Our Story, Sonya's Story, My 100th Post!

I have been blogging for almost a whole year now and I can't believe that I never got around to posting "Our Story, Sonya's Story". Well, what better time to do it (besides the first post) than now on my 100th post! Geez, 100 posts! Where does the time go?!

This was quite hard for me to relive as I typed it, so hopefully the tears didn't obscure my thought process and this will come across as clearly as I intended it to be. It's a long story, but I didn't want to miss any of the details, as this is first and foremost a place where I document Sonya's precious life.

Ian and I were high school sweethearts and after 6 years of dating we tied the knot on June 22, 2002 only 8 months after our first daughter Zoe Elizabeth was born on September 14th 2001. Yes, Zoe was a little surprise, we like to do things a bit backwards! We lived with my parents until Ian finished college, I tried to finish as well and we both had steady jobs. In September 2003 we bought our first home! It was quite a fixer-upper but with the help of my dad, Ian's dad and my cousin Jim we had the place gutted, remodeled and cleaned up in 4 months time. New house equals new baby... Enter Akela Lillian! Akela was born on the warmest night here in PA on January 13th 2005 when it was an incredibly unseasonal 67 degrees! Shortly after Akela's birth Ian received the chance in a lifetime kind of job! Merck Incorporated finally gave him the call he had been waiting for after his application and resume was handed in years before! He gladly accepted and is still currently working there as a bio technician making some of the top vaccines that our children receive! I continued to waitress and bar tended at a busy restaurant. We were making great money, we had two wonderful children, life was good!

In May of 2007 we were happy to know that we were expecting a third baby! Ian and I always wanted to have 3 children and this little one would complete our family! The first 5 months of my pregnancy sailed by smoothly. I chose to have a level two ultrasound at my 20th week of pregnancy to compensate for the quad-screen blood test that I turned down. When I was pregnant with Akela my triple-screen (before there was a quad) had come back with a false positive for Downs Syndrome and we were under immense stress and worry for her until a level two ultrasound done at the end of my 8th month of pregnancy revealed everything to be just fine. At our 20 week ultrasound with our third baby our lives were turned upside down.

The ultrasound technician slid the transducer over my belly on the day before Zoe's 6th birthday, taking longer than the norm. I had a dress fitting to go to later that night for my sister who was getting married in a little over a month. My previous situation with Akela sent thoughts running through my head as I lay there trying to get the nerve to ask what was taking so long, what was wrong. Did I want to know, dare I ask? I had to press this tech's buttons and get an answer out of her or at least get her to go fetch me my doctor ASAP! She wouldn't tell me what she saw and ran off to go get my doctor. Those 10 minutes felt like an eternity, but nothing could compare to the next 18 weeks that I would spend worrying sick with the knowing of what would/could be.

The doctor came in and repeated the ultrasound again. He told me that my baby girl's femurs were extremely shortened and bowed and that he could see that her one foot was clubbed and that I would need to see some more doctors for another ultrasound. I couldn't believe what I was hearing "malformation, demineralized bones, dwarfism? lethal?" all unbearable, but "baby girl" sounded just wonderful!

5 days later after celebrating Zoe's 6th birthday and attending another party at Ian's brother's house over the weekend, I lay again on another cold hospital table while doctors slowly examined every inch of our baby girl's body through another ultrasound. I initially tried to think happy thoughts. Zoe was getting her picture taken at school that day, I pictured her pretty smile. I thought about Akela contently playing with her toys at home. The doctors kept finding more and more problematic bones. Now her tibia's were also shortened and bowed, her other foot was questionably clubbed as well and her chest was small and bell shaped, her respiratory health in jeopardy. The doctors then had me scheduled in 2 more days for amniocentesis and genetic counseling.

On September 20th 2007 we were told that our baby would not survive. She had one of two lethal skeletal dysplasias. Campomelic Dysplasia was most likely our baby girls' diagnosis with her bell shaped chest which would not support the growth of her ever expanding lungs. We were told that she would suffer respiratory failure shortly after birth. Osteogenesis Imperfecta (Brittle Bones Disease) type 2 did not sound any better. If our daughter was to have this dysplasia she would undoubtedly break almost every bone during her birth, ribs included which could potentially puncture her lungs. The trauma of that many broken bones during the birthing process would be enough to bring upon her death. The doctors painted our daughters future as dark as midnight and as cold as ice with no light or ray of hope to be seen. The amniocentesis I underwent gave no additional information, leaving us to wait and worry. I remember asking "If she has Osteogenesis Imperfecta, would having a C-section help?" My glimmer of hope was shot down with the answer "No, it will not matter which way you chose to deliver, your baby just will not survive, you should make the arrangements now for her funeral. I'm sorry." Just like that, just that cold.

I don't know exactly how much I cried over this devastating news, but I think it was enough to fill all 7 of our oceans. How could I possibly go about daily life with this knowledge of our future in my head at all times? What would I tell my older girls when mommy's belly became small again and there was no baby in her arms? How could I ever possibly live on after something so terribly traumatic? I prayed and prayed and prayed. I pleaded with God to let me keep her, even though I knew it was selfish. I just couldn't seem to get past just wanting to keep her.

I quit my waitressing and bartending job, I could barely face my boss to tell him why. I just came in for my shift the next day after the meeting with the genetic counselors, completely broke down in tears and told him why I had to leave and not come back until God knows when. He understood completely of course! I had follow up ultrasounds every 3 weeks to watch our daughters condition. At first those ultrasounds showed continual increase in significant bowing of her bones and then much later no changes at all.

Only 2 weeks after we were told that our daughter would not survive, my father was diagnosed with stage 4 lung cancer. In between my ultrasounds I attended and organized my sister's bachlorette party with the help of her wonderful bridesmaids as well as her bridal shower party again with her bridesmaids and my mother. I went through several dress fittings for her wedding as my belly kept growing and cried at home after every single one, wondering if there was any slim possibility that our baby would make it. I attended my sister's wedding and watched my father walk her down the isle, seeing him with his hair for the last time. I took my dad in for his chemotherapy treatments and brought him back home again seeing him continually get thinner and sicker. I took the older girls to see Bee Movie and went to Zoe's parent teacher conference meetings. I visited my girlfriend Danielle after she welcomed home her new baby boy Aidan, celebrated Thanksgiving and Christmas with our family and had my hair cut from it's long style into a short bob. After celebrating the new year we had Akela's 3rd birthday party a week early just in case our new baby girl planned on an early arrival. Somewhere in there I had a consultation for a C-section because I did not plan a funeral for our daughter, I wanted to plan a birth and I saw a C-section as hope, just in case her fate was Osteogenesis Imperfecta type 2.

Ian and me with Zoe and Akela (she really wants that beer!)

Our last Christmas with Dad

At 9pm on Wednesday January 16th 2008, 12 days before she was due and 7 days before my planned C-section date, my water broke on my vinyl covered new couch (just in case... good thing huh?!) and I started having contractions. After calling Ian's parents to the house to watch the older girls who were already tucked in bed and calling my doctor to notify him, we rushed off to the hospital to have an emergency C-section. We arrived at 10:45pm and I was in the surgery room and prepped by 11:05pm. At 11:20pm Sonya Collette Swartley entered the world screaming!!! I was so happy to hear her crying! Tears rolled down my face as I begged for them to let me see her! They slipped me a glance of her beautiful face for a brief moment before whisking her away to the neonatal intensive care unit. To me, weighing in at 8lbs 5 oz and 18 inches in length, Sonya did not seem small enough to qualify as a baby with dwarfism! Her apgar scores came back great too! She wasn't even put on oxygen! All of this I had been told from the nurses who frequently came in to give me pain medications through my IV as I waited impatiently to see, hold, feel, hug and kiss my baby girl! I don't remember how long it was before they finally brought her to me and Ian, but it was sometime around 4 or 5am I think. I couldn't believe that she was ok! We nursed and I held her so long, practically refusing to go to sleep because I just couldn't get enough of her.

Just a few hours old.

Our little Eskimo baby.

Sonya's club foot and severely bowed leg.

Here is where things get blurry. All family members came in to visit at various times. So many people came and I was pretty much hopped up on pain meds. My stomach hurt so much from the C-section and I felt like my whole front side was going to literally just tear right off and drop to the ground when I stood up for the first time. It was very uncomfortable to say the least. I don't think all C-sections are this painful, I just think that because of my extreme weight gain towards the end of my pregnancy and Sonya being my third child, those stomach muscles just were not what they used to be! I was sharing a room at the time with another mom who just gave birth to her second baby. Just as my mom and sister had come in to see us (for the first time or again, I'm not sure) a group of doctors rushed in and told them to leave, practically pushing them out and pulling the separation curtain in between me, my family and the other mom. My face fell as I held sweet Sonya in my arms. What was going on? There in the shared room they told me that there was something wrong (I gather from the numerous x-rays that they had taken of Sonya), that Sonya had Campomelic Dysplasia and that she didn't have long to live, that surely her lungs would be smothered by her too small rib cage and that she would need to have more testing done. "What?!!!" was all I could muster. "Do you want your own room?" they offered. I wanted my own damn room now! This was complete bull! Here I am balling, crying so hard I have probably terrified the mother on the other side of the curtain. My baby is going to die? Thoughts racing. Heart dropping. Sinking. Hands shaking uncontrollably. Couldn't they have at least offered me my own room before they killed all my hope?

The rest of my stay at that hospital is completely vague due to all of the trauma and drama that played out. All I really remember is praying and seeing how perfect Sonya was, her cheeks and lips pink with warmth, her dark thick curly hair so soft, her skin tone darker like Ian's (that little bit of beautiful Leni-Lenape Native American peeking through) and her long dark eyelashes occasionally opening up for me to see her gorgeous eyes looking right at me. Sure her foot looked different the way it was bent in half, toes kissing her heal and her leg curled awkwardly coming all the way up to her belly button and resting there naturally, not wanting to straighten, but couldn't those things be easily fixed if they needed to be?

We were transferred to the Children's Hospital of Philadelphia's NICU where we stayed for the next 4 days after the 3 days at our local hospital. X-rays, ultrasounds, blood tests, DNA tests, echo cardiograms and other tests were all run on her. She laid in a teeny tiny examination bed during our whole stay as Ian and I slept bedside in chairs next to her. We only occasionally left to grab something to eat. The cafeteria was all the way across on the other side of the hospital and all of that extra walking for me combined with some unavoidable stairs and no access to a shower caused an infection of my C-section incision. I could care less though and ignored it while Sonya was in the hospital. We met with Sonya's genetics team (yes a whole team just for her) and were told they were almost certain her diagnosis would be Campomelic Dysplasia, a dysplasia so rare that there were only approximately 80 cases in the world. They were 99% positive about their decision and sent out the first set of DNA samples to Cedars Sinai in California. We were told by all of her nurses in the NICU that she was the healthiest baby in their NICU despite her possible diagnosis, that she had no signs of respiratory distress or any other immediate issues and that she would be going home with us on the 23rd.

At the NICU at CHOP.

So many wires and monitors keeping track of her.

Zonked out after a DNA blood withdrawl.

Home sweet home! *Yawn!*

All three of my beautiful girls.

Teeny tiny hands.

Sonya with her teddy 1 month old.

We came home on the 23rd of January and picked up life where we left off. My C-section incision was clearly infected and 2 weeks worth of antibiotics finally cleared up the painful mess. We had some snow days, friends and family came to visit and Akela had her major follow up appointment with her cardiologist. The leaky valve and heart murmur had cleared itself up and one major worry was off of our shoulders! I continued to take my dad to his chemotherapy appointments. In March my dad went into the hospital and we found out that the cancer had spread to his liver. He came home on hospice on Easter Sunday and we all had Easter dinner together. We all visited my dad on the 29th and I took some pictures of him with all 3 of his grandchildren, my daughters. On the 1st of April dad lost his fight against lung cancer when Sonya was just 10 weeks old. He is missed so much and I wish he could see my girls today! Sonya has come so far!

My dad with all three of his grandchildren, my girls, one last time.

Sonya's first cast to correct her club foot.

Surgery, Achilles Tendon Release and Reattachment.

Sleep study test and lung function test a month later to check for respiratory issues. All was well!

Under the assumption of Sonya's Campomelic Dysplasia diagnosis, we started seeing an orthopedist at CHOP for her clubbed foot. The first attempt to correct it was to do a series of casts which would slowly stretch her achilles tendon into it's correct position. If this would not work then surgery would be needed. The day after my dad passed away we headed down to CHOP to have Sonya's first cast applied. I know my dad would have wanted me to still get to this appointment, it was important. Unfortunately after a month of this series of casts method her doctor found that it was not working and Sonya had her first surgery on May 9th 2008. An achilles tendon release surgery was done to correct her clubbed foot. She was put into a cast for a month and then she was braced with a Mitchell Bar Brace, setting her feet outwards at a 70 degree angle. If I only knew how damaging this could have been with her Osteogenesis Imperfecta diagnosis! I did decide on my own that Sonya was done with the brace after only 4 months. I just felt like something wasn't quite right and that I should stop putting it on her.

Sonya with her Mitchell Bar Brace to aid in the final correction of her club foot.

Extreme flexibility huh?!

Family vacation to Brigantine Beach NJ.

Sonya loves her mommy!

9 months old.

Sonya's 1st Christmas!

Opening presents!

Sonya turns 1!

Birthday girl and her cake!

My three girls January 2009.

For the first year of Sonya's life we assumed her diagnosis was Campomelic Dyplasia. When all 3 of the DNA tests for it came back negative over the course of the first year, her geneticist finally sent out the first DNA sample to be tested for Osteogenesis Imperfecta (his second guess). Well, within a month it came back positive for type 3! Man, was I angry that this test wasn't sent out with the tests for Campomelic Dysplasia. We could have known this when she was just a month old, special precautions and treatment could have started much earlier and eliminated much of her pain that she endured all that time! I digress, our Sonya finally had a diagnosis, but what did this mean?!

Osteogenesis Imperfecta (OI) is a genetic disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.” A person born with this disorder is affected throughout his or her life time. In addition to multiple fractures people with OI often have muscle weakness, hearing loss, fatigue, joint laxity, curved bones, scoliosis, blue sclerae (whites of eyes are blue), dentinogenesis imperfecta (brittle teeth), and short stature. Restrictive pulmonary disease occurs in more severely affected people. OI is caused by an error called a mutation on a gene that affects the body’s production of the collagen found in bones, and other tissues. It is not caused by too little calcium or poor nutrition. OI is variable with 8 different types described in medical literature. The types range in severity from a lethal form to a milder form with few visible symptoms. The specific medical problems a person will encounter will depend on the degree of severity. A person with mild OI may experience a few fractures while those with the severe forms may have hundreds in a lifetime. The number of Americans affected with OI is thought to be 25,000-50,000. The range is so wide because mild OI often goes undiagnosed. The majority of cases are caused by a dominant mutation to type 1 collagen (COL1A1 or COL1A2) genes. Other types are caused by mutations of the cartilage-associated protein (CRTAP) gene or the LEPRE1 gene. This type of mutation is inherited in a recessive manner. OI occurs with equal frequency among males and females and among all racial and ethnic groups. Approximately 35% of children with OI are born into a family with no family history of OI. Most often this is due to a new mutation to a gene and not by anything the parents did before or during pregnancy (this is the case with Sonya). Since 1979, OI has been classified by type according to a system based on mode of inheritance, clinical picture, and information from x-rays. The characteristic features of OI vary greatly from person to person, even among people with the same type of OI, and even within the same family. Not all characteristics are evident in each person. Health issues frequently seen in children and adults who have OI include: Short stature, weak tissues, fragile skin, muscle weakness, and loose joints, bleeding, easy bruising, frequent nosebleeds and in a small number of people heavy bleeding from injuries. Hearing loss may begin in childhood and affects approximately 50% of adults. Breathing problems, higher incidence of asthma plus risk for other lung problems and curvature of the spine. To read more you can check out my Osteogenesis Imperfecta post.

Sonya has type 3 moderate Osteogenesis Imperfecta. In most information that can be found on OI, this type 3 is defined as the most severe among those who survive. Sonya has been classified as moderate by her specialists. She is not one of the mild cases yet she is not among the most severe, she is somewhere in between.

Upon finding her new diagnosis I found new doctors, *SPECIALISTS* for Sonya, at AI duPont in Wilmington DE, where they have a OI clinic, and we love them! They have wonderful knowledge of Sonya's condition and we trust them to do what is best for Sonya. There is no cure for OI, but there is treatment. Sonya is on a bisphosphonate called Aredia Pamidronate (PAM). It is an IV infusion that is strengthening her bone density and lessening the amount of the fractures she may sustain. She receives this every 8 weeks for 3 days consecutively for 4 hours a day. For more info you can read my Pamidronate post.

The princess and her PAM!

We carry with us at all times Sonya's diagnosis papers to avoid allegations of child abuse and a "break box" chuck full of splinting materials, pain meds and severe trauma first aid items. Sonya has had 13 fractures to date (she is 20 months old). Both her femurs (thigh bones), left tibia (lower leg) and right radius (lower arm) broke while she was in utero and she also had 2 spinal compression fractures while in there. Shortly after birth in between transport from the local hospital to the CHOP NICU she had another 2 spinal compression fractures. All of these broken bones plus her extensive (over 100) wormian bones (extra suture lines in the skull, there are typically 6) went unnoticed by her doctors at CHOP, explaining the misdiagnosis for over a year (yet I'm still disappointed in their care and examinations, how do you miss 8 broken bones and a funky looking skull on x-rays?). She broke her right radius and ulna (lower arm) in March 2009, her left femur in June 2009, her left index finger in August 2009 and she had a micro fracture in her left scapula in August 2009. Yet through it all she remains strong and happy!

March 2009

March 2009... same break, different cast, she took off the first one!

Sonya with her new SAM splint!

June 2009

She never ceases to amaze me with her determination and strength, her courage and knowledge, her spunk and beauty! We take it all day by day. I often get asked how I do it all, how do I deal with all of this? My answer always stays the same... "A crap load of coffee, incredible patience, next to no sleep and because I have to, I love her! When you become the parent of a special needs child there are extra steps and necessities, setbacks, stress and anxiety but all in all when it comes down to it you get yourself out of bed and work with what you have because you have to, you love your child!" Sonya is a blessing! I am thankful everyday that I got to keep her! Oh, and life is still good, very good!!!

With mommy on the caurosel, no casts or breaks for now!

Sonya's Big Girl Bed!

Ok, so I thought this wouldn't be happening this soon (she's only 20 months old) but we were having problems with Sonya being in her crib. The past few weeks have been nerve racking in the mornings! She is so quiet when she wakes up that I never know when or even if she is awake! Sonya is pulling up to stand again, which is great, but she was attempting this in her crib and was loosing her balance and smashing her face into the rails. This is my best guess as to what was happening. I would always enter her bedroom to see a screaming Sonya with her fists clutching the rails, legs crunched under her body in awkward positions, her face smooshed into the rails lips askew against the wood and her neck bent back so far it looks like it might snap. I've also entered her room and seen her legs wedged between the rails and stuck! I used to use a bumper guard but I had to remove it about 6 months ago because Sonya would put her head in between it and the rails and would get stuck that way! It looked like a suffocation hazard! My older girls didn't move into their big girl beds until they were closer to 3 years old. But Sonya looked like she was going to do some serious damage to herself in the crib! The last thing we need is for her to break a bone just from being in her crib! So, it was time for the big girl bed!

Because of Sonya's Osteogenesis Imperfecta she can not sleep in your average twin bed or even toddler bed! The chances of her falling out of bed at this age are pretty high, even with guardrails... she would probably climb those and somersault her way out! A fall from any height, even just a few inches could be harmful to Sonya. So to avoid more fractures we made up a bed the OI way! It's actually a Montessori method. Well, we went to IKEA and picked up a full size Sultan Tarsta Pillow Top (no mattress) and slipped a waterproof mattress cover and fitted sheet over top and laid it down on the floor for her! The pillow top is very comfy, yet thin enough (1 & 5/8" thick) so that if she were to roll off of it onto her carpet she wouldn't even realize it! Of course I had to OI child proof the room then, but it wasn't too bad. The only major thing I had to deal with was the bookshelf, I just moved it into her closet and closed the doors. The rest of the room was simple... remove floor lamp, plug up the outlets with safety shields, move dresser to cover up an outlet that was accessed for CD player and monitor and gave the carpet a good vacuuming and check over for small choking hazards. We still want to get an anchor for her dresser just to be extra safe, but we think it is fine for now. She has a very old vintage dresser from the Victorian era and it weighs a ton! I can barely move it myself! To dress it up a bit, I added super cute animal vinyl wall rub-on's from Michael's Craft Store to the wall that her bed lies against. I figured it made up for the non-existent headboard, foot board and ummmm bed! Her first night sleeping in her big girl bed was Tuesday the 22nd! She did great! She was a little scared and worried at first, but 10 minutes lying down with mommy in her new bed with some calm talk about this different look and feel was all it took! I left the room while she was still awake and I presented to her a new little stuffed webkinz kitty cat for extra comfort which she loved! All went well and I am hoping and praying that the rest of the week continues to go just as smooth!

Here she is today after a long night last night in the ER. Can you see the bags under her eyes?!

She is loving baby dolls right now!


Here's the new bed complete with my king sized (it's folded) quilt that my grandmother and I made (mostly my grandmother).


Sonya's kitty cat and cute animal wall vinyls are waiting for her!


Zebra, hippopotamus, giraffe and elephant (Sonya's favorite).


Tiger, lion, hippopotamus and zebra.

The new room!

Sonya loves the animals!

"Hi, ippo"


Rolling around, testing it out!


"Ooops!" She's on the carpet! It was a smooth transition though!


Akela and Zoe are so proud of their little sister and her new bed!

"Can we sleep in here too? It's soooo cool!"


New milestone this week: Climbing! Everything and everywhere! She's unstoppable!



She climbed the whole flight all by herself!

Nothing is safe... not even the Bounty paper towels!


This cute rocking horse seat used to be mine when I was a toddler. My dad refinished it when Zoe was born and all three of my girls have enjoyed it! Sonya loves it, but she doesn't like it when I tell her not to stand in it... "Not safe, Sonya!"

Being a monkey, I don't like the positioning of her feet when she does this! Her left foot is twisted around backwards! Just noticed that!

"Waaaa!!!!" Mommy told me to sit down and behave! The terrible two's are on our doorstep!

Sonya's Almost Skull Fracture

Sonya had a bad fall yesterday evening around 6pm while she was trying to climb our end table in the family room (this is her favorite spot and I am starting to feel like I want to get rid of it :0 ). Anyways, she pulled out the bottom drawer, pulled up to a stand while in it and then lost her grip, fell and knocked her head real hard on the table and then the drawer as well. She cried hard for about 10 minutes and then calmed down and started playing again, being her usual self. I didn't think anything of it since she seemed fine again, but then later last night she gave me the worst time going to bed, started holding her head and screaming "Boo Booooo!!! Ow Ow Ow!!!" She is always the perfect angel when it comes to bed time so this really worried me. I felt her noggin and found a giant egg shaped lump right where she had hit it earlier. Man, did I feel stupid for not taking her to the ER right away!

I called my husband and had him drive 45 minutes home from work at about 1am (he's a 3rd shift worker) to be here for the older girls who were tucked in bed asleep and then took Sonya in to the ER by myself. The place was empty... thank God!... but apparently there was an insane rush of people just before we arrived because it took them a half hour to clean up a room for us! The on call doctor, who has seen us for every situation so far came in quickly and gave Sonya a sedative (Ketamine and something else) to calm her down for the CT scan. Sonya was soooo loopy and fought sleep the whole way! She even kept raising her hands and arms up as if to say "no" while she received her CT scan! Talk about strong willed!

The scan results came back after about an hour. They send all of their tests out electronically to a place in Missouri that has a few hundred Radiologists sitting there reading them all and they then send the results back. There was no fracture! She must be hard headed as well as strong willed! When all was said and done we finally went to bed together at about 5am. I'm exhausted as I had to get up to get Zoe off to school this morning at 7:30am. Sonya got up at 8 this morning all cheerful and is now zonked out on the family room floor taking a well needed nap!We are supposed to follow up with our ortho, I will be calling them shortly.

Zoe's Eco-Friendly Birthday Bash!

For Zoe's 8th birthday this year she wanted to do an environmentally friendly party! Lately she has become very Earth conscious and has been asking me about everything "green". I'm so excited and proud that my big girl has great values and ideals when it comes to nature and sustaining our planet!

One very "green" chic! Oh yeah, Zoe got her hair cut for her birthday too! She almost had enough to donate! She was shy by one inch! Oh well, maybe next time!

Ok, this is literally the best shot that I got of all 3 of my beauties this Saturday... Hmmm.... looks like we need to practice our photo shoots a bit more! Sonya is watching Elmo on TV, Akela is looking God knows where and Zoe is completely irritated that I have already begun with the picture taking, not to mention she has a pole coming out of her head!

Akela being cute, but my camera is totally on the wrong setting and the lighting is bad!

"Sonya bean" being too cute!

I love this picture of her!

Zoe's Earth cake that mommy made. It's actually not cake, but 2 layers of homemade brownies topped with french vanilla frosting (dyed with food coloring).


I think Zoe got a slice of Africa.

The cake was for our family party 11am-2pm and then I made homemade brownie cupcakes for the kids party 2:30pm-5pm. I used silicone bake cups to keep with the "green theme".

So, Ian and I totally splurged and got her a Nintendo DS Lite with 2 games and carrying case. She was soooooo happy about this! The only thing "green" about this is it's color and the amount of green I had to drop to get it! Here is Zoe playing (totally addicted to video games already) and her sister Akela and cousin Camille checking it out on the sidelines.


Zoe also loves everything having to do with cats! She is completely obsessed! Other than all the cat stuff that she received she also got a beautiful locket with her initial "Z" on the front, some really cool magic tricks and a pretty bird feeder, American Girl Doll outfits, a savings bond and build a bear clothes, a sequins purse, Pokemon cards, lip gloss, nail polish, eye glitter, a dry erase board and picture frame, $ and a cute ballerina bear! Here is a picture of Sonya enjoying some of those cute cats! Shh! Don't tell Zoe, but I'm totally letting Sonya play with these while she is in school!

Here is Zoe with the book "Just Grace Goes Green"

Little miss Sonya hanging out with my sister Meghan, Aunt Mae Mae.


For the kid party part of the day, we kicked it off by making jar lid photo magnets (paint a jar lid, cut photo to fit and glue it inside then hot glue a magnet on the back). We then made bookmarks out of cereal boxes, each kid picked out their favorite box (I've been saving for months). The next project was to plant crocus bulbs inside origami paper pots (biodegradable) and I sent them all outside with Ian to do so, so that I could sew up their t-shirts that they brought with for crafting into tote bags! Inside their tote bags I also placed the fun snack bags that I made out of potato chip bags! Here is Zoe all proud of her beautiful planting project!

What September "green theme" party wouldn't be complete without some bobbing for granny smith apples?! The only downside is that because it is apple season here in Pennsylvania, those suckers are huge, pretty much too huge for little 8 year old mouths to grasp! All of the kids were happy to try and then take one of the apples to snack on while swinging on our swing set out back.

Zoe giving it her best shot!

After the bobbing I had all the kids pick out some "green theme" iron on patches and buttons for their t-shirt totes and I put them on. I then had them help fill a ice stick tray (the kind for water bottles) with broken junked up old crayons that everyone had brought and that had been peeled of their papers. We sorted the colors and then melted them down in my oven into new whole crayons! Each kiddo got to take home 2 new pretty crayons! Then came the really fun part! I saved up wide mouthed vitamin water bottles, cleaned and dried them out really good prior to the party. I gave each of the kids a bottle and had them promise me and Zoe that they would recycle the bottle after they finished what was inside. They promised us but looked very puzzled. "But Mrs. Swartley, there isn't anything in the bottles?!" That's when I picked up the huge shopping bag full of a variety of candy and dumped the whole thing on the kitchen table and told them they had 2 minutes to pack their bottles as full as they could get them! They went NUTS! I wish I captured more pictures of all the excitement, but I really had my hands full with this wild bunch! P.S. That is Zoe's unofficial boyfriend sitting next to her. She won't admit it, but they are just too cute together! Happy 8th Birthday Zoe! I love you soooo much!


Side Note : This is what Sonya thinks about her activity table....

What a goof!

Stay tuned for Sonya's Big Girl Bed post coming soon!

Watch This!

Growing Up Tiny : Kenadie's Story on TLC Sunday the 13th at 8pm Eastern Standard Time. I saw Dr. Bober (Sonya's doctor) in the commercial preview for this! I didn't know that he see's Kenadie! Anyways, watch it! Kenadie is such a sweet and inspiring little girl!

Holy Posts Batman!

Yep, I've gone type crazy! There are 3 new posts! Standing Again! , NEW BLOG ALERT, and Back To School Rules! and just in case you missed it.... 2nd PAM and Hell at the Hospital. Thanks for checking them out! Sorry for blog overload!

Standing Again!

Yes, that's right! Sonya has started to pull up to a stand again! It's been just over 13 weeks since she fractured her femur and 6 weeks since she had her spica cast removed and she is starting to pull up on low to the ground sturdy items. Her favorite spots are at our family room end tables and she is starting to show interest in our staircase! Oh no! As nervous and worried as I am about her bearing weight again on those tiny bowed legs I am so excited for her accomplishing this milestone again! Setbacks are a pain... literally... but she isn't letting them get the best of her! Here are a few pictures of her trying to get up and onto the shelf of our one end table... she's successful every time!

"Hmmm... let me just crawl over here..."

"I'm going to give mommy a few more gray hairs now!"

"Here I go!"

"Look what I can do mommy!"


"It's a tight fit in here! Do you think you'll be able to wiggle me back out?"

"So this is what it feels like to be the books that are kept here!"


"Ahhhh! Thanks for getting me out of there mommy! Now I can stretch my legs!"

NEW BLOG ALERT!

Hi everyone!

This is probably really crazy of me, as if I didn't already have enough on my plate, but I'm giving it a try anyways! I just started a new blog for all of my craftiness! Testing 123 is where I will be posting all the crafty stuff I make during my "down time" when I am not completely consumed with my 3 cute kids! I'll definitely give credit where it is due and show appropriate linky love and if it is one of my own original creations I will give some tutorials along with some of the fun crafts! Also on the new blog I have a list of all the fun places you can go to get free bloggy stuff such as backgrounds and headers! I am always up for suggestions so please leave some sweet comments! Hopefully this is something that I will be able to keep up with, and maybe it will force me to make more time to be awesomely creative... I've been in a creative rut for about a month now and I need to snap out of it! So please become a follower today (click here) and be my motivation!!!

Thanks all!

Back To School Rules

Our first back to school days went great! Actually, we only had one technical back to school girl and that was Zoe! She started 2nd grade this year! Geez, having her growing up on me is going faster than I ever imagined. Akela had an excellent very first day of Pre-K! Both of the girls are very excited about learning new things and making new friends this year! Zoe was happy to find out that a few of her classmates from last year were in her class this year too and Akela said she made new friends but can't remember their names. Ahhh and so it begins! I can't wait to see all the cool projects that they come home with and I can't wait to see Akela come out of her shell! She is such a shy girl! Zoe was only bummed about one thing... her teacher sent her home with homework on the first day! Oh, Zoe there will be many more years of the same like. I hope she gets used to it!

Me? You ask? Well I am enjoying one on one time with Sonya and I just can't wait for Fall to arrive! Apple picking, leaves changing colors, pumpkin patches, roasting pumpkin seeds and nuts, hay rides, jumping in huge piles of raked up fallen leaves, Halloween, steam rising from my coffee as I take Akela to school and walk Zoe to the bus stop on brisk and crisp mornings, the smell of burning leaves and smoke sifting up through chimneys, mums in pots at my doorstep, birds uprooting from our gutter and leaving their nests, bugs dying, no more weed pulling in the garden, football season, Thanksgiving Day feasts.... I could go on forever! There are just so many reasons why I love Fall!

All set and ready to board the bus!


We have 6 different buses that circle through our development within the time span of 10 minutes and the kids at our bus stop are shipped off to 4 different elementary schools! I'm so glad I remembered to look at her papers with her bus information and number! Hopefully we will never ever get confused! I do not understand this new busing system that is supposed to save money in the schools transportation budget whatsoever!

Zoe is looking a little worried getting on, but....

there she goes, she was fine!


Akela was very excited as we pulled up to her very first school!

They have a pull up and drop off your kids system where the teachers escort the children into the school and they have them line up in the cafeteria with an aide. When all the children for Pre-K are present, the teacher walks her group to their classroom.


Akela "being back to school cool!"

Akela's escort on her first day was her principal!


In she goes, no separation anxiety in sight!!!!

Happy back to school everyone!

2nd PAM Hard Stick And Hell At The Hostpital!

Well, it has been a very stressful past 3 days! Sonya had her Pamidronate (PAM) treatments Wednesday, Thursday and Friday of this week and it was not smooth sailing the first day. We got to her appointment on time despite the wicked traffic on I95 due to some idiot who crashed his Lexis into the center concrete median strip. He passed me about 25 minutes before his fancy shmancy, weaving in and out of traffic, 100 and some odd # mph driving car kissed the concrete... luckily no one else was involved.

Ok, so we arrived at 1 pm (her appointment time) and then proceeded to wait 30 minutes before being taken back into the day medicine unit for treatment because they only had one receptionist on duty checking everyone in! Great 30 minute delay.... When we did get in and settled the nurses were already set to place her IV, so I thought that's good there will be no wait for the medicine to arrive like there usually is. All the usual preparations were taken before an IV attempt was ever made. We had applied Elma cream (lidocaine, numbing cream) to all possible insertion sites and wrapped her hands and feet in double layer socks for warmth (to plump up the veins) and she drank like a fish, water and juice that is, to ensure excellent hydration further more making her veins nice and ample. Sonya's first treatment was a breeze 8 weeks ago and they managed to place her IV with the first stick. We were not so lucky this time! The first nurse tried to place the IV and after 30 minutes blew out one of Sonya's veins! There was blood spurting everywhere! Her arm, my arm, my jeans and t-shirt, her whole outfit, the bed sheets, the floor, even the chair next to us were all covered in red. I, of course, freaked out and started screaming "What's happening? is that normal? Oh my God!" I have never seen a vein blow out before and had no idea that so much blood would be spilled. I was assured by the nurse that this sometimes happens when a vein blows out which is also an occasional occurrence.

After a 5 minute break for Sonya and some cuddle time with mommy to calm her down the second nurse gave it her best shot and after another 30 minutes she had blown the second vein! More blood.... Sonya was so upset, crying, screaming, sweating profusely and had started to hyperventilate.

Another 5 minute break, more cuddling and then the third nurse gave it her all and blew out the third vein! More blood, and I am about to cry! I started practically screaming "Why does this keep happening? Can I get someone with major experience? Like from the ER?"

So we took a ten minute break and Sonya was almost asleep from all the trauma when the emergency IV team came up to the day medicine unit. 30 minutes pass again and the first stick didn't work. I was pleading with God at this point for them to just get it placed so that she could receive her treatment and for the whole ordeal to just be over! I had lost all sense of time and the emergency IV tech said to me "I don't know what you want to do.... I mean I can't have her being stuck so many times... If this next stick doesn't work, we are done." Sonya's day nurse then said "There's also the time factor here... it's almost 4pm."Oh my God, I couldn't believe that for almost 2 and a half hours they have been trying like heck to place Sonya's IV! I was so engrossed in Sonya and trying to soothe her, I didn't even realize how much time had lapsed. I knew it was taking forever, but I didn't realize it was that long!!! It wasn't that they couldn't get the needle in her vein, they did every time, but they couldn't get the blood flowing.

Prayers said and fingers crossed, the emergency IV tech tried again and after 10 minutes with the IV inserted she coaxed the blood out with rubbing her arm. Sonya was still crying, but she was so exhausted that she started falling asleep in between her screams. Her IV was placed just before 4pm, it was taped down and secured with wraps and her medicine was hooked up. She slept for 2 hours straight (not typical of Sonya at all, she has been done with naps for a few months now).

When Miss Sonya Sunshine awoke she was happy as ever! It was as if she forgot about the whole mess! She was very forgiving with all of the nurses and smiled and waved to each and everyone that went by as she played with her tea set and picnic basket. Our doctor had come back to see us and he had no answer for why this whole ordeal took place. The IV tech even said that she had no idea why her blood wouldn't flow. It was then suggested that if this were to occur the next time we come in for treatment (in 8 weeks) then we would have two options, a port or no PAM. I am really hoping and praying that this was just an absolutely crazy fluke and that I will not be faced with this decision! Getting a port would mean another surgery for Sonya and I don't like the idea of the central line to the heart... it scares me! On the other hand, I do NOT want my baby to NOT receive the treatment she NEEDS to improve her quality of life and preserve what little bone strength she now has. Please pray for us that this will not continue to be an issue!

The rest of the day went well and we were done at about 7:30pm. Sonya slept the whole way home (an hour and 15 minutes) and then went straight to bed without so much as a flinch! What a long day!

Day two went super smooth and luckily that IV stayed in it's place and functioned properly! We had visitors too! Rachel and her son Dylan (4 years old OI type 3 severe) came to visit us after his swim therapy. Dylan was so sweet! He didn't want to stay long though and was worried that he was going to be getting his PAM too! We assured him that it was just Sonya's turn and that there were no ouchies in store for him! The two of them sat on Sonya's bed and munched on some yummy Goldfish and pretzels that Rachel and Dylan brought to share! How sweet! I wished I remembered my camera... I totally forgot it at home! Maybe next time! Day three also went well and Sonya was very lucky to have the grandmother "Gammy", my mom come along with! Sonya showed her Gammy how she plays dress up and tea party and how she is very good at naming items in her books and flash cards. We are so glad this week is over! I'll have more soon about this week with the girls back to school pictures and updates, but I think this is long enough for now! Have a great weekend all!

All cleaned up in a new outfit and playing dress up! (That's a yawn, she's still slightly tired.)

Loving the sequins!

Such a princess!

Haha! Those necklaces come all the way down to her crotch!

Playing tea party with mommy and Mr. Kitty puppet operated by mommy's hand.

She even poured some tea for all the nurses that stopped in for checks as well as her doctor and his assistant! What a sweetheart and quite the hostess in her hospital cubicle!