Diamonds Are A Girls Best Friend!

Well, I finally caved in and got Sonya's ears pierced! She is now officially wearing jewlery! What have I started? Actually she is a late starter on this! My Zoe was pierced when she was only 4 months old and Akela was pierced at 6 months of age. Boy oh boy, did she scream! She cried so hard that she was doing the silent cry at first, you know the one... you're just waiting to hear the high pitched wail as you see her face turn red, mouth drop wide open, a long pause and gasping for air before the real screaming comes. She gave the woman who pierced her the biggest frown with a mad scream and then buried her face into my chest calling "mama". Oh my heart, my aching heart! Ten minutes later she was laughing over her sisters making funny faces at her! All better! Now all I have to do is get her to let me clean them twice a day!

Sonya's Checkup And A Special Meet With The Greene Family!

What a great day it was today! Sonya had a nice visit with Dr. Ain. We got in to see him really quick with barely any waiting time and had her x-rays done. He said that everything looks very good right now with no signs of kyphosis or scoliosis, so good news! We went over her accomplishments of commando crawling and speech and talked about carseats (she's not ready to turn around yet and won't be for awhile) and the whole genetic stuff. Dr. Ain and so do I disagree with our current geneticist about her possible Osteogenesis Imperfecta, SED, or SEMD. He would like us to see him in another 6 months as well as a geneticist at Hopkins, Dr. Julie Hoover-Fong whom works closely with Dr. Ain. We are hoping to get an appointment with both of them on the same day! As always Dr. Ain spent a nice amount of time talking with us and addressing all of our concerns, easing my mind and making Sonya giggle all the while! We are so blessed to have such a great doctor for Sonya!

Sonya was also very happy and excited to meet Simon today! She was completely all smiles about seeing him and so was Simon over seeing her! Sonya of course showed Simon all her tricks, clicking her tongue, patting the table with her hands, clapping her feet with gusto, smiling and babbling, and raspberry blowing non-stop! She just loves to see other babies and Simon seemed to be the object of her affection today! Simon is even cuter in person! He too is all smiles non-stop! What a sweet and handsome little boy! We look forward to many other visits with the Greene family, hopefully some trips to the aquarium, the zoo, the please touch museum, or maybe even the inner harbour. Whatever we choose I'm sure the two of them will be happy just seeing eachother!

Sadly, I forgot yet again to get a picture of Sonya with her doctor for the scrapbook, blog, and baby book. I'll have to remember next time! I did remember to get some pictures of Sonya meeting Simon though, so enjoy!

Campomelic Dysplasia No, Osteogenesis Imperfecta Maybe

Well, today Sonya's DNA test results for her assumed Campomelic Dysplasia came in. Her geneticists were 99% sure that Campomelic Dysplasia (CD) would be her diagnosis. I was sold on the idea as well and had put countless hours into researching it so that I would be prepared and educated on issues to watch out for. Our notions were shattered today with the news that Sonya does not have CD. Since her test results came back negative after 9 long months of waiting for a confirmation, her geneticist now thinks that she may have a type of Osteogenesis Imperfecta (OI). OI was suspected as well as CD during my pregnancy, however upon birth the doctors semmed to push that idea aside and focused on a diagnosis of CD due to the fact that Sonya's x-rays showed no fractures or breaks which is almost always consistent with OI (so I'm told, I now have a ton of new researching to do). We are going to go to Children's Hospital of Philadelphia on November 18th for a new blood withdrawl for a new DNA test to be done. The results from this test prove OI to be present in 85 - 90% of all type 1 collegen cases. The test results will take around 6 weeks to come in. If Sonya does not fall into the type 1 collegen category, there will be several more tests (each taking anywhere from 6 to 8 weeks to process) to pinpoint her type of OI. There are 4 main types and 2 very newly found (2006) types. This whole testing process could take all of 2009 to go through. *Sigh* I would have to assume that if she has OI, she must have a very mild type. Sonya has had no fractures or breaks in her whole 9 months of life and this includes last weeks visit to the ER after a very scary accident. Sonya's older sister Zoe (7 years, AH) thought it would be a good idea to pick up fussy Sonya while mommy (me) was in the kitchen taking dinner out of the oven. Sonya being heavier than what Zoe expected her to be (like a 2 lb baby doll) made it difficult for Zoe to hold on to her and thus Sonya took a nice fall to the carpet covered concrete family room floor. After a thorough check at the ER and no breaks were found a very tired Sonya was ready to go home! Because OI is otherwise known as brittle bone disease and there is almost always broken bones associated with all of the types this dropping incident puzzels me and provokes one of my biggest fears.... undiagnosed and unknown type of dwarfism, which is the only other suspicion Sonya's doctors have. *Sigh* Oh Grrrrr...... I'm definitely experiancing some frustration in it all! I am a planner, a scheduled person. I like knowing everything immediately and hate the waiting game. This is truely going to drive me crazy waiting another year for them to figure her out. I have been so focused on her being 99% sure Campomelic, watching for any issues associated with it to rear their ugly heads and now that she has been confirmed to not have it I am wondering "but what if she has OI, what have we missed?". There may be issues with OI that I should have been handling her different physically, checking in with certain specialists more often or even seeing specialists we have not seen at all. I am one nervous wreck right now! My research begins tonight. I feel the need to wrap my head around this and fully comprehend each type so that I can calm down and regroup. Tomorrow being Saturday, doctors offices will be closed so on Monday I will be calling Dr. Ain, her dwarfism specialist, her pediatrician, her orthopaedic surgeon and her pulmonologist with the update. Today I was surprised with all of this, life is full of little surprises! No matter what kind of dwarfism she has I know one thing for sure..... I love my little girl with all of my heart!

Oh yeah and GO EAGLES!!!!

BoOtAsTiC!!!!!

Happy Halloween everyone! I hope all of you had a goulish time! We sure did! This year Zoe went as a black cat, Akela went as a rat (ratatoulle costume) and Sonya was the wedge of cheese! We all went to my mom's house because our neighborhood is unfortunately full of a bunch of non-celebrating Halloween party poopers! The girls got suited up in their costumes and excitedly dashed out the front door with my husband, sister, sister's friend and me. We had only made it to ten houses and Sonya had fallen asleep in her stroller and Zoe had to use the potty, so Ian took Zoe and Sonya back to mom's. Sonya then stayed and slept till we got back and Ian (hubby) had a really fun time trying to find us in a sea of tricker treaters in the black of night. We stopped at almost every single house out of the 80 that populate my mom's development! One of the houses goes completely all out for Halloween with a very elaborate decorated house every year. Each year the guy that owns the place buys more and more props and sets up a haunted garage. Up until this year Zoe has been too scared to give it a go, but this year she put the brave face on and went for it! We of course went in with her, but to our surprise the killer clowns that jumped out at us had no shock value to her! She in fact stated "That's it?! That's what I've been waiting for all these years?!" LOL! Akela who is no chicken either came along for the tour and simply waved at and said "hi" to all the creepy clowns and the skeleton boy laying in the coffin! Crazy huh?! Anyways, they both ended up with full bags of loot and were totally sugared up by the end of our trail. We all had an excellent time and can't wait to do it again next
year!


The week before Halloween Sonya broke out in a head to toe rash! Red little dots covered every inch of her body. We took her to the pediatrician and they suggested that it looked like Roseola, but could not confirm it because Sonya exhibited no other syptoms of it. She would have had a high grade (up to 105 degrees) fever for about 2 days before breaking out in the rash. She definitely didn't have a fever, she is like my pantyhose, with me all the time! So, I would have noticed a high fever. The rash is clearing up though, and we had Sonya's 9 month checkup on Halloween morning and her doctor was pleased to see she was recovering. Just to clarify for any of you who had contact with Sonya, Roseola is not contagious from human to human. Sonya is now 16.2 lbs and 26 inches long! She grew a bit! We are still nursing and she has been enjoying a few new jarred foods as well. Sonya's preferred method of getting around is her perfected commando crawl! She really moves fast and I am constantly scouring the floor for little bits of fuzz and string that she instantly puts into her mouth! Yuck! I hope you all have a good week! Thank you for checking in!