Tuesday, January 3, 2012
Contact info
Greetings! I recently learned that this blog is a common hit on search engines for our metopic cranio. I want to serve as support to parents who are in this valley of decision regarding their precious children. However, other than very infrequent updates I will not be monitoring this site any longer. If any one would like more information about our journey I would love to help you. My email is roopert5@hotmail.com Feel free to contact me. I will not talk you out of the decision to perform surgery or speculate on your outcome either way. I can tell you what our experience has been and the reasons that we chose not to operate. Likewise please do not respond to our story with attack or judgement. This is by far the most painful experience of my life and one that was guarded with a great deal of caution. I know the agony of considering a very serious "elective" surgery on an infant. The shock of all of it for a new parent is incomprehensible. For our family it was our decision not to complete CVR. I have only support to offer those of you who feel that CVR is the best fit. Go enjoy those babies!!!
Thursday, September 22, 2011
Two years later..
Greetings all! Fall marks our yearly return to the medical world to monitor our beautiful girls and their development. Lily is now 5 and with a late birthday is waiting until next year for kindergarten. She is a bright girl- mostly motivated by the acquisition of barbie dolls and cinnamon waffles- just a typical little lady whom we adore. As far as her appearance, the metopic ridge appears to be lessening. It is still a prominent feature on her face however with bangs it is not an issue. Her orbits are a bit shallow - certainly not noticable if you didn't know what you were looking for...
We have been followed by the plastic surgeon at Cincinnati Childrens rather than Riley as Dr Havlik would only insist in CVR. We visited several plastic and neurosurgeons at four hospital systems in the midwest and Riley was the only one who felt that CVR was appropriate. AND they confessed that it has no positive impact on brain development or function. One interesting research article I read suggests that often Cranio kids do have unusual brain development however it is not influenced by surgery. Except in very unusual circumstances intercranial pressure is generally normal for metopic kiddos. I have stacks of these studies in the basement but honestly I have moved on... The girls are so much fun- they are healthy and happy and we spend our time enjoying each other-- I can't stand the thought that Lily will enter school next year. I am very pleased in our decision to wait and avoid the CVR. The only rationale Riley gave us was of course cosmetic and that she may have headaches later in life.... REALLY?!? When they told us that we knew that the wait and see was the right choice for us. We are still able to have the burr procedure to flatten the ridge later if the girls want to- which is why we return to Cincinnati childrens. For now, I am laying out christmas cards for two gorgeous little girls. I wouldn't change a thing.
We have been followed by the plastic surgeon at Cincinnati Childrens rather than Riley as Dr Havlik would only insist in CVR. We visited several plastic and neurosurgeons at four hospital systems in the midwest and Riley was the only one who felt that CVR was appropriate. AND they confessed that it has no positive impact on brain development or function. One interesting research article I read suggests that often Cranio kids do have unusual brain development however it is not influenced by surgery. Except in very unusual circumstances intercranial pressure is generally normal for metopic kiddos. I have stacks of these studies in the basement but honestly I have moved on... The girls are so much fun- they are healthy and happy and we spend our time enjoying each other-- I can't stand the thought that Lily will enter school next year. I am very pleased in our decision to wait and avoid the CVR. The only rationale Riley gave us was of course cosmetic and that she may have headaches later in life.... REALLY?!? When they told us that we knew that the wait and see was the right choice for us. We are still able to have the burr procedure to flatten the ridge later if the girls want to- which is why we return to Cincinnati childrens. For now, I am laying out christmas cards for two gorgeous little girls. I wouldn't change a thing.
Monday, March 16, 2009
Leahs visit with Dr. Havlik
Well we finally had a follow up appoinment for Leah to re-evaluate her cranio. We actually changed Neurosurgeons and had an appointment only with the craniofacial surgeon. The gist of the meeting- Leah is borderline mild. He wants to re-evaluate her again in 6 mos and have Dr. Smith give her opinion on her appointment in April. He seemed shocked to hear that Bob was also metopic. It was an improvement that HE actually listened. I explained (somewhat) our reasons for not pursuing surgery for Lily and that we are not open to CVR for Leah either. He was respectful however encouraged us to follow up with Dr. Smith if we were not pleased with Ackerman. I continue to feel confident that our decision not to have the CVR is the right one- but now that we are through that process I still want her to be followed by someone. We are considering Cincinnati- at least I am- I find comfort in the multitude of opinions - Bob is quietly annoyed I think. We are in agreement that we will continue to work to find the right path for our beautiful little boneheads.
Tuesday, February 3, 2009
This just arrived... the science hasn't...
We spoke with Dr. Griffith at Riley Genetics today. After extensive testing of all known cranio related FGFR genes the results remain inconclusive. They swept FGFR 2 completely, FGFR 1 and 3 in the "hot spots" and completed the Twist sequence whatever that means. Basically ever condition both syndromic and non syndromic that are known to be genetic were tested for and found to be normal. Clearly something genetic is amiss, however we do not have the technology to find all of it yet...
We have an appointment for Leah next week with Dr. Havlik at Riley (craniofacial surgeon). Update to follow.
We have an appointment for Leah next week with Dr. Havlik at Riley (craniofacial surgeon). Update to follow.
Friday, December 5, 2008
Hey everyone - Just wanted to post a quick update on the latest with the girls...
we heard from the geneticist at Riley and the panel that they ran on Lilys DNA came back normal. This really just means that whatever is causing this cranio issue they don't have record of to compare it against or it just isn't one of the major tests they ran. They will dig a bit deeper and we should hear something within a couple of weeks. I guess this is a good thing because it isn't a major syndrome or something. I would say it is unlikely to be a syndrome- just cranio by itself.
Our family is going to participate in a research study completed by Seattle Childrens Hospital inconjunction with two universities to further ID what causes cranio. We are an interesting case because it has affected all three kids with two different mommies. We are probably the only ones with this spread out there. We are SOOOO special...
Lily has been doing great with all her therapies. She started a brushing program for sensory integration this week- it stinks because it is hard to remember to do...She also started Craniosacral therapy. The therapist was very impressive. Clearly it was doing something just not sure what ;-) She has days her auditory comprehension is pretty darn good. And others it is amazing she has any speech at all. I am certain with all the help she is getting that she will be fine. She will have her 30 month evaluation for the possibility of placement in a developmental preschool soon. Not sure how to go on that deal. We shall see what if anything she will qualify for.
On a bummer note Dr Vicari is not covered on our new (or old) insurance. So we will either have to do the cosmetic stuff with someone else or wait until circumstances change and he is covered. It will likely be the latter. He is lovely and the best Craniofacial surgeon. So there it is.
Well gotta go watch a movie. We are so enjoying the simplicity of just being for a while. Things have been so crazy the last few months it is wonderful just to enjoy the holidays.
Julie
we heard from the geneticist at Riley and the panel that they ran on Lilys DNA came back normal. This really just means that whatever is causing this cranio issue they don't have record of to compare it against or it just isn't one of the major tests they ran. They will dig a bit deeper and we should hear something within a couple of weeks. I guess this is a good thing because it isn't a major syndrome or something. I would say it is unlikely to be a syndrome- just cranio by itself.
Our family is going to participate in a research study completed by Seattle Childrens Hospital inconjunction with two universities to further ID what causes cranio. We are an interesting case because it has affected all three kids with two different mommies. We are probably the only ones with this spread out there. We are SOOOO special...
Lily has been doing great with all her therapies. She started a brushing program for sensory integration this week- it stinks because it is hard to remember to do...She also started Craniosacral therapy. The therapist was very impressive. Clearly it was doing something just not sure what ;-) She has days her auditory comprehension is pretty darn good. And others it is amazing she has any speech at all. I am certain with all the help she is getting that she will be fine. She will have her 30 month evaluation for the possibility of placement in a developmental preschool soon. Not sure how to go on that deal. We shall see what if anything she will qualify for.
On a bummer note Dr Vicari is not covered on our new (or old) insurance. So we will either have to do the cosmetic stuff with someone else or wait until circumstances change and he is covered. It will likely be the latter. He is lovely and the best Craniofacial surgeon. So there it is.
Well gotta go watch a movie. We are so enjoying the simplicity of just being for a while. Things have been so crazy the last few months it is wonderful just to enjoy the holidays.
Julie
Tuesday, November 18, 2008
The verdict is in...NO SURGERY NEXT WEEK!!!
Hey everyone. Thank you so much for your calls, emails and prayers. We met with Dr. Vicari in Chicago today and we are cancelling the surgery for next week. Wahhoooo!!!
While he did say they have cranio, and that the surgery is justified, it is not something he would normally do unless the childs orbits(eye sockets) are also more involved- he feels that her ridge will likely improve over time and would like to see her again for some fairly minor plastic surgery to reduce the ridge.
We are very very relieved and feel like this was a "God" thing so we are confident in this decision. He also feels like Leah will also likely improve with time and serious surgery may possibly be avoided with her. What I love about Dr. Vicari is how much he observed Lily and considered the family history in his decision. He treated her as a healthy beautiful little girl with a metopic ridge- not like another cranio case. It was definitely worth the trip to see him. We are planning on switching to Anthem at the new year so that we can work only with him in the future.
Julie
While he did say they have cranio, and that the surgery is justified, it is not something he would normally do unless the childs orbits(eye sockets) are also more involved- he feels that her ridge will likely improve over time and would like to see her again for some fairly minor plastic surgery to reduce the ridge.
We are very very relieved and feel like this was a "God" thing so we are confident in this decision. He also feels like Leah will also likely improve with time and serious surgery may possibly be avoided with her. What I love about Dr. Vicari is how much he observed Lily and considered the family history in his decision. He treated her as a healthy beautiful little girl with a metopic ridge- not like another cranio case. It was definitely worth the trip to see him. We are planning on switching to Anthem at the new year so that we can work only with him in the future.
Julie
Thursday, November 13, 2008
HOW???
So far we have surgery scheduled for less than two weeks away. The only thing that will change that is one of three things: Illness. Our third opinion next Tuesday comes up with something different that we trust more. Or divine inspiration that would likely come from prayer/ and or the number two option anyway. So it is Dr. Vicari (Chicago)or bust.
Dr. Ackerman (Riley) is recommending a reconstructive craniectomy- which is where they remove part of the the skull- in this case the frontal bone, reconstruct/ contour its appearance including breaking the bone where the suture should be and replace it to establish a more normal growth pattern and appearance. They will do this using plastic screws and floating plastic disks they place in the metopic suture and the frontal/ brow bone. They will be widening the brow a bit to make for a more normal looking temple area. Lilys are narrow. It is our understanding that although they will be working in the eye area they will not be changing anything about their appearance.
She will be in the pediatric intensive care unit for at least 1 day - likely two then hopefully transferred for the next three to five days for continued healing before returning home. They will wake her up as soon as possible after the surgery which to my understanding is to help her metabolize the drugs quicker. However she will be very very grumpy.
I cannot even begin to imagine what those days in the hospital will be like but we have our faith and amazing family and friends who have offered to help in any way they can. This is a tremendous comfort.
Lily is remarkably expected to be able to return home with "light play duty" but they glue things back together pretty well and most parents say their kids are back to themselves in a couple of weeks.
I just want this to be over if it is going to happen - after the Vicari appointment if we are still going forward we will begin to discuss the surgery with Miss Lily. She is very aware that something is going on- however with her comprehension issues and age she doesn't have all the details just yet. She told me one day that they are going to "fix her ridge" so she is getting alot of it. It will be over soon either way and for better or worse no turning back...I'm reminded of my beloved Papaw chone (Grandma Joan in Lily-speak) and her most quoted and wise saying "This too will pass" so simple and so true.
Dr. Ackerman (Riley) is recommending a reconstructive craniectomy- which is where they remove part of the the skull- in this case the frontal bone, reconstruct/ contour its appearance including breaking the bone where the suture should be and replace it to establish a more normal growth pattern and appearance. They will do this using plastic screws and floating plastic disks they place in the metopic suture and the frontal/ brow bone. They will be widening the brow a bit to make for a more normal looking temple area. Lilys are narrow. It is our understanding that although they will be working in the eye area they will not be changing anything about their appearance.
She will be in the pediatric intensive care unit for at least 1 day - likely two then hopefully transferred for the next three to five days for continued healing before returning home. They will wake her up as soon as possible after the surgery which to my understanding is to help her metabolize the drugs quicker. However she will be very very grumpy.
I cannot even begin to imagine what those days in the hospital will be like but we have our faith and amazing family and friends who have offered to help in any way they can. This is a tremendous comfort.
Lily is remarkably expected to be able to return home with "light play duty" but they glue things back together pretty well and most parents say their kids are back to themselves in a couple of weeks.
I just want this to be over if it is going to happen - after the Vicari appointment if we are still going forward we will begin to discuss the surgery with Miss Lily. She is very aware that something is going on- however with her comprehension issues and age she doesn't have all the details just yet. She told me one day that they are going to "fix her ridge" so she is getting alot of it. It will be over soon either way and for better or worse no turning back...I'm reminded of my beloved Papaw chone (Grandma Joan in Lily-speak) and her most quoted and wise saying "This too will pass" so simple and so true.
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