Friday, January 11, 2008
Since "School" is Cancelled Today...
I thought I'd post some pictures!
The SLP is sick so we have today off. This is probably good since I really needed to vacuum!
The SLP is sick so we have today off. This is probably good since I really needed to vacuum!
Head X-ray Results
The pediatrician's office called and Nolan's head X-rays were normal. This greatly reduces the chance of craniosynostosis (a head CT is required for confirmation). This is good/bad news- good news because it means that we probably don't have major surgery in the near future. Bad news because it means we have no idea what is causing the frontal bossing. I guess the CT scans and the trip to the geneticist will set us on the path to find out more. I am really glad we were able to get into the geneticist so quickly. I REALLY don't handle waiting very well- when you are worried about your baby, you want to know what it is, and you want to know NOW!
Still waiting for news from the ENT on the approval/denial of the temporal CT and the scheduling dates for both the head and temporal bone CT scans...
UPDATE: The ENT's office called and insurance has approved the temporal bone CT! This means we will only have to sedate once for both scans. Buffalo Children's should call next week to set up the date for the CT scans.
Still waiting for news from the ENT on the approval/denial of the temporal CT and the scheduling dates for both the head and temporal bone CT scans...
UPDATE: The ENT's office called and insurance has approved the temporal bone CT! This means we will only have to sedate once for both scans. Buffalo Children's should call next week to set up the date for the CT scans.
Thursday, January 10, 2008
And the Marathon Continues...
I thought I'd post an update from the ENT visit yesterday. We've been on a bit of a medical marathon this week, and I will be glad when Saturday arrives and we get a break from all the doctors' offices!
The ENT told us the EKG and urinalysis were normal (which I already knew, but was glad to hear again). She noted Nolan had fluid in his right ear, so we have to go back to her office at the end of February to check on that ear. She was also quite concerned about the frontal bossing(unlike the pediatrician) and is sending us in to see a geneticist and to get a full head and temporal bone CT scan.
I took Nolan down for his head X-rays this morning. I should hear back from the pediatrician on Friday or Monday. X-rays are not the diagnostic standard for craniosynostosis, but are a good first step. We're getting a full head CT anyway, so that will definitely let us know if his sutures are closing prematurely.
The geneticist called and we have an appointment for February 8. I'm glad we got in so quickly! We'll start the process of looking for syndromes associated with hearing loss and frontal bossing.
The bad news is that our insurance company is balking at the temporal bone CT. This is a standard part of the diagnostic process for kids with hearing loss- to visualize the cochlea and vestibular system. Oddly enough, they don't require approval for the full head CT. Because of the difference in what they are willing to cover, we may have to do two separate CT scans. This means Nolan will have to be sedated twice, which is frustrating at best. The ENT's office is currently arguing with the insurance company to get them to cover the temporal bone CT. If the ENT's office doesn't prevail, we'll go ahead with the CT scan and begin the appeal process to get the temporal bone CT covered. Insurance companies can be quite terrible to deal with. They're great if you never need medical coverage, but if you have any medical issues be prepared for many fights!
Anyway, we should know by tomorrow whether or not we get to fight Univera for coverage of the temporal bone CT. It's a necessary part of Nolan's diagnostic process. Sheesh.
The ENT told us the EKG and urinalysis were normal (which I already knew, but was glad to hear again). She noted Nolan had fluid in his right ear, so we have to go back to her office at the end of February to check on that ear. She was also quite concerned about the frontal bossing(unlike the pediatrician) and is sending us in to see a geneticist and to get a full head and temporal bone CT scan.
I took Nolan down for his head X-rays this morning. I should hear back from the pediatrician on Friday or Monday. X-rays are not the diagnostic standard for craniosynostosis, but are a good first step. We're getting a full head CT anyway, so that will definitely let us know if his sutures are closing prematurely.
The geneticist called and we have an appointment for February 8. I'm glad we got in so quickly! We'll start the process of looking for syndromes associated with hearing loss and frontal bossing.
The bad news is that our insurance company is balking at the temporal bone CT. This is a standard part of the diagnostic process for kids with hearing loss- to visualize the cochlea and vestibular system. Oddly enough, they don't require approval for the full head CT. Because of the difference in what they are willing to cover, we may have to do two separate CT scans. This means Nolan will have to be sedated twice, which is frustrating at best. The ENT's office is currently arguing with the insurance company to get them to cover the temporal bone CT. If the ENT's office doesn't prevail, we'll go ahead with the CT scan and begin the appeal process to get the temporal bone CT covered. Insurance companies can be quite terrible to deal with. They're great if you never need medical coverage, but if you have any medical issues be prepared for many fights!
Anyway, we should know by tomorrow whether or not we get to fight Univera for coverage of the temporal bone CT. It's a necessary part of Nolan's diagnostic process. Sheesh.
Wednesday, January 9, 2008
New Hearing Aids!
He has his aids!
This video is pretty bad- I was holding him and taking video at the same time. At the very end of the video the audiologist comes in and claps her hands- he looks up to the sound, which was a sound so soft he would never have noticed it before!
This video is pretty bad- I was holding him and taking video at the same time. At the very end of the video the audiologist comes in and claps her hands- he looks up to the sound, which was a sound so soft he would never have noticed it before!
Tuesday, January 8, 2008
Frustration!
Besides the car breaking down (which is now fixed, thank goodness), I've been wild-goose chasing with the various doctors who see Nolan. Monday night, I received an automated appointment confirmation call from the ENT. I confirmed the appointment and was glad to be all set in that area.
Caller ID told me the ENT was on the phone this morning. The office person there asked if we had any of the tests performed since our previous visit. Our last visit was when Nolan was 8 weeks old, and I had done every test she ordered.
"Did you do the EKG?" asks the office person.
"Yep. In early November. It's done."
"We don't have any record of it. I'll have to call the hospital to get a record."\
"OK- it was done. I haven't heard anything back."
"Did you do the urinalysis?"
"Yep. At the pediatrician's office in early November."
"No record of that, either. We'll call and get it."
Then she asks about the hearing exams:
"Did you ever do the diagnostic ABR?"
"You have no record of that?"
"No. They never sent us anything."
"I have all the records- I'm picking up aids tomorrow so I can get extra copies."
"Great- bring copies. We'll put them in his files. Did you do the CT scan?"
Now this is where I get frustrated!
"No, the ENT never ordered the CT scan."
"Oh, do you still want to come in? We can't do anything without the CT scan!"
"Yes, I still want to come in. She said we'd do the CT scan at the next visit, and this is the next visit."
There was more hullaballoo about needing insurance approval and the feeling that I would be wasting the ENT's time, but I don't care. I need someone else to look at Nolan's head and if I cancel this appointment, I have a feeling MORE things will get lost and put off.
The most fabulous moms (and dads) at listen-up.org suggested I create a binder with all of Nolan's medical reports, since lack of communication between the physicians is common. I have all of his hearing related things, but none of his medical things. I'll make sure to get some copies at this next appointment!
Caller ID told me the ENT was on the phone this morning. The office person there asked if we had any of the tests performed since our previous visit. Our last visit was when Nolan was 8 weeks old, and I had done every test she ordered.
"Did you do the EKG?" asks the office person.
"Yep. In early November. It's done."
"We don't have any record of it. I'll have to call the hospital to get a record."\
"OK- it was done. I haven't heard anything back."
"Did you do the urinalysis?"
"Yep. At the pediatrician's office in early November."
"No record of that, either. We'll call and get it."
Then she asks about the hearing exams:
"Did you ever do the diagnostic ABR?"
"You have no record of that?"
"No. They never sent us anything."
"I have all the records- I'm picking up aids tomorrow so I can get extra copies."
"Great- bring copies. We'll put them in his files. Did you do the CT scan?"
Now this is where I get frustrated!
"No, the ENT never ordered the CT scan."
"Oh, do you still want to come in? We can't do anything without the CT scan!"
"Yes, I still want to come in. She said we'd do the CT scan at the next visit, and this is the next visit."
There was more hullaballoo about needing insurance approval and the feeling that I would be wasting the ENT's time, but I don't care. I need someone else to look at Nolan's head and if I cancel this appointment, I have a feeling MORE things will get lost and put off.
The most fabulous moms (and dads) at listen-up.org suggested I create a binder with all of Nolan's medical reports, since lack of communication between the physicians is common. I have all of his hearing related things, but none of his medical things. I'll make sure to get some copies at this next appointment!
Monday, January 7, 2008
Pediatrician's Visit
I had Nolan's 4 month well-baby visit today. I was extemely anxious for this visit because of my concerns for the shape of his forehead. She took a look at his head and felt for the soft spots, and said that craniosynostosis is unlikely because his soft spot is still open. The "front bossing" of his forehead is more likely his natural head shape. In other words, he probably just has a funny lookin' noggin.
"If it would make you feel better," she said, "I will write an order for some films to make sure his head is OK."
Long ago I learned to trust mommy-instinct over anything (or anyone) else, and so I requested an order for head X-rays. An hour and a half later (she forgot about the order the second she left the examining room), I left the pediatrician's office with the order for X-rays.
In other news, he is 13 pounds, 10 ounces (a lightweight) and 26 inches long at four months old. Looks like he's going to be a long and lean little man!
This week is absolutely BOOKED with appointments. Hubby left for Sweden two days after we got back from California, and the car decided to break shortly after his departure. After the pediatrician's appointment, the boys and I spent several fun hours waiting in the mechanic's waiting room. Turns out the bolt holding on the right rear shock has been severed. They ordered the replacement part and it should be in by noon tomorrow. I'm taking the car back tomorrow at 1:00 to get it fixed before we go to Buffalo on Wednesday. That car better run smoothly, because I have some hearing aids to pick up!
I'll probably do the head X-rays on Thursday and then we have our first day of "school" on Friday with the speech-language pathologist. I'm looking forward to Saturday- we might have a day free of appointments by then!!!
"If it would make you feel better," she said, "I will write an order for some films to make sure his head is OK."
Long ago I learned to trust mommy-instinct over anything (or anyone) else, and so I requested an order for head X-rays. An hour and a half later (she forgot about the order the second she left the examining room), I left the pediatrician's office with the order for X-rays.
In other news, he is 13 pounds, 10 ounces (a lightweight) and 26 inches long at four months old. Looks like he's going to be a long and lean little man!
This week is absolutely BOOKED with appointments. Hubby left for Sweden two days after we got back from California, and the car decided to break shortly after his departure. After the pediatrician's appointment, the boys and I spent several fun hours waiting in the mechanic's waiting room. Turns out the bolt holding on the right rear shock has been severed. They ordered the replacement part and it should be in by noon tomorrow. I'm taking the car back tomorrow at 1:00 to get it fixed before we go to Buffalo on Wednesday. That car better run smoothly, because I have some hearing aids to pick up!
I'll probably do the head X-rays on Thursday and then we have our first day of "school" on Friday with the speech-language pathologist. I'm looking forward to Saturday- we might have a day free of appointments by then!!!
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