She's Got Legs and She Know's How To Use Them!

For those of you wondering about the title of this post, yep I love ZZ Top. But, this is even better, Sonya's legs have been uncasted! Woo Hooooooo!

She was completely terrified of the cast saw, and who wouldn't be? That thing looks like it could take your limb off as well as the cast in one swoop. As soon as the saw stopped she started to calm down and they brought over a nice warm basin of water full of suds, a washcloth and a towel to clean her legs off. The inside of the cast was worse than I could have ever imagined. Despite my best efforts to keep the inside of it as clean as possible after 5 double nasty diaper blow outs, it was horrible enough to make one OCD about bathing! Yep, that bad! So I gave Sonya's legs a good ol' scrub down for about 20 minutes and then later when we got home another scrub down, this time with Johnson and Johnson's Bedtime Bath and lotion for the nice scent it offers! Here she is checking out her newly unveiled legs!

Her foot looks unusually large in this photo due to the angle...

When we got home, Sonya spotted her sister's lolly pop sitting on the table and since Akela was outside playing with her friend I figured Sonya could have a taste since she was such a brave girl at the hospital yet again!

I am so impressed with how much Sonya is moving her legs around! As soon as her cast was removed at the hospital she started lifting her right leg (the one that wasn't broken) up and put her toes in her mouth! Her left leg has been moving too a little. I think she is a bit intimidated about moving it around, but she is slowly getting there.

I love her big happy smile in this photo!

The lolly pop was seriously the size of Sonya's head!


Just look at those gams! Her left leg, the one that broke, is laying straight and I am impressed with the straightness of it! I forgot to ask about how many degrees of bowing and angulation it is now at (it definitely looks better than the 90 degrees it was at), they did do x-rays after the uncasting, but she does have a follow up appointment in just 3 more weeks to see how things are looking. Her right leg, the one bent in the photo, is a little worrisome for me right now. The femur looks even more bowed now in comparison to her left and is at increased risk of fracture at this point, but so is her right since it is still on the mend. I just hope that she goes break free for awhile and that she takes it easy when it comes to getting back on her feet!

The baby booties in the photo used to be Zoe's! Zoe wore them when she was about 2 months old and Akela also got to wear them around that age too! Sonya is a size 2 shoe, she has such tiny feet! The smallest size that Stride Rite carries in a walking shoe is a size 3 and they swim on Sonya's feet! We think we may have to special order her shoes when she is ready to get back up on her feet again, which her doctors suspect might be about a month or two from now. After Sonya had broke her arm and had her cast removed she avoided using it until she had no choice when she broke her leg and was placed in a spica cast 2 and a half months later.

Being oh so cute!


I can't believe she is already on her belly and moving about! She has been using her leg that didn't break more and even gets it to bend for crawling but her leg on the mend still drags behind. I put her to bed on her back last night and I found her on her belly this morning, so she knows how to roll herself over!

Reading her Spongebob book with daddy!

I know that she is a Little Person, but WOW! Now that her cast is off she really feels and looks so little! She weighs practically nothing when I pick her up now and I have to get used to holding her without her spica cast!

Tomorrow we go back to her pediatricians office to get an accurate weight and height measurement since she was still in her spica cast at her 18 month well checkup. I don't think she has grown at all again. She has been measuring the same for the past 4 well checkups.

Well, that's all for now! I'll have another update before we head to the beach for vacation and then another one when we get back! Have a great week everyone!

Good Times!!!

We have been having so much fun lately! This past weekend we went to a Reading Phillies baseball game with the girls, their Nani and Popi, Uncle Ben, Aunt Patty, Uncle Josh and cousin Camille! It was so much fun! There was always something going on! We all had great food and Sonya decided that she loves potato salad! She ate my whole section of potato salad while I finished my hot dog!

Zoe and Akela loved hanging out with cousin Camille. Camille is just 6 months younger than Akela and the two of them are a stitch together! They love holding hands together as they "take on the world with their pretty princess powers!" I have no idea where that came from, but I thought it was too funny!

Akela is my little ham for the camera lately! She has the knack of posing just right! The girls enjoyed watching all of the mascot/ characters strut their stuff out on the field and they even got to meet and hug The Reading Phillies Hound Dog!

Akela was so excited as she ran up to give Hound Dog a big ol' hug! She thought he was "soooo cute"! Too bad we don't have the funds for Disney World yet, she would absolutely love all the characters walking around! Zoe thought Hound Dog was ok at a distance, but I think she now believes she is too old for that little kid stuff and told me she didn't want to go up and see him or even have her picture taken with him! Wow, already??? Oh no, my baby is growing up!

And this is what Sonya thought of Hound Dog! Yep, TERRIFIED! Poor Sonya screamed, cried, kicked her half casted leg, and clung onto her Nani's shirt as we backed up and away from scary Hound Dog! Just look at that pout! I guess it's a good thing that we aren't headed to Disney anytime soon!


The girls were also very lucky to meet some of the cheerleaders and have their picture taken with them! Akela and Camille were very excited about the pom-poms as you can see! I think Zoe maybe thinking of doing some cheerleading now! Uh oh!

Look who is all tuckered out! Sonya has recently fallen in love with Spongebob! No worries Simon, it will never work out between them! Haha! She loves "Bob Bob" so much that she spots his face glorifying every product on the market! Seriously "Bob Bob" is everywhere! He's on band aids, paper plates, sippy cups, bubble bath, toothpaste, t-shirts, PJ's, towels, place mats, juice boxes..... EVERYWHERE! Trust me when I say, "NO ISLE IS SAFE!" Needless to say, she got some "Bob Bob" stuff when we went to Walmart this week. I had to circle back and put back all of the unnecessary "Bob Bob" stuff though. Somehow, I just don't think we need "Bob Bob" boxer shorts. Haha!


Today we met up with Jennifer, Jason and Simon in Wilmington Delaware at The People's Festival where they were having a Bob Marley tribute and the origional Wailers were there. Sonya and Simon were again so stinkin' cute together! Simon gave Sonya some yummy yogurt puff treats (Sonya's favorite) and a really pretty t-shirt! He sure does know how to treat his little lady good! Sonya brought Simon his birthday present that she picked out for him all by herself! Sonya loves car's and trucks and even makes the "vroom, bbbbrrrruuummm, kshhhh, beep beep" sounds as she cruises them around our kitchen floor while she does 360's in her cast.... I wish I had a video on this, it's truly hilarious! So I knew when she spotted the Disney's Cars shake, talk and move cars and screamed at me "GET GET GET" that it was what she planned on getting for her sweethearts 2nd birthday! Simon was so sweet and shared his cars with Sonya as they hung out together on the grass at the festival.

Simon is so cute with his cool hat and glasses! Looks like he likes his new cars! Happy 2nd Birthday Simon!

Sonya is showing her love for her other favorite "Bob"! Zoe taught her how to say "Bob Marley" in the car on the way over! Sonya said it once loud and clear, but we haven't heard it since.

Simon is such a sweetheart! He shared his new cars with Sonya! Here they are rolling the cars around on the blanket together!

Checking each other out!

Yum funnel cake!!! There was a good selection of yummy Caribbean food there as well as some good ol' smoothies, water ice and funnel cake! We had a great time chatting and munching on some treats!

Well, Jenn and I look good in this picture! The kiddos were getting a bit tired though! The heat and humidity was killer today!

How cute are they?! Simon shared his Cheerios and Sonya shared some of her Goldfish!

Simon thought Sonya's bows were pretty! See Sonya going for more Cheerios? Haha!

Sonya and Simon loved giving each other big sweet hugs before we left!

"Give me one more big lovey hug before we go Simon!"


"Of course, Sonya!"

Simon even gave her a smooch on the cheek as she patted his back saying "ahhh". Seriously, way too cute!

"Simon I had so much fun on our play date! I can't wait to see you again! Thank you for my pretty shirt! I couldn't wait to put it on when we got home! See you again soon!"

Sonya's shirt is sooooo cute! It says Little Lady and it has a pretty sparking lady bug on it too! Thank you Jenn, Jason and Simon!

We will be getting Sonya's cast off this Monday!!! So I will definitely have another post with pictures of her pretty legs soon afterwards! I can't wait to see how the break healed! Fingers are crossed that it is straighter than the 90 degree angle that it was at before the break! Thanks for checking in! Have a great weekend everyone!

Sonya's First Pamidronate Infusion!

Hi everyone! Sonya had her first pamidronate infusion cycle Monday, Tuesday and Wednesday of this week! She did very well and had no terrible side effects or allergic reactions. The nurse was able to get her IV placed on the first stick, which was great since this process usually takes 3,4 or 5 sticks because of her very small and mostly invisible veins! They took 2 vials of blood for tests and then gave her a flush before starting her treatment. Sonya was really upset about getting hooked up with the IV and monitoring systems, mostly because she was being restrained, but she held her arm very still and let the nurses do their job. My heart was breaking as she asked "why?, why? why?" and then screamed "No, No, NOOOOO!!!" whenever the nurses would attach her medicine tube. Fortunately they were able to leave the IV tube in, tape it down, put a sock over it and send us home with it still in place after her treatment each day! This way she didn't have to be re-stuck with the needle each time. Yay!

My Aunt Kathy came along with us for the first day and she was my extra pair of hands, ears and eyes and she thought about some extra questions that never crossed my mind! How lucky am I to have her for an Aunt! It was nice to have her there to help calm Sonya down and to give me the chance to go for bathroom breaks! She also went out to the cafeteria to grab us some food! Thank you Aunt Kathy!!! I failed to think about bringing food for us to eat, I only thought about Sonya's dietary needs! I did remember to bring things with me on the other two days as I was not allowed to leave the Day Medicine unit.

The first 2 days were the hardest and Sonya was very clingy. She refused to be laid down and sat in my lap the whole time we were there. The first day the battery pack for the IV drip was not charged so we had to stay in our room all plugged in, but the second and third day we had a full battery and took advantage of short walks (it took about 45 seconds to make 1 lap) around the little day medicine unit. She loved the walks in her wagon and it broke up some of the monotony of the long hours spent in this part of the hospital with no windows. On the second day they attached a urine collection bag with adhesive and she made just enough into the bag for analysis! I brought a portable DVD player with Spongebob DVD's, puzzles, her magnetic fishing rod game, a build your own monster puppet with velcro parts, books, coloring books and crayons, Color Wonder paper and Color Wonder markers (she loved this new exciting adventure), her teddy bear and blanket for comfort, her baby doll and a Snap Dolls puppy dog (a big girl toy which really caught her off guard, I could see her thinking "Are you sure I can play with this? But you always tell me no no"), some small Fisher Price plastic flower bug cars, a kazoo, harmonica and wooden train whistle (the nurses were impressed with Sonya's talented playing skills), a large plastic slinky for Sonya to completely mangle up and for me to untangle so that her sister Akela wouldn't freak out about her borrowing it and one of those light up spinning lights in a plastic globe on a wand things. All of that combined with a lunch box full of treats and a sippy cup with extra juice, as well as a large diaper bag full of all the typical baby care items, my purse and a small bag of things for myself (book, magazines and sudoku puzzles, you know just in case she actually slept which she never did) made us look like we were staying for a whole week in the hospital each day that we arrived! However, I used everything that we brought to keep her from chewing on the IV tube with the exception of the small Fisher Price cars that Sonya felt the need to throw with reckless abandon at all the evil equipment in the room! Those got put away right quick! Hahaha!

We met some older girls who have OI also while we were there! Both Mary Kate and Sarah were so sweet and friendly! It was very nice meeting the teen girls and to see how well they can get around in their wheelchairs very quickly as well as talking with them about some of the tough teen stuff when it comes to limitations. They give me very much hope for Sonya and her future! We look forward to seeing them again in Day Medicine at duPont sometime! Since the older girls get their Pamidronate less often we may not see each other when we return in 8 weeks but our appointments may collide another time!

By the third day Sonya was more relaxed after they accessed her IV and started her medicine. She laid on her bed and was completely content watching Spongebob for over 2 1/2 hours! I took the opportunity to read my book and review her discharge instructions! That's when it happened. I didn't hear or smell anything. I just simply got up to check her diaper, it was about time for a change as she needs to be changed every 2 hours with her spica cast on. Well there was a nice big brown puddle underneath Sonya all over the white hospital sheet. Oh man! I immediately started to clean her up with baby wipes. It was all up inside her cast, on the bottom half of her shirt, just everywhere! I called over the nurse to ask for clean bed linens and for her to send a casting technician up because I was certain that this was sudden death for the spica cast and that they would have to remove it and re-cast her! Yep, it was that bad! I went through a whole entire bin of baby wipes plus a package of wipes that the hospital had and then the casting tech arrived just as Sonya's IV machine started beeping indicating that she was finished. The casting tech cleaned even more of the mess out with a huge roll of stockinette, rubbing alcohol and water as the nurse started the flush on Sonya's IV all the while Sonya screamed like a wild banshee! My poor baby! The casting tech was very sweet and gave me a huge roll of stockinette just in case we had a repeat episode at home. While holding a small portable fan (I packed that too) over Sonya's bum to get her dry from this terrible diaper explosion the nurse explained to me that diarrhea can be one of the not so pleasant side effects of Pamidronate. Once Sonya was all packaged up in a fresh clean diaper and a clean onesie another nurse came over to tell us that the blood that was drawn on the first day never made it to the lab! What?! So, unfortunately after all of that craziness Sonya was not quite done yet. Trying to drawl blood from Sonya is like trying to wring out a dry cloth! They got very little after about 25 minutes of trying like heck to suck it out of her! I gasped and pointed out that her wrist and lower arm was turning blue and practically screamed "WHY IS THAT HAPPENING??? IS THAT NORMAL???" They nurse removed the tourniquet and told me she had it on a little too long. What??? It was just horrible! As soon as they gave up, removed the IV and placed a Band Aid over the spot Sonya calmed down and held on to me tightly for dear life! Somehow she has absolutely no bruising from the event and has been very happy today at home! I hope these 8 weeks are super long and relaxing before we go for round 2!

From what I have heard from other parents of OI children the great side effects of a happier child with less bone pain and decrease in fracture rate can be seen as soon as after the first treatment cycle of Pamidronate! I'm so excited to see Sonya doing better! I hope it does resonate within her like they say! Another very cool thing is that Dr. Bober stopped in several times throughout Sonya's treatments each day to see how she was doing and if I had any questions or concerns. He will be doing this every time that we go for treatment! So we won't need to make follow up appointments with him anymore as we will be seeing him every 2 months during treatment! I asked about Sonya's recent chest deformity on Wednesday. Her lower ribs have started to flair outwards and her upper center of her chest is starting to protrude. These chest deformities as well as some others are common with OI and unfortunately there is nothing that can be done about it. Dr. Bober feels that they are mild for now and that hopefully the Pamidronate will help slow down the process a bit, but it is something that Sonya will have to learn to accept as she gets older. This could be very difficult for her as she becomes a pre-teen and everything that is different about her becomes hard for other average kids to understand and accept. I'm hoping that she doesn't have a terrible time with acceptance and I have already begun reading those chapters in preparation.

All in all it was a great 3 days minus the poopy diaper, the blood mix up and the screaming! I'm so glad that it is all over for now and that we can resume everyday life! Ian and I are starting to house hunt and prepare for selling our current home, so as always we are staying quite busy! More on that later! Thanks for checking in and I will leave you all with the very few snapshots from the first day that I took at the hospital. Sonya was kind of angry with me for documenting this not so fun part of her life!

So far so good!


"What is that machine doing?"



"Ok, can you stop with the pictures already mommy?"


"I said stop already! Your not listening to me so I'm going to turn my head away now!"



"See my boo boo?"

Welcome Mileena Marie!

Hi Everybody!

I'm posting to introduce you all to new blogging buddies Kristal and Emanuel and their daughter Mileena Marie! Milenna Marie is 11 months old and has Diastrophic Dysplasia. Their blog can be found at http://www.mileenamarie.blogspot.com/ or at the link in Sonya's LP friends side bar. Kristal is new to the blogging community and came across Sonya's blog and left me a sweet message! I'm so glad she did, yay for blogging buddies! I'm sure you will all warmly welcome her to our fantastic "little" blogging community! Welcome and hugs to you Kristal, Emanuel and Mileena Marie!

I have been extra busy this week and posted twice more! See below!!!

Zoe's and Akela's Ballet Recital

Zoe and Akela have been in ballet classes since around the middle of March. They practiced very hard every Monday and towards the end of the class every Saturday as well. Their performance this year was on stage at a local high school! Their recital this year was Cinderella! Both Zoe and Akela were little mice and Zoe had 2 extra parts, a little blue bird and a lady who tried on the glass slipper (not one of the evil step sisters). It was so cool to see my little girls dancing on stage! Great job Zoe and Akela!

This picture is really blurry, but it reminded me of an Impressionist Edgar Degas painting! That's Zoe's back!

It was really dark in the theater and my camera was a little less than cooperative, but here are a few shots of the girls on stage!

As ball guests...

As cute little mice!

At the very end of the recital... Zoe is right behind Akela who is in the center...


I snapped some much better pictures back stage before the performance!

Akela being a shy little mouse!

"Mommy do you like my mouse ears?"

Being too cute!

Zoe in her pretty blue bird costume! They both really loved having stage makeup applied!

Zoe's pretty bird tail!


She was so happy, but a bit nervous about being on stage!



They both did a wonderful job remembering all of their parts and steps! I was so impressed by all that they learned in such a short period of time! Way to go girls!

Cool Cat Sunglasses

The girls have been enjoying the nice weather out in our back yard. They love swinging on the swing set, serving tea and making "onion soup" out of random weeds and grass in their playhouse, blowing bubbles in the wind and drawing beautiful sidewalk pictures on the patio and walkway. Sonya is always happy to take a ride in her wagon and she now enjoys sniffing all of the flowers in our garden!

Sonya is starting the not wanting her picture taken phase! Uh oh, guess she didn't get the memo that her mommy loves photography!



These two are such goofballs! They thought that our cat Lucy needed to wear sunglasses! Poor cat, he (yep he, poor guy even has a girls name) lives a tortured life!

'Sup dude?

I had to share these pictures of Sonya in her cute onesie that my mom got for her at a nut shop down in the Outer Banks, NC. Here's Sonya resting and working on lifting her leg!



Look closer, it says "Lil Pnut"! How perfect!

Well, that's all for now! I have 2 more new posts to come and hopefully I will be able to post them before Sonya's first Pamidronate infusion cycle on Monday!

"Where's Daddy?!"

Sonya's vocabulary has been bursting lately! She has really been concentrating and perfecting many words, probably due to her current immobility. She has mainly been saying just single words, but just the other day she combined two words for the first time! I can't believe I totally caught it on tape too! In the middle of this video she suddenly exclaims "Where's daddy?!" with no prompting from me or her sister Zoe! Be sure to pause the music player down at the bottom of the screen so that you can hear all of her words! Her new favorite toy to play with is the kazoo! She also likes playing with her sister's big plastic slinky! We are always on the look out for simple, lightweight, inexpensive toys that Sonya can easily hold and play with while laying in her spica cast. If anyone has some suggestions, we are all ears! Enjoy the video!

Sonya Plays The Kazoo