fumbling22
07-15-2008, 01:53 PM
Whenever I tell people about Blake's metopic cranio, I'll usually get a "you poor thing. how are you getting thru it?!". I always mention how I found a message board for other parents going through the same thing and how I can basically read their success stories for other craniokids.
================================================== ========================================
http://farm3.static.flickr.com/2311/2247350232_0dc3cb4186_m.jpghttp://farm3.static.flickr.com/2020/2247350034_6517a82993_m.jpghttp://farm3.static.flickr.com/2303/2246570005_177b160848_m.jpg
After a failed inducted turned to a c-section, Blake arrived on January 31, 2008. He was 7 pounds 14 ounces. A couple of the pedicatricians on-call mentioned his pointy head shape immediately, but said it would go away and it was just because he pushed part of the way into the birth canal. I wish I could say that I initially saw it, too, but I didn't. Blake looked perfect to me. I did notice the pinching in his temples, but I thought it was adorable. It made him look so expressive. It was kind of unsual.
On day 3 before we were discharged from the hospital, the pediatrican said that we would want to be diligent in measuring Blake's head because the ridge in his forehead could be indicative of *?!%$(#+. Honestly, at the time, I had NO CLUE what he said. After the fact, I thought that I should have asked him again so that I could google it. Really, though, sleep deprivation associated with being a first-time mom was already setting in.
http://farm3.static.flickr.com/2119/2289854123_584f79d863_m.jpghttp://farm3.static.flickr.com/2356/2335944369_67cb5339a3_m.jpghttp://farm4.static.flickr.com/3271/2525852387_10f7d4f47b_m.jpg
L-R: Month 1, Month 2, Month 3
http://farm4.static.flickr.com/3257/2585785198_5a6fc803eb_m.jpghttp://farm4.static.flickr.com/3191/2687301705_5d6b1487bf_m.jpghttp://farm4.static.flickr.com/3160/2795737233_bfa54cd91b_m.jpg
L-R: Month 4, Month 5, Month 6
After we left the hospital, we saw another pediatrician two days later for breastfeeding-related issues. I asked him about the head measuring and if Blake's head shape looked okay. He said it was perfectly fine and the ridge was normal. Unrelated to the head issues, we weren't crazy about this doctor and practice, so we found a new pediatrician.
For our two week appointment, we went to see the pediatrician that we met in the hospital that said to watch Blake's head. He didn't mention Blake's head shape at this appointment. I didn't bring it up either.
At Blake's two month appointment, though, our pediatrician said that he thought Blake might have trigonocephaly and he that he was referring us to a pediatric neurosurgeon for diagnosis. The doctor also showed us a printout of an older boy with trigon and he definitely resembled Blake. The pediatrician said that if he had trigon, it would probably be have to corrected surgically. Our peditrician's office scheduled an appt with Dr. Ben Carson/Hopkins that was about 2 months away.
As soon as we went home, I googled trigonocephaly. Initially, I didn't find a lot of information until I started searching for craniosynostosis. Once I did that I found craniokids. I immediately posted a thread about Blake and whether he looked metopic. The general consensus was that he was at least moderately metopic and probably needed surgery. I also received advice about another NS (Dr. Keating @ Childrens) to see if I couldn't wait two months to see Dr. Carson @ Hopkins. We immediately scheduled an appointment with Dr. Keating that was about 2.5 weeks away.
When we met Dr. Keating initially, he spent at least 45 minutes talking to us about metopic cranio, Blake, and the surgery. My husband and I immediately felt comfortable with him. Honestly, I started feeling a little emotional when he started talking about how he considered the children that he treats to be like his own children. He also talked about how he and Dr. Boyijian, the PS were a team and that they would be there for the entire operation. According to Dr. Keating, Blake has moderately-severe metopic cranio and that 95% of NS would probably recommend surgery. He said that he would recommend surgery between 6-9 months.
Prior to Blake's CT scan a few weeks later, my husband and I figured that the best we could hope for was a classic case of metopic cranio. Fortunately, that's what they found. Dr. Keating even described Blake's metopic cranio as "textbook".
We still kept our appointment with Dr. Carson at Hopkins. By this time, we had already seen Dr. Keating twice and Blake had a CT scan. Ultimately, we chose to have Blake's surgery at Children's Hospital with Keating.
Blake was scheduled for surgery of Wed., August 6. Unfortunately, that surgery ended up being postponed because he had a cold. He also had a cold on his second surgery date of Sept 3, but they went ahead with surgery because of his first cancellation and the fact that he had already had the cold for 2 weeks. Honestly, worrying about a surgery cancellation is a great distraction from the prospect of worry about surgery.
http://farm4.static.flickr.com/3257/2772497971_a0bb4fa2fe_m.jpghttp://farm4.static.flickr.com/3197/2831362630_12b79081d8_m.jpg
L-R: Birds eye view @ 6 months, 7 months (right before surgery).
Blake is recovering from his surgery quicker and better than I could have ever hoped. He was ready to play the next morning and was even in reasonably good spirits when his eyes were swelled shut (day 2 and part of day 3). He's my little champ!
Here are some of his recovery photos:
http://farm4.static.flickr.com/3011/2831363418_92dfdca261_m.jpghttp://farm4.static.flickr.com/3083/2831366580_48fa696b78_m.jpghttp://farm4.static.flickr.com/3166/2836068643_ca6c368dec_m.jpg
L-R: surgery day, day one post-op, day three post-op
http://farm4.static.flickr.com/3271/2847636126_5bac4d47a5_m.jpghttp://farm4.static.flickr.com/3007/2846807093_8177023762_m.jpghttp://farm4.static.flickr.com/3165/2854398597_6243b3d9af_m.jpg
L-R: day 5 post-op, day 7 post-op, day 10 post-op
================================================== ========================================
http://farm3.static.flickr.com/2311/2247350232_0dc3cb4186_m.jpghttp://farm3.static.flickr.com/2020/2247350034_6517a82993_m.jpghttp://farm3.static.flickr.com/2303/2246570005_177b160848_m.jpg
After a failed inducted turned to a c-section, Blake arrived on January 31, 2008. He was 7 pounds 14 ounces. A couple of the pedicatricians on-call mentioned his pointy head shape immediately, but said it would go away and it was just because he pushed part of the way into the birth canal. I wish I could say that I initially saw it, too, but I didn't. Blake looked perfect to me. I did notice the pinching in his temples, but I thought it was adorable. It made him look so expressive. It was kind of unsual.
On day 3 before we were discharged from the hospital, the pediatrican said that we would want to be diligent in measuring Blake's head because the ridge in his forehead could be indicative of *?!%$(#+. Honestly, at the time, I had NO CLUE what he said. After the fact, I thought that I should have asked him again so that I could google it. Really, though, sleep deprivation associated with being a first-time mom was already setting in.
http://farm3.static.flickr.com/2119/2289854123_584f79d863_m.jpghttp://farm3.static.flickr.com/2356/2335944369_67cb5339a3_m.jpghttp://farm4.static.flickr.com/3271/2525852387_10f7d4f47b_m.jpg
L-R: Month 1, Month 2, Month 3
http://farm4.static.flickr.com/3257/2585785198_5a6fc803eb_m.jpghttp://farm4.static.flickr.com/3191/2687301705_5d6b1487bf_m.jpghttp://farm4.static.flickr.com/3160/2795737233_bfa54cd91b_m.jpg
L-R: Month 4, Month 5, Month 6
After we left the hospital, we saw another pediatrician two days later for breastfeeding-related issues. I asked him about the head measuring and if Blake's head shape looked okay. He said it was perfectly fine and the ridge was normal. Unrelated to the head issues, we weren't crazy about this doctor and practice, so we found a new pediatrician.
For our two week appointment, we went to see the pediatrician that we met in the hospital that said to watch Blake's head. He didn't mention Blake's head shape at this appointment. I didn't bring it up either.
At Blake's two month appointment, though, our pediatrician said that he thought Blake might have trigonocephaly and he that he was referring us to a pediatric neurosurgeon for diagnosis. The doctor also showed us a printout of an older boy with trigon and he definitely resembled Blake. The pediatrician said that if he had trigon, it would probably be have to corrected surgically. Our peditrician's office scheduled an appt with Dr. Ben Carson/Hopkins that was about 2 months away.
As soon as we went home, I googled trigonocephaly. Initially, I didn't find a lot of information until I started searching for craniosynostosis. Once I did that I found craniokids. I immediately posted a thread about Blake and whether he looked metopic. The general consensus was that he was at least moderately metopic and probably needed surgery. I also received advice about another NS (Dr. Keating @ Childrens) to see if I couldn't wait two months to see Dr. Carson @ Hopkins. We immediately scheduled an appointment with Dr. Keating that was about 2.5 weeks away.
When we met Dr. Keating initially, he spent at least 45 minutes talking to us about metopic cranio, Blake, and the surgery. My husband and I immediately felt comfortable with him. Honestly, I started feeling a little emotional when he started talking about how he considered the children that he treats to be like his own children. He also talked about how he and Dr. Boyijian, the PS were a team and that they would be there for the entire operation. According to Dr. Keating, Blake has moderately-severe metopic cranio and that 95% of NS would probably recommend surgery. He said that he would recommend surgery between 6-9 months.
Prior to Blake's CT scan a few weeks later, my husband and I figured that the best we could hope for was a classic case of metopic cranio. Fortunately, that's what they found. Dr. Keating even described Blake's metopic cranio as "textbook".
We still kept our appointment with Dr. Carson at Hopkins. By this time, we had already seen Dr. Keating twice and Blake had a CT scan. Ultimately, we chose to have Blake's surgery at Children's Hospital with Keating.
Blake was scheduled for surgery of Wed., August 6. Unfortunately, that surgery ended up being postponed because he had a cold. He also had a cold on his second surgery date of Sept 3, but they went ahead with surgery because of his first cancellation and the fact that he had already had the cold for 2 weeks. Honestly, worrying about a surgery cancellation is a great distraction from the prospect of worry about surgery.
http://farm4.static.flickr.com/3257/2772497971_a0bb4fa2fe_m.jpghttp://farm4.static.flickr.com/3197/2831362630_12b79081d8_m.jpg
L-R: Birds eye view @ 6 months, 7 months (right before surgery).
Blake is recovering from his surgery quicker and better than I could have ever hoped. He was ready to play the next morning and was even in reasonably good spirits when his eyes were swelled shut (day 2 and part of day 3). He's my little champ!
Here are some of his recovery photos:
http://farm4.static.flickr.com/3011/2831363418_92dfdca261_m.jpghttp://farm4.static.flickr.com/3083/2831366580_48fa696b78_m.jpghttp://farm4.static.flickr.com/3166/2836068643_ca6c368dec_m.jpg
L-R: surgery day, day one post-op, day three post-op
http://farm4.static.flickr.com/3271/2847636126_5bac4d47a5_m.jpghttp://farm4.static.flickr.com/3007/2846807093_8177023762_m.jpghttp://farm4.static.flickr.com/3165/2854398597_6243b3d9af_m.jpg
L-R: day 5 post-op, day 7 post-op, day 10 post-op