all grown up…

I don’t cry very often, but this morning I shed a tear. Not when I dropped her off, and not even when I was driving away. I cried when I opened these pictures. When did my baby grow up? I cannot get over how beautiful and amazing she is, and OMG, she is SO grown up! I blinked and there she was….

Today was the first day of 1st grade for Ally – she packed and RE-packed her backpack a million times this weekend, and finally, the day was here!! She was so excited – and I cannot wait to go home and hear every detail!

Last night, as I was grocery shopping, I was thinking about just how LUCKY we are. It’s been a crazy few years, but I haven’t for one second forgotten how lucky I am. So, I walked outside the store, all gooey over 1st grade and my crazy blessings, and I was greeted with this from the Acme parking lot…

I don’t believe in signs, per se, but this.. this is something – validation, I guess.

Mia…

It’s been a month since Mia was born and I’m FINALLY putting these up here! Mia is the third cutest little girl in the entire world!!  She’s so good, and spending time with her gives Cioci Jessi the itch to have another…

ten minutes later I’m over that impulse. 

Here’s Mia!

Grandma (Babci) is a very happy camper these days…

Alyssa LOVES Mia… she just wants to hold her all the time!!! I have a feeling we have a reliable babysitter in the making!

Ian seems to be having fun too!!!

“we” know.

We are slackers. We suck. We need to update. We get it. We (and by “we”, we mean Jessi, and only Jessi. The Jessi who is currently pushing about 70 hour work weeks) are on it…. promise!!!

In the meantime, here’s our favorite picture of Noelle recently – if this doesn’t bring a smile, then you’re having a VERY shitty day, and well, I’m so sorry to hear that! 

by the way, I have to say that I’ becoming awfully proud of my husband.. my photographic skills are clearly rubbing off on him – he took this picture!!!  Loving the angle, the composition and the perspective baby! Good job!

Noelle

mother’s day…

okay, there are a LOT of new pictures and posts.. so just keep scrolling…

First, I want to wish all of the moms I know a wonderful Mother’s day.. I hope your fabulous kids gave you a wonderfully relaxing and special day yesterday!! I am so blessed to have such an amazing family, and two beautiful children. Yesterday was a day I won’t soon forget!

We started our day with a mother’s day breakfast with my mother, Paul, Dina, Dante, the girls and sean and I. It was a great time (a bit chaotic, and a terrible waitress..) and it was a wonderful way to kick off our day!!

A few awesome things from yesterday…

Alyssa & Noelle gave me their annual “present” of letting me take pictures of them without complaint. This is my very favorite thing and while Alyssa gets the concept of “no complaining or acting up”, Noelle hasn’t quite grasped that yet…

She’s adorable with her insanity…

And she’s so cute.. she keeps us in STITCHES all of the time. she also tends to crack herself up more often than not..

Alyssa was her usual, beautiful self – she’s growing into an amazing kid. Smart, funny, and I swear to you that if she grows up to be anything other than an engineer, it will amaze me. She is SO MUCH of her father!!

We had some fun finding things in the woods..

And spinning in the driveway…

And mommy got an artsy shot of my munchkins…

And a few beautiful portraits! Noelle always starts off so silly…

Lastly, and probably the most memorable part of Mother’s Day was that Alyssa learned to ride her bike without training wheels!!! GO ALYSSA!!!

Of course, Noelle had to get into the action and showed us her riding abilities too… (yes, we know we’re bad parents letting alyssa ride without a helmet.. she outgrew it and mommy has to hit Target today to get one! Consider us scolded.)

I would also like to point out that Alyssa has also inherited her father’s lovely habit of “tongue thinking”… lol.. like father like daughter.

A few cute pics…

Whew!! that’s it for this one! There’s another new post before this though..

Easter.. a month late

Easter this year was SO fun!! We set up a scavenger hunt for the girls. they started with one egg that had a clue inside to the next egg, and so on and so on… at the last egg, they were given a clue as to where they could find their baskets. It made the easter morning rat race a bit more fun for us!!

No crazy basket pics, but we did have a few special moments… possibly my favorite picture of alyssa EVER.

On the day before Easter, and Easter Sunday, Sean, his dad and Scott chopped a LOT of wood. We had two trees that had to be removed due to wind storms at our new house, and well, let’s just say that we won’t have to buy any wood for a very very long time.

holy slacker!

yes, we know we’ve been slacking in the blog department.  life is busy!!!

Updates - 

Alyssa & Noelle are healthy, doing well and ready for spring!  Noelle was just recently diagnosed Pancreatic Insufficient – which basically means she has to take enzyme replacements before she eats.  Her pancreas isn’t working properly, and this is an easy way to rectify the problem.  We are so proud of her!  She is 3 years old and can swallow a pill better than some adults – considering she has to take about 15 a day, it’s a good thing.

Outside of health updates, the Barnaks are well! We still havent’ moved into our new house – we’re holding out until June when Alyssa is out of school and we can take things slowly.  Both girls are taking lessons now – so on Saturdays we have Gymnastics for Alyssa and Ballet for Noelle. Then, of course, on Sundays, Sean has Alyssa attending a tennis clinic for an hour.  Lots of lessons!!!  

Here are some photo updates for now – these are from 2009 – but not past Valentine’s day. I’ll update next week with gymnastics pics and ballet pics.
 
About 2 months ago, our darling Noelle catapulted herself off of our sofa in the living room. (adding this disclaimer:  daddy was watching her at the time…   just sayin!)  Turns out she snapped her ulna and we had a wonderful hot pink cast for a month!  fun!  It only took her a few days to realize that this wonderful hard thing on her arm was a useful weapon against her sister, the refrigerator door, the dog, and that it could get her out of anything she didn’t want to do.  ”but mommy, I  only have one arm!!!”  was the common phrase for  a few weeks.  it worked well on her father.

Sean and I took a rainy saturday and went bowling with our wonderful girls… they love it!

Alyssa has quite the technique and even got a few strikes!

Noelle has a lovely technique that is called, “get daddy to help me roll it, and then let’s lay here and watch it while I yell – go, ball – GO!” Works wonders.. although it has a way of encouraging gutter balls…

Lastly – we did some fun studio pics for Valentine’s day this year… Noelle is so easy to photograph because of her age – but Alyssa is still in that awkward, “I’m not sure what to do with my body” phase… so we always end up with weird pictures of her… I’m so ready for this to pass!!!

the cutest hat and a teeny tiny wild child…

I have tons of photographs to put up here, but unfortunately, the really GOOD ones are for our holiday card, so you can’t see them yet!

So – you get today’s pictures.  Alyssa was wearing my favorite hat (from H&M for those of you who care), and I really just love her in it – so we took a few pics….

and clearly, my time is up… she’s done being photogenic for the day~

So – ally grows weary of her mom’s camera, and Noelle decides to jump in on the action.  This, my friends is called  P.C.S.  Photographer’s Child Syndrome.  It consists of a child who loses all sense of their “good side” when in front of their parent’s camera.  I think it’s accurately demonstrated below:

wild.child.

Home Sweet Home

aaaah… we’re home. Alyssa was discharged on Friday with her central line still in her arm. We are administering the IV’s at home (8 a day!! – FUN!) – and I have to say, it’s awesome to be home in our own beds! Ally hadn’t slept in almost 2 weeks, and she finally just crashed when we got home. She’ll have the IV in her arm until Thursday, when they take it out, and she’s back to school on Friday! So far, ally is feeling a LOT better – her cough is almost gone, and her breathing tests show that she’s almost back to normal. So – we’re on the upswing…

We also got to be in a wedding this weekend! all 4 of us were in the bridal party – which made for an interesting day (trying to wrangle 2 children, administer medication and get myself dressed in the process) – but thankfully I had my Saint of a mother in law with me and she single handedly saved my day. Forever grateful!

Alyssa was a beautiful junior bridesmaid, noelle was a cutie pie flower girl, and sean and I were also cleaned up relatively nice! Dina was stunning, stunning! I think the day was amazing, and we are so happy for them – they’re enjoying a week on the beach in Negril… so jealous.

To see a few pics from their photographer, you can check out this link – it’s a few posts down, but you can see ally and noelle!

NKA Studios Blog

alyssa update!

We are still at CHOP – been here nearly a week now. Ally is feeling a LOT better! Her coughing has subsided to about 1x/hour – and while she’s starting to go a little stir crazy in this room, she’s managing this quite nicely.

She had music therapy today and pretended (very well) that she was Hannah Montana with the world’s coolest microphone. THEN, she also had physical therapy and got on the treadmill, used an exercise ball and hula hooped her way into a championship. THEN she had Art therapy and learned that if you color with a white crayon before painting, the paint won’t stick to your design! COOL!

Mom and dad are holding up ok too. It’s been great to have so many visitors. Yesterday we were fortunate enough to have the Astons drive all the way from Lancaster to spend a few hours with us in this tiny room. Alyssa loved playing with Charlotte, and mommy thought it was pretty great to have some mommy to mommy time too.

Bottom line: it’s a possibility (teeny tiny possibility) that we might be able to take alyssa home on Friday with the PICC line. We’ll have to go through training to learn how to administer the iv at home, but at least we’ll be in our own beds. We do, after all, have a wedding to attend this weekend and it would be wonderful if we could all go there together without any major sidetrips to philadelphia for medication.

that’s it… we’re on the mend – hoping to go home sooner than later.

thanks again for the cards, packages, visitors and thousands of prayers. it’s working!!

Cheap date? not so much….

so many of you have emailed asking for updates, I figured it best to post updates here.

alyssa was admitted to CHOP 3 days ago on Wednesday for decreased pulmonary function and a killer sinus infection. Normally, a sinus infection wouldn’t mean a hospital stay, but for kids with CF, it means a minimum of 2 weeks hooked up to IV antibiotics. Basically, with CF, the mucous is so thick that the infection can’t move out the way it would with most people. Thus, it sticks and just festers over and over again – creating a nasty cyclical illness. The only way to really reach it is to try and get to the source, and unfortunately for Alyssa, the source is the sinuses, which are very difficult to treat orally.

So, basically, ally is in the hospital hooked up to an IV and increased breathing treatments for probably 2 weeks. She’s a trooper though – the first 2 days here were VERY rough – she had an IV in her hand, which was very traumatic for her, and then yesterday she was sedated and they placed a central line in her arm for easier access (a central line is essentially a long IV – it goes in through her upper arm and the IV is fed through her veins directly to the artery above her heart). Coming out of sedation was rough, as she was really disoriented and sort of drunk. It took her about 10 hours to feel sort of like herself again, and to be able to walk without wobbling. I think Sean is still recovering from that procedure.

When they took her in for the PICC line (central line), she was defiant and angry, so they gave her some Versed to calm her down, and it only made her madder! She was ticked! Unfortunately, when they took her into the OR to do the procedure, she was still mad, and instead of being semi awake and relaxed for the procedure, alyssa was really hard to sedate. She ended up sitting up in the middle of the procedure and contaminated her doctor – and the resident came out at then end and told us that “she’s not a cheap date! it took a lot to get her under”. Alyssa – raging against the machine.

The picc line is a blessing though, as she is free to move without fear of ripping out her IV and administering meds is a lot easier overall.

So – after 3 days in CHOP, alyssa’s coughing is reducing – it’s definitely still here, but it’s not as bad as it was 3 days ago when she was coughing non stop – every 15-30 seconds. Now, she’s coughing like 1 time per hour. They won’t send her home until she is completely cough free and they’re sure the infection is gone…. most likely 2 weeks.

for now, we’re hanging in ally’s room – getting meds, playing games, watching tv and coloring. Alyssa got to paint her hospital windows, and this weekend they are letting us leave for 3 hours to go on an outing outside the hospital in between her treatments. We’re going to go see the hippos at the aquarium!

Thank you for all of the emails, phone calls and concern. For those of you who asked, ally is in room “5 South 07″ at Childrens Hospital of Philadelphia.

We’ll keep the updates coming! Just to give an idea of how BUSY we are here at the hospital – here is a copy of alyssa’s “schedule” – notice she’s on 9 medications and she’s having something done to her at least every 3-4 hours… thanks to the nice nurse who straightened this out for us! Although sean was pretty disappointed that it wasn’t in excel spreadsheet form… but I think he’s getting used to the simple life.