Here are the answers to the rest of the questions some of you guys had for Belli and Me.
Julia was very curious and asked a few questions...
1. Will Belli be able to walk without a walker when she gets older? Will she need a wheelchair?
There are no definite answers to these questions because they way Larsen's Syndrome affects people varies greatly. Isabelle will be able to walk without her walker eventually (she is actually pretty close to taking a couple of steps on her own now!). As she gains strength and practices more she should be able to walk on her own both with and without her ankles braces. It may always be easier for her to walk with the braces but she should be able to walk without those too eventually. Whether or not she will need a walker or wheelchair when she gets older really depends on her strength and how much pain she has in her joints. A lot of people with Larsen's have issues with arthritis as they get older so it really all depends on her and her body. So we will see!
2. How many more surgeries do you think Belli will have to have?
Again, another question with no definite answer! As of right now there is nothing else that needs to be corrected so if it stays that way then none. Unfortunately this is not likely to happen. I'm not being pessimistic just honest. Her hips are still out of socket and we have chosen to keep them that way but if at any point her ortho decides it would be better to put them in she will have to have that surgery done. Because of her hip dislocation her left leg is a little bit shorter than her right leg, If we never put her hips back in the socket then when she is older and finished growing I will allow her to make the choice of whether she want to have a bone lengthening surgery or continue to wear a lift in her shoe. So far her spine is still looking good (knock on wood) and we are hopeful she will not have to have another surgery anytime soon. However, even if it does continue to stay aligned she will have to have her current fusion "touched up" for a lack of a better phrase when she is an adult. After a while the fusion will start to break down and will need to be fixed. There is also a risk for scoliosis but as of right now it does not seem to be a problem. So again, I guess we will just have to see.
3. Is Larsen's something that can be cured with surgery? Meaning she will still have it but she will be able to function normally after all the muscle and skeletal issues are fixed.
No. Larsen's is a genetic disorder that cannot be cured. You can have surgeries and therapy to help fix the problems but it cannot be cured. Even the surgeries are not always a perfect fix and she will always have loose joints.
4. How did you become such a big Alabama fan?
My mom and uncle both went to Alabama and my dad grew up as an Alabama fan so my sister, cousins, and I all grew up knowing no other way of life. It was something that was ingrained in us from the beginning.
5. Tell the stories of Belli's birth. I know Larsen's was a surprise to you when she was born so I was just curious how it all went down. (Jody B also wanted to know the answer to this question).
Well the Larsen's was not a complete surprise but I didn't not know tht she had Larsen's before she was born. Let me explain. When my ex-husband and I went for the 20 week ultrasound to find out the sex of the baby they also saw that she had clubbed feet and it looked like one of her hips was turned a weird way. The clubbed feet was not a complete surprise since my ex-husband and other members of his family had clubbed feet but because of her hip they told us to come back in a few weeks for another ultrasound to see if they could get a better look. So I went back a few weeks later and that's when they told me the news. Not only were Belli's feet clubbed but her hips looked like they were dislocated and her knees were bent the wrong way. I was devastated to say the least. My doctor set up an appointment at a different hospital to get a 3D ultrasound for a month later. We went to that appointment and after 45 minutes of taking about a billion pictures and them looking from every angle they could get to we were told there was nothing wrong other that the clubbed feet. So who are you going to believe? The ultrasound technician with a regular old ultrasound or a specialist with a 3D ultrasound. We chose the specialist. At this time I was still living in Mobile and I moved back to Birmingham a few weeks later. I had an ultrasound done here every couple of weeks just to check on the baby and no one here saw anything wrong either. She was breech and she stayed that way the whole pregnancy. I scheduled a c-section for a week before her due date. When they took Belli out she was not breathing. Her first APGAR score was 1. She bounced back quickly though and her second APGAR score was 9. They brought her over to me and I asked to see her feet. The nurses (or whoever they were) just sort of looked at each other and I knew at that moment that the original ultrasound was right. They called an orthopedist in the next day and that's when he told me she likely had Larsen's Syndrome. So that's my birth story!
Wow! Ok, since I got so long winded and you guys probably have better things to do than continue reading my answers to your questions I'm going to call it quits for now. Part 3 will be posted sometime this week so if I still haven't answered your question yet please come back. I promise I will get to it!