Thursday, May 5, 2016
Ortho update
We had Celina's Ortho appointment yesterday to look at her spine. Let me start off by saying I left extremely irritated and frustrated. No exaggeration, the doctor saw us for MAYBE 5 min and told us to come back in four months. What he did tell us could have been said over the phone!! We had to drive an hour to St.Paul, pay for parking, get lunch, Interrupt the entire day for a 5 min appointment!!!???? I was livid!!! Anyways. What the doctor DID say was she does have what he calculated as a 25 degree curve but is hoping that in four months she gains some muscle tone and wont need a brace. If thats the case he wont need to see her until she reaches adolescence (when she will hit a growth spurt and her curve may increase significantly). If her curve jumps into the 30s by next appointment they will move forward with braces or something of the sort. So it wasnt bad news!!! I just worry about the possibility it may curve worse and its irreversible! Still. All of this could have been said over the phone! He looked at her back for about 30 seconds not even taking her shirt off. I've just got enough running around to do that this felt like a waste of time. Sept 7th we go back in, they will take more x-rays and we go from there!!
Tuesday, May 3, 2016
Cochlear consult, etc.
Hey all! we had Celina's CI (cochlear implant) consult a few weeks ago. As many of you know, Celina and I took a nice, much needed little vacation with a few of my sisters. We had her consult the day we left. We literally left from the appointment and headed off to Florida!! Needless to say I haven't had time to write a detailed post on how it went!
First thing we did was see LJ (audiologist). We tested to see how much Celina could hear with her hearing aids. LJ had Celina and I go into the soundproof room and with different loud noises tried to determine what she could hear. During the test Celina only seemed to react or turn to extremely loud noises only on her right side. After the booth testing LJ checked her ears and tubes to see if there was an infection or her tubes had clogged. Celinas ears were a little goopy and red so that may have hindered the test a small amount. Her left tube was completely missing but she has never reacted from that side so LJ wasnt too concerned.
After the Hearing test we went upstairs to meet Dr. M (ENT specializing in cochlears). Given Celina has had endless ear infections and one tube missing, Dr. M suggested replacement tubes. At this time we had not yet received Celina's test results for CHARGE Syndrome. So i'm a little on the fence about getting excited about this part. Dr. M said she would like to do and MRI on Celina given possible CHARGE Syndrome and what that entails. She said if everything looks ok she would like to Implant both sides of Celina at once instead of two different surgeries. The CHARGE diagnosis changes a lot in my opinion. Most people with CHARGE have different sized nerves that are in different spots than they should be. Some dont have the auditory nerve. Some have small/malformed semicircular canals, some have too few spirals in the cochlea, Some have facial nerves or other nerves set to close to do the surgery because hitting one could cause face paralysis or other issues.... The list goes on. So we'll just have to wait for the MRI to see whats going to happen. I've actually read from quite a few other CHARGE parents that even when it looked good on the MRI once the doctor was in there and had them opened up it was just too messy or dangerous to proceed. Either way I know I'll be happy. Whats ment to be will be. Im currently waiting on a phone call to schedule the tube and MRI together. Rather than put Celina under twice, we figured we would do both at once and get it done in one shot. The tube surgery will be a one day thing. No overnight stay in the hospital!! YIPPIEEE!! Man I'm getting sick of that place!! HA! (for those who didn't know Celina was recently hospitalized for 3 days with RSV) The downfalls of living in the sticks... Many long drives to many appointments.
Tomorrow we have Celina's appointment with Ortho. for her spine and hips. Hoping to get good news!!! (like no rod in her spine) Celina's PT notices Celina's spine being a bit more curved than the last time she was over here (2 weeks before) She believes its because Celina went thru a growth spurt and growing a crooked spine will just enhance the crookedness. Anyways hopefully we'll know more tomorrow!! Wish us Luck!!
First thing we did was see LJ (audiologist). We tested to see how much Celina could hear with her hearing aids. LJ had Celina and I go into the soundproof room and with different loud noises tried to determine what she could hear. During the test Celina only seemed to react or turn to extremely loud noises only on her right side. After the booth testing LJ checked her ears and tubes to see if there was an infection or her tubes had clogged. Celinas ears were a little goopy and red so that may have hindered the test a small amount. Her left tube was completely missing but she has never reacted from that side so LJ wasnt too concerned.
After the Hearing test we went upstairs to meet Dr. M (ENT specializing in cochlears). Given Celina has had endless ear infections and one tube missing, Dr. M suggested replacement tubes. At this time we had not yet received Celina's test results for CHARGE Syndrome. So i'm a little on the fence about getting excited about this part. Dr. M said she would like to do and MRI on Celina given possible CHARGE Syndrome and what that entails. She said if everything looks ok she would like to Implant both sides of Celina at once instead of two different surgeries. The CHARGE diagnosis changes a lot in my opinion. Most people with CHARGE have different sized nerves that are in different spots than they should be. Some dont have the auditory nerve. Some have small/malformed semicircular canals, some have too few spirals in the cochlea, Some have facial nerves or other nerves set to close to do the surgery because hitting one could cause face paralysis or other issues.... The list goes on. So we'll just have to wait for the MRI to see whats going to happen. I've actually read from quite a few other CHARGE parents that even when it looked good on the MRI once the doctor was in there and had them opened up it was just too messy or dangerous to proceed. Either way I know I'll be happy. Whats ment to be will be. Im currently waiting on a phone call to schedule the tube and MRI together. Rather than put Celina under twice, we figured we would do both at once and get it done in one shot. The tube surgery will be a one day thing. No overnight stay in the hospital!! YIPPIEEE!! Man I'm getting sick of that place!! HA! (for those who didn't know Celina was recently hospitalized for 3 days with RSV) The downfalls of living in the sticks... Many long drives to many appointments.
Tomorrow we have Celina's appointment with Ortho. for her spine and hips. Hoping to get good news!!! (like no rod in her spine) Celina's PT notices Celina's spine being a bit more curved than the last time she was over here (2 weeks before) She believes its because Celina went thru a growth spurt and growing a crooked spine will just enhance the crookedness. Anyways hopefully we'll know more tomorrow!! Wish us Luck!!
Vacation picture! Celina loved the beach and warmth! But absolutely HATED the water!
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