Friday, July 3, 2009

4th of July

Happy 4th of July!  Nothing says summer like the 4th of July and nothing says 4th of July like S'Mores, Smiles and Sparklers! Luckily the weather was on our side after so much rain and there was an abundance of all three!  What a great day!



In case you are wondering, yup, that's a Cha Cha melting away with a warm and toasty marshmallow all squished between half of a graham cracker!  It was the perfect size to fit between the quartered graham cracker I used.  I think it would have melted even more if it had lasted a little longer!!!  You can probably tell from the pictures that it was worth all of the planning to reserve the phe for this special treat!  YUM!
Hope you are enjoying a great weekend too!

Thursday, July 2, 2009

Just In Case!

Buying the minivan not only meant that we would all be able to go places together, it also meant that I could have a permanent compartment to fill up with low protein, non perishable "just in case" food items. I have to admit, the automatic sliding doors and 55 cup holders throughout were very cool but when I saw this little compartment I immediately knew how I would use it and I was sold!    

One day the kids and I were at a play date where I knew we would be having cupcakes.  I was sure to bring a low protein one for Z along with a few snacks.  (Have you seen these?  They work great!  I think they were made just for people with PKU!!!)  Anyways, this was our first visit to this home.  S and the little girl were in the same preschool class and up to that point my relationship with the mom unfolded at drop off and pick up time which was never really a chance for deep conversations!  She knew Z had PKU but I told her I would make sure she was all set for our visit.  I have learned since this experience that I should have been much clearer about if there would be any other food at all because when we got there she had very kindly prepared lunch too!  Based on the timing I had assumed we would have a cupcake snack then head home for our lunch!  Woops!  It all worked out just fine because I had some things in my "Just In Case" compartment and when I figured out what was going on, I calmly scooted out to the van to dig around and see what I could bring in and call lunch!  Ultimately, it was kind of a random little plate of food but Z never heard me scrambling and I was able to use some apple slices the mom was serving to everyone.  I presented it all to Z in a way that didn't make her or the mom feel bad either!  I kind of felt like a magician or something!  I know this situation was far from a crisis and could have been way more dire and dramatic and I could have easily asked the mom for more things too that would have worked for Z to eat, it wasn't as if we were stranded on a desert island or anything, but having my stash and my travel scale gave me great confidence!

Here's what I am carrying around these days: Gerber cereal bars, a container of pear/blueberry baby food (even though Z is almost 3 I still use these occasionally as if it were applesauce), fruit twists, and juice treats, Apple Juice, tiny boxes of raisins, fruit leathers, dry pasta and some MixQuick.  I almost forgot to mention our travel scale.  It has worked out great for us!  With Z getting bigger by the minute, I want to update and add to my on-the-go collection!  What kinds of things do you carry with you Just In Case?

 

The Lunchbox


I am IN LOVE with this Laptop Lunchbox.  It started with an obsession with this website.  I got addicted to checking it every day to see what Jennifer would come up with to pack for lunch for her son.  I quickly realized that the lunch box itself was as much a part of the experience as the amazing edible contents!  When S turned 3 and needed to bring lunch to preschool she was lucky enough to get one for her birthday.  Someone told me that they loved it because when it is opened you can see everything, that it's inviting in that way.  Thinking about S eating her lunch, something I had done with her just about every single day of her life up to that point, alone (with her new friends and teachers of course) made me a little worried and sad too (I'm so sentimental!!).  Setting her up to have the very best lunch experience on her own was really important to me and this sold me on getting her one.  Since then I have found at least 10 million other reasons to love, love, love this amazing puzzle of "good"plastic.  It's a bento style box that basically is a case that holds 4 (or 5) "containers" that you can fill up with food.  One of the larger rectangular dishes and the littlest one both come with lids.  As soon as Z started eating table food I couldn't wait for her to get one.   PKU or not I would have wanted her to have one but particularly for weighing things and managing the low protein diet, it is AMAZING! 

You have probably heard all the buzz about plastic lately.  This set is made without phthalates, without BPA, and it also has no lead; all things that make it a great, safe choice for holding food!  By using a set like this you can help the environment and don't have to use or spend time working to reuse tons of little plastic bags!  Like I mentioned earlier, when you open it and see your lunch, even something as simple as a sandwich, it actually is enticing and beautifully organized and colorful and it practically begs you to devour it!  This is true!  It doesn't matter who I am packing lunch for, when I use this lunch box,  it is a great visual tool for packing nutritious food.  It helps me think about "eating with your eyes".  I quickly glance at each container and generally pack some kind of main item like a sandwich, or a hunk of banana bread, some fresh veggies, sometimes with dip in the tiny container, fruit, and something "extra" like some chips or a slice of low protein cheese cut up into shapes with a mini cookie cutter.  The littlest container is so cute!  You can put a few mini marshmallows or a teddy graham or two or some other special little treat in there if you aren't using it for dip!  I could go on and on!  When packing for Z,  I just put each container on the scale, put the food in it, record it on her diet records and when all of them are full I shut the lid and off she goes!  Sometimes when I think I am just packing snacks to go (versus packing a traditional lunch) and I am packing for both of my older girls, I end up using easily 3 little plastic lidded containers for each of them that I find myself scrambling to find a way to label for each child.  I know I could color code them by lid or something but I have found that using the lunch boxes takes away all of that confusion and is simpler and in the end I always ask myself what I am doing with all of the separate little dishes and a headache!!!!!  I should just start with the lunch box in the first place!!! Live and learn!  

The Laptop Lunches Website is an amazing resource too full of inspiration for the whole family! There are pictures and lists and ideas of how to fill the lunch box.  With a little creativity you can easily adapt most of the high phe stuff to a low protein version (or just switch that item out) and you are left with a new twist on lunch!

Here is a picture of a quick lunch I packed for the girls the other day.  The only difference is that in Z's box (on the right) her sandwich is made out of low protein bread and is minus the peanut butter.  That and S lost her littlest container and I haven't replaced it yet!  I don't make it a point to make sure their food is as identical as possible or that we all eat the same thing at our meals.  I also choose not to make a big deal out of days like these where they are almost identical but it is neat when it happens and I do think that having some overlap is important.  When it works like it did on this day it makes for a very quick preparation too!  Here we have a sandwich, carrot sticks with a little Ranch dressing "dip", Veggie Stix and some apple chunks!  I can't wait to try these wraps and find some fun ways to fill them up or make some quesadillas and take them on the road!

Tuesday, June 30, 2009

Eat Local!!!

Besides being trendy- it really does make sense to eat local and I'm a big fan!  Our dietician reminds us of this at every visit, her rationale: it keeps you from getting bored!! 
It's strawberry time around here and this weekend we picked some beauties! 

One time while looking for inspiration in the recipe section of Cambrooke's website (which, by the way, I LOVE because of the different ways you can search for recipes: by ingredient OR alphabetical by the name of the recipe), I saw this recipe for low protein Crepes.  Since then,  I've had this dream about trying to make crepes for the whole family.  Making things for the whole family is something I try to do whenever I can, especially weekend breakfasts when we have a more relaxed pace (in theory!!) and time to devote to making a nice big meal!   The crepes got me excited because with this recipe I could make crepes for everyone but for some reason I've been scared.  I mean, the idea of getting them out of the pan in one piece is pretty daunting not to mention CRUCIAL to the whole "roll it up fun" I imagined everyone in our family would love!   I could just picture us sitting around the table each creating our own yummy roll up!  I wondered how the low protein recipe would turn out.  I just kept coming up with excuse after excuse.  These beautiful sun kissed berries were just what I needed for motivation! After picking, we sampled a few (more like A LOT!) and got right to work!

 After all that worry, making them was a breeze AND Z gave them a thumbs up!!!  While the batter was chilling, the girls carefully cut up all of the berries! 


They were so excited to help in any capacity: they dumped ingredients into the bowl, mixed up the batter and of course were on any kind of berry duty, especially taste testing!


To my surprise, the crepes slid right out of the pan as I made one after another after another!!!


Before we sat down to eat, I weighed out some Cool Whip and berries in separate bowls and let Z go for it!  She loved the whole process, especially crafting her own roll and of course the Cool Whip part!

With an amazing amount of concentration she assembled her masterpieces and thoroughly enjoyed each one!  Can you blame her? I was so excited by all of the crepes, they came out of the pan so easily and rolled up so nicely, no cracks or anything!

We can't wait to make crepes again!  It was a dream come true!!  It was so much fun for everyone!  In the meantime I keep thinking about what else we could roll up in these besides other fruit (and perhaps some melted Cha-Cha's?!!)! If you haven't already, give them a try, you'll be glad you did!




Cheers!

Monday, June 22, 2009

One Step At A Time

My girls have unique names.  I will probably never be able to buy them personalized barrettes, pencils, note pads or stickers without specially ordering them.  No big deal.   I knew what I was getting into.  Without a doubt, at some point this will be an issue for at least one of them. That's OK, I'm sure we will be able to handle it and one day when everyone is older "remember when." However, if I ever was in the store and there before me on a twirling rack was a package of stickers with any one of their three names on it, right there, already printed and ready to go..... guess what?  I'd definitely flip out with excitement, and you'd surely hear me wherever you are!!!  How amazing would that be?  Very.  Well, that's how I felt when I heard this Public Service Announcement.  Have you heard it?  I wish I was out and about one day and randomly heard it, that really would have been THE BEST!!!  Oh well, either way, how cool is it to hear that extra special, oh so smart and important sounding, celebrity voice talking about PKU?????  OUR PKU!!  "PKU"- it rolls off Scott Pelley's tongue just like warm butter slipping off a hot knife, like he says it every single day even though it's likely he has never even heard of it before!!!  But who cares!~ This is how it goes I'm afraid: who you know does matter and is important especially when you are trying raise awareness for a rare cause like ours.  Of course we all have to do everything we can but the truth is,  having a few recognizable celebrities on our side won't hurt one bit!  I'm so excited about the NPKUA!!  They are a relatively new umbrella organization connecting lots of local PKU support organizations.  They have hit the ground running and are already working on some incredible projects (like trying to increase food and formula coverage for PKU and planning a conference in 2010 for example).  They sponsored this PSA to reach out directly to people with PKU who may need to get back on track or who may need general support.  SO wonderful!!!  When I first came upon it while checking the NPKUA website one day, I couldn't stop playing it over and over!!!  I imagined Z and I driving in the car when she is a little older, hearing it on the radio.  How cool would it be for her to hear someone talking about PKU, someone other than her immediate family!!  Someone on the radio?  It's like indirect support and validation!!!  This PSA is a way of showing Z that PKU is important, and not just to us, but out in the world too.  And, I can't help but think that there are people out there who don't know a thing about PKU but may hear the announcement, listen a little closer because they recognize that voice, and perhaps connect it to the "heal prick" from the hospital birth experience of their own baby.  Maybe it will plant a seed, or give an existing seed a little sprinkle of water and with the momentum of the NPKUA and other local organizations working so hard to spread the word, the next time they hear those 3 little letters that mean the world to us, they may stop and listen even a little closer this time and who knows, maybe they will tell a friend.  This is how we're going to move this mountain my friends, one step at a time!!!  Yeah!  Thank you NPKUA!!!

Monday, June 15, 2009

The Call


I can almost remember hearing the phone ring.  My husband picked it up while I was on the couch nursing our then less than a week old daughter.  Her older sister danced around the living room.  Usually the phone is my department because I really love to talk, but on this occasion, given the circumstances and the fact that my husband was home during the day, he took it.  I knew it was important.  I knew it was the pediatrician.  We love her.  I thought she was probably calling to check in on Z as we had only been home from the hospital for a few days.  How nice.  My attention was somewhat distracted by our oldest but I could hear my husband saying “Uh huh” over and over and over as he fumbled in his sleep deprived state to find a pen, a feat not easy even on the best of days!  He finally said something different, “So you want us to just take her up to the hospital to have her blood checked again?”  I gulped but immediately scanned my brain thinking what in the world could he be talking about?  Then I remembered the jaundice, it must be the jaundice they were keeping an eye on.  So yes, we’ll get that checked.  Some more “Uh huh’s” later he was now reaching for that folder they give you in the hospital and keep telling you they are putting all of the important papers in, the hard copies of all of the things they verbally go over with you, the one you never even open: unless you get this call.  After what seemed like a year, he hung up and came over to us, the folder in his hand.  He recapped the call, we finally found the newborn screening papers (all I can remember seeing next to the letters PKU was MENTALLY RETARDED) and when I finished nursing we quickly packed everyone up and headed back up to the hospital.  It really was that matter of fact.  Her levels were borderline for “PKU” and after all, it could be a fluke.  My husband very calmly relayed our pediatricians call again and explained how she had talked to this one at a local but bigger hospital and she knew someone in Boston blah blah blah, just in case it wasn’t a fluke, and either way it was all going to be ok because she had a plan.  I believe things happen for a reason.  Looking back, had I answered this call, I would be writing this story much differently!!!  

As the next few long sleepless nights turned into very long days, in my hormonal, very tired state I remember sitting up in my bed, holding and nursing this tiny little, warm, uneven breathing human being that I loved more than is possible to describe in words thinking What if this IS true?  How can this be?  I cried and cried and cried.  Then it was confirmed, it wasn’t a fluke after all and we were headed to Boston when Z was 12 days old.  M had to explain he needed another day off of work after just going back and we scrambled to get care for our oldest.  I remember the 3 hour drive, we hardly spoke as I turned back to check on Z finding her little head so heavy and her neck so weak it kept flopping down as she slept most of the way.  I remember them taking blood from her tiny little arm, her scream.  Wanting to be strong, and choke back the tears I used any energy I had to smile through it so as not to open the flood gate.  I kept thinking, “Is this REALLY happening?”   I remember sitting in the little exam room hearing the specialist (what were WE doing with a specialist?) say “There is nothing you did and there is nothing you could have done any differently.”  What?  My heart sank deeper and deeper.  We had a list of questions.  We covered them all.  We were in shock.  I was numb.  Our appointments were over and we opened those double doors and headed out into the world with our precious daughter who has PKU.  It seemed to be on the mild side, but it didn’t really matter, she had it.  Diet for life.  What would we do?  What did this really mean for her, for us?  I cried more at night as we spent the days smiling at our BEAUTIFUL baby, explaining to our families and friends the situation, convincing them that she was OK and it all was going to be OK.  Of course, we were really trying to convince ourselves.