Sonya's Hermit Crab Crawl

The following blog post explains why this is not a good thing. Hopefully we can get her back on track soon!

Physical Therapy Evaluation

Sonya had her second OI physical therapy evaluation on Friday. As of now she is 19 and a half months old, 5 weeks post spica cast removal for a femur fracture and sitting up unaided as well as crawling. She doesn't crawl all the time however. After a short distance crawling on her knees (like 4 knee steps) she reverts back to her pre-fracture move that we call the hermit crab crawl/ scoot. This asymmetrical scoot is putting intense and immense pressure and weight on her previously broken femur and her OI therapist doesn't like it one bit! Sonya still has yet to attempt to stand up again and has even figured out how to get around the idea completely. The therapist tempted her with exciting toys stacked up on top of a short table as Sonya sat in a supportive chair set close to the table. The table was at the perfect height for Sonya to put her hands on and push up into a stand. What did Sonya do to get her desired toys you ask? Well, she shook the table until they fell down into her lap of course! She's just too smart for her own good.... We are now at the point where Sonya needs physical therapy weekly plus more water therapy. We will be getting Early Intervention to come and evaluate Sonya so that we can start receiving care through them. Now that our outdoor community pool is getting ready to close for the season we will also be getting a membership through the YMCA so we can go swimming (water therapy) daily.

I found out just how bad Sonya's femurs are looking today... Our OI therapist said that she looked over her x-rays to see what issues she would be looking for in Sonya before we came to visit. Her femurs are worse than the 90 degree angles that they were at before the femur fracture. They are just fractures waiting to happen and most likely will when she starts bearing weight on those little legs again. So, the topic of rodding surgery came up. I asked the therapist what she thought and she told me to seek a second opinion out and she confirmed my suspicions of our current orthopaedic surgeon being old fashioned and set in his ways about not rodding until the age of 3 years. Now I know why he didn't even want to discuss rodding with me and why he didn't show me her x-rays to discuss her degrees of bowing. This actually really infuriates me! I mean really, tell me the situation at least so that I can make the best decisions and seek out a second opinion and proper care for my daughter, even if you are against what early treatment she may really need. We have already started filling out the new patient papers for Kennedy Krieger Institute in Maryland where OI specialist Dr. Shapiro does rods on the younger OI kids. Hopefully I will be able to get Sonya in really soon for that second opinion! I also learned that if she does get rods inserted for support (splinting from the inside), that we should try to go for titanium instead of steel. With Sonya at high risk for scoliosis and kyphosis (already started) she may need MRI(s) in the future. Steel rods can interfere with the MRI machine and give inaccurate readings where titanium would not cause such problems. I'll be reading into this further of course for pros and con's as well as getting Dr. Shapiro's opinion.

So, this upcoming week is going to be super busy! This Saturday we are headed to my sister's new house for a house warming party, Sunday we are having her baby shower for her baby girl due in October, Monday is Zoe's first day of school and I have a parent teacher orientation to go to for Akela, Tuesday Akela has a meet and greet with her teacher, Wednesday is Akela's first day of school and Sonya's PAM treatment day, Thursday Sonya goes in for more PAM as well as Friday! Yep, one busy week! Geez, I'll have a ton to blog about! Hope you are all doing great! Hugs!

I posted a video above this post on Sonya's hermit crab crawl for a visual. It's from awhile back when she broke her arm but the style is still the same today. Please excuse Akela's brief butt crack exposure... That girl needs some hips! Enjoy!

Two More Fractures and Some Worrying....

Hi everybody!

So, we went to Sonya's orthopaedic surgeon at AI duPont today for a 3 week post spica cast removal checkup and Sonya tacked on 2 more fractures to the break tally.

Two days ago while Sonya was cruising the family room floor and playing with her sisters she pulled open the bottom drawer of our end table, stuck her hands on the edge of the drawer and slammed it shut on herself. The result... a left broken index finger. Only at the time it didn't look broken nor did she mind me touching it after she finally calmed down after her 20 minutes of crying, so I figured it was ok. Well, upon arrival at her ortho's I noticed it was much larger (swollen) than her other index finger. Her ortho confirmed that it had broke. She has been using it and bending it so they are not doing anything for it, and there really isn't much that they could do anyway (there are no such things as finger casts and there's no way she would keep a finger splint on!). So then we go to leave and as I am placing her into her car seat she shrieks out in pain and starts "the cry"! I opened the hatch to the van and laid her flat in the back to assess what happened. Both legs were kicking *sigh of relief*,right arm flailing, and left arm limp. Uggghh! We went back into the hospital, straight back to the casting room where Sonya's ortho was and got right back in to see him. By this point Sonya stopped crying "the cry" and was just mostly whimpering. Then she miraculously starts using her arm again! What?! After a quick check over her ortho decided it was most likely a micro fracture in her left scapula. Again, not much can be done, other than pain meds, keeping an eye on it and babying it. She's been using her arm still, but has not gone back to crawling at home.

So, now for the reason we went to the hospital in the first place.... to check up on her femur. It is looking good, had xrays done and it is healing nicely. Dr. Kruse is currently not interested in rodding surgery for Sonya, so I will be seeking a second opinion at Dr. Shapiro's office at The Kennedy Krieger Institute next to Hopkins, as I feel that the time is near for rods. Now for my other concern... she has been going back to the butt scoot move that she was using just prior to the fracture of her femur. She puts tremendous pressure on it by tucking her previously broken leg under herself and then using the other leg to maneuver around as she is in a sitting position. This most certainly is causing her femur to bow more and I'm sure that she will be headed for another break if it continues. I feel like a nervous cat watching her move about like this. Sonya's ortho, Dr. Kruse, wants us to give physical therapy a call and have her start some gait training.

On a lighter note, this Friday I will be taking Sonya with me to her pediatricians office where there will be two med students in training. I have told my pediatrician that whenever she has students who want to learn about OI, that I would love to share Sonya's case to help educate and promote awareness of this type of dwarfism. This will be the 4th time that I have had the honor to discuss OI with soon to be medical professionals! I'm excited to get to teach this as a part of these students pediatric studies. Under average circumstances they would have maybe read a short paragraph on it in their textbooks and that is if they didn't just skip over it because of it's rarity. While it is most likely that Sonya will be the only case of OI that these students see in their lifetime, who knows for sure. Hopefully, if she isn't the last case of OI that they see, they will certainly think twice and have the knowledge of brittle bones disease before suspecting abuse on the next OI child that comes their way. I'm so happy that I have this chance to make a difference!

Well, that is the update for now. I will have more news soon since tomorrow is appointment making day! Have a great week everyone! Oh and here's a beach photo I managed to miss!

And The Winners Are...

Jennifer, Jenny and Sara !

Yay! I am so excited to create for you all! I have something already in mind that will be perfect for each of you gal's kids! I bet they will be super handy, but oops! Maybe I have said too much! I want it to be a surprise! So ladies, I just need you to send me your mailing addresses so that I can ship your gift to you! You can send it to my email at is251@comcast.net and I will be sure to mail them out as soon as I have them made! Remember to do your part and re-post the Pay It Forward Challenge! Happy Crafting!!!

Pay It Forward!

OK, so it took me a long while to post this.... but here it is finally!!!!

I was one of the first 3 lucky commenter's on Jenn's blog for this fun Pay it Forward challenge, and I'm so excited to get one of her creations! I consider myself to be pretty crafty, I did spend all of my college days focused on all the different aspects of the arts. I've done it all, painting, drawing, ceramics (not just the painting but the making of the clay forms), glass blowing, stained glass, jewelry making, paper making, printmaking, multi media sculpture, wood carving, metal working, photography, not to mention all those crazy art history classes and drawing anatomy classes! Those anatomy classes have really come in handy recently with Sonya's Osteogenesis Imperfecta diagnosis! I have kept up with crafting and since college I have learned how to sew, quilt, scrapbook, and oh yeah, decorate a home! Although I have very little time to create I find beautiful inspiration every where everyday! This challenge will be so much fun for me to dive into and I am very excited to give my hands the pleasure of getting artsy again!

So here's how it works:

Pay It Forward

1. Be one of the first THREE BLOGGERS to leave a comment on this post, which then entitles you to a handmade item from me.

2. Winners must post this challenge on their own blog, meaning that you will Pay It Forward, creating a handmade gift -anything!- for the first THREE BLOGGERS who leave a comment on YOUR post about this giveaway!

3. The gift that you send to your 3 friends can be from any price range and you have 365 days to make/ship your item. This means you should be willing to maintain your blog at least until you receive your gift and have shipped your gifts. And, remember: It’s the Spirit and the Thought That Count!

4. When you receive your gift, please feel free to blog about it, sharing appropriate linky love! If you are not one of the top three commenter's on this post, you can still play along. Go ahead and start your own Pay It Forward chain, and encourage your blogging friends to do the same!

SO, REMEMBER...Pay it forward! Please don't sit there and think "well, I'd like to do this, but I'm just not very crafty...." Anything homemade is awesome, no matter how big/small, easy/hard it is! So please...just have fun with this! :)

Happy Crafting!

Simon Came Over To Play!!!!

The Greene family came by for a visit at our house on Sunday the 9th! Since Jenn, Jason and Simon were vacationing in our area we thought it would be perfect to have them over for lunch and some hang out time! Simon was super cute as always and made himself right at home! Sonya shared some of her toys with Simon, but mostly he enjoyed the giant beach ball! Too funny! I don't have any pictures of him with the beach ball, but head on over to Simon's Blog and there will be some posted there! Sonya is quite the monkey and loves to turn her head at just the right moment while I am taking her picture, so sorry for the back of the head shots!

Simon even got a chance to check out our cat Lucy!


"Check out my cool chair Simon!"


As you can see our little cuties don't quite like being restrained for picture time. Haha!


I think this is the best shot that Ian managed to get with our little wiggle worms!

"Simon, I don't want you to leave!"


"It's ok Sonya we'll see each other again soon!"

Sonya has been asking for Simon "Mymon" ever since the Greene's left for home! We will have to plan a trip to Annapolis soon to visit Jenn, Jason, Simon and Simon's baby sister/brother who will be arriving soon! We had a great time with you Jenn, Jason and Simon! Thank you so much for coming over to visit!

Brigantine Beach 2009

We had an absolute blast in Brigantine NJ this past week! We love returning to the same "pink" house every year and relaxing for a whole week at the beach! I managed to snap a few pretty pictures to replace last years pictures that adorn our family room wall. Comparing the pic's from last year of the kids to this year's pic's was interesting! Zoe and Akela haven't changed too much and Sonya has stayed the same size but her face has totally matured!

This is the best shot of the 3 of them! It's almost impossible to get all 3 of them to look at the camera at the same time and smile!

I love this picture of Sonya looking up!

I tried to get a few shots down on the dunes... this was the best shot of the 3 of them there!

Mommy and Sonya.
Daddy and Sonya.

Zoe hasn't been too keen on her photo being taken lately. She has been turning her head whenever I come around with the camera. "Don't you have enough photo's of me already?", she asks and I reply "never!" Ahhh... and so it begins...


We had some great beach weather minus the 2 rainy and overcast days. We made sure to get out there on the nice days and enjoy the surf! Seriously, I know I'm a bit biased but isn't she too darn cute?!

Yep, they have matching swimsuits too! They actually have another set of matching swimsuits from my grandmother too! Geez, what stylish gals I have!

Sonya took naps on the beach each day! She never naps while at home! I guess the ocean sound, the nice breeze and the promise of cuddling with her mommy just won her over!

"Ahhhhh! Don't put me directly on the sand without a beach blanket! What were you thinking?!"


No trip is complete without a trip to the boardwalk to have fun on the rides, eat some yummy Mack and Manco's pizza and do some shopping! The girls were completely paranoid about the seagulls stealing their food after they witnessed a particularly gutsy seagull steal a whole slice of pizza from a guy standing by us, turning the whole section of the boardwalk into a crazed seagull feeding frenzy! Not to mention the poop that is pretty much inevitable. But alas, none of us had been pooped on or had our food stolen. It was a different story the year that I was pregnant with Sonya, 2 times I was pooped on! Some people say it's good luck, I say "EWWWW GROSS!!!"

Cousin's Pernalyn, Nicole and Garrett came along too! I think Garrett wanted to climb on in with Sonya! Seeing this photo, I realize that Sonya really needs a stroller that fits her better! She looks like she is totally struggling! For all of you who are probably wondering, Garrett is 13 months old and Sonya is 18 months old. Garrett is a big boy though, just like my Zoe was and still is in the 95th percentile. Quite a difference since Sonya is in the 3rd percentile! Nicole, you are going to have one tall and handsome boy on your hands that the girls are going to go wild over! It's too cute seeing these two monkeys together! Sonya is so lucky to have cousins that are close in age with her!


You should have seen some of the looks that I got when people saw my "baby" eating a huge lolly pop instead of drinking a bottle! "Com'mon people, what? A lolly pop isn't a good substitute for a bottle?" I didn't even bother with the stares and hushed comments.

Sonya was so happy that she got to go on a ride for the first time! She rode the carousel and loved it!!!!

I look like I have a giant ferris wheel coming out of my head, but I loved the shot of me with Akela and Sonya as we waited for Zoe and daddy to get off of the big crazy hang gliders!

It was a bit tough this year as far as the rides go. Zoe got told for the first time that she was too big to go on one of the kiddie rides and I could tell that Sonya felt a bit left out that she couldn't go on anything except for the carousel. Akela felt lonely when Zoe couldn't ride with her and Zoe wished Akela could go on the bigger rides with her. So there's not too many super happy faces in our boardwalk photos this year and I think we may have to work out something different next year. I didn't like seeing Sonya feeling like she was left out on all the fun.

We went to the Marine Mammal Stranding Center on one of the overcast days to see if they were nursing any sea critters back to good health before they were released into the ocean. They had a sea turtle but he was not up for having any visitors. We did learn that a very special seal was just released into the ocean 2 weeks ago after Ian's mom, Aunt Patty, cousins Cindy and Wendy found her on the beach back on May 3rd! Cindy named her "Beached Girl". Here we are in front of the Marine Mammal Stranding Center next to a huge anchor.

What do you get when you take away from Sonya the empty cup of blue raspberry water ice that she completely devoured?...............

.............One really sour puss!

We love Aunt B's ice cream and water ice shop down the street from our "pink" house. Looks like Sonya wanted some more! Hahaha! Thanks for checking in! To all of my blogging buddies, I promise I will catch up on all the updates that I missed while on vaca! I also have about 300 some emails to still sift through. Boy, I need a lap top!