Isabella Rebecca Parker born January 30th, 2009 - 2:55pm 5 lb 7 oz and 18.5 inches (est)
Bella has Osteogenesis Imperfecta Type 3. This brittle bone disease affects less than 50k people in the US which makes it very rare. There are many types of OI, but type 2 and 3 are the most debilitating ones.
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Hello everyone, my name is Isabella Parker and I have OI. I am 2.5 years old now. I have had 25 fractures since birth. My favorite things are dancing, Dora, Elmo, and playing with my brothers. I just got a new wheelchair and I am able to get around now by myself. I am trying to stand now and I am weight bearing on my legs.
I still get my Pamidronate infusions every 8 weeks at Lebonheur they are now one day treatments instead of three days. I also go to Omaha Children's Hospital every year to visit their OI clinic and visit oi specialist. I will be getting rods for my legs soon and hopefully they will allow me to walk.
I understand that alot of people are praying for my me and I want all you you to know how much I appreciate it. Without all of you, I may not have had much of a chance. There is no power greater than prayer.
Watch for updates from them in my journal as things seem to change from day to day.
5 years ago today, Mindy and I made that long trip touncertainty, an event to which our little miracle baby was born. I rememberlooking down and Mindy as we both heard the faint sounds of our little angeltaking her first breaths of air. The joy of hearing a cry from a child that wewere told may not live is unexplainable. And here we are, five years later, andwe still have the privilege of hearing her sweet sounds everyday. Bella hasbeen doing great! Not only is she making efforts to walk on her own, she hasjoined a cheer team and gets to perform with a team at competitions with thehelp of her cousin Catie and Mindy. That performance is absolutely breathtakingand I hope to put it on the web so everyone can enjoy it.
2013 was a fantastic year for little Isabella. Although shehas not grown much, her mental state has surpassed anything you could ever imagined.She started school last fall (which she loves) and her favorite pastime is tosing and dance. In fact, she will sing with almost anyone who will sing withher and she sang a song that was in Bella’s Lights this year as well. Funnything about that was she would only allow herself to be recorded if Tino (Hecreated Bella’s Lights with his father in law) came over and watched her recordthe song. It was sooo cute and the show was a hit.
Bella gets therapy several times a week now which hasbrought her strength to a level that allows her to move about on her own in acustom walker. The walker has a seat to hold her up but she can role it aroundthe house and have some independence. Having that ability has given her a hugeconfidence boost.
As far as fractures, Bella no longer has any major bonefracture due to the rods that we inserted into her 4 leg bones and two upperarm bones. There is still the occasional lower arm fracture as well as ribs andspine pops. But after 5 years of experiencing fracture after fracture, Bella doesn’t pay it too much mind. She will lie around for a few hours and then get back to moving around or she may just say “ouch” and keep on going. Its pretty amazing to be honest, but so is Bella so I guess we shouldn't be surprised.
The biggest change for her last year was the addition of apower chair. After her campaign in early 2013, we ended up with two powerchairs from some very generous donors that saw her on the news. With those, she learned to drive around andmaneuver them about the house. That experience driving those around hasprepared her for her new chair that was delivered a couple months ago. Her newchair lowers to the floor and rises up to counter height. Not to mention thatit was custom fit just for her so it’s tight and confortable. Mindy and I alsobought a minivan so we can transport the chair around and allow her to take herindependence outside the house.
Thanks for all the prayers over the years, it is prayer andsupport that got us to this point.