Before - you can really see his nose glistening in both these photos, but it doesn't do that now.
After - he wasn't too happy, but it didn't take long before he wanted to play with his toys again.
Saturday, January 26, 2008
CA surgery before and after photos
Before - you can really see his nose glistening in both these photos, but it doesn't do that now.
After - he wasn't too happy, but it didn't take long before he wanted to play with his toys again.
Tuesday, January 22, 2008
No more runny noses!
We are home from the hospital and things are going well. Before, every time Luke was upright his nose would run and run and run... And he absolutely hates having it wiped. Since Thursday I think it has run maybe 3 times and each time was only a little bit. It was nothing compared to the rolls (and I do literally mean rolls - tissue twirled around and around) of snot Luke used to have. Lovely subject, right? Anyway, we are all well and the biggest adjustment we are trying to make is the usual one of getting Luke to eat more. He is still taking a very long time to eat and not eating enough. His latest weight before the surgery was 14lbs. 8.5 ozs. and his latest weight after was 13lbs. 14.75 ozs., which is basically what he has weighed since the fall. Too bad he can't eat chocolate yet, it helps me add weight without even trying.
Back to the good news. To elaborate a little on what Rob said about the hearing tests... Everyone is really encouraged by his latest results. In July, Luke showed no response at all to sounds via air conduction which went up to 90dbs. In this latest test he responded to sounds via air conduction at 70dbs which is a moderate/severe loss. But that stills shows more than a 20db. gain. And given that his ears still ooze fluid we could see further improvement when that fluid dries up. Luke was also tested using a bone conduction aid and his results were as good as we could hope - hearing in the normal range (the test only went as low as 30dbs.). He heard all the sounds used in the test. This means there shouldn't be any damage to the hearing nerve (and the cochlea); the sound is just not able to get to it at a normal level. In other words something in his outer and/or middle ear is keeping sound from reaching his cochlea. We know the fluid is one thing keeping the sound out, but are not sure if there is anything else that isn't working. There were no obvious defects in his CT scan, so we will have to wait and do more testing and see how Luke's hearing develops over time. The bone conduction aid is the best option at this point because it bypasses the outer and middle ear and sends sound directly to the cochlea. We are so glad we have already started working in that direction. The earlier we can imprint his brain with sound (any sound) the better it will be for his development.
Back to the good news. To elaborate a little on what Rob said about the hearing tests... Everyone is really encouraged by his latest results. In July, Luke showed no response at all to sounds via air conduction which went up to 90dbs. In this latest test he responded to sounds via air conduction at 70dbs which is a moderate/severe loss. But that stills shows more than a 20db. gain. And given that his ears still ooze fluid we could see further improvement when that fluid dries up. Luke was also tested using a bone conduction aid and his results were as good as we could hope - hearing in the normal range (the test only went as low as 30dbs.). He heard all the sounds used in the test. This means there shouldn't be any damage to the hearing nerve (and the cochlea); the sound is just not able to get to it at a normal level. In other words something in his outer and/or middle ear is keeping sound from reaching his cochlea. We know the fluid is one thing keeping the sound out, but are not sure if there is anything else that isn't working. There were no obvious defects in his CT scan, so we will have to wait and do more testing and see how Luke's hearing develops over time. The bone conduction aid is the best option at this point because it bypasses the outer and middle ear and sends sound directly to the cochlea. We are so glad we have already started working in that direction. The earlier we can imprint his brain with sound (any sound) the better it will be for his development.
Thursday, January 17, 2008
D'oh! D'oh! D'oh! I mean WooHoo!!!!
Well I guess you can tell from the title of this post that all went well. After 3 failed attempts, we finally got the result we have waited for for soooo very long. They did Luke's hearing tests first and concluded that his hearing loss is conductive which means the bone conduction hearing aid we have now is the right one. Then Dr. Hill did the choanal atresia repair. He tried to go through the nose but the bone was too hard and he had no give so he wasn't about to risk cracking Luke's skull. He then cut a hole in the pallette and drilled the atresia away via the roof of his mouth. Dr. Hill didn't drill the hole as large as he would have liked but the airway is now open. Luke is doing well, is in the hospital overnight, Candi is staying with him, he's hurting a lot but will recover quickly. We were going to come home today but he was oozing too much blood so Dr. Hill gave us the option to stay and we gladly took it. He's really hungry but it's hard for him to suck so hopefully tomorrow will be better for feeding.
So overall it was a good day all round, but extremely long, and I'm sure will be longer for Candi as she is staying the night at Children's.
Dr. Hill also is trying something new with Luke - no stints! He has read some research from a doctor in France that showed choanal atresia repairs without stints in place healed better (no granulomas, less scarring) than repairs that had the stints put in.
I'm sure Candi will update more soon and with more information too.
So overall it was a good day all round, but extremely long, and I'm sure will be longer for Candi as she is staying the night at Children's.
Dr. Hill also is trying something new with Luke - no stints! He has read some research from a doctor in France that showed choanal atresia repairs without stints in place healed better (no granulomas, less scarring) than repairs that had the stints put in.
I'm sure Candi will update more soon and with more information too.
Monday, January 14, 2008
Big week for Luke... I hope!
It isn't too long now... Luke's choanal atresia repair surgery is scheduled for Thursday, January 17th. He is also having a bone conduction ABR and a regular ABR to test his hearing again. He has been responding so much more to sound at home both with and without his hearing aid, that I hope we get better results this time. We think Luke will have to spend some time in the hospital after surgery, but we aren't sure how long. Hopefully Rob can post on Thursday afternoon when we have a better idea of what is going on. I am excited and nervous all at the same time.
Thursday, January 10, 2008
Tag...
Here are 5 things about me that you may not know...
1) I will always be grateful to my ex-boyfriend Charlie. If he hadn't been such a complete jerk when I went to visit him in Paris I would have never traveled alone to Munich where I met Rob.
2) I always wanted to marry a man who had brothers and sisters and a close family because I wanted my own children to have that. As it turned to out I married a man whose family I completely adore, but we live on opposite sides of the world, so we hardly get to see each other.
3) When we found out we were having twins I wanted a blond and a red-head, but then was just as happy when I got a blond and a brunette. As they got older the brunette turned into a blond and the blond turned into a red-head, so I got was I was hoping for after all. (Not to mention Luke whose hair has just astounded us since birth - dark black hair with white-blond tips that has turned into bright red hair.)
4) When I was pregnant with Sam and Gus and we found out they were going to be boys I was in complete shock because all my life I had assumed I would have daughters and had no idea what to do with sons. Now that I have boys, I absolutely love it - they are so much fun!
5) Just after Luke was born and diagnosed with CHARGE I came across a website where Lisa had written about Kennedy when she was 18 months old. She said, "If I could, I would wish the CHARGE away (for her sake), but I would never wish away this wonderful "world" of people that I’ve met because of it, or the lessons I’ve learned from having this wonderful, special child. I’ve learned more from this child in the past 18 months than I have in my entire life before her." I now understand exactly what she means. Having Luke has opened my eyes in a way that would have been impossible before and I am grateful for it.
Lisa Weir and Chris Nelson I would love to see your 5 things.
1) I will always be grateful to my ex-boyfriend Charlie. If he hadn't been such a complete jerk when I went to visit him in Paris I would have never traveled alone to Munich where I met Rob.
2) I always wanted to marry a man who had brothers and sisters and a close family because I wanted my own children to have that. As it turned to out I married a man whose family I completely adore, but we live on opposite sides of the world, so we hardly get to see each other.
3) When we found out we were having twins I wanted a blond and a red-head, but then was just as happy when I got a blond and a brunette. As they got older the brunette turned into a blond and the blond turned into a red-head, so I got was I was hoping for after all. (Not to mention Luke whose hair has just astounded us since birth - dark black hair with white-blond tips that has turned into bright red hair.)
4) When I was pregnant with Sam and Gus and we found out they were going to be boys I was in complete shock because all my life I had assumed I would have daughters and had no idea what to do with sons. Now that I have boys, I absolutely love it - they are so much fun!
5) Just after Luke was born and diagnosed with CHARGE I came across a website where Lisa had written about Kennedy when she was 18 months old. She said, "If I could, I would wish the CHARGE away (for her sake), but I would never wish away this wonderful "world" of people that I’ve met because of it, or the lessons I’ve learned from having this wonderful, special child. I’ve learned more from this child in the past 18 months than I have in my entire life before her." I now understand exactly what she means. Having Luke has opened my eyes in a way that would have been impossible before and I am grateful for it.
Lisa Weir and Chris Nelson I would love to see your 5 things.
Wednesday, January 2, 2008
Luke's hearing aid
These are photos of Luke wearing his new hearing aid. We are having a heck of a time keeping it on, so if anyone has any suggestions I would love to hear them. Luke loves soft books, but as you can see nothing is more interesting than his big brothers.
Luke's first tooth
This isn't the best photo, but you can only see Luke's tooth when he is crying. Having his hands behind his head is Luke's favorite position - his self-soothing position.
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