3 Pretty Girls

What's Going On...

2012-01-01T21:12:00.016-05:00

Busy tends to be our main deal now... It just never seems to end! So, here's the brief update!

Shortly after my last post Sonya came down with pneumonia and fought it hard for 8 weeks! She just couldn't shake it! People with OI have a harder time fighting off respiratory illnesses and since respiratory failure is the leading cause of death followed by trauma for people who have OI, you can imagine how terrifying this experience was for us. Her cough was awful, but worse was listening to how she was struggling to breathe. It was awful! She got through it though, thank God!

Due to having pneumonia her scheduled surgery for her arm rodding was pushed back.... TWICE! She had to be absolutely clear before her surgeon would proceed! It worked out nicely though... We were in the hospital for a whole week, starting off with PAM!

Sonya had 4 of her OI friends with her in treatment this time around! It was fantastic! The time goes by much faster with friends! We also discussed port removal with her doctor and we are thinking within a year or two she will have it removed. We'll have to see how she does with peripheral IV's first.

Watching Spongebob Movie for the millionth time!

Here are some arm pictures pre-rodding. That's not her elbow, it's her bowing.

Surgery went well! She had her left radius and ulna (lower arm) rodded and her right tibia (lower leg) rod revised again. The tibia rod came unpinned from her ankle and retracted back up inside it's outer telescopic part leaving half of her leg unprotected. Sonya's doctor had to go in at her knee and tap it back down and re-pin it. We have an upcoming appointment this week to see how everything is healing.

We have also noted how Sonya's feet, despite her wearing braces, have been getting worse. Her left arch is completely collapsed and she walks on the inside of it... almost on her ankle. Her right foot seems to be retracting back to it's club, which may warrant another surgery. We'll have to see what her doctor thinks when we go in this week.

Who could say "no" to a face like this?!

She sure can turn on the charm!

We had our annual cookie day at my mom's house, baking 7 different kinds of cookies and I don't know how many batches! Let's just say the oven went on at 9am and didn't get turned off until 1am! The kids didn't even know who they were when I gathered them up to go home! Good times!

The annual Christmas photo shoot this year didn't go as I initially planned....

Too much sun in their eyes as they lay on the fake snow.

I did manage to snap some good ones along the brick though! Sonya's silly faces are priceless! The first one was our Christmas card for this year!

We all had a fantastic Christmas and New Year! I'll hopefully get around to posting some more pictures from the holiday soon and I'll be sure to update when Sonya gets her cast removed too!Well, that's all for now! Hope everyone had a wonderful holiday too!!

Catching Up!

2011-10-10T00:08:00.001-04:00

Yes, I've fallen behind in blogging again... big surprise! Things have been so crazy here, I can hardly keep up! The house came off the market for a month so that we could put some new carpet in and re-work our plan to sell and buy. It's going back up on the market soon at a lower price with new carpet and a possible incentive. The girls are back in school and while that means I gain a few hours to myself a week, I swear the work for me doubles and it doesn't equal out!

Sonya has been taking more and more independent steps! She did have a few fractures along the way and she will be having surgery to rod her other arm soon, just as soon as she kicks this pneumonia she's picked up. Yep, like I said busy!

Here is the past few months broken up into 6 posts. Enjoy!

Brigantine Beach 2011

Dutch Wonderland 2011

Back To School, Sink Or Swim

Double Digits!

Expanded By 2 Feet

Pumpkin Fields Forever!

Pumkin Fields Forever!

2011-10-10T00:02:00.000-04:00

It's that time of year again and I love it! Fall is my favorite season and nothing says Fall like pumpkin picking at the patch!

We came home with 3 large pumpkins and 2 baby pumpkins that Sonya picked out, one of which is actually a baby squash... but don't tell Sonya that! To her, they are both baby pumpkins and we had to "rescue them from the patch!"

Happy Fall all!!!

Expanded By 2 Feet

2011-10-10T00:01:00.000-04:00

Someones family was just expanded by two feet!

No, not us silly! My sister Meg, her husband Shay and their first daughter Taylor welcomed their new baby girl Emily Anne home this September!

Taylor is such a proud big sister!

So sweet!

So loved!

Sweet feet!

Taking a peek!

Holding my sisters hand!

Aww!!!

Can we keep her?!

I love my baby sister!

Sonya is completely obsessed with babies lately! She couldn't wait to hold her new cousin!

Emily looks like a little doll in this picture!

Sonya in all her glory holding a real baby!

She has been telling me that "Emily is my baby mommy! When is Aunt Mae Mae going to give her back to me?!"

Congrats to my sister and her hubby! Emily is so adorable!!!

Back To School, Sink Or Swim!

2011-10-09T23:59:00.000-04:00

It's official! I have all 3 of my kids in school! Wow! Finally some "me time"! The girls started back to school the last week of August.

Sonya has a one on one RN as her aide and she is also receiving PT in school! She goes twice a week for 3 hours! She loves school so much! We are still settling some things with the school, her teachers, aide and PT so that Sonya has accessibility to everything and we are working on inclusion methods as well. My belief is that when there's a will, there's a way! Everything is possible, but modifications must be made. She is meeting some new friends, just some though... like 2...there seems to be a higher than expected amount of kids with needs in her class. It is supposed to be no more than 50/50 but it seems like only 10% of her class are average. She is the only one with a physical disability. This makes for a hard time making friends. Some are a bit to physically rough to be around while others don't connect with her cognitively. This isn't what I was expecting when I placed her in this class. Next year I may be looking for a different school. I want her in mainstream, not segregated and at this time the class appears to be where all the differently abled kids are dumped. I feel like the school has mislead me on their representation of their school diversity.

First day pictures! In front of the house!

In the parking lot at school!

So excited!!

Zoe is now in fourth grade! It's quite a change from third grade, there is much more work involved! She has 40 minutes of homework plus 20-30 minutes of reading per night plus a packet that comes home at the beginning of the week and needs to be completed by the end of the week! She's not too keen on her teacher this year and quite frankly, neither am I. It's a case of the fresh out of college and I'm going to line up my students like little soldiers because I have no idea what it's like to even have children, kind of deal. I refer to her discipline tactics as "setting them all up to fail and then dock them recess minutes" tactics. It's just BS. Yep, there might be a transfer of classrooms in the future if this crap keeps up (after of course I voiced my opinion of absolute disagreement). When your smart, good, love to learn daughter starts referring to her classroom as the torture chamber there's something wrong.

On a lighter note, Zoe is reading books of 150+ pages now and she is currently learning division and geometry. She is perfecting her cursive skills too, of which they barely touch on in 4th grade now! Seriously, all they require is that the spelling words and their names be written in script! That's it! And no, they are not going to cover it in 5th grade either! Cursive is now obsolete except to sign your name to legal documents! Wow! On the playground the cliques have started... Ugh... I'm not too worried though as Zoe has a strong sense of self. I'm not looking forward to this pre-pubescent crap though!

Akela is in first grade and is loving it! She has Zoe's first grade teacher whom I was very happy with the first time around, so I have no worries! Akela has taken off with reading and is amazing me with her ability to read words like "interesting", "believe", "actually", and "experience"! She is also working on learning time and money counting right now! Her artwork that has been coming home has been getting more and more detailed, she truly amazes me! I think she has some of her mommy's creative spark!

At the bus stop!

Ha! When I said "Sink or Swim" in my title, were you thinking school? Nope, gotcha! I enrolled the older girls in swim lessons at the Y! I've put this off for far too long and I feel it's way too important to just skip it all together. Eventually, they are going to want to swim in that ocean we take them to each year! In all fairness, I did have Zoe in lessons when she was a tot, but I don't think she remembers much of it.

Zoe is doing great! If she wants to move up to the next level, she has to stop touching her toes to the floor! She can barely help it though, the girl is 4ft 10" and is swimming in just 4ft of water. Her instructor wants her to lose her fear of the deep so that she can take her out there to swim, literally pulling the floor out from underneath her! She has made good effort by cannonballing into the 9ft section! Go Zoe!

Akela is my dry land babe. She is terrified to swim on her own. Bubbles and all she grips onto her instructor who is so sweet and takes her time with my little girl, getting her acquainted and comfortable with the water! She has greatly improved! In just 4 lessons she has taken her own first jump into 9ft of water and swam for a few strokes without holding the instructor (with her bubbles on of course). I'm excited to see what the future weeks of swim hold! I signed them up all the way through December and I plan on enrolling them again and again until they are 100% proficient! Enjoy the pics!

Double Digits!!!

2011-10-09T23:52:00.000-04:00

She's 10! That's right, my Zoe is a whole decade old now! September 14th 2001, on the night when the whole country was holding a candle light vigil for the lost lives of 9/11, I went into labor just before 7pm and Zoe Elizabeth was born just before 11pm.

Ready to party!!!

Birthday girl!

Excited for her special day!

Growing up!

Sonya playing with the balloon strings!

Akela making her sister a card!

Fashion!

Cousin Taylor lends a hand!

Webkinz and glitter perfume!

Someone has joined the Pandora club!

Pretty!!!

Make a wish!

Tricky sparkler candles!

The following morning, the decor came down to be played with!

Balance!

Models...

Divas!

Cheerleaders!

A great time was had by all!

Dutch Wonderland 2011

2011-10-09T23:49:00.000-04:00

This summer we met up with the Greene Family at Dutch Wonderland for some fun! Sonya was so happy to see Simon again! She thinks he lives right around the corner and that we can just see him whenever she wants! Sorry kiddo, I wish!

Down the giant slide!

Ian and Zoe go for a ride up and around!

Simon enjoys an airplane ride!

Love birds!

First attempt of a group photo!

The Frog Prince show is so cute! The kids clapped and giggled, loving every bit!

Feeding the ducks... eww what's that?! Yep, moving on...

Our sweethearts! They truly are! Sonya recently got a card from Simon in the mail and she refused to let me read it to her, saying "It's a secret!" then she took it to bed with her! Finally she gave in the next day and let me read it to her! I love how Simon has his protective arm around her! So sweet!

Driving the dozers!

It rained on more than one occasion during our day at DW. The first storm lasted only 5 minutes or so but it was a drencher! Akela was on the panda bears ride when the skies opened up. She is now terrified of the rain. That's right, never mind the thunder and lightening, just rain alone now scares the daylights out of her! Ugh... Poor kid!

Sonya says I have Doritos, so I don't really care about the rain!

We had a reprieve from the rain for a bit so we scrambled to ride as much as we could while we could! Here are my thrill seekers Zoe and Ian!

Sonya thought this candy cane was falling over... she had to set it straight!

Under the tent we waited for the Thomas the Train show, but it was rained out! Bummer! Sonya is in a silly face stage... every chance she gets...

The obligatory pretzel shot!

Such cuteness!!!

After we said our goodbyes to the Greene Family we pressed our luck a little more and jumped on a few more rides!

Ian is enjoying himself a little too much on the kiddie coaster!

Just kidding, he's just making it that much more memorable for Zoe!

Swings!!!

And that was it... the skies opened up once again and we bolted to the exit scoring some rain tickets on the way out! Wasn't expecting that, especially when we are crazy enough to ride in the rain and tough it out all day long! We had an awesome time and can't wait for our next get together with the Greenes!

Brigantine Beach 2011

2011-10-09T23:46:00.000-04:00

Our beach vacation this year was fantastic! The girls had a blast on the surf and in the sun as always and we did a few new things too!

She cracks me up!

Goofing around on the porch.

Racing!

She still loves to throw rocks!

My little drummer chic!

Just chatting about beer, you know... the important stuff!

For something new, we visited Lucy The Elephant in Margate City! Just a short drive from our beach house stands this gigantic national landmark!

That's Ian and the girls at Lucy's foot!

Sitting on Lucy's toes!

Sonya thought Lucy was sooooo cool!!!

The girls enjoyed the inside tour of Lucy where they learned that she was once a summer house for a doctor and was also previously used to house a tavern! Lucy has also been struck by lightning a few times, the first time in 2006 which had blackened the tips of her tusks!

Here we are atop Lucy's back in her "howdah" - an ornate Indian riding carriage. What a lovely family photo! Ahem...

Akela had lost her top front two teeth just before we left for vacation! She's very proud of the silly funny faces she can perform now!

We managed to get a few cute pictures of all the Swartley cousins together!

My silly girl Akela dancing in the sand!

Love this pic of Sonya!

My Zoe girl!

Another new adventure we found really quite close! Apparently, there has been a pretty nice playground here for years just a couple blocks down the way! We've been missing out! The kids really enjoyed burning some energy off here! There was even one of Sonya's favorite red swings that cradle her safely there!

Who says I can't do the monkey bars?!

She also found some cute dino's to lounge on!

Zoe and Akela explored the castle!

Someone doesn't like sitting on the shark....

He's real!! He's real Moooommy!!!!"

Akela found a little play house!

More new fun! I tried my hand at face paints one night and the kids LOVED it!!! What a blast we all had! Can't wait for next year!

Busy, Busy, Busy!

2011-06-10T22:13:00.006-04:00

It's been a long while since I have had the chance to update the blog and catch up with others! Here is what we have been up to, the short version!

After much hunting and researching we found a fully accessible pre-school that will accommodate Sonya's needs and enrolled her for the 2011-2012 year! She will go 2 half days a week!

Sonya has been doing very well potty training! We have even left the house without bringing any change of clothes while wearing big girl panties! I know, she won't like this picture when she is older.

Sonya has really become quite the dare devil lately! Does she remember how fragile she is?!

We all had a wonderful Easter! Sonya successfully gave all her "chewbies" (pacifiers) to the Easter bunny, leaving them in her basket overnight and he delivered his promised candy in exchange! It was a rough week, but she hasn't asked for them much lately.

Of course, I did catch what she has been substituting her habit with....

Our house is up for sale!!! We have been very busy keeping it all orderly and searching for a new place to call home! Finally we are ready for a larger place! Here is what we have our money on : http://www.zillow.com/homedetails/1315-Harvest-Ln-Quakertown-PA-18951/9088693_zpid/ and this is a picture of our house we will be saying so long to!

Odd, but my first memory of our new home will be of the cat attack! Yes, while visiting the house for the first time, the owners crazed black cat flew out from underneath a living room chair and sunk it's teeth into my leg for no good reason. A numb and bruised aching leg, doctors visit, tetanus shot and week's round of antibiotics later and I am ok! I just keep telling myself it's not an omen!

Taking the whole thing as a sign, I'm borrowing my sisters cat carrier to cage Lucy when we have prospective buyers at our house. Sonya thinks she's a cat now because "I can fit in here!"

Wishbone Day 2011 was on May 6th! We have been soooo busy that all we managed to do was wear yellow for awareness. Hopefully we will have more time next year to go big with it! For everyone interested, here is the website! www.wishboneday.com and at the bottom of this post are two videos of Wishbone Day 2011 celebrated across the globe! They both show the broad spectrum of OI! Sonya's pictures are in both!

The sun has come out and it is getting hot! The kids have been enjoying the weather and can't wait to be out of school! Just a few more days left!

Sidewalk chalk!

Rita's water ice!!!

Zoe loves riding her scooter!

Akela loves pushing her sister in her pink car!

Yes! Sonya has started to take her first independent steps!!! See the video at the end of this post!!! This is definitely what makes me extremely busy right now! Selling and buying a house is a walk in the park compared to following her around relentlessly with arms wide open ready to catch the fall. God, she amazes me!

Sonya's hair has really started to get long! She is really growing up on me! Potty training, going to school in Fall, long hair and walking about!

Zoe had her art in the district art show at the high school! Taking after her mommy, I am so proud!!! This peice was inspired by Pablo Picasso!

In preparation for school, I tried out Sonya's new backpack/basket on her wheelchair! Looks good and will help her become more independent when it comes time for cleanup in the classroom and toting around her needs!

Another day, another fracture, but she won't let it keep her down!

Sonya had her 9th PAM this month! July 13th of this year will mark 2 full years of PAM treatment. She is getting more used to her nurses and she is doing well with keeping herself occupied for the very long hours we spend in the tiny hospital room that we can't leave until finished for the day. Puppy came with us this time!

She absolutely LOVED the B'Loonie's I picked up at the ToysRus for her to enjoy at PAM! Plastic bubbles you can hold! Pretty cool!

Kissing the bubble!

Puppy became the perfect pillow for chillax time!

That's about it... one last fun photo....

Letter stickers, yep, that's exactly what they are for!

Ok, don't forget to check out the video below of Sonya taking her very first independent steps!!!

Here's the Wishbone Day 2011 promo video that Sonya loves very much!

And here's the video of Wishbone Day 2011!

PAM Again

2011-03-24T17:18:00.007-04:00

Sonya had her PAM treatment again earlier this month as well as her first DEXA scan. The DEXA scan (bone density scan) is similar to an xray in technique but provides us with more information. Since this requires the person to be perfectly still Sonya had to be partially sedated in order for them to get a clear image and to get her compliance. So a small gulp of Versed and Sonya was quite loopy! The results are compared to average 3 year old Caucasian females results. They are compared to average girls not OI girls because the goal is to reach an average bone density. To have a low density is typical in OI patients and this means the bones break easy. To have a high density is no good either as the bones become hyper dense (super brittle) and break very easy at this stage also. The medium scale is negative 2 to plus 2. Her results aren't great, still low density at negative 3.8. Her doctors don't suspect she will ever be in the average scale, but we will still continue Pamidronate (PAM) treatment to keep her chronic bone pain at bay as well as decrease her fracture rate and hope for an increase in density. She will now have DEXA scans yearly to track her bone density. If she were ever to reach average scores we would have to be sure to stay in that range and not go above in order to avoid hyper density which would be tragic in comparison to just having moderate to severe OI.

We also had her yearly spine xray and they found no scoliosis!!! She does have what they call compensatory scoliosis which stems from her Coxa Valga in her right femoral head causing a leg length discrepancy. Basically this was caused by a high up fracture in her thigh bone near her hip and the bone healed in this formation. The picture below shows Coxa Valga at the right, normal in the center and Coxa Vara in the left. You can see the angle of the femur hip joint is increased (in this picture it is slight, in Sonya it is more). This causes her leg to be longer (not to mention all the other fractures that have messed with leg length).

Even with her rods, braces and lift in her shoe it is still not 100% corrected and as she is standing her back is crooked because she is trying to compensate for that longer leg as she walks, hence "compensatory scoliosis". They don't want to correct the lift any more because it could pose as more risk at this time. The lift is currently at 1cm (or close to a half inch) correcting this at 50%. If we were to correct at full 100% this would bring the lift up to 2cm (or 3/4 inch) which would require the lift to be applied to the outside sole of her shoe verses simply placing it inside the shoe. Outside lifts pose a tripping hazard and we all know where that would lead... She is not in any discomfort over it so her ortho wants us to just stay as is and watch for the next 6 months for any pain complaints in her spine or hips. The only other thing to do would be surgery. At this point her ortho doesn't want to do hip surgery on her and I agree!

Ok, enough medical junk! On to the pics!

Giggling over bubbles!

I seriously love how a 99 cent activity keeps her busy for hours!

Sonya was lucky to have one of her OI girlfriends there in treatment too! Jenna is like a third big sister to Sonya and Jenna being the youngest in her family really enjoyed playing big sister to Sonya! She really loved the purple polka dot manicure and pedicure Jenna gave her!

The older girls are doing great too! Zoe is currently taking the PSSA's in third grade which she declares is "EASY!" She also loves not having homework for 2 weeks as she gets through these #2 pencil tests with her fellow classmates! Since we have some extra time without homework hogging it all, we tried out a really cool up do that I found at this blog. She loves it! It wasn't as hard as I thought it would be either! Akela didn't want to have hers done after seeing how long her sister had to sit still for it!

Ok, that's all for now. I'm on a major creative kick right now and currently have 5 on going projects which is the reason for my absence here... I know... sorry!!!

The Please Touch Museum!

2011-03-03T14:31:00.024-05:00

Last Saturday I, my girls, my sister Meghan and her daughter Taylor went down to Philadelphia to The Please Touch Museum and met up with our Aunt Kathy, cousin Marlo and her two boys to have some fun! The fantastic fun day at the museum was a Christmas gift from my Aunt. There is so much to see and do at the museum where the kids can touch everything!

Sonya at the water table.

Meghan and Taylor.

What is this huge piece of recycled junk?!

A huge really cool elephant of course! Meg and I spotted a banana hair clip from the 80's in there!

There was a nice disability exhibit going on while we were there! Sonya wants a service dog now!

The older girls got to try out a wheelchair which helped them gain some perspective on their younger sister Sonya's lifestyle. It wasn't easy to stop the chair as Zoe is clearly showing here, flying down the ramp and coming to an abrupt halt as she grabbed the wheels.

Zoe using a reaching aid to grab items off a high up shelf while in her chair.

Akela taking a turn with the reacher and wheelchair.

Navigating doorways isn't always a piece of cake either when the door needs to be opened manually and it swings easily back in your way.

Who doesn't love a carousel?!

Sonya, that's who! She cried in the bench seat with me until the ride started and then all of a sudden she was ok and enjoying the breeze!

FLOOR PIANO!!! I always wanted one of these fun toe tappin' musical instruments! Sonya loved dancing the beat!

Cousins Taylor and Ethan trying it out!

They had an Alice In Wonderland section which the girls were totally excited about since it is one of their favorite movies! Zoe and Akela headed into the card maze!

Taylor's expression is priceless in this one! "Whooo are yooouu?!" Can't blame her, that Mad Hatter was a bit creepy!

Taylor goes down the rabbit hole!

"Do you play croquet?"

In another area they had a horse shoe crab and a starfish to check out! Sonya pet the starfish but didn't want anything to so with the horse shoe crab!

Who knew that he grocery store would be the favorite part of the day?! Hmm... I think they can handle the shopping from now on!

Sonya loved the register! She scanned items and probably would have played there all day!

Notice the TastyKakes? A Philly favorite and I am still in complete denial about their bankruptcy! This sooo can not happen!

Let's play doctor!

"Mommy, there's no Oxycodone in here?! What will we ever do?!"

Trucks, buses, cars and trains!!!!

If our new home has a huge finished basement for the kids to play in, I'm going to build her one of these! She would have stayed here forever!

Taylor : "That's a nice race car you have there..."

Sonya: "Not now Taylor, it's my turn!"

Taylor: "No it's my turn Sonya!"

Sonya: "Since when did you become the boss?!"

Taylor: "My car!"

Both : "Ok, guess we can share!"

Working at the car wash! And gas station apparently... Yes, it was a real car! Engine was taken out, but it was a real car! My girls weren't interested in sitting inside it..

But they did want to ride the bus! Someone forgot to tell Sonya how awful Septa stinks! Had Pop been here he would have set the record straight that NJ Transit is the way to go!

Sonya's facial expression cracks me up! "Whoa! This is a big wheel mommy!"

"I don't want to be run over by the Septa bus!!!"

Forced air fun! Sonya thought these floating balls were very entertaining! It was a very busy day at the museum! We only had one incidence that scared me and that was when a young boy leaned over Sonya using her leg to steady himself to get a ball he was after. I freaked just a little bit saying "You have to get off her now!" and when I looked around for his mom to step in and tell her son the same, she was no where to be found! That's Philly for ya! Parents let their kids run like crazy in places like this, barely watching them at all and no there is no security system where you have matching parent/child ID's and they check them when you leave or anything similar for that matter. I don't know what's scarier, the fact that she could have broke or the fact that there was a bunch of unsupervised kids there!

Aunt Kathy blocked one end while Meghan blocked the other so that Sonya could crawl through the space ship without being trampled by a hundred kids! She loved this!

Run like a hampster Zoe!

You too Akela!

Sonya thought this was pretty cool! Cranking the handle makes the feathers float!

Huge mural art! This whole wall was magnetic and the red bins below it held tons of magnetic splashes of color! The girls thought this was really fun!

We had a fantastic time! Thank you Aunt Kathy for this totally awesome Christmas gift! The girls enjoyed it so much they all slept all the way home! They are now asking when we can go back!

DI Surgery

2011-02-23T17:54:00.000-05:00

For those of you who are new to the blog or have missed my post on Dentinogenesis Imperfecta (DI) here is a link for info : OI DI
And here is a link back to my post on Sonya's first DI surgery which went horrible: I Hate DI

Sonya did very well this time and her new dentist did a wonderful job in fixing Sonya's teeth! He truly cares about my sweetie and has worked on other OI children who have DI which made me comfortable. All of Sonya's remaining teeth were capped with silver. Her teeth that show when she smiles are all faced with beautiful bright white! We had to go out of our comfort zone (our hospital) to have this work done, but I had to do what I had to do to get the best for my Sonya!

Here's the comparison photos!!!

BEFORE: Bottom teeth are yellow, chipping, breaking and wearing down.

BEFORE: Top canines and back molars are yellowed and wearing down.

BEFORE: Note : top front four teeth were extracted and two molar caps were placed in the previous surgery.

BEFORE: Sonya's almost toothless smile.

AFTER: Beautiful bottom caps!!!

AFTER: Beautiful top caps!!!

AFTER: Sonya's pretty smile!!! She hasn't mastered this quite yet with a full mouth of teeth!

She's recovering very well from this 12th surgery! She is eating great and regular foods now! I can't wait to see more improvement in her diet when she is 100% healed! Maybe we will be able to finally give up that Pediasure?!

Thank you everyone for keeping Sonya in your prayers and thoughts!!

Birthday Girls

2011-02-21T16:35:00.014-05:00

This post is well over a month overdue... better late than never I suppose! Since Sonya and Akela have January birthdays just 3 days apart (and 3 years) we have been having combined birthday parties! That way mommy doesn't feel even more frazzled just 2 weeks after Christmas week. This year the girls wanted a simple favorite colors theme! Blue and purple it was!

There aren't as many pictures here as I would love to share, but I don't have permission to post photos that include Akela's friends. Actually, make that one friend who was able to make it. We have been keeping it low key with the amount of friends who are invited. Kid parties get crazy and we also like to have our family there! Unfortunately our house is not big enough to contain that much fun! I think Akela will be having her own kid party next year separate from the family party like we did for Zoe.

Here are my party girls!

Akela is just so sweet, she loved posing for photos!

Zoe got busy making pretty cards!

Akela was so excited over the decorations! She remembered the one's I made for Zoe's birthday and requested the same for Sonya and her!

Present time! A cowgirl hat which she lovingly wore sideways! She loves it!!!

Zhu Zhu Pets socks and Polly Pockets!!!

Aww! Sonya loves her purple pony!!!

A Cinderella doll!!! She's sooo pretty!!!

Akela's favorite angel food cake with strawberry whip and fresh strawberries!!!

I love this picture! Akela is 6 years old and loving life!

Oh man, it's my birthday... better pout!

Nah! I'm very happy to be 3 and I want to savor this yummy double fudge chocolate cake with cherry icing!!!

Another one of my favorites! Taylor and Simon thought Sonya's light up Tinkerbell wings were very cool!

It's the angle of this picture that's making Sonya look huge! Simon and Sonya played so nicely together!

Look Sonya's little again! I love this picture of them all playing!

Taylor thought our cat Lucy was hilarious!

What a great time we all had!

Sesame Street

2011-01-30T12:58:00.003-05:00

Just wanted to share with you all these videos that were posted on my Facebook OI support group today! Sesame Street is filmed in Philadelphia, and Kutztown University isn't to far from home for us either! Sonya is loving "The Wheels Go Round" video! Remember to turn off the music player down at the bottom of the page so you can hear the videos!

We're Still Here!

2011-01-19T17:13:00.027-05:00

Yes, we are still here! I can't even begin to tell you how busy we have been! Hopefully this one post will sum it all up for you and then I can get back on track! Sorry to all for our extremely long absence! I don't think I have ever taken that long of a break from blogging!

Ok, so I left of in mid November... I'm going to extremely summarize here and I'm sure it's still going to be long so...fair warning!

At the end of November Sonya's arm rod had began to migrate out of her arm through her elbow. With just the skin holding it back I could both see and feel the pokey metal rod forcing through her skin and out her bone. Emergency surgery of course! So we are now up to 12 surgeries. The elbow is now doing great!

Our Winter Christmas photo shoot didn't go as well as I had planned... We re-visited the same park that we went to last year and tried to get some new pictures on the pretty white bridges. Unfortunately, it was a crazy busy day at the park given the beautiful mild weather we were having and every other photographer seemed to have the same idea and location. To top it off, my girls were a bit uncooperative so these are the few decent photos I managed to get for our Christmas card. I ended up not choosing a particular one and ordered several of the different shots and sent them out randomly.

We went for our tree 3 weeks before Christmas up at The Crystal Spring Tree Farm in Lehighton, PA where the White House had also found their tree for 2010! The girls thought that was pretty cool! We were pretty bummed that Ian had to work and couldn't come with us, but luckily his brother Ben was there to help us chop it down! As you can see, I don't even know how to hold the saw even if just for a picture!

We visited Santa at the mall! Sonya wasn't afraid this time and there were no tears, just pure excitement and wonder!

The girls cousin Taylor also thought Santa was pretty cool!

Sonya decided to finally take the plunge into the big girl tub! Well, sort of... She's been bathing in our kitchen sink since she was a babe, but now she loves her infant whale tub inside our standard tub! Being outside an infant tub is still too risky since she loses her balance so easily in everyday situations, adding slippery water to the mix which will also make her buoyant without some protection is just not in the cards yet.

This year the OI community has lost so many good friends. It's been so upsetting to hear of so many snowflakes passing away, yet at the same time we are happy they are no longer suffering and know that they are watching us from above. In honor and memory of all of the precious OI snowflakes who have gone home my girls and I (Ok, mostly me) cut out 100 snowflakes to hang above our tree. They looked so beautiful there, I think I may make this an annual tradition!

My Beautiful Snowflake
A snowflake fell from heaven one day,
Into my heart, forever to stay.
Fragile and precious, like china so fine,
Beautiful and delicate, and one of a kind.
How can I hold this snowflake so dear?
What if I break it, is my greatest fear.
But hold it I must, and break it I may.
For I never will regret the day,
When this snowflake fell from heaven above,
And into my heart, stirring such love.
Now, wherever I go, and whatever my fate,
I am forever blessed by my beautiful snowflake.

Shirley Cole -- April 2005

The girls had so much fun decorating the tree as always! I barely had to do any of it!

We had so many Christmas cards this year!!! I finally figured out a way to display them taking a cue from Katie Johnson! I loved how she displayed hers with ribbon and glittered clothespins last year so I decided to do the same but in our family room instead!

More PAM! Sonya had her 7th PAM just before Christmas and did very well! We are still having issues with the port drawing back blood, but they still want to wait and see how she does with the next few infusions before we start talking port surgery again. Sonya's next PAM in March will also include her first DEXA or bone density scan. This will give us a baseline for Sonya's future scores. I'm hoping for as close to normal bone density score as she can get, but I know that since she has only had 7 treatments the chances are slim. We'll see!

Flexible indeed!

Buttoning up her shirt "so the nurses will leave my port alone!"

Leg fracture... yep, just a few days before Christmas Sonya fractured her tibia while she was bouncing on the couch whilst in a crawling position. It just snapped. She did get a nifty Christmas cast out of it though, complete with Santa's, snowmen and trees! A few days after Christmas she fractured her left lower arm bones when she was crawling over to me to get her PJ's on. So much for a fracture free holiday, but it's nothing new.

And then Santa came! He sure did... It looked like ToysRus threw up in our family room for a whole week!

Akela was completely overjoyed at the sight of her new plasma car!

She has been waiting so patiently for this puppy pillow pet!

Do you Zoku?! Akela can't wait to!!!

Yay! Cupcakes!!!

Sonya was so happy to see that Santa remembered her Kitty Cat Piano!

And drums!!! I see a future rock star!

She was very excited over the wheelchair for her dolly! "Now dolly can be like me!" she said and gave snoopy a ride first!

Of course she may aspire to be a doctor too! She certainly has enough experience in orthopedics already!

Zoe is loving Webkins right now!

And clothes! She is starting to turn into a little fashion diva!

She is quite the reading connoisseur and lately has been devouring a book every 1-2 days!

This kid cracks me up! "Look mom, I'm Christmas Lady Gaga!"

"Yes! The ice cream maker ball!!!"

Hoping for lots of snow so they can build a fort! We totally could have used these last year!

Well, we got some! Not as much as last year, but enough to go have some fun out in it!

Sonya couldn't stand the whipping winds that took her breath away literally every shot they got.

Akela was all over the place, enjoying even the shoveled area where daddy would come to park his car when he got home!

Sonya thought burying one of her chewbys (pacifiers) in the snow would be a great idea. Guess who lost it and won't see it until spring?

Zoe just wished there was more!

Well, that's all for now... I just got a new Canon EOS Rebel T2i camera, and as soon as I figure out how to get my photos onto Adobe Photoshop (for some reason they aren't uploading to it) I have Akela and Sonya's birthday party to post as well as an update on Sonya entering school! Yes, I said school! Now you know why I have been extra extra busy! IEP's are nightmares to get through! Thank you all for checking in and please bear with me as I attempt to catch up with everyone else! I'm so far behind!!!

7 Posts!!!

2010-11-18T23:05:00.000-05:00

Ok, it's a combination deal... I've been extremely busy and totally slacking at the same time! Between organizing Sonya's transfer from the Early Intervention program to the preschool program with a very detailed IEP, potty training Sonya, getting her wheelchair fixed (yep, I said fixed... more on that later), keeping her from climbing the kitchen table (video to come soon) and everything else including all the fantastic fun we have been having, holiday preparation, and daily life I don't have an ounce of time to keep my head on straight let alone update the blog! Seriously, it's been insane around here lately! So here is what I got so far and there is much more to come!

This Week In Bento's - 10/18/2010 - 10/22/2010

This Week In Bento's - 10/25/2010 - 10/29/2010

Happy Halloween

This Week In Bento's - 11/1/2010 - 11/5/2010

District 2 LPA Regional

This Week In Bento's - 11/8/2010 - 11/12/2010

POLP At Maryland Science Center

Posts to come will include Sonya's uncasted rodded arm, Sonya's prep for preschool and IEP information, a post on disability, a fun daily life post, video post from Sonya, and what's up with the wheelchair. For now, these 7 posts will have to do! Enjoy and I apologize for my absence!!!

POLP At Maryland Science Center

2010-11-18T23:00:00.000-05:00

I love my POLP family! We are so lucky to live close enough to some of each other to do these get togethers! I only wish that we all lived this close!

Group shot attempt! Someone is bound to have a better one... my camera wasn't coping well with all the sunlight pouring in. It was a gorgeous day!

This past weekend was a blast! We had so much fun at the Maryland Science Center despite Sonya's numerous sensory meltdowns. Here she is upon arrival. She did not want to see the full scale dinosaur skeletons! They were scary!

Wheeling away as fast as her little arms could push!

Simon thought they were super cool!

I can imagine him telling her here "It's ok, I'll protect you!" and I can see her saying "Yep, you're my knight in shining armour!"

"Aww!!! This one is little like me mommy!!! I like him!!!"

My future paleontologist!

Look Zoe! I'm totally touching this dinosaur head!

Sonya met a new girlfriend! Ivy is such a sweetheart!!!

These whisper dishes were cool! Whisper into the center of one and on the other side of the room where someone else sits by the second whisper dish they will hear you! everyone else in the room will remain oblivious to your conversation!

Sonya did not want to leave this giant double sided push pin board!

Nathan goes for the door while Sonya gets the mail!

Fun with tennis balls!

Pneumatic messaging! Like the kind of tubes they have at the drive thru bank!

"Hey that's me!"

Preston, Sonya and Jaxson enjoy mission control!

Aww! I love this picture of Jaxson in the under sea scape!

Simon and Sonya working together!

My Akela the fisherman! She went for the coat immediately of course!

Simon is trying his best to catch some too! Those magnetic fish are really far back though!

Sonya couldn't ever pass up these Thomas trains!

Simon liked playing with this cool pattern construction set!

Oh the water table... how could we ever forget! Sonya would have been content to play here all day and night!

The older girls tried to fix a leak!

Preston and Parker checking out the computer games!

The girls found this Neptune with it's inner swirling colors fascinating!

The planetarium show was fun! Sonya thought that Elmo was talking to her personally and kept on saying "Hi Elmo! What are you doing here? Will you come play with me?"

Simon and Sonya step into the Twilight Zone!

I pick mine and I'll help pick yours!

Dino's below!

Preston is such a sweetheart! He was quite the gentleman helping to push Sonya's wheelchair!

Simon created a beautiful picture to give to his sweetie! What a wonderful boyfriend! Always thinking of his gal!

I love this picture! Our two little love birds!

We then went up to see the huge telescope on the roof! The kids had a chance to look at the sun through it! Very cool!

Jaxson and Simon thought it was super!

Sonya wanted to show Simon her walking with support skills that are improving everyday!

Time to head on out! Jaxson and Sonya look pretty sleepy!

I'm so glad we all had a fantastic time together! Thanks to all who put up with Sonya's foul mood and multiple meltdowns! Hopefully we will get through this stage soon! Thank you to Jenn and Kim for organizing this super fun event!!!

This Week In Bento's 11/8/2010 - 11/12/2010

2010-11-18T22:57:00.000-05:00

Monday : Peach oatmeal and red grapes.

Tuesday : Pepperoni slices with muenster cheese and squares of bread, fresh peaches, edamame and baby corn and strawberry yogurt.

Wednesday : Bologna and cheese sandwich, fresh watermelon chunks, cucumber slices, cherry tomatoes, baby corn and banana yogurt.

Thursday and Friday were buying days!

District 2 LPA Regional!

2010-11-18T22:56:00.000-05:00

We had a fantastic time at our first ever LPA regional event! With the event being held so close to home how could we miss it?! Just 30-40 minutes north of us our district came together for some great fun! I had no idea how large our district was! There was an estimated 200-250 LP's at this gathering! Wow!!!!

Being our first regional and first ever LPA event I didn't really know what to expect. We could only manage to make it for one day, Saturday, although the event went all weekend long. We signed up for the parents meeting, but ended up crashing in the kids room since the girls loved it sooo much in there! They made lots of fun crafts and got to socialize with all the other kids! I wish I had thought to take pictures in the kids room, because these kids were living it up! Hopefully our district site will have some posted soon and I'll provide a link when they do!

We also went to Dr. Bober's presentation which was very informative! I loved his discussion on growth plates. I knew most of this information prior since we deal with Sonya's bones all the time and fracturing along the growth plates is common for her, thus her short stature, but the refresher course is always great! He also discussed the new treatment coming out for Achons, but there wasn't any more knowledge on it than what you all know already. Trust me. Sonya was very excited to see Dr. Bober and couldn't wait to gain his attention to show off her new wheels! Jenn and Jason also got some good news from Dr. Bober! Head over to the Greene's Blog to read about it!

After the conference with Dr. Bober we headed out with the Greene's to The Crayola Factory to have some more fun!!!

Sonya loved the machines that accepted your tokens and popped out markers and crayons!

Simon got to use scissors for the first time and LOVED it!

The girls had a great time creating too!

We got to see how crayons were made and wrapped with their labels! We all even got to try to label a crayon by ourselves! Sonya wanted to go into the factory area with the worker! She wheeled about trying to find an entrance!

How cool is this screen! The kids stand in front of it and make motions while the screen recognizes them and sketches their movements in cool colors! See Sonya's wheelchair?!

Unfortunately, this is where we really realized that Sonya has some extreme issues when it comes to transferring from one activity to another. She has a complete and utter meltdown every time we move from one exhibit/ activity to another even when she knows the next activity will be fun and exciting! Seriously, she would be content to sit and draw one project for hours! It's an incredible attention span for a child of her age to have but when there are a million things to see and do it seems to be sensory overload for her. Basically it has to be on her terms when it comes to moving on to the next activity. This makes it very difficult to go anywhere anymore. At this point she is learning that she can't control much of what happens to her body. The fractures, surgeries and treatments are all out of her control and she is trying to control all the other aspects of her life to feel secure. She even had a complete meltdown over turning off the light before bed time this week. She had already turned it off, her sisters turned it back on since they were still brushing their teeth and well, that was the last straw for Sonya. Cried herself to sleep that night even after she turned it off for the second time. Lot's of OI kids and other children with disabilities struggle with this control factor. It's just another aspect I wanted to share with you all so that you can understand that not only is she a typical 2 almost 3 year old with the attitude to go with it, but she also has this battle for control going on too.

Due to many meltdowns we had ended up painting for about an hour and separating from the Greene's. Sorry Jenn, Jason, Simon and Jude! Then she had another meltdown when we went to put the wet picture thought he special paint dryer and decided it was time to go.

It was a great day regardless of Sonya's upsets though! You'll have to visit the Greene's blog for some more pictures, especially for the kiss goodbye photo! I missed it! These two are so cute together!

This Week In Bento's 11/1/2010 - 11/5/2010

2010-11-18T22:52:00.000-05:00

Monday : New bento ware! Bagelful, half a banana with strawberry banana dip, fresh watermelon chunks, cucumber slices, cherry tomatoes and baby corn with pretzel sticks.

Tuesday: Half a tomato mozzarella and pesto sandwich, fresh apple slices, pistachios and blueberry acai yogurt.

Wednesday: Loved tomato and mozzarella with pesto so much she wanted more, cucumbers and baby carrots, red grapes and strawberry banana yogurt.

Thursday : Beef ravioli, strawberries, raspberries and red grapes.

Friday : Domino's pizza day at school. My kid can't pass up pizza even when it's not the best kind!

Happy Halloween

2010-11-18T22:51:00.000-05:00

The older girls enjoyed pumpkin carving this year again! Akela wanted very much to use the sharp knives and do it herself but had to settle for digging guts out instead!

Zoe loved collecting all the seeds for me this year! We think Zoe might be allergic to pumpkin though as she developed itchy redness on her hands and arms throughout the process!

Sonya still thought that pumpkin carving was inhumane this year and opted out spending much of her time in the living room playing with her dollhouse instead. Click here for last years pics of her utter disgust and terrified expressions over this subject.

Akela is digging away!

My little trick or treater's! Akela the butterfly, Sonya the flower and Zoe the bumblebee!

Sonya decided she was Fifi from the Fifi and the Flower Tots show. This costume was Akela's first Halloween costume when she was just 2 months shy of her 1st birthday!

Zoe loved this bumblebee costume when she saw it in the store! She was hoping to be a lady bug but all the lady bug costumes were sexy lady bugs! What the heck?!

Akela my butterfly! This was Zoe's costume the year that Akela was the flower! So all in all I only had to buy one costume this year! Score!

Cousin Taylor the pink poodle joined us for trick or treating at my moms! Taylor turned the big one the day after Halloween!

Our pumpkins!

Riding in style! Nice and cozy in the red wagon!

Aww!!! Cutest puppy award right here!!!

Busy bee and butterfly hover under the cherry tree!

Happy Halloween everyone!!!

This Week In Bento's 10/25/2010 - 10/29/2010

2010-11-18T22:50:00.000-05:00

Monday : Cream cheese and jelly sandwich, fresh strawberries, peach yogurt and bugles.

Tuesday: Lebanon bologna cream cheese rolls, muenster cheese, fresh cherry tomatoes, candy nut apple slices and raspberry yogurt.

Wednesday: Home made Italian hoagie (which was a pain in the butt to fit into the container!), fresh plum and red grapes, baby carrots and muenster cheese and mixed berry yogurt.

Thursday and Friday were buy school lunch days as Zoe liked what she saw on the menu!

This Week In Bento's 10/18/2010 - 10/22/2010

2010-11-18T22:46:00.000-05:00

I put this post off so that my 200th post could be about Sonya's wheelchair which was a huge milestone for her! So what better post than our 200th, 100 posts after Our Story post! So sorry for the delay, but I'm sure you all completely understand! :) Here are our bento's from 10/18 - 10/22!

Monday: Whole wheat pita pocket with lettuce, grilled chicken strips, shredded cheddar and salad toppers by McCormick including soy nuts! Cucumber slices, baby carrots, red bell pepper strips with dill dip, fresh sliced kiwi and peach yogurt.

Tuesday: Mini cinnamon raisin bagel with strawberry cream cheese, cucumber slices, baby carrots and red bell pepper strips with Thousand Island dressing for dip, fresh strawberries and peach yogurt.

Wednesday: Italian Hoagie made by mom! Skinned peaches (my kids dislike the skin on most fruits), pretzel sticks and strawberry yogurt.

Thursday: Brown Bagged Horror Fail! I can explain! Field trip day! There you have it! PB&J sandwich with red grapes and a Capri Sun. Surprisingly, I am reminded by how no much really fits into a brown bag! Zoe had a wonderful day at Crystal Cave though! :)

Friday: Bologna and cheese roll ups, red grapes and kiwi slices, pretzel sticks, mixed berry yogurt and a marshmallow Peep Pumpkin!

200th POST ~ WHEELCHAIR!!!

2010-10-28T18:52:00.007-04:00

Oh my gosh it's actually here! I can't believe it! After 9 long months of battling the insurance company and the DME company we finally have Sonya's custom wheelchair and it fits her great! To give you an idea of size, here are some of the specs : 16" tires with no rims, 4" light up front caster wheels (that's right they light up as she pushes!), 8" floor to foot rest, 6" foot rest to seat, 8"x8" seat, 8"x8" seat back and all of it just 13 pounds! We are so excited! Here are some pictures...

Sonya in her new Tilite YR next to her old Action Comet. Wow, that Comet looks like a giant chair in comparison!

At home taking a stroll!

I can smell mommy's flowers now!

"I wanna go over there!"

She even rolled it into the back yard through our 4 week long grass and over to her play house! Wet weather, no mowing...

Houston we have a problem! "Mommy, my wheelchair won't fit in my playhouse!" She's too funny! She loves her chair so much that she wants to take it everywhere, and I mean everywhere!

Some videos!

That's all for now! She is loving her custom wheels! How cool is it that this huge milestone is my 200th post too! Woo hoo!!!!

Cherry Crest Adventure With The Greenes!

2010-10-20T14:22:00.018-04:00

This past Saturday we met up with The Greene Family at Cherry Crest Adventure Farm out in Lancaster County PA! Wow! What a great time we all had! This farm had it all and the kids had a blast! Here are some fun pictures from our wonderful day together!

So happy to see each other again!

Sweethearts!

The "what to do next?" wheel!

Each kid had their turn to spin the wheel!

Time to see the animals!

The goats had an interesting area! Here, Zoe sends up some food!

Now Akela sends some up!

And the goat enjoys each small blue cup of food he gets!

Zoe gets some more food out to feed the other animals!

Sonya loved feeding the sheep!

"His tongue tickled my hand mommy!"

Simon had fun pumping the water into the sheep's trough!

Uh oh! I wonder what happened to the third pig?!

Sonya thought the pigs were "cute!" and she wanted to pet this sheep, but the sheep was busy eating!

All of the kids LOVED the bunnies! I wish I had some more pictures of them petting the bunnies but I was juggling Sonya in my arms and they were all pressed right up against the cage (bunnies and kids).

So, Sonya doesn't like chickens! Can't you tell?!

Simon thought they were really cool though and I heard him "buck buck" with them a few times! So cute!!!

Here the girls, Jason and Simon explore the solar energy hut to see how some of the farm is powered by the sun in the effort to go green!

Oh my! I can't believe how this "hold a baby chick free for all" didn't get way out of control! There was no line or really any kind of order when it came to this exciting activity. Just about 40 kids and parents eager to hold baby chicks, no rules or organization. Yep, total free for all! It was really cool though!

Zoe was such a big helper! She went into the crazy mayhem to rescue a chick and bring him over for the rest of us to see!

My sister Meg will appreciate it when I say "TWEEEET!" Sorry everyone, inside joke!

I swear, Sonya looked at this chick like it was the best thing that she has ever seen in her life! Her expression says it all! This is pretty funny considering the grown chickens upset her!

Simon thought the baby chicks were really cool too!!!

We all enjoyed a wagon ride around the farm and learned a few interesting facts about farming from our driver! Sonya loved seeing all the huge cows as we rode by!

Our wagon ride dropped us off at the kiddie zone and our little cowgirls and cowboys saddled on up for some fun!

We enjoyed a very large tube slide down a hill and then a performance from the chickens!

We all went through some of the 20 acre corn maze and enjoyed a few little inside activities but after hearing a few others exit times (2 hours plus) we decided that a quick exit was in order before we ended up completely lost! I taught the kids that sometimes "rule breaking is a good thing" as we crossed through a roped off "Do Not Exit" area. If you know Zoe well, you know that this did not bode well with her and believe me when I tell you that I did not hear the end of it as we drove home later. It did turn out to be the perfect place to exit though as we ended up right at the pumpkin patch where we had planned to go next!

That was one HUGE pumpkin!

Simon found a good one!

Of course Sonya took this opportunity to nap!

Simon thought that Sonya would like to see some pretty pumpkins anyways and I of course encouraged him and took pictures! So cute!

Family picture!

The Strasburg Rail Road, a living example of an early 20th century railroad runs straight through the farm and the kids thought seeing this was super cool! We were going to grab some tickets to ride but then found out it was a 2 hour round trip and it was already getting late! We decided we would have to do it another time! FYI, anyone who has a kid who loves Thomas, they have a Thomas event! They have it every once in a while so if you can't make it this time around watch for the next!

We all had such a wonderful day together and we can't wait for the next get together!!!

Our cuties couldn't say goodbye with out a sweet kiss first!

We managed to make it through the day without any major incidents. Sonya did take a little tumble out of her stroller when she unbuckled herself and decided that she wanted to get out. At first I really thought that she broke, but she was just a bit terrified and calmed down relatively quick. The ironic thing is, our stroller has just been recalled for entrapping infants and strangling them when they try to squeeze out under the tray. Hmmm... well good thing her wheelchair is coming in this week! Yep, you read right! Post coming soon!!! For more pictures from our day please visit The Greene's Blog! Jenn has some really awesome pictures!!!

New Look

2010-10-19T09:47:00.005-04:00

I had to post these! I was so proud that I finally finished these scrapbook pages AND framed them! I always liked the look and idea of this for above my scrapbooking station and I have been meaning to do it for years! The pictures are from this years beach vacation but what's really cool are the frames! They are cabinet front style so I can easily swap out these pages and put new ones in without ever taking the frame down! This makes it super easy to stay up to date!

Sonya's page: "Rotting wood in the front yard on a Thursday evening just before dinner, the perfect distraction, capturing your attention and gifting me this beautiful portrait of you!

Zoe's page: "You gladly posed for me and I snapped away trying to capture these fleeting moments. You are on the verge of 9, your gorgeous eyes still remind me of the bright sky meeting the ocean, full of sweet innocence.

Akela's page: "You're smiling at me! You're actually looking at me and smiling! Sweet daydreamer of mine, I have few photos like this right now. So thank you for taking off your space cadet helmet and landing in front of my camera!"

All nice, finished and on the wall!

This Week In Bento's - 10/11/2010-10/15/2010

2010-10-19T09:47:00.000-04:00

This past week my Zoe missed her bentos! Since we had our hands full with Sonya in the hospital , Zoe was roughing it with school cafeteria lunch! Blech! She was so happy to resume her bento meals this week!

On Monday the 11th the girls had off from school so no bentos for that day! Here is what we made for the rest of the week!

Tuesday: Home made pepperoni pizza, baby carrots, fresh strawberries and Asian pears with carmel dip!

Wednesday: Whole wheat pita pocket stuffed with lettuce, shredded cheddar, grilled chicken strips and some seasoning with soy nuts. Cherry tomatoes, peach yogurt, fresh red grapes and some jelly beans for a special treat!

Thursday: Double decker quarter bologna and cheese sandwich, black cherry jello heart, fresh cucumber slices, red bell pepper strips, baby carrots with dill dip, fresh strawberries and pretzel sticks which Zoe also liked to dip in the dill dip!

Friday: Grilled chicken wrap, strawberry yogurt, 1/2 a banana, fresh red grapes, baby carrots, red bell pepper strips and cucumber slices with red pepper hummus.

We'll see how Zoe likes the hummus. I told her it was just a different type of dip to try. If she heard "hummus" she definitely would not even try it... she's just funny like that! Ok, found out before posting this... she did NOT like the hummus!

Again, any fresh ideas are welcome! I am hoping to get Zoe a hot food thermos now that the weather is getting cooler so any awesome ideas of what to put in there would be great too!

Double Surgery and a Leg Fracture

2010-10-12T11:45:00.011-04:00

This past Thursday Sonya had her arm rodding surgery and leg rod revision (surgeries #10 and #11) and it went very well! At first her doctor was worried that it might not even be possible with how her two lower arm bones intertwined with each other and the many nerves due to numerous fractures and the way that they had healed all jagged and bowed, but once he got in there he saw that while a bit complicated it could still be done! Without this surgery Sonya's arm would continue on it's path into an unusable part of her body impairing her mobility.

She now has a K-wire in both her lower right arm bones, radius and ulna. Sonya also had her right lower leg, tibia, rod revised. It wasn't telescoping out with her growth, had not grasped onto the bone because of the bones softness in that particular area and had left a portion of bone unprotected. Her doctor made a small incision and manually advanced the rod and fixed the screw. We hope that this remedies the issue and that the rod will grasp onto the bone and function properly. Surgery was just about 3 hours minus the admissions, waiting time and prep work. Her doctor was very pleased overall with how both surgeries went! Sonya was a real trooper and with the right medications she was pretty comfortable in the recovery room! I have to say that I think extra sleeping time while coming out of anesthesia and not being on Morphine (she has adverse reactions to this narcotic) makes a big difference in her mood! This time she slept a bit more and was pleasant upon waking!

We had a wonderful roommate and it seemed that both Sonya and Kayden had their bad times together which was great because that meant that they were on the same sleep schedule and everyone got their well needed rest! We were out of the hospital by Friday afternoon! Sonya always does much better once she is home and comfortable in her own surroundings!

Here are some of her arm xrays. In the first one you can see her lower arm bones curve in towards her body. She could no longer straighten her arm... this is fully extended. her upper arm bone, humerous, is beautifully straight as it has not fractured or started to bow so her doctor left it be.

This is a view of just her lower right arm bones, radius and ulna, intertwined.

And now, nice and straight with rods! I can't wait to see her uncasted!

Here are some photos from the hospital. Her arm was casted in white first and then she got her tye dye color afterwards. Her right leg is wrapped in fluffy cotton roll to protect it for the hospital stay. Her left leg also has a small cotton wrap on it, this was for the blood pressure cuff. I don't really see how some cotton roll will prevent a leg fracture with use of a blood pressure cuff and we usually do not allow blood pressures for the risk of fracturing, but in surgery it can be critical. We would have an arterial line placed for her surgeries but since Sonya's veins are crappy and blow out every time they try to access her we have no choice. Better to have a broken bone than a dead child.

Eating a Pringles chip, the first thing she requested to eat, while lounging with her panda pillow pet, teddy bear and favorite blanket... oh and of course her two chewbies (pacifiers). You can also see her port line running down in the next picture.

Tye dye casts for Sonya and her teddy!

Home sweet home! Remember that blood pressure cuff fracture risk I just told you about? Well her left tibia broke (long bone fracture #34) just 3 days after her surgery and I wonder if the BP cuff maybe caused a micro fracture that we were unaware of that later turned into a full fracture when Sonya decided that it was a good and fun idea to stand up and do belly flops into her bean bag chair on the floor. Hmmm...

Yes, I tried to reason with her, telling her that it's not a good idea to do belly flops in the family room. It's too dangerous! There is just no reasoning with a almost 3 year old OI dare devil who is very determined! At least she was having fun! She later told her casting nurse "I got a little crazy and broke-a-my bones!" She's a trip! Here she is hamming it up for the camera and showing off her battle wounds!

Thank you all for your prayers, love and hugs! Sonya is doing better each day!

Fall Photo Shoot

2010-10-05T18:29:00.015-04:00

Ok, first let me start by saying it is extremely difficult to photograph 4 children! I don't even know if I got a single perfect shot of all of them, but it was still fun trying! This past Sunday my girls and I met up with my sister and her daughter Taylor and my mom at The Moravian Tile Works Fonthill building in Doylestown, PA for a photo shoot. Our goal was to get a great picture of all 4 kids together in their gorgeous matching outfits for Fall! We arrived a bit before my sister and mom so I took a few of just my girls too since it's a rare occasion that they are all dressed up, Sonya has no cast and we are in a beautiful area with a fully charged camera! Ok, mostly it's just rare that Sonya has no cast on...

I'll let the photo's speak for themselves as there are sooo many! When you get to the picture of the 4 girls on the tree stump and the one of them all on the brick wall remember Sonya has an extreme fear of heights. Enjoy!

Ok, that's all for now! Sonya had her surgery this past Thursday. She has her right Radius and Ulna in her lower arm rodded and had her right Tibia rod revised. Surgery went very well and I will have a full update as soon as I can get my computer updated as we had a major crash just before we left for the hospital. I am only able to post this since I had it saved in my postings as a work in progress. Good thing I uploaded all the photos to the post because right now I am without Adobe Photoshop or any other photo archiving program since all was literally wiped out. Actually I was just able to fix a minor problem with our blog today. Thus no background for now. Ugh Java Script! Hopefully we will have all the kinks worked out and all the updates finished soon so that I can get back to blogging! Thanks for checking in!

Pennsylvania Renaissance Faire

2010-10-04T19:52:00.006-04:00

This past Saturday the girls and I went to the Pennsylvania Renaissance Faire with my sister Meghan, her daughter Taylor and my mom! We had a fantastic time wine tasting, eating yummy faire food, listening to music and taking in all the sights!

First stop of course was to get pretty fairy crowns with ribbons and wands!

Then it was lunch and face painting!

"The carriage brigade!"

Somebody was extremely tired and took a very long nap!

As you can see Akela acquired a mask and both Zoe and Akela grew fairy wings! Of course we found the perfect fairy tree to hang out in!

Zoe named herself "Flying Cat" for the day after this pirate asked her what her theme was as she and her Aunt Mae Mae climbed aboard the crow's nest ride.

This ride is man-powered! The guys push the bottom beams around and around as the upper ropes twist around the pole bringing the nest up and up, then they simply let go and the nest swivels down!

The town clown err... jester!

Piping and drumming band.

Akela dances with a gypsy briefly!

We watched some glassblowing, checked out some celtic jewlery shops and of course bought some wine and beer from their Mount Hope Winery and Swashbucklers Brewery!

A fun time was had by all!

This Week In Bento's 9/27/2010 - 10/1/2010

2010-10-01T09:11:00.005-04:00

Ok, so I'm sorry I was behind last week with the bento post... things are a bit crazy lately and are about to get even crazier with Sonya's upcoming surgeries. So, this week Zoe bought twice. Once because her mother had a brain malfunction and forgot to wash her bento boxes the night before and was running short on time and once because her mothers brain malfunctioned again and had told her the cafeteria had chicken nuggets on the menu for Thursday when in actuality she was reading last weeks menu and Zoe got stuck with ham and cheese (not very well liked). Oops!

Cinnamon raisin mini bagel with strawberry cream cheese, peach yogurt, fresh peaches kiwi and blueberries.

Egg and cheese plain bagel, fresh peeled apple with carmel dip, baby carrots, grape tomatoes and a yummy chunk of Armenian string cheese.

Fresh pineapple wedges with raspberries, mixed berry yogurt, bologna and cheese half sandwich, baby carrots and celery sticks with dill dip.

Again if anyone has some fresh ideas I welcome them! I strive for a fairly balanced meal - one compartment grain and protein, one compartment dairy, one compartment fruit and one compartment vegetable and sometimes a yummy snack. Zoe has been very happy with my selections and is starting to acquire some more mature eats but is a bit timid sometimes.

Thanks again for checking out This Week In Bento's!

Celtic Fest 2010

2010-09-29T10:01:00.011-04:00

This past weekend we had a fantastic time meeting up with our good friends Sandy and Bob and their daughter, Sonya's OI girlfriend, Evelyn at the Celtic Classic Festival in Bethlehem, PA. We have been going to Celtic Classic for years and go figure so have these guys! How did we not meet sooner?!

Sonya was so happy to see her girlfriend Evie and was really impressed with her leg braces and cool One Star shoes that match her own!

Zoe and Akela had already visited some of the crafts table with their Nani and Popi when we arrived and finally found them! It is quite a large event and there are hundreds, probably thousands of people wandering about! They made some really cute Irish headdresses!

So of course Sonya needed one too!

We then all went to the crafts table to create more fun art! They really did a great job of providing activities for the kids this year and all of it was FREE! Totally awesome!

Zoe and Akela showing their beautiful work!

Sonya and Evelyn were so cute together! Evelyn was showing Sonya how to hold up her artwork! "Like this Sonya!"

We LOVE festival food! Particularly this kind! Last year I had some of their authentic Irish cooking such as corned beef and cabbage, but since I am Irish and my mom has cooked most of these meals as I grew up I can truthfully say, nothing compares to mom's awesome cooking! So this year I stuck with a super long hot dog with kraut and I tried these really cool spiral potato chips on a stick (which I wish I had a personal picture of, the one below is not mine but this is what they look like). They were yummy, sort of similar to french fry consistency but expensive at $5 a stick. They had a few different varieties including cheddar and sour cream and onion but I tried the sweet potato with brown sugar and cinnamon, seriously it's like candy! Yummo!

Zoe enjoying her good eats!

Everywhere at the festival there are piping bands stepping through the streets! They are very impressive!

Sonya and Evelyn watching and waiting for the band to pass by!

I really wish I had the picture, I totally missed the shot, but there was one really talented drummer who was stepping, drumming and balancing his beer on the drum all at the same time! So awesome!

My goofballs!

Best friends having another great adventure together!

This Week In Bento's 9/13/2010 - 9/17/2010

2010-09-29T09:25:00.004-04:00

Cinnamon Toast Waffles with syrup, strawberry banana yogurt, fresh strawberries and blueberries, halved cherry tomatoes and quartered cucumber slices mixed with dill dip.

Wow, talk about getting lazy... it's almost a repeat!
Slice of Nani's homemade apple cake, cherry yogurt, fresh strawberries and blueberries, halved cherry tomatoes quartered cucumber slices mixed with dill dip and some gourmet jelly beans.

Turkey and shredded cheddar wrap, mixed berry yogurt, tomato slices and baby carrots, fresh strawberries and blueberries and gourmet jelly beans.

New bento ware! Found these cute containers at Borders book store. Zoe was happy to see them in her birthday bag!

Fresh ripe peach slices with red grapes, PB and Fluff no crust sandwich (heart drawn on with a food marker, so fun!), cherry berry yogurt and teddy grahams.

Half a PB and J sandwich, strawberry whip jello fluff, grape tomatoes, cucumber slices, fruit salad and maraschino cherries treat!

So far we are doing great with packed lunches! Zoe is loving them and I am on the hunt for new ideas all the time! If you have any ideas or suggestions please do share! Zoe's tastes are pretty mature and she is liking more variety lately!

Thanks for checking out our This Week In Bento's!

Almost Double Digits!

2010-09-24T00:19:00.011-04:00

Zoe celebrated her 9th birthday this past weekend! I can't believe she is 9 already!

We had a family party as well as a friend party all in one day!

Here are some highlights!

Opening presents with family!

Blowing out her 9 candles!

Sonya taking an in between parties break and wearing her daddy's sunglasses!

The friends outdoor party decor!

Ice Cream Social!!!

Ice cream cone favors!

"Welcome to my party!"

Note : Since I didn't get permission other children are not published here on the blog.

Zoe enjoying her sundae!

Akela and Sonya enjoying their sundaes! (Sonya has some candy in her hands)

And now she has a candy face!

The kids had a blast making their own sundaes, playing games and opening presents! So what to do with those decorations that just get tossed? Take a few nice pics and then turn the kids loose with the balloons and flower puff balls!

Akela posed sooo sweetly!

Right about now Zoe is tired of pictures! Who can blame her, she was the focus of attention all day!

Jump with the decor!

Run with the decor!

Take silly pictures with the decor! (Where did she learn the flower in teeth pose?)

Pop the decor! (Poor Akela burst all her balloons within 5 minutes of taking off with them as she kept on brushing the bushes with them!

Get tangled in the decor!

Kick the decor with your heels!

Try to fly the decor!

Huddle with the decor!

Spin around with the decor!

Oh Zoe, you crack me up! How could I forget, make a hat with the decor and strike a pose!

Happy birthday to my fun loving sweet Zoe girl!

This Week In Bento's : 9/13/10-9/17/10

2010-09-20T09:31:00.000-04:00

Alright here are last weeks bento's! I'm so glad that I can keep this up! I actually think I may be addicted to making these cute little variety lunches for Zoe! She is loving them and even requested a packed lunch over school pizza day this week! Whose kid is this anyway? Miss pizza? REALLY?!

Monday:

Cinnamon mini waffles with syrup dip, cherry yogurt, cucumbers and baby carrots coupled with cute hello kitty cut out Muenster cheese, red grapes and a Capri Sun (which is getting lame according to Zoe, so later this week we....)

Tuesday:

Birthday Girl Bento!!! Cinnamon raisin swirled glazed bun with berry fruit roll up surrounding and a special #9 cut out from the roll up to top it with (very hard to do considering how sticky the roll up was!), baby carrots, cucumbers, grape tomatoes, red grapes and kiwi and more hello kitty Muenster cheese with bologna roll ups. Um yeah, the bologna is supposed to be turned around the other way to be a "9" not a "6", this either happened because #1. I had a glass of wine prior to packing. #2. It was 12 midnight and I was very tired. #3. I was secretly wishing it was just her 6th birthday and she really wasn't growing up too fast on me! or #4. A combination of all the above! I'm going with #4!

Wednesday:

Hump day race through the week so that we can get to that special birthday party at the end of the school week! Race patterned apple wedge, clementine and cucumber with strawberry slices, Strawberry banana creamy yogurt, Race patterned bologna and cheese sandwich with romaine (the 1/2 sandwich is underneath the pattern topper) and Pirate's Booty! Argh!!!

This is also where we ditched the Capri Suns and I finally bought the girls sturdy reusable water bottles. We have had water bottles before, but the crappy versions that always leaked. This time we bought each girl a Sigg, Camelbak, Embark and a Nalgene. I whipped up a pitcher of Koolaide and made Koolaide ice cubes too for testing. I love doing frozen drink cubes so that the drink stays cool but doesn't get watered down! So far the Sigg and Camelbak passed my tests! I have no doubt that Nalgene will do well as I have had mine for years and just replaced it with a BPA free one. The only one I'm unsure of is the Embark... I've just never seen them before but it looked durable! I also would love to try more of these products since I just bought 2 Aladdin airtight snack containers with snapped inside the lid ice packs. So cool!

Thursday:

Cinnamon raisin mini bagel with strawberry cream cheese and fresh strawberries, Strawberry thick and creamy yogurt, cucumbers, baby carrots and grape tomatoes, fresh strawberries and Panda Bear cookies.

Friday:

Yes, I bought the Pampered Chef sandwich maker! I love how the inside stays inside with these types of cut sandwiches! Who likes a leaky messy sandwich?! Peanut butter and Fluff sandwich (oh fluff, how I loved you in elementary school!), dried banana chips and Yan Yan sticks with strawberry dip, Peach thick and creamy yogurt and fresh strawberries!

So, you want to know how Akela and Sonya are eating too? That's right, human picnic table style!!! Just kidding they were playing, but I love their creativity in this matter too!

That's right, human picnic table style!!! Just kidding they were playing, but I do love their creativity in this matter too!

Enjoy your week!

Orthopedic Follow Up

2010-09-17T01:15:00.005-04:00

I'm really late with this, but better late than never so here we go... On the 3rd we had Sonya's 3 month follow up from her leg rodding surgeries. Apparently, our appointment was cancelled and no one bothered to call me so, I drove all the way down there and was then informed... Ugh! The secretaries knew that someone dropped the ball (not me) and that I had drove a long distance, so they accommodated us and had us see one of the other orthopedics doctors. I was nervous about this since no one sees Sonya unless they are an expert in OI care, but none the less we proceeded. The doctor we saw was very nice and his assistant also works with our ortho so that eased my mind a bit. I also talked personally to our ortho's personal assistant over the phone to check if this was a good idea to proceed. Can you tell we've been done wrong before, more than just once?! I don't just trust any doctor anymore.

Anyways, the news is half good, half bad. Good news: Sonya's rods are straight and the bones are healing well! Yay!!! We also had her fitted for her new leg braces. These will help with her severe foot pronation and provide more support to her legs. We had to have new ones made since her old ones were formed to her curvy legs and now she is straight! The only bummer about this is that she may still have a leg length discrepancy and need a lift. It's coming from her femurs which is no surprise since they broke repeatedly. Bad news: Her right tibia rod is not telescoping out and growing with her as it is supposed to do. It is stuck due to a screw that isn't tightened enough and her bone in the surrounding area is so soft that the rod isn't grasping onto it to advance itself. More bad news: Her club foot is coming back! Grrr... And here I was thinking we would only have 9 surgeries this year... What was I thinking??? Yes, in patients with a club foot who have a tendon release surgery to correct it, a high percentage of these patients will have to have the surgery re-performed to re-correct again. I really thought we were in the clear for this one though! Sonya had this surgery done when she was 4 months old and she is on her way to 3 years old now! I thought if it was going to happen it would happen soon after that surgery! The ortho told us that since Sonya has been immobilized for so long ( a year of cast after cast after cast...) her feet haven't been getting any stretching and flexing or walking lately for that matter and so the tendon had the opportunity to tighten up again. *Sigh*

Of course I put a call into our expert ortho not wanting to believe this doc and unfortunately he confirmed it all. The good news: Sonya's tibia rod can be easily fixed with her first arm rodding surgery (surgery #10, but who's counting) on October 7th by making a small incision and adjustment. Our ortho said he would manually advance the rod slightly, tighten the screw and stitch her back up, no cast or splint needed on the leg! Yay! Without this fix Sonya would be at high risk for fracturing at the end of the rod where unprotected bone is and it would be bad, REALLY BAD! So October 7th is double surgery day! As far as the club foot goes, our ortho wants to see how she does with her braces to see if she stretches out a bit. I think he is just prolonging the inevitable surgery (probably because he wants to give Sonya a good break for once), but we'll see. If it really starts hindering Sonya we will have it fixed immediately and hopefully that will be the last of it!

So here is Sonya singing Lady Gaga's Bad Romance while we wait for the ortho to come give us the news. Notice she won't listen to my request to sing the other part of the song and trumps over me with her belting! Haha! Oh and I am not a singer in any which way, so please ignore my awful chorus! Haha!

We have a whole lot coming up so please pardon me as I fall way behind yet again! Zoe turned 9 on Tuesday and has her birthday party this weekend. Oh no, I have a pre-teen on my hands! Sonya totally busted her right arm again, I knew we wouldn't make it much longer and that somehow it would break before the scheduled rodding surgery. Sonya will then be going in on Monday, Tuesday and Wednesday for her PAM treatment and will also be having a fluoroscopy done on her port to figure out what is going on with it as it has been horrible when it comes to blood withdrawls. Hopefully it will all work out and we won't need a replacement surgery. After Sonya is all juiced up on her PAM, she will be having all three arm bones in her right arm rodded on the 7th as well as the tibia fix. Sometime this week we should be welcoming the arrival of her custom wheelchair!!!! This is the gold at the end of a rainbow! I can't wait! 3 weeks after arm rodding surgery #1 Sonya will be having her other arm done. After that we might set off alarms everywhere we go with 10 rods placed! Please keep Sonya in your prayers as we get through all of this! It's about to get VERY busy around here! I really hope this post makes sense as it is almost 2:30am right now. Thanks everyone!

This Week In Bento's - 9/6/10 - 9/10/10

2010-09-13T18:35:00.005-04:00

Ok, before I post Sonya's orthopedic follow up I had to get this in here, plus Zoe's 9th birthday is tomorrow, so party pics to come this weekend!

Hello Kitty PB&J on whole honey wheat with PB adhered blueberry eyes, fresh strawberries, banana chips, baby carrots, cherry tomatoes, blueberries, cucumbers, strawberry yogurt with M&M's topping.

Cinnamon raisin mini bagel, string cheese rounds, cantaloupe, baby carrots, celery sticks with PB for dipping, fresh strawberries, blueberries and red grapes.

PB & J rolls with blueberries and lettuce, flower shaped Asian pears with red grape centers and blueberries, baby carrots, flower shaped cucumbers with cherry tomato centers, strawberry yogurt with "Zoe" cut from fruit roll up and M&M's for topping.

Three days packed since Monday was a holiday and Thursday was an in service day! Enjoy!

Back To School!!!

2010-09-06T23:05:00.012-04:00

We are still here! It's been a long time since I have had the chance to sit down and blog let alone sit down to do anything at all! That's right, the girls went back to school! This means I have been neck deep in paperwork! Don't you just hate filling out the same forms every stinkin' year and most of the information is repeated page after page after page?! Anyways, I have completed all of my homework now and have been very busy entertaining a certain little girl who lost her best playmates to school.

Zoe started 3rd grade this year! I can't believe this girl of mine is going to be 9 years old this month and after this year she will only have 2 more years left of elementary school! This is just crazy! She told me this past week "So mom, next year I'm going to be double digits!" Then it dawned on me, oh crap... in just four more years I'm going to have a teenager on my hands!

Akela entered Kindergarten this year!!! She has never been so happy about school! She has Zoe's old teacher and gets to ride the big girl school bus both ways! She is only in half day and goes to the PM class so I still get to have her around in the morning which has been less upsetting for Sonya.

Sonya misses her sisters when they are gone at school! I think she was nervous thinking that I was going to ship her off somewhere on that first day back. She even told me "Mommy, I no go on big yellow bus!" I re-assured her she wasn't going anywhere but she clung to me all day like saran wrap! "Mommy play with me, mommy hold me, mommy cuddle me, mommy... mommy.. mommy... mommy!" It was a tough first day for Sonya, but as the rest of the week went on she realized it was going to be ok, she had mommy all to herself!

Sad to see her sisters go!

Excited to see her sisters bus round the corner on their way home again! So excited that she nor I noticed the bee sitting on her leg! No worries, no sting!

So, last year I gave bento boxes a try for Zoe's lunch. I wasn't able to keep up very well and I sent more $$$ for hot lunch at school as the year wore on. In our area it costs me much less to pack a lunch! The added bonus is I know that she is getting something healthy to eat and I can portion control and see how much of what she is eating! Plus, it's fun and creative! For those of you who wonder how I have the time to do all this... I pack it ahead of time at night with a glass of wine or hot tea while I'm unwinding. It's more relaxing that way!

What is a bento box, you say? A bento box is a single-portion takeout or home-packed meal common in Japanese cuisine. A traditional bento consists of rice, fish or meat, and one or more pickled or cooked vegetables, usually in a box-shaped container. Containers range from disposable mass produced to hand crafted lacquerware. Although bento are readily available in many places throughout Japan, including convenience stores, bento shops, train stations, and department stores, it is still common for Japanese homemakers to spend time and energy for their spouse, child, or themselves producing a carefully prepared lunch box.

Bento can be very elaborately arranged in a style called kyaraben or "character bento". Kyaraben is typically decorated to look like popular Japanese cartoon characters (anime), characters from comic books (manga), or video game characters. Another popular bento style is "oekakiben" or "picture bento", which is decorated to look like people, animals, buildings and monuments, or items such as flowers and plants. Contests are often held where bento arrangers compete for the most aesthetically pleasing arrangements.

I am just a beginner here, so don't expect anything crazy elaborate from me, but I did think that this would be really fun for Zoe! When Akela heads to 1st grade next year and is in school for lunch, I will do the same for her! For those of you who are interested in Bento ware, our kit is from Laptop Lunches. I have also found Planet Box and Go Green Lunch Box online to look very promising and will most likely be ordering! Ebay has a fantastic array of bento supplies and if you Google Blog Search "bento lunch" many blogs will pop up that can help get you started!

Zoe's kitty lunch box

Fun lunch box love notes found here.

First day lunch!

Mini cinnamon raisin bagel, half a banana, strawberries, blueberries and grapes, baby carrots, cherry tomatoes, cucumber slices, lettuce and strawberry yogurt with M&M sprinkles, a Capri Sun juice pouch and really cute Koala cookies!

Day 2 : Strawberry cream cheese and strawberry jelly sandwich on honey wheat (if you haven't tried it, what are you waiting for?!) topped with strawberries and blueberries, baby carrots, cucumber slices, cherry tomatoes, clementine orange with my first attempt at cutting a shape on rind (it's a star), blueberries and strawberries, Yan Yan cookie sticks with strawberry dip, yogurt covered raisins and a Capri Sun drink pouch.

Day 3 : Bologna and cheese on honey wheat sandwich, Asian pear slices, strawberries, blueberries, baby carrots, celery sticks and PB, cucumber slices, cherry tomatoes, pistachios and home made banana bread with a Capri Sun drink pouch.

Zoe bought on Day 4 and Day 5 they had off for Labor Day weekend. Ok, so I was thinking... if I can keep up with the bentos this year maybe I will do a weekly post on the bentos of the week... Any thoughts?

Happy back to school everyone!!! I promise I will be catching up with everyone soon!!!

Brigantine Beach 2010

2010-08-15T23:01:00.001-04:00

Our vacation at Brigantine Beach was fantastic as always!

As you can see we packed the van to the brim!

After I reclined in a lounger and pondered where I placed my glass of wine, Sonya followed in my foot steps climbing up in her own lounger and exclaimed “Where’s my wine? I need my wine!!!”

There was much fun to be had!

Feeding the seagulls bread! This was the only shot I got since I was pooped on (I’m beginning to think there is a conspiracy as each year I get pooped on at least once)!

We enjoyed the boardwalk!

Akela’s goofy face pic!

Gotta love Banana Whip and Akela’s goofy face again!

Riding with cousins was a hit, except for this balloon ride that freaked Sonya out hence no picture of us riding it… I was too busy consoling her!

This pic reminds me of last year! Sonya with cousin Garrett OC Boardwalk 2010.

Sonya and Garrett OC Boardwalk 2009.

Sonya hi-fives Fry Guy!

Family pic!

My sweet girls!

3D sidewalk chalk is one of Zoe’s faves, Akela likes to throw rocks and Sonya loves to paint sea shells!

Love this idea from the Camenga’s, so I gave it a shot. Not edited yet…

Remember this? Sonya in Brigantine 2009.

Some feelings about sand just never change. Sonya Brigantine 2010.

Sonya loved her mini pool parked under the umbrella! I am totally doing this every year for her!

As the week went on she became more comfortable with the sand.

I love this pic of cousin Pernalyn and Sonya!

“Daddy, you have boobies!” ~ Out of the mouths of babes!

Zoe was so sweet to sit in the pool and play with her sister!

Akela and Sonya building sandcastles and then smashing them down!

So precious!

Akela and cousin Camille going wave jumping!

Zoe flew her kite beautifully with mommy’s sunglasses of course!

Time to rest with mommy!

Zoe going out to catch some waves!

Of course she plays with seaweed! This is Akela after all, princess of quirkiness! This is the kid who swallowed her 1st loose tooth in her sleep just last week, the kid who used to get into everything (brushed teeth with shoe polish, exploded an economy size bottle of baby powder in her room, pooped blue after eating a blue Crayola crayon and drank Tilex. Yes, poison control knows who I am.), the kid who’s favorite animal 2 years ago was a “waspur” (lobster) “because I like to eat it” and the kid who finger painted our pet cat green. I could probably come up with a hundred more examples of Akela craziness but that’s another post.

Sonya and daddy having a talk about beer.

There was only one casualty this year and it wasn’t Sonya. Poor cousin Miriam locked herself in the bathroom and bit down on a shaving razor. Minutes later she’s enjoying her corn on the cob!

The girls love to play with their cousin Camille!

Miriam, sharing her music box with Sonya.

Sonya is doing a great job standing up! She saw Miriam and decided she could do it too!

And Miriam wanted to help, so she held up Sonya’s head for her! Haha! These two are adorable together! Mim is really careful with her! I can’t wait to see them partying it up at Mim’s 2nd birthday at the end of this month!

Of course we did our annual photo shoot at the beach! We didn’t get down to the dunes like we did last year because the girls just had their baths and showers and I quote “didn’t want to get all sandy again!” Seriously?! Oh boy, here we go!

This is one of the few photo’s I have of Akela actually looking at me! Usually when I take her photo she looks anywhere but truly at me!

Silly smirk!

Sometimes her non direct look can be sooo cute though!

I love this angelic look on Sonya!

Yuck rotting wood chips! Haha!

Classic Zoe!

One of my favorites!

Attempt at a group shot.

As good as it gets…

Who wants ice cream?!

Bubble Gum!

Blue Goo!

Banana Ripple!

And here are a few examples of what happens to my kids when they are tired of the camera in their face…

Sonya picked up a new talent while on vacation and she wanted me to share it with you! Funny face making!

Thanks for checking in! By the way, this is my first post using Windows Live Writer… I hope I did a good job with it. I’m not quite used to using it yet and have a lot to learn, so we’ll see!

I Hate D.I.

2010-07-31T21:05:00.000-04:00

Ugh... This is not a fun post and it's long... So fair warning! I dread these types of posts, but blogging has always been a great outlet for me to share the good and the bad, to celebrate and to vent and let it all out... and I know that my true friends are here to support and completely understand!

For more information on Dentinogenesis Imperfecta please click here for it's definition and all that it entails. Here's a brief explanation : DI is not decay or anything like it, it's a genetic condition and cannot be resolved by any amount of extra cleaning or the like. The only treatment for this problem is sealing, bonding, capping and crowning when the time comes. Essentially the same collagen defect that causes Sonya's bones to break also causes her teeth to wear down, chip and break away in a painful manner. All this happens just as fast as her teeth start to come in and progresses rapidly in her case.

We had been told back in April '09 after xrays that Sonya's teeth were not fully erupted and that they could not be worked on until her clinical crowns came in. In November '09 after xrays we were told that she does have DI and that she would eventually need treatment such as caps and crowns but that they wanted to wait and see what her 2 year old molars looked like when they fully erupted so to see them in 6 months. We went back in late May 2010 had xrays taken and were told that her 2 year old molars still were not erupted and that she was getting close to needing crowns, but that we could still wait on her molars to come in. I said "no, let's schedule the surgery on what she needs done now and we'll deal with the molars later". At this point the dentin inside Sonya's little of what's left enamel was exposed and her eating habits had become deplorable. In quantity she would eat approximately a cup of yogurt, a chicken nugget and 2 Pediasure supplement drinks a day. The Pediasure is probably what kept her alive since she was starving and loosing weight even while on it, it was just too painful for her to chew!

The earliest they could schedule her surgery was this past Monday the 26th of July. So we set the date and I was very nervous about yet another surgery (#9, but who's counting) but I was also very excited to see Sonya's new pretty smile!!! She was to have her front top four teeth that had worn down to the gum line crowned with white and one silver crown in the back to help a poor tooth that cracked in half. I was so excited I took "before" pictures!

Unfortunately, things didn't go as planned. After Sonya was given her happy juice AKA Versed, a drug that they spray up her nose to make her more comfortable and agreeable, the dentist came in to take a look at her teeth. He then told us that he might not be able to save them, but he would have a better idea once Sonya was back in the operating room and new xrays were done. No one came out in the process of her surgery to tell me that her teeth had to be extracted. The nurse did come out to tell me that he had started working on her teeth after about 30 minutes of waiting in the PACU area. I asked her how things were going, if he was able to do the crowning and she responded that she would check and get back to me. 30 minutes later the dentist came out to the waiting room to tell me that he had to extract the top front four due to no tooth structure and severe infection. Here, I thought he was coming out to tell me that he might have to extract and for my permission... nope, he just went ahead and did it! Holding back the tears I walked back into the room with him to see her xrays and get a better explanation out of him.

"How was this infection and tooth structure depleting missed just 2 months ago? We followed your instructions to come back every 6 months and to brush twice daily and avoid over sugary foods and drinks! Where would we be if I waited for those 2 year old molars to come in instead of scheduling this surgery?" He couldn't give me any valid answers other than she had some new decay and insisted that he told us to schedule surgery back in November! What BS! I responded with "Do you really think that I would have let this happen to her?! You really think that with all she has going on in her life that I would let any of her medical care slip?!" He had no answer for me... I asked then "How do we make sure this never happens again?! This can never happen again!" He replied "Well, just follow up in 2 weeks, brush twice daily and we will see her again in 6 months." Me: "No, I feel she needs to be seen more frequently than that... if her DI is this severe it should be watched much more closely!" "Can you give her a plate with some fakes? She has nothing to bite with or smile with! What about her ability to eat and smile?" He told me they couldn't do a plate with fakes that it would block the new permanents from coming in. I asked when they would be coming in, hoping to myself that it would be very soon, and he told me there was no way to know for sure but most likely around age 7-8. Me: "So she has to go around toothless for 6 years???!!!" He had no reply and simply stated he would check with the nurses in the recovery room to see if Sonya was ready for her me to see her and left the room. He looked at me like I was crazy, like I should have known this was coming, like I shouldn't be flipping out! I was pretty much in shock I think... I couldn't think fast enough to even freak out! Questions kept pouring out of my mouth out of surprise of this quick turn of events, thoughts stirring in my mind of what this now meant for Sonya. I was frozen when the dentist didn't have valid responses or good explanations for me. I couldn't think of what to say to drawl out what I wanted from him. I absolutely hate it when that happens!

A nurse called me back to see Sonya. At this point my blood was boiling but my body was like nervous jello... I was angry but stayed calm and all at the same time I was nervous about contesting the dentist over the fact that I believe he waiting to long to treat her. "Medical malpractice" sifted through my brain. I enter into the recovery room (a room that looks similar to a small ER where several patients are recovering in their curtained off sections) and what do I see but a BLOOD PRESSURE CUFF on Sonya's leg! Let the FREAK OUT commence! We never do blood pressures on Sonya because it will most likely result in a fracture and they were well aware of this before she went back into surgery. I noted to them that even in her more involved surgeries we did not use BP's. They were supposed to monitor her with a pulse ox. Sonya was completely inconsolable as she screamed "My Yeg, My Yeg, My Yeg!!!!"

I immediately ripped off the BP cuff and freaked "This should not be on her! She has OI! What happened to monitoring with a pulse ox? Her leg is most likely broken now!"

The nurse was definitely startled and responded "We always do BP's on sedated patients."

Me: "What?! We were agreed on this before her surgery... what happened? What pain meds do you have her on? She's really upset!"

Nurse: "Morphine."

Me: "Oh my God! I requested different pain meds since Sonya has bad reactions to morphine! Where's the anesthesiologist? I want her on Loratab or Oxycodone... something that won't make her freak out and something that will take the pain away from the surgery and a possible fracture as soon as I figure out whether it is broken or just slightly cracked and that's going to be pretty freakin' damn hard to figure out since she's on MORPHINE!!!"

Nurse: "I don't know why she's acting this way. Whenever we use morphine with other kids they are still calm and dazed at this point in their recovery."

Me: "Let's start over. Hi, I'm Melissa Swartley and this is my daughter Sonya. Sonya has OI. SONYA ALSO HAS BAD REACTIONS TO MORPHINE AND SHE HAS A BROKEN LEG BECAUSE OF THAT BP CUFF!"

Completely puzzled the nurse starts looking for the anesthesiologist.

Somehow I still can't convince the anesthesiologist that this is how we do surgery, no BP's, no morphine... different pain management. For some crazy reason everyone that knows Sonya from previous surgeries are all on vacation, I swear! Everyone thinks I'm crazy and I don't see a single familiar face in the surrounding area! Of course, this figures... I give up and immediately request they flush her port with Heparin and de-access her so that we can get the heck out before anything else goes tragically wrong. 30 minutes later I'm wheeling her out of the recovery room and to the parking lot where I administer her pain meds (Loratab) and wrap her leg up with SAM and Ace that I keep in my purse for such an occasion. Later on she requested the wrap off and has been fine since... I don't want to jinx myself here, but we are only out of a cast 18 days now and this is the longest we have been cast free since I don't know when... June 2009? I feel another fracture coming on and with this little crack, well I'm calling it... Left tibia, place your bets!

On the ride home I mutter to myself "I hate D.I."

Before: What is visible for her front top four teeth, is actually dentin (the yellow inside of a tooth) although they look almost white in this picture. The little vampire teeth are her canines or cuspids and are not as severely affected as you can see in the last two pictures. They are the size her front four teeth should be.

In the pre-op room playing.

Climbing up the inclined bed and then sliding back down! Monkey!

After: 4 front top extractions and two silver caps in the back (there was a second bad tooth back there that the dentist felt needed capping immediately). It looks like she only had 3 extractions in this picture because the packing that they fill her holes with in slightly seeping out the one hole (on the right in the pic).

I'm really bummed about the extractions... we went in thinking she would be coming home with pretty new teeth and now she has nothing to take a bite with. No sandwiches, no slices of pizza, no apples.... School pictures with closed mouth smiles and one more thing that's going to make her stand out. I cried A LOT! This was so unexpected. Why had I not prepared myself for the possibility that things may not go right?! I should know better when it comes to Sonya. We never know which way the ball is going to roll. We have been on this crazy rollercoaster long enough to know better... But then I got some comforting news from my mom! She had spoke to my dentist whom I have been seeing since I was a young kid and whom she also sees. He said that it would be possible to get a plate with some fakes in maybe a few years when she would understand to keep it in her mouth and not play with it or lose it! (I'm thinking 4-5 years of age). It isn't necessary though as the front teeth don't shift around much like they do in the back. I was worried about maintaining that space for her new teeth to come in. Many kids in Kindergarten and 1st grade are missing their teeth as this is the time where they fall out and the new permanents come in and everyone has gaping awkward smiles, so teasing may not be an issue at that time. He also said that when the tiniest bit of decay sets in on baby teeth they can go real bad real quick.

So the plan is to go back for our follow up in 2 weeks. Since her specialist dentist does not feel it is necessary for her to be seen more frequently we will be taking her to the older girls dentist for extra cleanings and checkups in between and we'll pay out of pocket. Hopefully I can find someone else to help her with her DI, because I am truly disappointed with how this all went. Not only am I upset over the BP's and Morphine but for the extractions without coming to me to discuss that path first and for the dentist to flat out lie to me and tell me that he told us we were supposed to schedule surgery back in Fall. This shows me that he is either absolutely and completely disorganized and has incompetent communication skills as does his staff or he is utterly dishonest and shouldn't be trusted! I think he's trying to cover his ass somehow, but that's a bold move... lying to me like that and placing the blame on me the parent. I've requested all of her records to be sent directly to me. I'm hoping he didn't change them to reflect in his favor.... illegal.

Ok, I know that was super long and depressing... so let's end it on a sweet note!

You may have noticed Sonya's teddy in the previous pictures. He has stuck by her side since day one! Teddy is her best buddy and accompanies her through every obstacle and challenge, goes through all the same surgeries and comes out with the same casts and he is with her through all the ordinary times as well. He sleeps with her every night! What a good pal he is!

Teddy on the day of surgery:

Teddy with Sonya at one month of age!

Awww!!! I know! Thought you would enjoy those sweet pics!

Baltimore Aquarium

2010-07-29T18:50:00.000-04:00

This past Saturday we met up with the Greene Family at the National Aquarium in Baltimore. We had a wonderful time as always with the Greene's! Sonya and Simon were so happy to be reunited again!

My girls outside the aquarium.

Zoe and Akela checking out the Lion Fish!

Huge Sea Turtle! No lie, this guy was bigger than Zoe!

I never know how Sonya is going to fair with characters in costume... she's terrified of Santa and the Easter Bunny, yet somehow this Puffin guy didn't scare her off!

She even convinced Simon that it was ok to come on over!

Jenn and Jude! I can't believe how fast this cutie is growing up!

Zoe and Akela loved the kids zone where they searched for creatures in this log!

Sonya and Simon loved playing in the sand together!

Sonya says: Wow, and I thought this chair was huge and heavy, check out what this turtle has to lug around!

We went to a 4D show! What a blast! We saw the Dora and Diego Adventure! The older girls think these types of shows are totally awesome!

This is Sonya's second movie experience, her first being at Chocolate World, and she understood this time that she needed to keep her glasses on! Her favorite part was smelling the banana scent that was piped into the theater while watching a banana pop out of the screen to be peeled, but she wasn't too fond of getting sprayed with the water when Dora and Diego boarded their jet ski boat!

Such a boy! Simon loves Sonya's wheels! He was completely fascinated with her chair!

He kept trying to propel her and then we realized he was trying to help her turn around so that she could see something that he wanted to share with her! How sweet! He wanted her to see through the glass behind them and all the people walking down below!

Next we went to see the dolphin show!!!

Jude decided that it was a good time to take a little nap!

We all loved the show! I know this picture doesn't depict excitement, but it's the only clear shot I got! They were listening intently!

Dolphin flips!

Onto the other exhibits!

Those are some big fish!!!

Simon's favorite part, feeding time with bugs!

I love this wall of lit up photo's! Huge and beautiful!

Zoe and Akela posing for the camera!

Another enormous fish!

Sonya checking out the creatures in the tank.

It was very busy in this section so I didn't get a picture of the actual Dwarf Caiman but I managed to get a fuzzy picture of it's picture description!

Another favorite part of the aquarium for Simon! The revolving doors!!! My older girls also think these are the coolest things ever! Too funny! Sonya doesn't fit through these with her chair, but the aquarium was pretty accessible and traveling with Sonya in her chair does have it's perks. We pretty much have VIP status wherever we go and so does our entire party! We were escorted and entered both the 4D show and the dolphin show first and had our own special seating area! We also had access to large elevators reserved just for the differently abled population! Very nice!

Up at the top level in the friendly feathered friends zone!

Still loving her wheels!

On our way down to the first floor again we went through the shark tank and headed for the Jellyfish Invasion tanks.

Sonya: "Ahhh sharks!"

Simon: "Oh please Sonya, you're safe with me!"

These Jellies are so crazy awesome to watch!

It was a long day and it was time to say our farewells... but what is this???

Simon all of a sudden was in love with Sonya's sister Akela and chased her about until he got a good hug out of her! Oh boy, this cutie is going to be quite the handful, he already is a charmer!

One last photo before we headed home. Does anyone know how to get 4 kids to look at the camera and smile?

Can't wait to meet up with the Greene's again!!! Sonya already misses her boyfriend!!!

Look Who's.....

2010-07-28T12:18:00.000-04:00

STANDING!!!

That's right, after 6 long months, 2 leg surgeries and femur fractures before and after leg rodding surgeries Sonya is back up on her own two feet again!!!

She has been working hard with her physical therapists and with me in the water and it has paid off big time! I just had to share this exciting moment with the world!

Girlfriends

2010-07-28T12:17:00.000-04:00

Sonya's girlfriend Evelyn came over for a play date this past Friday! The girls had a great time while Evelyn's mommy Sandy and I chatted away! The girls had fun playing tea party and making toast!

After pretending to make some yummy pizza we ordered real pizza had it delivered and enjoyed lunch together! Sonya had to show her girlfriend Evie her pretty bedroom before she left for home! This picture is one of my favorites of our cute little girls playing together!

Evelyn thought Sonya's room was really cool! Can't wait for our next get together!

She's A Goof!

2010-07-25T20:08:00.004-04:00

Your kid plays with stacking blocks and shape sorters...

Mine tries to splint her leg with her very own supplies....

Plays marco polo with an Ace wrap...

And gives an outstanding Lady Gaga performance on the stairs while wearing her Ace wrap ensemble!

Thank You!

2010-07-19T21:50:00.000-04:00

I've been meaning to do this post for a long time now! It never ceases to amaze me how many people read, follow and leave sweet comments on my blog! I am in awe of how my daughter inspires and touches so many people's hearts! So, this post is for all of you who take the time out of your day to read my blog and hold Sonya in your prayers and thoughts! THANK YOU for caring so much and being such wonderful support!!!

Hugs and Love,

Melissa

3 POSTS!!!!

2010-07-08T21:55:00.003-04:00

Woo! I'm on a roll! That's right folks, there are 3 blog posts below!

Amelia and Sonya!

I DID IT!!!!

Loaner Chair

and just in case you missed it....

OI Friends

Enjoy!!!

Amelia and Sonya!

2010-07-08T19:41:00.012-04:00

Sonya is one lucky girl this summer! For a little girl who is missing out on both the LPA national conference in Nashville, Tennessee and the OI national conference in Portland, Oregon this year, she sure is meeting lots and lots of her online friends this summer anyways!!! This Thursday Sonya met her friend Amelia and her family at the Adventure Aquarium on the Camden Waterfront in New Jersey! Ok, there are too many good pictures to choose from, so I posted a good bunch of them since our kids are way too adorable!

Sonya and Amelia! Sonya loves to call her "Ami"!

Oliver, Amelia and Sonya! Ollie really adores Sonya! He was so sweet with her!

I love this pic of Ami patting Sonya's shoulder! So sweet!

Looks like Ami is trying to tell Sonya to take her chewby out for the photo! Haha!

Such a great smile!

I'll look this way, you look that way!

In the shark tunnel! This is so much fun! Sonya thought it was a little bit creepy having the sharks swim just over our heads!

Jellyfish!

"There's lots of fish in there mommy!"

"Whoa! And a hippopotamus too!"

Checking out the reef!

Sonya made me nervous a few times as she reached out to touch all the tanks. I'm glad that seat belt in her wheelchair works so well!

Little red frog Sonya loved so much!

They look like they could be having a conversation!

Me, Sonya, Kasia and Amelia!

Jarek and Ollie pet some sharks! Sonya pet one too and told me "Yuck, it's slimy!"

Amelia and Sonya in front of a true size replica of Jaws jaws! Looks like it would only take one tiny bite to gobble up these cuties!

I think a certain somebody was starting to get a little bit tired right about here... Ahem, Sonya. Ami looks a bit concerned for her friend!

When that certain somebody gets a little tired, she also becomes agitated! this is the "Grrr, get out of my way or I'm going to mow you over with my wheelchair!" look. This is something we are working on with Sonya right now... learning to be patient and take turns. I have told her a few times already that "Just because you are in a wheelchair doesn't mean you get to go first every single time!" I didn't think I would be putting the brakes on her chair so often! She really will mow down anyone who gets in her way!

This picture is too precious for words! Sonya and Ami give each other some very nice hugs!

On the Waterfront, Philadelphia behind us... It was a wonderful day and as you can see these little ones are exhausted! I'm so happy that we finally got to meet Kasia and her beautiful family and we are looking forward to many more get togethers!!!

I DID IT!!!!

2010-07-08T19:02:00.006-04:00

Wait for it....

"Oh mom! Seriously, already with the camera!"

And....

"I did it!!!!"

That's right! She did it not just once... she's been doing it ever since!!!! Sonya is so proud to be a "big girl" and going on the potty! Mommy was so proud too that she went out and bought these... And these...
And these!!!!

The Gap has some pretty teeny panties for little kids! They are a size 2/3 but after a good wash and dry they shrink a good bit which makes them just right for Sonya! The leg holes are a little bit wide since Sonya has super skinny legs, but we're making them work since every other pantie we have tried are WAY TOO BIG on her! Plus, these panties are just WAY TOO CUTE!!!

Oh and yep, we are sooo training with a broken leg to boot! Now that's talent! Go Sonya!!!

Loaner Chair

2010-07-08T18:51:00.003-04:00

Here she is wheeling around in her new loaner chair for the first time! Since this video, she has improved a good bit with her steering skills. The chair is still quite heavy for her but we are so thankful that we have something for her to learn on while we are working out the kinks of insurance coverage for her custom chair! She is going to have some pretty buff arms after propelling this around! Her ultra light Tilite will be a breeze!

OI Friends!!!

2010-07-01T18:51:00.013-04:00

Our 5th PAM infusion went well! Luckily, Sonya had some friends with her and an arsenal of toys to pass the time! 3 days in a row, 4 hours each day and an hour and a half drive to and from on all days really tires us out! We leave each day around 11:30am and don't get home until about 7:30pm-8pm depending on the horrific traffic that we typically encounter on the way home via I95, I476 and I276.

The port is still not working too well. Everything goes in just fine, but getting blood withdrawals from it has been well, crappy. This time we used TPA, Tissue Plasminogen Activator or in layman's terms a clot buster! The nurses tried a blood withdrawl before Sonya began PAM and it was a no go, so on the second day after PAM they injected the TPA and sent us home with it to sit in her port and work it's magic by breaking down any clots that may be causing problems! We then came in a half hour early on our third and last day to have them try to get the blood labs drawn up. Well, they got blood but it took an awful long time to get it again! Our next step is to have a fluoroscopy done to find out what is going on in there! They will inject ink into her port and do a live xray to see if and where there is a block or problem with the port. We are planning on doing this on the first day of her next PAM cycle in September.

Here are some photos of Sonya getting her feel better meds!

Sonya 2 1/2 years with her buddies Khalif 22 months and Charlie almost 4 years! I actually got them all to look up together!

These kids are such troopers! Toughest cookies on the block!

They all played very nicely with each other! Sonya even shared her teddy bear with Khalif and Khalif tried to share his pacifier with Sonya! So cute!!! Charlie was awesome sharing all his trains and his bed! He was such a sweet gentleman and let Sonya pick the movie that she wanted to watch on the super cool new TV/Internet screens that they now have in Day Medicine!

All in all, they were all very well behaved. Charlie and Sonya had their moments (I don't remember Khalif having any) but with all that these kids go through, a meltdown or two along with some grumpiness sometimes just happens.

So cute!

Mama bear, Baby bear and Papa bear!

We also had a quick visit from my friend Monica and her sons Evan and Adrian! They had some appointments at the hospital as well and dropped in to say hi! I wish I had my camera that day to take pictures of our cuties together as they have grown so much since their last meet up back before we knew of Sonya's OI diagnosis! Click here for a blast from the past! Here is little miss fashionista playing dress up!

"I wanna be famous!"

"Do you have any lip gloss mommy?"

She loves the gloves and the fuzzy hat!

Before PAM week we took a day trip to the Lehigh Valley Zoo with Sandy, Bob and Evelyn, Sonya's close OI girlfriend. Check out the back, back road! Just wide enough for one car...

and this is what is to the left when the trees clear!

What a view huh?! Needless to say I was a little nervous about the drive up and down! The zoo was awesome though and we really got to see lot's of animals very close up!

Almost too close up!

Creepy!

Get too close to this one and he'll spit on you!

The girls could practically reach out and touch this guy! He was a lot faster than I thought he should be with his heavy shell!

We were so lucky to see these baby roos just waking up and emerging from their mamas pouches! They were sooo sleepy as they stumbled out!

One out and one to go... that little guy on the right was pretty comfy in his mamas pouch! I was amazed that we were only separated from these roos by a low lying piece of rope! They were only about 15 feet away too! I couldn't help but think, might they get disturbed by our closeness to their babes, turn aggressive and go on a kick boxing rampage? So we moved on pretty quickly...

It was pretty cool to see these dressy fellas swimming around and then coming out to get fed!

On our way out of the zoo we got to see huge bison and elk as we drove through their reserve. The girls were really impressed that my van could go "off roading" through the creek!

Checking out the river otters!

Evelyn says : Hey didn't you just come out of one of these?

Sonya and Evelyn love to play tigers and lions! "Roar!!!"

Evelyn is looking awesome standing on those newly rodded and straightened femurs! I can't wait to see Sonya up and in action too!

It was a hot day soooo....

Yum! That's a great way to cool off!

And so is this...

Well, not really. It was actually a lot of work to get yourself spinning on this as your hands burned while they lost grip! It was fun trying to relive our childhood, Bob really got it going, but we all gave up and let Zoe show us how it's done! Too bad that thing didn't spray cold water! That would've been the cherry on the ice cream cool down!

Thanks for checking in all! Much more fun coming... we are only beginning our summer adventures!