PCMC Again

This time for Cannon. We took him down to the pediatric dermatologist to see if we could get a handle on his acne. He's starting to get some pitting scars and that's not okay in my book...at least not for a 9 month old.

I'm so glad we went. He's got a pretty good case of infantile acne and the dermatologist gave me some very realistic expectations, which I really appreciate. She said we're probably going to be fighting this for years, but that they have good methods of fighting it. So, that's what we're doing -- here's his regiment: Topical BenziClin (benzoyle peroxide & clindomycin) in the morning, topical Tazorac (a retinoid) in the evening, and oral erythromycin (antibiotic) twice a day. It's a lot of pretty heavy duty medication (same strengths as they use for teenagers with severe acne); the diarrhea from the oral antibiotic is already coming on, which is going to be a bear to get on top of. I feel good about the treatment, though, and feel like it's the right direction to be heading.

Anyway, my love/hate relationship with PCMC continues.

We Have a Date

July 1st.

Little Lily Love

Happy Birthday to my little Lily Love. Lily turned 4 yesterday. We celebrated by taking her balloons when we picked her up from preschool, hanging out together, getting stuck on a huge mountain for 2 hours, frantically decorating her earth cake, having cake & ice cream with family, and opening presents.

Lily is a gem. She's the sunshine and the rainy day. If you read this blog with any frequency, you've enjoyed her unique perspective on the world around her. Lily is a thinker, a screamer, a singer, an actress, grateful, kind, emotional, and very, very funny. In short: I love Lily.



Also, Lily is asleep next to me on the front porch right now.

Things I Will Certainly Miss...

Baths in the sink

Little bums up in the air during naps.

Redefining....

I'm at the back half of my week without blogging. I have to admit -- I have LOVED it. Loved it. Loved it. Loved loved loved it. Did I mention I've loved it?

I was becoming addicted to the computer. Google Reader makes it so easy to just paste that little URL right in the bar and voila! you're subscribed to yet another blog! Endless reading and inspiration, right?

Well, here's the thing. I was reading about 15 design/craft/decorating blogs a day in addition to the writer's blogs (Pioneer Woman, Crazyland, etc.) and on top of that -- how about all my friend's blogs, too? Oh, and let's not forget the cooking blogs!

Back to the design blogs, though...I was faithfully reading these blogs every day, thinking I was being so inspired by everything they were sharing. This week I realized, though, that my house is no more beautiful or homey than it was before I started reading all those blogs. Instead of spending all my time reading this week, I got in there and moved my furniture around and it's made such a big difference! I have my own ideas now of what I want to do to decorate.

Other things I accomplished this week:
* Figured out (FINALLY!) how to get my girls to take more responsibility in the mornings.
* Helped my kids happily do chores.
* Cooked with the kids and enjoyed it.
* Read my scriptures more faithfully.
* Helped Stanton with video and picture organization.
* Organized some trouble spots that have bugged me like crazy.
* Enjoyed life as a stay-at-home mom more than I have in a LONG time.
* Cleaned the van -- that took 6!!! hours -- yikes.

How about the writer blogs? Inspiring and funny -- definitely. Were they making me better at my job, though? Nuh-uh. I was ignoring my family to be inspired by others'.

Friend blogs I love. I still do and I have missed to connections there. What I realized, though, is that it's unproductive to spend all my time catching up on my friends' lives when my own is passing me by.

So, I'm redefining my relationship with blogging:

* I've cleaned out my Google Reader -- down from nearly 100 blogs subscribed to (not all of which update frequently) to about 25. Most of those are friends with a small smattering of my very favorites from the other categories.

* I will definitely still be updating mine frequently -- I love love love the history I have recorded here.

* I will only be spending maybe an hour a day on the computer...who knows when?

* The interactions with the kids will continue in the same vein as they have this week:
lots of coloring and playing, singing together, walks, hanging out outside with them, etc.

* I'll still read my friends' blogs regularly, but I won't comment as obsessively (takes a ton of time, I've discovered).

* I'll just be here much, much less...and I'm happy about that.

So...I'll see ya when I see ya?

Do You Ever...

Do you ever just need to unplug? I'm feeling that way lately.

I'm going to unplug for a week, more or less, and just focus on the kids and life here in my little world.

Catch ya on the flip side.

Happy Easter.

J

This tag brought to you by the letter J and By the Lbs.

10 Things I Love Beginning with the Letter J

Juice: All kinds. Orange? Check. Apple? Check. Pineapple? Check. Orange/Apple/Pineapple? Check. Mango? Pickle? Well, maybe not all kinds.

Jeans: It's the feminist in me. I love a cute skirt and can be seen wearing one regularly, but let me just tell ya, I'm glad I live in a day when I can wear jeans whenever I want.

Jokes: I love funny.

Jingle: As in bells. Christmas is my fave.

Jangle: As in coins in my pocket. As in saving money. I LOVE a great deal.

Jell-O Jigglers: Seriously. I love them. More than cake...definitely more than cake. I like a lot of things more than cake. Cake is kind of yuck, in fact. Unless you poke holes in the top and pour Jell-O over it. Then it's yum.

Jeeps: As in Stanton, dates, beautiful scenery, adventure.

Jack Johnson: I heart mellow, easy-to-listen-to surfer dude music.


Jumbles: I love words and word games.

June: June 25th, to be exact.

Various Items...

Again? I know.

Stanton had a great time in Moab and nobody died:

Pics from the fun two days with Cindy & kids:
Lily & Jordyn


Kaleb & Brigham


Morgan & Chloe


7 of the 10 -- missing the three babies...Cannon, Porter, & Kamryn


Some Favorite Pics of Brigham lately:
He made this tractor out of tuna cans. I think it's pretty genius.


He spent 3 hours the other afternoon wearing this helmet. Dancing, running, falling, eating. Cute.

Before going in for his cath, etc. procedures.

He couldn't open the gate and fell back asleep on the stairs.

And some Lilyisms to end the post:

Lily: Mom, you pretend to be me pretending to be you and I'll pretend to be you pretending to be me.

We recently switched brands of toilet paper. Two different kinds were on sale and they were in different bathrooms.
Lily (in my bathroom): Oh, mom! You have the new toilet paper, too. (wiping) Oh, wait, yours is different; it isn't as scratchy.

Lily (to Grandma Judy): Are you going to put that on your blog?

Kids Lately

Lily: Mom, you pretend to be me pretending to be you and I'll pretend to be you pretending to be me.

We recently switched brands of toilet paper. Two different kinds were on sale and they were in different bathrooms.
Lily (in my bathroom): Oh, mom! You have the new toilet paper, too. (wiping) Oh, wait, yours is different; it isn't as scratchy.

Lily (to Grandma Judy): Are you going to put that on your blog?

Brig's Appointment

I'm having a difficult time starting this post. Yesterday was an emotional day.

We got Brigham to PCMC by about 9:00 am and he was off to the cath lab by 10:45 -- he was under general anesthesia so they could do his cath, MRI, and echo. All of the procedures went really well -- there was an increased risk of compromising the conduction paths between the top and bottom chambers of his heart while threading the catheter -- his anatomy is just so wonky that it's a tricky procedure to get that catheter in the right place without knicking the electrical systems. Dr. Day said everything went really well, though, and he didn't seem to have any issues. Also, two years ago when Dr. Day did the same procedure, he couldn't get the cath threaded in the femoral vein (right groin), so he had to go in the femoral artery (left groin). Brig's leg turned purple for a few hours after that and it took some time for the blood to get flowing well again. This time around, he was able to go in the femoral vein and the cath threaded in just fine. That was a relief -- no blood flow issues -- everything went great. While Brig was in recovery we had a consult with Dr. Day and saw the images from the cath. The pressures looked to be exactly where Dr. Everitt was hoping they would be. We looked at the ventricles, the arteries, the PA band, and the coronary arteries. I could not believe how much I had forgotten in the 2 years since his last surgery. I was pretty clueless with too much of it, but walked out feeling like I was at least able to know Brig really was ready for surgery.
We talked about the surgery and Dr. Day said Dr. Everitt had called him and wanted us to come see her in clinic while Brig was in recovery. After a few minutes of chatting, I asked him if Dr. Hawkins (the lead surgeon) and Dr. Kouretas would still be performing the surgery. Dr. Day broke down in tears.
Through those tears, he informed us that Dr. Hawkins announced Wednesday afternoon that he was ill and would no longer be working at the hospital so he could spend his remaining months with his family.
We cried with him.
After checking in on Brigham (who had just gotten a dose of Morphine, so he was pretty mellow), we headed down to the clinic to see Dr. Everitt. The receptionist took us to "the room." I think this room is probably a very good room where all sorts of news is delivered, but for us, this room has been nothing but trouble. It's the room where Dr. Everitt told us about Brigham's heart defect and yesterday it was the room where she told us the details about Dr. Hawkins and how they would affect Brigham. Dr. Hawkins is in advanced stages of pancreatic cancer and is expecting about 3-4 months of life left. We wept again as she shared this with us -- Dr. Hawkins has had such a direct influence on our lives. He performed Brig's first surgery and met with us a couple of times to help us decide if the double switch surgery was the right option for Brigham. We were always impressed with his knowledge and dedication to patient care. He was at the hospital at all hours of the day and night. I can't imagine the sacrifices he and his family have made in order to provide the care that he does. He's also just a really tremendous surgeon. The other surgeons at Primary Children's are excellent and can do many of the surgeries that kids need to have done on a regular basis, but Dr. Hawkins had a skill set that was beyond the more frequent procedures. He had so much experience and could really perform nearly any surgery a child would need relating to the heart.
Anyway, I just can't express our deep sorrow for him and his family and also for the Intermountain West -- he was a treasure.
Dr. Everitt informed us that while the surgeons at PCMC will still be able to care for most of their patients, Brigham's surgery is just not one they are qualified to do. {I have to interject here and just express my gratitude for these professionals who know their limitations. I appreciate so much their willingness to say from the very start that they are not qualified to do a surgery as complex and uncommon as Brigham's. It says a lot to me about their character and their commitment to top notch patient care.} The surgeon she recommended we go to is Pedro del Nido of Children's Hospital Boston. Yes, Boston.
I won't lie -- I was not at all prepared for this kind of news. The estimated recovery for a surgery like Brig's is 2-4 weeks. Last surgery he was on the short end of that and I do hope that that will be the case again. Even still, though, 2 weeks is a long time - not to mention what ever pre-op time we'll need to spend out there. I've been away from my girls for that long and they've done just fine, but this still seems like a more stressful kind of "being away." They'll be concerned for Brigham (although I am pretty confident that on a day to day basis they won't really be thinking much about it) and they'll miss us. I'll miss them. And Cannon -- that's the really difficult one for me -- he's still a baby. A baby is a whole different ball game, right? It will be hard to be away from him.
BUT...........we are so blessed to have two moms who are available and totally willing to shoulder the child care load for us. We won't need to worry about Chloe, Lily, & Cannon. They'll be having the time of their lives at Grandma's house (both grandmas) and hardly know we're gone. That's a big relief in itself. It's nice to have such a huge group of people who love us and support us and will be able to help care for the ones we have to leave at home.

Back to the appointment: Brigham recovered very well from the anesthesia and had no problems with the various procedures.
Dr. Everitt called me today and told me that the measurements from the MRI showed that his LV mass is still a bit smaller than normal, so that may affect just how quickly we get on the surgery schedule. I'll know more in the next week or two.

So, a few thoughts about all of this:
* My prayers and thoughts and tears are with Dr. Hawkins and his family. I just need to say again how grateful I am for this man and his knowledge and care.
* Brigham will receive excellent care from (according to our cardiologist and many other in the department at PCMC) an excellent surgeon in Boston.
* It's definitely not ideal to be going to Boston
-- I've wanted my girls to be more involved with Brigham's experience this time around and they won't be able to do that.
--We will miss the support of our parents being there at the hospital with us during and after Brigham's surgery.
--We don't want to be away from our other little ones for that long.
--It will be a challenge for Stanton to be away from his practice for that long (we're still figuring this one out).
* I'm in a weird way really grateful we saw our cardiologist the day after Dr. Hawkin's announcement -- I think Brigham will be a benefactor of the pediatric cardiology community rallying to help Primary Children's deal with the loss of his expertise.
* Dealing with the insurance company and getting benefits worked out is not going to be a lovely walk in the park.
--I've been impressed so far, though.
* We are truly grateful to be able to face this new turn of events without the financial burden that afflicts so many people with medical problems.
* There are many more positives to this situation than negatives, but I'm still very emotional about it.
* I drove home by myself last night (Stanton went to Moab with some friends). It was the first time in a very long time that I felt lonely. I just wanted to talk to anyone who would listen. I called my parents, Stanton's parents, Stanton, Rachel, Cindy, and Stanton again. Even after talking to all of them, I still spent about 45 minutes of the drive by myself. I listened to my iPod, but just couldn't really distract my thoughts much. I got about 35 minutes from home and realized I had missed my exit. Thankfully there's another route home and it only ended up taking me an extra 15 minutes or so, but I was surprised at just how distracted my mind was.
* I love my family.

Click here for an explanation of Brigham's heart defect.

Off We Go

First of all, we had the best 2 days ever when Cindy and her kids came to visit Monday and Tuesday. I think I could totally dig polygamy if there were no connubial relations involved and I could live with my sisters. We have 10 kids between the two of us and somehow there really wasn't a lot of chaos! We had a total blast. I loved every second of it. I've got to get my pics off the camera, but I'm just feeling a little uh, lazy? I'll update with the pics later.

Meanwhile......

We head to PCMC tomorrow for Brigham's appointment. He's having a cardiac catheter, MRI, and sedated echo. This is a big appointment for him, so we're really praying for good results (good = his leg not turning blue {it's happened to him} & definitive results on the anatomical LV mass).

Today I was talking to Brig about the appointment -- you know, sort of gearing him up and letting him know what to expect. Well, yikes -- he totally remembered his last appointment. That's never happened before. He told me all about laying on the table and watching "Madagacsar 2" (it was actually 1, but he thinks they're all called Madagascar 2), all about the owie they put on his finger (the pulse-oximeter), and the stickers they put on his chest (EKG leads). It was all very innocent and sweet, but wow was I not prepared one bit for it. I'm not sure why it's so significant to me, but I guess it's just that my baby is going to remember this period of his life --- even if it's not forever, he remembers it now and it's leaving an impact. Maybe this is the first moment where I see that he's going to have to shoulder some of this burden and frankly, I really don't want him to.

I'll update more tomorrow.

I'm not sure if the Girl Scouts organization has improved the taste of Samoas (not something I thought humanly possible) or if they just taste sweeter because they were a thoughtful gift from a friend. Either way, I'm not sharing.

Thank you, Janelle.