Friday, August 30, 2013

Noel Mignon Project Life

Hi everyone! Stopping by briefly today to share Noel Mignon's latest Project Life kit, which I LOVE!  It perfectly coordinates with the main kit, Miss Nelson (sorry sold out!).  Check it out!

The kit is only $27.99 and you can purchase it HERE

For those of you that haven't heard of the awesome-ness of Noel Mignon here's a picture of her latest kit, Miss Nelson.  I am SO excited for this one to come in the mail! It's full of brand new CHA product and perfectly coordinated, as always.  Make sure you snag a spot on her waiting list for kit subscriptions, they are well worth it!

Thursday, August 29, 2013

Happy Birthday to Charlie!

Hi everyone!  Well today is the 29th of August which means yesterday was Charlie's THIRD birthday!  Wowee, I can hardly believe it-- he's growing up so so fast and learning new things every day.  He's a great kid and we're so thankful he's progressing so well :)

Considering it is his third birthday I thought maybe I should get started scrapping his 2nd birthday photos (haha) so I used Noel Mignon's Hello Sunshine kit to craft this layout, showcasing an afternoon at the park for his birthday last year.

This is my last layout with the Hello Sunshine kit (sniff sniff) but I'll be back next week to share some cards with you.

This year for Charlie's birthday we kept it simple, Robb and I took the day off from work and when Charlie woke up there were balloons everywhere and a brand new bicycle (or as he called it a 'motorcycle') and helmet.  He loved the helmet and wore it around all morning haha.  The bike also came with a little tool set so he spent much of the morning "fixing" his bike ;)

He got presents all throughout the day and LOVED it.  When we put him down for a "nap" he was upstairs singing "Happy Birthday You To" to himself haha, we were listening over the baby monitor and boy was it funny!  He Skyped with his grandma down in FL and then in the afternoon my parents and his nanny and her husband stopped by for a little party with pizza, cake, and ice cream- and of course more presents!  Man, this kid is spoiled!  He got lots of new clothes, a real tool box, a GIANT plastic tool set picked out by his grandpa, a motorcycle, a pirate ship, foam swords, the Magic School Bus series on DVD, a blow up alligator for the pool, AND a brand new iPad from his grandma down in FL (and that's not even everything)!  We'll be visiting her this November and she thought he could use it on the plane to keep himself occupied, and it'll be really handy for those 3 hour long CF Clinic visits too.  What a lucky little boy :)

In between all the fun Robb was able to set up a little mini photo shoot and got some adorable 3 year portraits.  You'd think this kid never smiles because he's always so serious in pictures but whenever he's smiling he's usually running and being crazy so it's hard to get a picture of it haha!

Can't believe this kid is THREE!

Thursday, August 22, 2013

More Hello Sunshine Layouts

Seriously, this kit has kept on giving and giving!  I've so far completed 9 layouts and 3 cards, plus leftovers, with this kit! I'm retiring it now but wowee, I think this is a new record as I'm pretty pp and embellishment happy.  I'll do a post in 2 weeks showing all the projects possible from just one Noel Mignon kit...I gotta say (again), they are the best!

This one is based off of Julie Bonner's sketch.  She comes up with the best sketches and her layouts and photography are always so top notch!  I decided to shrink down the sketch and put an artsy spin on it, so I used lots of different colored mist splatters and framed the photos in loopy lettering.  I thought the title was fun and silly because my son is frowning like a wicked badass in all the photos (he was pretty unsure of going on that train ride lol)

 Next up is a layout made from pictures taken last summer during a morning excursion to Toys R Us (free playtime for an hour? yes please).  Charlie was obsessed with testing EVERYTHING.

Okay that's it for today! Lots of scrappy projects and news comin up :)


Tuesday, August 20, 2013

Blue Apron Review (Spoiler Alert: love love love)

Hi everyone! I'm here today to share a review of the service Blue Apron, which is freaking awesome!  Basically, it's a service that sends ALL the ingredients for 3 meals to your home.  I mean ALL, Blue Apron only assumes you have olive oil and salt in your kitchen, and everything else you need is provided (pre measured) in the box.  It's pretty amazeballs for someone like me that doesn't have a lot of time to grocery shop or prepare meals.  They send you three meals at $9.99 a person, so $60 for a box that feeds two, and they also send detailed instructions on how to prepare the meals.  Shipping is free, you can skip a week or cancel as often as you want, and you get recipes to feed 2 people or you can opt for more. Also, I'm not compensated by doing this review- I just thought it was super awesome and wanted to share!

I literally have no bad things to say about Blue Apron, I adored the recipes, the box of ingredients, and the entire concept.  Here are a few reasons this service is so awesome

* You can choose a vegetarian option or a meat option (which typically includes one seafood, one beef/pork/lamb dish, and one chicken dish).  I went with the meat option but I will probably try a vegetarian week soon because looking at some of the past vegetarian recipes they really do look delicious and unique.

* Here in CT food prices are pretty high, and I could never buy that amount of food for under $60.  The fact that they only send you *exactly* what you need (sometimes a bit more) saves money.  Instead of buying a whole prepackaged bunch of scallions you can receive and pay for only the two scallions you actually need for your meal.

* So many of the recipes they feature are unique, read: FUN, but they call for specialty ingredients.  I'm not buying a whole bottle of mirin to add just one tablespoon to a peanut sauce, but with this service you can test out unique purchases without buying a whole container or having to scour specialty stores to buy them.

* No more grocery shopping with a toddler that tries to run rampant like a rabid chimpanzee through Stop and Shop.  This is a big perk for me.  Although, I really don't feel like I'm paying extra for the convenience if you know what I mean.  The groceries alone are worth the money, so the recipe planning and shipping are just an awesome bonus.

* The recipes are well balanced, full of fresh and seasonal produce, and the calorie counts are included (typically between 500-700 per meal).

* Robb and I can't eat what Charlie eats, because it's super calorie heavy and also gross, so this makes it easy to serve separate dinners for all of us.  Most meals average about 35 minutes to prepare.

SOOOO basically this is amazing.  It easily fits into my grocery budget and saves me time and still allows me to eat well.  Here's what a Blue Apron box looks like (warning: the rest of this post is SUPER picture heavy)

It's a heavily insulated box (my food was very cold when it arrived, even though I didn't open the box until 6pm Saturday night, when I got home from work....also, it was hot outside since it's August so I can attest that it holds up well).  It included a letter stating what the meals were (I already knew since it was posted on the website and in the newsletter a week beforehand) and also 3 full color and very descriptive recipe cards.  I'm thinking about putting them all in a 3 ring binder since they're very sturdy.

This week's meals were as follows, click on the links to see the recipes, which are available for free!

Shrimp Summer Rolls with Peanut Dipping Sauce
Chicken Yakitori with Long Beans and Brown Rice
French Lentils with Sauteed Vegetables and Lamb Sausage

Underneath the cards the produce was neatly stacked and labeled, pre portioned.

Here is it all lying out on the counter.  I actually discovered celery, a carrot, and a tomato after taking this photo so this isn't even all of it.  I like how everything was separated by meal (for example, I had three bags of cilantro, not just one big bunch).  Another cool thing is the produce itself.  I have no idea how to buy fresh long beans, persian cucumbers, or real baby carrots unless I want to scour farmers markets (which is awesome too but not a guarantee they'll have what you need), so it was cool to have those unusual ingredients.

Included in the produce was cilantro, mint, basil, persian cucumber, lemons, onion, scallions, baby carrots, a regular carrot, red lettuce, celery, tomato, and long beans.

Next was a bag called "Knick Knacks"

This bag was filled with pre measured ingredients for all the recipes, neatly and clearly packaged.

Included was fresh ginger, hoisin sauce, paprika, sugar, fresh bay leaves, thai chiles, peanut butter, panko, feta cheese, a head of garlic, soy sauce, mirin, and sesame oil.

Next up was rice paper wrappers, brown rice, cellophane noodles, skewers, and french lentils.

Lastly there was the protein which included lamb sausage, shrimp, and ground chicken.  The name of the meat supplier was listed so I looked it up and it seems like a pretty well regarded meat supplier in NYC that supplies to lots of big name restaurants, so that was cool.

So obviously I was in foodie heaven at this point and wanted to start cooking right away.  First, I decided to make the summer rolls since shrimp spoils the fastest.  These were filled with lots of fresh herbs (cilantro, mint and basil), cellophane noodles, cucumber, carrot, and sauteed shrimp- to be served on a bed of fresh red lettuce with an asian peanut sauce for dipping.

This recipe was super easy to follow, tasted delicious, and was made in under 30 minutes.  I loved everything about it- especially because I would never think to make these on my own, even though I thoroughly enjoy them in restaurants.

Robb was busy shooting a wedding that night so I placed his half in a tupperware container for when he got home.  I was very impressed with the portion size, I was very worried it would not be enough because of our big appetites but it was PLENTY.  I even added 3 shrimp to each roll (instead of the 2 they recommended) and still got 10 full rolls.

I also worried there wouldn't be enough sauce (aka the best part) but again, it was pointless as there was plenty of sauce for my rolls and for the lettuce afterwards.  Also, I appreciated that they gave me 15 rice paper wrappers instead of the 10 called for in the recipe, just in case I tore one or it broke, etc.

Next up was the Chicken Yakitori with rice and long beans!

Delicious, and Charlie helped to put the skewers into the chicken and mix it all up :)  We really enjoyed this one, a perfect alternative to Chinese take out.  I took for granted Robb would know NOT to eat the teeny chile's in the beans but I was wrong lol....

Last up was our favorite: Lamb Sausage with French Lentils and Sauteed Vegetables

This last meal was totally delightful and delicious.  Actual baby carrots (real ones!), tomato, onion, celery, lentils, smoked paprika, lemon juice, cilantro, feta cheese, and lamb sausage.  It was just SO good.

Overall, I LOVED this service and highly recommend it!  Next week's menu looks so yummy, I can't wait :)

Saturday, August 17, 2013

Charlie's CF Diagnosis

Hi everyone! I know I've been doing a lot of CF posts recently, sorry about that! I've been reading other CF mom blogs and keep thinking "hmmm that's a good idea to write about" haha so today's post is no exception.  When reading these blogs the first thing I do is look for a "diagnosis" story, I find it interesting to hear their stories and thought maybe I'd do one myself.  I'm not sure why I never wrote it before, I kept Charlie's CF a secret on the blog for quite some time and even then only mentioned it briefly.  I guess it was all a bit too raw at first, but now I'm more comfortable discussing it I suppose.

These are the faces of a very worn out family after the birth from hell

I'll start from the beginning, when Charlie was born (10 days late I might add.  Lil stinker).  His birth was an attempted home birth that ended up an emergency C section at our local hospital when 5 hours of pushing (and 17 hours of labor) hadn't yielded my baby.  My heart rate sped up, Charlie's heart rate sped up, and I was starting to get a fever so we transferred to a hospital to err on the side of caution.  To say it was traumatic is putting it mildly, but I won't get too much into it.  Anyways, once Charlie was out his apgar score was low so they did a bunch of stuff that I wasn't there to see and I barely got to see him.  30 minutes later they brought him in to my recovery room and I finally got to hold him, my 9lb 3oz little booger, cute as a button and so aware and alert.

One day old, so tiny and aware

SN: In retrospect the attempted homebirth could have ended in disaster with a child with CF.  A portion of newborns with CF are born with an intestinal blockage called meconium illeus, and they need surgery.  We were very lucky this didn't happen to us.  Homebirths are very safe with a healthy mom and baby, however we didn't KNOW that we wouldn't be having a healthy baby as we didn't get any genetic testing done (figuring A. there was no history of anything in our families and B. even if our child had down's, etc, we wouldn't terminate).  I'm still not sure if not doing the genetic testing was a bad idea or not....I would have been consumed with worry and grief my whole pregnancy if I had, but at the same time it was horrible getting that news after 2 weeks thinking everything was just fine.

It took a day or so for my milk to come in and Charlie kept losing weight, which is totally normal so I didn't worry about it.  By day 2 he continued losing so they had me supplement with formula (which I was NOT happy about).  He also had a mild case of jaundice so they put him under the UV lights. On day 3, which is the day we were to be discharged, he had lost a full pound since birth so they kept him one extra day and we were able to leave on day 4.  We really weren't worried about his weight loss at all, it seemed totally normal and something that happens to everybody.

Charlie and Robb, you can see those skinny little chicken legs!

We went home and over the next two weeks we had a few more pediatrician appointments than normal to keep an eye on the weight gain.  He slowly started gaining weight so we were pleased and not at all worried, although he wasn't up to his birth weight yet.  One day Charlie pooped out a chunk of mucus which I thought was very odd but then figured it was nothing (newborns poop is all sorts of crazy right?).

He had a 2 week pediatrician appointment that went swimmingly, they said he was doing perfectly fine, everything looked good, weight gain wasn't a huge issue, etc.  That same night at 8:00 we got a call from our pediatrician.  I immediately knew something was wrong so I left Robb with Charlie and headed into my scrapbooking room for some privacy.  They told us the results of the PK screen had come back and Charlie had something called Cystic Fibrosis, two copies of the mutated F508 gene.  I didn't know much about Cystic Fibrosis at the first memory was an episode of 7th Heaven that featured a young girl with Cystic Fibrosis (who has since passed away) and I said "what does that mean? Isn't it fluid in the lungs?".  I didn't quite grasp the severity but I knew a genetic illness wasn't good.  The doctor explained it to me and I don't remember very much....I tried to take notes on an index card....I tried to keep it together and ask insightful questions.  They told me the CF Center at Hartford Children's Hospital had already been notified and we could call them the next day to set up an appointment.

After the phone call I went downstairs where Charlie was sleeping in his swing and told Robb.  I'm not going to get into too many details because it's personal but needless to say we were both very upset and heartbroken.  I felt like I had been hit by a train, and I felt stupid for taking for granted that Charlie was a "healthy baby" which I had never fully appreciated and always said rather flippantly.  Our pediatrician had told us not to go online to look up information because there is so much mis information, so we didn't, but while Robb and I were talking I remembered that I had learned about CF briefly from one of my graduate courses during a lecture on gene therapy.  I pulled out my old textbook and opened to the chapter on CF, the first sentence of the chapter was "CF is one of the most devastating illnesses...." and I immediately had to put the book down and stop reading.

We printed up 50 of these birth announcements before Robb realized that he had put the wrong birthday on it!  He was actually born 8/28 lol

SN: This is a photo taken the morning after Charlie's diagnosis.  I was incredibly sad and staring at Charlie with tears in my eyes and Robb snapped this photo.  You can't tell in the picture but I was a wreck at the time, however it's still a beautiful photograph so Robb used it for our birth announcements.  I actually don't like looking at this photo personally, and wasn't thrilled that it was the birth announcement either, because it just reminds me how devastated I was that day.

On Friday we made an appointment at the CF center for that Monday...the weekend was horrible, just waiting and not knowing what we were in store for.  We also had to call our family and give them the news (well Robb did, I couldn't hold it together to get the words out). The CF Center scheduled a 2 hour block of time for us and our family members to discuss what CF was, what it meant, what life would look like in the future, etc.  The meeting was hard but informative.  We were told that Charlie needed enzymes with all his meals (including breastmilk) from that moment forward.  We were told that kids with CF had a life expectancy of mid thirties.  We were told that boys born with CF had a 99% chance of being sterile (this fact hit me very hard for some reason).  We were told he would need breathing treatments at least twice a day for the rest of his life.  We were told that since Robb and I were both carriers any future children would have a 25% chance of having CF.  It was scary, but helpful because we didn't know much about CF prior to the meeting.
and so it begins...

After the meeting we brought Charlie to get a sweat test as confirmation of the CF, which it confirmed.  We started learning how to give him enzymes (they told us to mix it in applesauce but he was to young to spoon feed so I developed a method of dumping them into his mouth and immediately breastfeeding to wash them down.  It worked quite well for the months until he figured out spoon feeding) and how to perform manual chest physiotherapy.  The next few months were a blur of constant doctors appointments with a variety of specialists, learning about CF, and settling into a routine. And that's pretty much where we are now, 3 years later!  Sorry this was kind of a bummer post now that I'm reading it again, but hopefully it'll be helpful to someone out there.  If nothing else, I hope that at least those of you with healthy kids will appreciate that fact just a little bit more after reading this :)

Friday, August 16, 2013

How much does CF cost?

Hi everyone! I thought I’d do a blog post on the cost of having a child with Cystic Fibrosis, for no other reason that I’m constantly shocked when I see the retail costs of Charlie’s medications haha!  To see why he needs all this medication you can look at this blog post from last week.  I’m listing each medication, the approximate amount used in 30 days, and the cost for a 30 day supply.  I never actually realized that Charlie goes through 360-400 Creon pills every month- yikes!

Ok, here we go!

Albuterol Ventolin Inhaler: $47.86
Pulmicort (60 vials): $664.74
Pepcid (120mL): $200
Azithromycin (48mL, 4 bottles): $98.79
AquaADEK vitamins (60mL): $34.95
Vit-D-Sol (75mL): $20
Periactin/Cyproheptadine (180mL): $20.42
Pediasure 1.5 (72 cans): $269.61
Creon 1200 (360-400 pills): $835.20
Tobramycin (56 vials): $8,012
Pulmozyme (30 vials): $2,657.41

Total Prescription Cost Before Insurance: $12,860.57 (Again, this is only for ONE month!)
Total Prescription Cost After Insurance: Roughly $200-$300

Thank god for insurance right?!  

Here's the cost for his nebulizer and Vest machine (that machine is probably the most expensive thing we own aside from the house!)

Nebulizer: $150
Replacement cups: $20
The Vest machine: $20,000

Of course in addition to these expenses are the cost of a nanny (so Charlie isn't in daycare), copays for doctor appointments, and other things of that nature.  This all being said, we are VERY lucky we can get all these medications for Charlie, and very lucky that this is all he needs at the moment! There are plenty of other young CF kids out there that require feeding tubes, IV antibiotics, etc etc...and just imagine how much THOSE things cost!

One other thing I wanted to point out is how much space all of these meds take up in our small house. A few weeks ago my mom was trying to get me to take back Charlie's old Pack and Play and I jokingly said "Awww well I'd looooove to but my whole house is just filled with medical supplies and I couldn't possibly fit it in anywhere".  Of course I just didn't want to have to find a 'place' for a big item in my already over crowded house and was just kidding around but my dad responded "Pshhh you just have the Vest machine and the nebulizer!" and that got me thinking about how wrong he was....

Actually, there is a ridiculous amount of our limited space devoted to CF supplies and medications.  Sometimes we stock up on medications that get sent to us and then Charlie's prescription changes (of course we don't want to dispose of them because he could always need it again), or it is cheaper to get a 3 month supply instead of a 1 month supply and those meds pile up.  However most of the time the sheer amount of 1 month of medications results in lots of boxes of neb vials, multiple bottles of Creon pills, etc and simply takes up a butt load of space.  The picture below is a months supply of only 4 of his medications (so only about a third of what we get each month).

I thought it would be interesting to take a picture of everywhere in the house that is dedicated in one way or another to CF.  So last night I went through the house with my camera and took quick pictures of the build up of CF supplies, and a warning, I did not clean up first.  My house is messy.  Sorry bout that (kinda).

First, we have a drawer dedicated to syringes, and other little doodads to administer medicine.  In the photo below you can see that Charlie decided one day to empty it and line them all up in a row.  I didn't take a picture of the drawer because it was embarrassingly messy.

Next up, the refrigerator. Here we store our TOBI and Pulmozyme.  We have a 3 month supply of Pulmozyme (it saved $20 on the copay) so the box we use everyday is in the door with the TOBI and the other 2 boxes are in a drawer. The Lunchables are for Charlie, I swear I don't eat them (yuck).

All of his nebulizer parts must be cleaned and sanitized after every use so we keep those one a drying rack on the counter.  Once they're dried we store them in a Ziploc bag but honestly, since we do treatments twice per day there are ALWAYS neb parts drying on the counter.

We also have a basket where we store as much of his meds as we can, but the boxes and bottles get bulky so it rarely fits everything.

We also have bottles of meds on the kitchen counter and dining room table at all times because it's convenient to do meds after eating dinner.  The lollipops are an attempt at potty time bribery, if you were wondering.

We also get 3 trays of Pediasure 1.5 every month (this is a new development because it took 6 months for my new insurance to approve it).  This is the one tray we have left (due for a refill soon!), and you can see that they take up a lot of space.  We keep them on the floor in the dining room.....probably not the best place in the world but I don't know where else to squash 72 cans of Pediasure a month.

In our bathroom cabinet we keep an overflow of no longer used medications in case we ever need them again one day (the vialed albuterol is handy to have in case his inhaler runs out)

Charlie's Vest machine, nebulizer, and spacer/inhaler

So there you have it! The cost and space requirements for CF parents haha.  I don't know if any of this is remotely interesting to anyone other than myself but I guess it works as a glimpse into living with a chronically ill kiddo.  I'll be back soon with more posts :)


Friday, August 9, 2013

Noel Mignon Summer Crop Challenges with a Giveaway

Hi friends! I'm here today to share two layouts I made for Noel Mignon's Summer Camp Crop- which has been SO much fun!  Every day there are 2 (sometimes more!) challenges that are all Summer Camp themed, like Mess Hall, Star Gazing, and Nature Hike just to name a few.  My two challenges yesterday were Paper Weaving and Capture the Flag.  If you'd like to play along I definitely reccomend hopping over to the Noel Mignon Facebook page and joining in!  The winning team each gets at $5 gift certificate to NM, one person from the winning team will win a free Noel Mignon kit, and one person who participated in the crop will win a Guest Design spot (including a free kit!).  Wowee!  On top of those prizes there are almost new prizes daily- so if you can't keep up with the 2xday challenge schedule you can just enter a couple challenges to win an awesome prize (Noel just posted a FREE Project Life kit to someone that completes her Trail Mix Challenge- wowzers).  In fact, I'll be hosting a giveaway to anyone that completes both of my challenges, I'll share photos at the bottom of this post :)

Anyways, enough are my two challenges:

Challenge 1: Weaving

We all used to weave at summer camp right? I made so many woven gimp accessories it was ridiculous.  For this challenge I want you to weave paper and use it on a layout, card, or project.  Here's my inspiration piece, made using Noel's kit Jack and Jill.

 I love this photo, which was taken this past March at Mystic Seaport here in CT.  Charlie was playing on a historic whaling ship, but the cool thing is that my grandmother used to play on that ship back on Nantucket when it was actually still in use!  Pretty neat right?

Challenge 2: Capture the Flag

This challenge is all about using flags/banners/or pennants on your layout! and I mean go CRAZY!  Here's my take using the beautiful Hello Sunshine kit:

So if you decide to join in on the challenges make sure to head over to the Facebook page and post your submissions under the appropriately titled Photo Album with your team name :)  Here's whats up for grabs to whoever completes both of my challenges

This is a Dear Lizzy Fifth and Frolic prize pack including a Daybook, stamp set, sticker book, flowers, tags, fabric embellishments, burlap border, chipboard, diecuts, bows, feathers, and a Dream letter banner.  ALSO included are 10 pieces of coordinating cardstock from NM kits, twine, and a few other goodies not pictured :)  There might be a few things missing here or there but trust me when I say there are plenty of supplies to fill up that daybook and a few layouts/cards to boot! 

Happy Crafting!