Pretend you're a pirate..."Arrrg" It's been a while since our last update. A lot has happened. Dex is 7 months old and is the wiggliest baby ever! We love our little baby boy so much and couldn't imagine our lives without him!
We received our genetics results the last day of 2014 and it turns out that Dexter has a genetic craniosynostosis syndrome called Crouzon's Syndrome. Pretty much it just means that other areas of his face and skull may be affected than just the Sagittal Suture. Dexter ended up having both his Sagittal Suture and a small part of both Lambdoid Sutures opened during his surgery in November. At that point the Dr.s also found bone growth that was consistent with Crouzon's (I won't bother you with all the science talk). We are still monitoring his sutures as it is more likely that he will have other sutures fuse early with this syndrome. Dex's eyes, ears, and throat could also be affected so we are monitoring those too. Thankfully, he has a very mild case! One other thing that we would love prayer for with this new diagnosis is that there is a 50% chance that any sibling Dexter may have will also have the syndrome and they may not have such a mild case. Please pray for us to listen to God and what he has planned for our family in the future.
Back to the eyepatches! Dex has had a droopy eyelid since he was born. He didn't even open his left eye for an entire day after he was born. We just went to the eye doctor and they said that the eyelid was droopy enough that he was beginning to not use his left eye. Their worry is that he would not use his left eye and would essentially be blind in that eye. We have an appointment scheduled with an ocular plastic surgeon in March and they will let us know what our options are for surgery on the eyelid, but until then Dexter gets to wear an eyepatch 2 hours a day. The hope is that he will continue to use his left eye, so that his vision will not get worse. I think he looks so cute! He's now my little pirate, Captain Dex!
We received our genetics results the last day of 2014 and it turns out that Dexter has a genetic craniosynostosis syndrome called Crouzon's Syndrome. Pretty much it just means that other areas of his face and skull may be affected than just the Sagittal Suture. Dexter ended up having both his Sagittal Suture and a small part of both Lambdoid Sutures opened during his surgery in November. At that point the Dr.s also found bone growth that was consistent with Crouzon's (I won't bother you with all the science talk). We are still monitoring his sutures as it is more likely that he will have other sutures fuse early with this syndrome. Dex's eyes, ears, and throat could also be affected so we are monitoring those too. Thankfully, he has a very mild case! One other thing that we would love prayer for with this new diagnosis is that there is a 50% chance that any sibling Dexter may have will also have the syndrome and they may not have such a mild case. Please pray for us to listen to God and what he has planned for our family in the future.
Back to the eyepatches! Dex has had a droopy eyelid since he was born. He didn't even open his left eye for an entire day after he was born. We just went to the eye doctor and they said that the eyelid was droopy enough that he was beginning to not use his left eye. Their worry is that he would not use his left eye and would essentially be blind in that eye. We have an appointment scheduled with an ocular plastic surgeon in March and they will let us know what our options are for surgery on the eyelid, but until then Dexter gets to wear an eyepatch 2 hours a day. The hope is that he will continue to use his left eye, so that his vision will not get worse. I think he looks so cute! He's now my little pirate, Captain Dex!
So that's our update! We are currently looking into starting a non-profit organization that will help families with children diagnosed with Crouzon's Syndrome, both financially and emotionally. Last year, on average, 64 children were diagnosed with Crouzon's Syndrome in the US. We want to spread awareness and hopefully help some families like ours out! Any internet search will show you that there isn't much out there for information or support for this syndrome. Please pray for us as we undertake this endeavor!
Lastly, thank you for all your continued prayers and support! We appreciate it more than you know! We are trying to take things one day at a time, enjoy our precious baby, and leave the future to God!
Thank you!
Erika, Eric & Dex
Lastly, thank you for all your continued prayers and support! We appreciate it more than you know! We are trying to take things one day at a time, enjoy our precious baby, and leave the future to God!
Thank you!
Erika, Eric & Dex