley and the surgeon Dr. Hawkins, want to be doubly sure that that is their best option before going ahead with it. Dr. Cowley is going to fed-ex us a holter monitor (a 24 hour EKG) and have us send it right back for them to read and see how bad the arrhythmia's are right now and we'll continue on from there. It sounds like they will try as many alternate possibilities (such as different drugs) before going back into surgery IF possible, but they WILL go back in if it looks like nothing else will work. We're just going to take this slow because we're not SURE that an operation will actually HELP the arrhythmia issues.
So... we're still kind of waiting for further direction, but at least we know that if we end up doing another surgery, we wont have to go to the Mayo Clinic in MN. That actually relieves me a little. I mean, we know the doctors and surgeons here. We are familiar with the hospital (inside out), and we have family and friends much closer than in MN. So, even though the news isn't really conclusive as to what we will do, at least we know we can stay close.

Saturday, April 19, 2008

Dr. Cowley Called

Dr. Cowley called yesterday and said that he had heard back from the Mayo Clinic in Rochester, MN. His colleague and the surgeon there have looked at Nick's information and images and things and that they think a repeat surgery would be worth doing. They still would not try to remove the entire tumor (because they can't due to it's location) but, they would try to resect it some more.
Dr. Cowley said that he will discuss the situation again with the entire team of cardiologists and the cardio-thoracic surgeons this coming Wednesday and also present the 2nd opinion shared by the Mayo clinic, and then he'll call us back. He said that if we choose to do another surgery and for some reason the surgeon at PCMC does not want to do it or feels like he would not be able to be helpful through surgery, that we will have the option of going to the Mayo clinic to have the surgery done.
It's scary to me. Heart surgery is very serious. We've made it through one open heart surgery and then the cath and the implant of the ICD, and countless other smaller things, but the thought of doing another surgery just makes me all knotted up. It's so hard to see your child after OHS. You do what you have to - especially if you think it may help your child or even save their life, but to have to see a little one with the machines and drainage tubes and stitches and blood and IV's and so on, and NOT be able to hold them or do anything to help is ... indescribable. Not to mention all of the risks that are involved.
On the other hand, if the doctors and surgeons think that this could help him, then I suppose we'll have a lot to consider and pray about.

Here is a photo of our FAVORITE cardiologist and Nick about 1 year ago. Any prayers offered up for this wonderful man that he might be inspired and have the knowledge to do what is in Nick's best interest are GREATLY appreciated! :) Thanks everyone. We love you.

Wednesday, April 16, 2008

Just a few more pics.

The Shire's

The shadow of the carriage ride...

Josh and Me with 2 tired kids. :)

The wedding gig this last weekend...

Josh performed for a wedding for a friend of his this last weekend-- it was a lot of fun. They have this really nice big red barn so they used it to their advantage and had a Barn Dance. The kids had a blast. They also have Shire horses (they look like Clydesdale's), so there were carriage rides too! Here are just a few pics of the night.

My Cowboys

Balancing act

Fixing the belt


The Band

Monday, April 14, 2008


Paul had such a big day today! In order to make room for those permanent teeth trying to come in, we had to have the dentist pull out 4 (that's right, count them FOUR) of Pauls bottom teeth! Paul did AWESOME!!! He was as brave as could be, walked right on back to the chair and told me I could stay in the waiting room. The dentist told me that Paul was happy and pleasant and talked the whole time. (He loves going to the dentist... His dentist is super nice and has the same name as him so he thinks that rocks.) Anyway, he went through it with flying colors. The only problem we've had is the numbing stuff~ his bottom lip is all floppy and he bit it once. Here are some "Before" and "After" pictures.

As you can see, he already has one permanent tooth coming in. And the ones they pulled were LONG! 2 of them measured at about 3/4 of an inch!

It's funny. He was a little worried (after having it all done) that someone would think he looked ugly. I told him it looks awesome with all those teeth gone, and he kind of rolled his eyes and was like, "No mom, not the teeth! What if they think my LIP is ugly?" (Because it was all numb. DUH, mom) LOL. Funny kid.

Saturday, April 5, 2008


Sadly, I just learned that a super nice young man that I worked with at the store took his own life 2 days ago. It turns out he was suffering from depression and had just come home from school (BYU I think) due to the depression. It is so TRAGIC. It just breaks my heart that he felt so desperate & helpless that he saw suicide as his only option. This kid was bright, and kind, and I think had plans to serve a mission soon. Satan just never rests, does he? We must not let him take control! It is very saddening to me that he grabs a hold of so many and causes such feelings of desperation and helplessness. I'm very thankful for the opportunity to listen to our Prophet and those who serve with him this weekend to gather some strength and enlightenment and to help build up in a world where so often we are being torn down and torn apart.

Good things...

I took the boys to the park the other day (while someone came to look at the house)and we decided that the weather was just perfect for kite-flying! I was so impressed with how well all of the boys did! I only had to get Paul's kite UP and he took it from there with no mishaps or down falls! Drew and Nick's kites fell a few times but as soon as I got them back up the boys took complete control! In fact, a few times the little ones even got their OWN kites up with no help! It was a lot of fun. I wish I had taken pictures, but I forgot to bring the camera, and Josh has been out of town this week with work, so I didn't have that extra set of hands to help anyway. Thankfully he will be home late tonight. We miss him!

Yesterday we tried making snow cones. See, Nick's "flavor" for his medicine is just snow cone syrup, and the other day at the store I picked up a few more bottles since it's cheaper than at the pharmacy. Well, they had some inexpensive snow cone machines right there too, and I thought 'Hey, why not have some fun?', and bought one of those too. The kids had some friends over and we decided to give it a shot. The machine didn't work all that well, but enough to get some snow. They thought it was amazing. I remember in my childhood having a snow cone machine that you had to kind of hand-churn to get the ice chips, but this one was a plug-it-in and press-this-down kind of machine. I remember thinking how cool it was when I was little and am pleased to know that the thrill is still there. Watch out Josh, I also remember easy-bake ovens.... and even though we don't have any girls..... I may need to enlighten the boys on the fun of cooking with a light bulb. LOL

Also, Dr. Cowley called yesterday and asked if he could have our permission to send Nick's information and images to a colleague that he has at the Mayo Clinic in Rochester, MN. (there are other Mayo clinics in AZ and FL but the one in MN specializes more in pediatric cardiology than the other ones) He said it occurred to him that this colleague might have some perspective that could be helpful. This other doctor has apparently written a large number of articles or has done studies on cardiac fibroma's, which is the type of tumor that Nick has. So we are praying that some more insight on what to do will come about.

Tuesday, April 1, 2008

So much to do, so little time!

It's so hard to keep up on all the stuff I want to!

We haven't had any serious problems with Nick since we came home. (That we know of.) Andrew has been taking a while to get over a bad cough, but I think I see the end of it coming. Thankfully! As a side note, may I recommend the cough suppressant Delsym to anyone who has children!
Paul also has been sick -- to his stomach a couple of times this week- randomly. In fact I kind of think it's nerves. He internalizes so much and is such a deep thinker. He's really concerned about "What if we move?". And all the stuff with Nick too probably. I think he gives himself reflux. We're always trying to reassure him that everything is OK, but I think that he's just a worrier.

Josh set up a myspace page for himself to let people hear his music. The link is : It's a work in progress, but for only being up about 3 days he has TONS of views and plays. If you have the time you should take a listen. And remember this stuff is 'demo-done'-- when he gets a record deal it will be even better!

I have taken a step back from working at Broulims. Josh and I decided that it would be in our family's best interest if I stayed home more. And work is getting busier for Josh, so that will help. I'm really excited to be back at home more. In my heart of hearts this is where I know I should be and want to be. Of course, different times in life call for different steps, and if we feel that I should go back to work to help Josh when he's back in school, then we'll do what is necessary. For the meantime though, the kids are thrilled and I am too.

We've had a lot of interest in our home, but no offers yet. We haven't had any negative feedback though either, so that's good. The right family just hasn't come around yet. If there is anything that we know (but seem to always be reminded of) is that EVERYTHING is on the Lord's time. When it is right it will happen.

That sums up the most recent happenings here. We are still just SO GLAD to be home. I feel like Dorothy in 'The Wizard of OZ'-- all I want to do is say over and over "There's no place like home, there's no place like home!"

Love y'all!