Catching Up

No, we didn't fall off the face of the Earth.... We have been pretty busy though! Sonya had her cast adjusted last week, since it was compromising her femur! She now has a pretty festive short leg cast! She has been able to maneuver much better in this! She can now crawl in a better position as well as stand without having the cast dig into her thigh putting unnecessary pressure on her femur! Here she is feeding her monkey some Elmo crackers! Ethan: this monkey has been attatched to Sonya ever since she broke her leg! He's her good buddy now!

We had a wonderful Thanksgiving and spent our night with Ian's family. Great food and wine, good chats and laughs, and smiles all around! The girls loved playing with all of their cousins! I can't believe how much our family has grown in the past few years! We are so thankful to have them all in our lives!

We visited my sister last week also and attempted to get a good photo of all the girls together as well as family portraits for my sister's family. Taylor was a little fussy in the beginning and by the time she was all calmed down, Sonya started her crankiness. We did manage to get this photo, not too bad... although Taylor is crying.... and I managed to get a few family portraits done for Meghan, Shay and Taylor.

Can you believe I went out with all the crazies and did Black Friday shopping for my 3rd year now?! I can't either! Well, I did... I braved Toys'r'us at 12 midnight, waited in line for only 30 minutes to get in, but once I was in it was a quick push and shove fest and all ended with an hour and a half wait in line that actually zig zagged through every one of the isles in the store! It was like Manhattan traffic inside a cramped store, but worse! Then it was on to Target at 4am after a quick coffee stop. I waited in line for 2 hours outside in the freezing cold with a t-shirt and sweater (forgot my coat, grrrr...). Turns out that Target didn't open at 4am, they opened at 5am! @#$%! The stupid Black Friday ad had a typo! Everyone was thoroughly pissed! We all bum rushed the store, people were going absolutely nuts, grabbing big plasma screen TVs, dual portable DVD players, Wii consoles and games...... The electronics department was flooded with desperate shoppers looking for their bulls eyes! However, the big ticket items were actually hid throughout the store in odd locations! DVD players were in infants/toddlers clothing and plasma TVs were in intimate apparel! Wow, what exactly is that implying? "Not now honey, I want to watch the game on our new big screen plasma!" Hahaha! As chaotic and crazy as it sounds, I still had some fun! The bummer of it all this year was that most of the stuff my kids wanted was not on sale! I managed to get a few good deals, but nothing really worth the wait and aggravating drivers out there on the road that day. I didn't get the item of the year that Akela wants. Zhu zhu pets, anybody?! These things are completely stupid, but she really wants one. I have a rain check but there's a good chance that hell will freeze over before they have them in stock before Christmas. Ah, oh well! There's always her January birthday! At least she forgot to ask Santa!

Here are the girls all ready to meet Santa! We were 3rd in line but ended up waiting for a ridiculous 40 minutes to see good ol' St. Nick yesterday because they were having technical difficulties with their cameras and they wouldn't let us use our own nor would they let us just see Santa anyway! FRUSTRATING!!! The girls hung in there though without any significant meltdowns!

The huge tree at the mall! Each of the toy soldiers, drumming bears, dancing dolls, jack in the boxes and ornaments were automated! They all danced in beat with the Christmas tunes that were playing. The tree truely sparkled and delighted all of the kids! This was the only thing that kept Sonya somewhat entertained and sort of calm while we waited!

Completely terrified by the big red jolly dude, Sonya clung to me like tight pantyhose, and that's how I ended up in this photo. Ignore me... and try to see past Sonya's scared stiff face. Yay Santa!

In other news, Sonya has been doing great with her physical therapy appointments! She loves Anne who comes to our house "to play". I'm so glad that she believes that she is strictly playing and not doing any work! Today she was a bit stubborn when we went to go see Sue at CHOP for PT. She didn't want to stand up to put the toys in the bucket. Only a few minutes later she was ready to walk with the pediatric walkers that Sue brought into the room for her to test out! Talk about a quick change of heart! We brought home a gait trainer, a loaner, to see how she does with it this week!

Sonya in the Rifton gait trainer with the center seat and back support. She's pretty angry about the back support in this photo!

Sonya with the center seat support and without the back... a little worried.

"My test drive gait trainer!"

She is a little tired in this photo and was doing a lot of leaning, but she can stand upright fairly well without the seat and back support. She is a little more hesitant about it, but she does ok with lots of encouragement!

She took 3 steps! I'm so excited to see her walking full force with this soon! She walked about 10 plus steps with the seat support at her PT appointment!

"Ok, I'm done! Time to kneel and sit!"

We will be checking into accessible parking as well as a power wheelchair very soon. This will ensure Sonya's independence when she is unable to walk because of a fracture or when she is in too much pain. This will also provide her much needed safety for when she enters preschool (in just a little over a years time) and the kids are running all about and likely to knock her over. It ought to be interesting teaching this very stubborn little girl how to maneuver the chair and not run over the cat!

Ok, better stop now... There's more to come soon, if only I could slow down the frenzy of my insanely busy schedule!

Meeting Taylor!

Since we have all had some nasty colds recently including the Swine Flu, we kept away from the newest member of our family, Taylor. Finally the girls and I are all feeling well with no residual effects from our illnesses, so we went to visit my sister Meghan and her first born sweetie Taylor! The older girls enjoyed meeting their newest cousin! Sonya and I visited once before, so I think she was not as impressed as she was the first time.

All four pretty girls together!

Akela and Zoe with Taylor

Akela : "I can't hold her 'cause she's too heavy"

Taylor making a face at Akela's remark.

Don't touch me "Tater!"

Sonya's thoughts : "Just because you're the newest cutie here, doesn't mean I'm going to let you have all the attention!"

Wow! I can't believe Taylor is going to be one month old already! (Dec. 1st)

On another note, Sonya is doing really good! I'm a little worried about her leg cast not going up high enough. It comes to an end right where she fractured her femur the last time and I worry about too much pressure being put on that area. It's just not safe looking. So, I'm calling her ortho tomorrow to see if we can come in and have it either extended higher or cut down lower below the knee. I'll update soon! Here's my monkey standing up! She has been climbing and all!

Friends and Boo Boo's!

Yesterday we got to meet the Weisser family!!! Jenn, her husband Fred, Ethan and Collin met up with us in Quakertown (our town) at the Chick-fil-a restaurant as they were on their way down from NY to go to duPont for Ethan's annual check up!

We had a great time chatting and getting to know each other a bit better and the kids had an absolute blast playing in the indoor activity equipment. Sonya loved climbing up and chasing the boys through the tubes! Both Ethan and Collin are even cuter in person! Ethan has such a wonderful imagination! He yelled down to me from above, sitting in the car shaped cubicle of the play set "Hey Melissa! I have a flat tire!" He loved it when I pretended to blow up his tires! He has such a great personality and I can see Collin is going to be following in his brother's footsteps too! We all had a fantastic time!

Unfortunately Sonya sustained another boo boo towards the end of our get together. She has really been pressing for her independence and I have been gradually letting go, scared to death about it of course, but I have to let her live it up and learn her limitations.

Sonya decided to go down the twisty slide without me for a change. She gave me a great big scream of a "NO!" as I tried to get her to "Go with mommy!" and she turned around, feet first and took the plunge. Unfortunately, I didn't think to remove her rubber soled shoes before I let her start playing in the play set so on the way down the slide her foot gripped the slide, tripping her up. Her leg twisted up behind her and underneath her bum causing her left tibia and fibula (lower leg bones) to snap and break just above her ankle. For you Eagles fans we call it the "Terrel Owens break".

Thank you sooooo much to Fred!!! Fred was awesome and went out to my car to get Sonya's break kit, brought it in and then helped me by holding Sonya's leg while I splinted it. If you ask me, this is no small feat to hold a child's broken leg after you just ate lunch! Thank you Fred!!!

We said our goodbyes to the Weisser's and headed to the local ER to have Sonya xrayed and to get her splinted with cast material. She broke lower on her leg than I expected. Both bones snapped below her bowing. I could have sworn I felt a break at the bow where she is currently 70 degrees, but the xrays show nothing in that area. After a chat with duPont, we were told to go home with Sonya splinted and make our way over to duPont in the morning. This is typical with this kind of break. Had this been her femur again we would have gone straight to duPont for surgery and heavy pain control (morphine and lorazepam). With this kind of fracture we home medicate with Tylenol with Codeine, Motrin and Diazepam (for the spasms) and we wait for the swelling to go down before casting the following day.

Sonya did ok over the night. She had a few (about 5-6) bad spasms that woke her out of a sound sleep, but it was nothing like her femur break spasms that woke her every 5 minutes the whole night and then continued after surgery for a few days. She seems to get pains about an hour before she is due for meds, but 15 minutes after she receives her meds she is LOOPY! Hopefully we won't have to medicate for too much longer and she will start to feel better!

Sonya is sporting a pretty green long leg cast! Thank God she is not in a spica again! I was really worried about that! We are thinking of painting red and white striped candy canes on it for Christmas! She will be in the cast for 4-6 weeks and we will be following up in 3 weeks to see where she is in the healing process. We have to be really careful with her when she decides she is ready to stand up in her cast because of where the cast comes to an end. Her cast ends where her femur snapped back in June. She will be more susceptible to fracturing that same spot because of the casts edge being right there. If she sits down funny, looses her balance while standing up in the cast and falls or gets her leg cast caught in an awkward position we could be heading back into the hospital with an even worse situation. So guess who is going to be hovering?! I don't expect her to stand up in the casts until she is at least 3-4 weeks into healing. She might not attempt it at all, but she is known as an OI dare devil! Time will tell!

I feel bad that Ethan had to witness the sliding board accident! He really didn't like to go down slides before the accident, now he really isn't going to want to go down! Don't worry Ethan! Sonya is doing good! Well that was our adventure for the past two days! I couldn't think of breaking a leg in any better way! Sonya was having a blast and living it up, just the way she should be living her life!

Here are the pic's! This bunch was on the move constantly, it was tough getting a photo of them all together!

Sonya and Ethan!

Sonya climbing through the tubes!

Sonya chasing cutie Collin!

Three little monkeys!


Coming out of the car shaped part.


Resting for a very brief moment!

Ethan being very cute!

Collin leading the way!

Hanging out in the car! I love Ethan's shirt! That's right Ethan, your mom does rock!

Looking for the slide!

Aha! I got all 3 of them in the picture!

Ethan showed me his special wrist bands to keep him from getting car sick!

What a great time!

Sonya in the ER with the cute monkey the Weisser's gave her! She cuddled with monkey the whole time!

Sonya's 16th and 17th fractures.

Feeling comfortable in her pretty green cast, men's tube sock on the other leg and chillin' on her beanbag! The boxers are a size 4 and huge! I had them from her spica days... I have to find some shorts that fit around the waist now but go over her cast without awkward positioning.... this should be interesting considering the racks are full of winter clothes! I think I'll be altering!

Green for the holidays!

Advent Paper Cake

Check it out over at my crafting blog Testing 123!

Swine, Conferences and Friends

So, our week had a pretty crumby start, but things are much better now! Sonya and I came down with the flu Monday night. I'm 99.9% sure that it was the swine and it was just absolutely awful! Sonya's fever peaked at 101 and was quickly under control with Motrin. Unfortunately for me I was pretty much hallucinating after 6 hours of enduring a fever of 103.5. I just started seeing a bunch of yellow dots over everything, no pink elephants flying around, but still NOT fun! We both had headaches from hell. Sonya held her head continuously and cried "boo boo" frequently, while my head pounded so bad that it hurt to keep my eyes open and I requested that all the lights be kept off in the house even the ones that I couldn't see from my view on the couch. We both barely ate, we had no appetite whatsoever and I tossed my cookies twice. I'm not even going to tell you the other end of it, I'm sure you can imagine the worst ever. We pretty much slept on the couch all day for 3 days straight. Blah!!! The older girls and Ian managed to escape the "on death's door step illness" and Sonya and I started feeling better on Thursday which was perfect timing since I had a parent teacher conference with Zoe's teacher.

Both Zoe and Akela are doing very good in school! Akela is making good friends and is a very good listener and rule follower! I am very proud to report that Zoe is above average in many different aspects of her education! She has been doing a phenomenal job with reading and comprehension and is very thorough in revising her finished work! Zoe is also a great speller! She impressed me just a few weeks ago with "Australia" and "Atlantic Ocean". They are currently learning about different geological formations. I always worry about how my older girls are doing both academically, socially and mentally because I find that I don't spend as much time with them as I do with Sonya. Taking care of a physical special needs child is very time consuming and exhausting to say the least. Hearing how great my girls are doing in school was an immense relief and warm happy moment! It feels great to know that I am still doing good with them too!

Sonya got to meet her new cousin Taylor this week! We planned on having all the girls meet their cousin sooner but darn that SWINE! So when Sonya and I were finally feeling better we went for a visit with my mom. The older girls were spending the weekend with their Nanny (Ian's mom) so we will have to fit in another fun visit real soon so that they can meet Taylor as well! Sonya was quite interested in Taylor at first and helped comb her hair. We switched to just the soft brush though since she was a little rough with the comb. She also liked covering Taylor up with the blanket. That was pretty much it, then Sonya wanted to show off her climbing skills and started monkeying around the couch and then cruised my sisters coffee table. Sorry, no pic's at this time... forgot my camera... Meghan can you send me some?! Here's this pic from last visit though! Taylor is so stinkin' cute! She is wearing one of my girls outfits!

So, the last time I blogged I had mentioned that there was another little girl with OI living just minutes away from us and we were excitedly hoping for contact with her family. I'm happy to say that we met!!!! Sonya has a new friend named Evelyn who just turned 2 years old and also has OI! Evelyn also gets her care at duPont and sees the same doctors that Sonya has. We heard of her through Dr. Bober and his assistant Lauren and just couldn't believe that they were only 10-15 minutes north of us in a town that I visit frequently! Small world (pun intended)! Evelyn is a little more severe with her OI than Sonya, but not by much! She has had 20+ fractures and Sonya has had 15/16 (not sure about her newest possible). Evelyn is just learning to stand and she is in love with Elmo! Hmmmm... does this sound familiar?! Sonya and Evelyn are like twins... two peas in a pod! We had Evelyn, her mom Sandy and her dad Bob over for a visit today and it was just excellent!!!! Sonya and Evelyn played together very nicely and even hugged each other a few times! They passed the soft bouncy ball back and forth, played a bit of dress up, checked out Sonya's flash cards and of course Mr. Potato Head. It is so wonderful that Sonya now has a friend who understands how to play very gentle with her as well as how it feels when there is a break. I hope the two of them become very close good friends! We plan on getting together again real soon! Too bad that we are on different schedules for PAM. It would be awesome for them to sit together during their treatments! Eventually maybe that will work out! Sorry, no pictures of the cuties playing together, I was enjoying the moment too much! Next time!

I do have this series of photos though... Enjoy!

Akela: "No Sonya, this is my castle!"

Sonya: "But, I love you Akela!"

Akela: "Stop loving on me Sonya!!!!"

Sonya: "But, I LOVE YOU SOOOO MUCH Akela!"

Akela: "OOooowwwww! Sonyaaaaa!!!!"

Akela : "Waaaaaaaa!!! Sonya, you made me break my castle!!!!"

Me thinking: Those pictures clearly depict no castle destruction.....

Sonya: "Waaaaaaaa!!!! I don't know why we're screaming, but Waaaaaaa!!!!"

Missing Treatment

Well, it turns out that Sonya will NOT be getting her infusion this week. The last time we went for her PAM infusion it was absolutely awful! As I'm sure you all remember, it took hours to get her IV placed and she had 3 blown out veins along the way. Well, apparently she was overdosed the last time as well and that is why she can not receive an infusion now. Sonya receives a PAM infusion every 8 weeks and receives the 8 week dose. Last visit she was given the 16 week dose, double the amount of what she should have received! I don't know how this all happened and our doctors apologized profusely. As of now Sonya is not showing any ill side effects from this overdose (extra fracturing, reactions) and most likely she will be just fine given that the infusion amounts are measured over a years time... so there is room for correction. We will be going back in 5 weeks for her next infusion and her doctors will modify her dose amount to balance out the yearly dose. Her doctors do not think that she will make it another 8 weeks without another infusion as her bone turnover is faster than that of a 4 year old (who typically receives the 16 week infusion). Her total PAM for the year will be more than what she is supposed to get at this age regardless of the modifications to the amount that she receives at future appointments. This can be troublesome because too much PAM can cause the bones to become hyper dense (more brittle) causing them to break more often, but we don't feel that she has been overdosed to that extent. Sonya will be more vulnerable to fracture during the next 5 weeks however because nobody knows for certain how fast her bone turnover is and how fast the drug will run out of her system. Bummer that all of this happened, because before we found out of her overdose, the IV team placed her IV on the first try, fairly easily and with no complications. Uggghhhh!!!! Well, at least we know that the port surgery isn't as likely to take place just yet!

On top of finding out that the IV issue is not a huge problem right now, two more good things came out of this appointment! I talked to her doctors about not being able to get a hold of our PT recently and they have told me that they would handle it and try to set up an appointment ASAP for us so that Sonya can get her bilateral clam shell braces for her lower legs and her pediatric walker! She has been cruising furniture non-stop and climbing everything in sight! The braces will give her more support on her 70 degree bowed tibias and the walker will get her more interested in walking all about while providing the necessary support! I can't wait to see her in motion! She has also been attempting to stand up in the middle of the room, but so far just keeps falling down.... very scary for me to watch, but at the same time I have to let her go. She'll never fully enjoy life if I hover over her like a crazed, worried, overprotective mom. Then we were told that there is a little girl named Evelyn who is 2 years old and has OI and guess where she lives??? Seriously, 10 minutes away from us!!!! The doctors are going to try to contact her family to see if they would like to have contact with us! Maybe Sonya will have a playmate who understands how to play gently! I'm so excited! I hope it works out!

Here is that picture I promised you all of Sonya content with her pumpkins new look! She thought he was cute with his smile!

In other news.... I became an Aunt again, but for the first time on my side of the family!!!! Taylor Elizabeth Hutton was born on November 1st 2009 at 3:26pm, weighing in at 9 lbs and 9 oz and measuring 22 1/2 inches long!

She is absolutely beautiful and perfect in every way! Congratulations to my sister Meghan and my brother-in-law Shay!!!!!

So sweet!!!!

Coming home!