I think I neglected to make clear in my earlier posts that the treatment for Lucy's condition is definitely surgery.
Sagittal synostosis is a birth defect. On some babies you can notice right away at birth. On others it takes a little bit of head growth before it becomes noticeable. As I mentioned earlier, I always noticed her oblong head shape (when looking at the profile view) but never knew it was a medical issue so I never brought it up at any of her well child visits.
Her condition becomes even more obvious when you feel the top of her head compared to other babies that are under a year in age. The top of her skull is as hard as an adult's. You can barely detect the remnants of her soft spot.
So far our doctors have told us that Lucy's condition is not common but it's not unheard of either. Our pediatrician has seen three or four other cases in her 20 plus years as a practitioner. Her most recent case is now a teenager.
At this point we know that surgery entails removing part of the bone on the top of her skull to allow room for her brain to grow. As her brain grows it will reshape her head making it more round.
We don't know how common the surgery is. We also don't know how long, how many or where the incisions will be. From what I gather it all depends on the age the baby and how significant the premature fusion has been.
Some Internet stories that I have read put the post-op recovery time at three or four days in the pediatric ICU. Most say that there is quite of a bit of noticeable pain in the first two days following surgery. This scares me. A lot. But everyone goes on to say how quickly their child bounced back to their old self on days three and four.
Some patients need to be fitted for a CranioCap following surgery. We are not certain yet what Lucy's game plan will include.
I hope I answered most of your questions. A lot of the specifics are still unknown to us as well.
I want to thank everyone for their support. My inbox was flooded soon after I sent out the initial email. Many of them included offers to watch our not-to-be-forgotten son, William. As appointment dates approach I will definitely look in to taking you up on those offers.
Most of all, thank you all for your prayers. We know from previous experience it's truly the only thing that will make all of this bearable. That and maybe a few beers thrown in for good measure.
Sagittal synostosis is a birth defect. On some babies you can notice right away at birth. On others it takes a little bit of head growth before it becomes noticeable. As I mentioned earlier, I always noticed her oblong head shape (when looking at the profile view) but never knew it was a medical issue so I never brought it up at any of her well child visits.
Her condition becomes even more obvious when you feel the top of her head compared to other babies that are under a year in age. The top of her skull is as hard as an adult's. You can barely detect the remnants of her soft spot.
So far our doctors have told us that Lucy's condition is not common but it's not unheard of either. Our pediatrician has seen three or four other cases in her 20 plus years as a practitioner. Her most recent case is now a teenager.
At this point we know that surgery entails removing part of the bone on the top of her skull to allow room for her brain to grow. As her brain grows it will reshape her head making it more round.
We don't know how common the surgery is. We also don't know how long, how many or where the incisions will be. From what I gather it all depends on the age the baby and how significant the premature fusion has been.
Some Internet stories that I have read put the post-op recovery time at three or four days in the pediatric ICU. Most say that there is quite of a bit of noticeable pain in the first two days following surgery. This scares me. A lot. But everyone goes on to say how quickly their child bounced back to their old self on days three and four.
Some patients need to be fitted for a CranioCap following surgery. We are not certain yet what Lucy's game plan will include.
I hope I answered most of your questions. A lot of the specifics are still unknown to us as well.
I want to thank everyone for their support. My inbox was flooded soon after I sent out the initial email. Many of them included offers to watch our not-to-be-forgotten son, William. As appointment dates approach I will definitely look in to taking you up on those offers.
Most of all, thank you all for your prayers. We know from previous experience it's truly the only thing that will make all of this bearable. That and maybe a few beers thrown in for good measure.
6 comments:
Hi Jenny,
My name is Alison Slattery, we have not meet but my husband, Jason, was at SJV when Brian was there. I saw your blog thru Andrea Logue's. I would be more than happy to help you in anyway, I would esspecially like to get a meal over to you guys. I have meet with Dr. Wood's group over our son Thomas' chleft lip, they are all very talented. I also have a MD friend who is on the Twin Cities MD review board and he assured me it was the best group around here for anything like this.
Let me know if you need anything amslattery@netzero.com
Know you are in our prayers and as a family we will offer 3 masses, 5 rosaries, 3 holy hours, and 5 works of charity for your sweet little girl.
Alison
Jenny,
Joe and I are thinking of your family and praying for your little Lucy girl everyday! Continue to stay positive and optimistic...God will hold her up in His arms.
Amanda and Joe
Brian and Jenny,
Being so far away makes the always comforting hug impossible so my prayers for you are all I can offer. Being a veteran of 6 cranio-facial surgeries on my kids under 18 months, while traumatic to the parents, the kids recover quickly and forget even faster.
All our love goes out to you.
Take care of yourselves.
Love,
Rocky and Alia
Jen-
One of the families that I used to work with had a totally typical little girl that had to wear a cranio cap becuase of her flat head (like you showed a photo of) and it wasn't too bad. They just had her be a hockey player for halloween! :) They just had to explain that it was for cosmetic reasons.
Praying for you.
I've been thinking of you all week! Lots of positive thoughts and prayers.
Love you guys!
Jill
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