And The Blogging Life Begins

While I am an avid blog reader I have always told myself I would never start my own. Who would read it? My life is pretty boring. I can only think of one person who MIGHT read my blog and even that person is doubtful. She would just call me. But, here I am starting a blog.

Why, you ask?

That's easy. After getting such big response from my two mass emails I sent out (both can be viewed below) I realized this would be the easiest and most efficient way to keep everyone updated on Isabelle's progress. This will be slightly quicker for me as I won't have to sift through all of the email addresses in my address book finding everyone I need to send it to, and you guys can voluntarily check for updates instead of me forcing them down your email inboxes. I will also be able to upload pictures and videos here for everyone to see at any time (once I figure out how to do that at least). So, congratulations. You all care so much about my girl that you have forced me to join the blogging world.

Ok, for those of you who may not have been with us from the beginning or just haven't always kept in touch let me give you a very short version of the past two years. Isabelle was born August 1st of 2007. She was diagnosed with Larsen's Syndrome which is a connective tissue disorder mainly causing loose joints and joint dislocations. More specifically for Isabelle this caused her to be born with dislocated knees, hips, feet malformations, and an abnormal curve in her cervical spine. Her feet and knees were casted every week for two months after she was born to slowly straighten out her feet and to bend her knees the correct way. At six months old she underwent surgery to finish correcting one of her knees and both feet. She has been in physical therapy since shortly after her surgery and has come a long way. We have now found out that the curve in her spine will now require a surgery that is extremely risky for a child her size and age but, you can read those details in the two previous posts.

Now a little explanation about the name of this blog, "Belli's Place." Up until Isabelle was about three months old she cried, constantly. And I really mean that. Night, day, during meals, any where and everywhere. So I found myself singing this song to her quite a lot, and I am sure most of you have heard it. It goes something like this, "Isabelli, Isabelli, night and day it's Isabelli change the diapers, fix the meals, wash the bottles, do the laundry." Oh wait, you probably don't know that version. But it is very similar to the one you might have heard on Cinderella. I swear that's not where I got it from though =-)

So, the name Belli stuck and it's what I have called her ever since. And while she has grown out of the crying and turned into an unbelievably happy and easy little girl she will still always be my Belli. And this is now her place for all of you to gather to read, pray, and show her your support.

Thank you for joining us on this journey and please continue to keep my sweet girl in your thoughts and prayers.

Surgery Dates, Info

Here is the latest as far as surgery dates and procedures. Isabelle will be admitted to the hospital on July 8th. They will attached the Halo and she will be in traction for at least one week. For those of you who may not know traction basically means they will be stretching her neck to straighten out the curve as much as possible before surgery. She will be in the PICU for this entire time. After that she will go to the operating room to have the major surgery some time between the 15th and 17th. It is likely that the whole surgery will be a two or three day process with the surgeon doing a posterior fusion on the first day then going back a day or two later and doing an anterior fusion. Once both parts are complete she will be in the PICU for at least one night and if everything has gone well she will be able to go to a regular room. She will be there for atleast three more weeks after that. So, those are the dates and details that I know as of now. I will continue to send more emails as I get more details.

On a MUCH happier note we are leaving for the beach tomorrow for a few days. You will be able to reach me by cell phone but if you do not hear from me via email for a while don't panic. We will just be enjoying the sun and water...and the food of course!

And then on an EVEN MORE happy note (and I added this part especially for one specific person who will know who they are) Isabelle is now able to walk up to 10 feet with her walker all on her own! Well, I have to push the walker behind her because she forgets to bring it with her but other than that she does it all by herself.

That's all for now.

Many Prayers Needed

As many of you may know Isabelle has an abnormal curve in her spine. She has routine MRIs every six months in order to monitor the curve to make sure it is not damaging her spinal cord. The only way to fix this type of problem is a spinal fusion. A fusion on a child at her age and size is extremely rare and extremely dangerous. They do not make equipment small enough for children her size so the plan has always been to either wait until she was older or until we no longer had the choice to wait.

Today we went in for an MRI and unfortunately the curve has progressed enough to where putting off the spinal fusion is no longer an option. So far her spinal cord has not sustained any permanent damage but if we wait much longer there is a good chance this will happen. As I mentioned before this type of surgery on a child this young is both rare and extremely dangerous. Best case scenario the surgeon will go in and fuse as few of the vertabrae as possible, she will be in the hospital for a few weeks and then be able to go home. She will be in a Halo for 6-8 weeks. Worse case scenario, quite honestly, are things that I dont even want to think about. And of course there are a myriad of other scenarios between those.

As of now we do not have a date or many other details than what I described above. All I know is that it will be in the next few weeks. Right now I just ask for prayers for my strength, wisdom for the doctors who will be performing this surgery, and as little pain as possible for my sweet girl. Feel free to forward this along to anyone you think may be interested. Thank you in advance for your thoughts and prayers.