In case you haven't heard, Kathryn hasn't either. But we'll get to that in bit. Katie Beth has just recently finished her “one year” follow-up appointments. She needed to stay in physical therapy for her first year and then until she was walking. She just graduated from PT last Wednesday by standing up on her own without assistance from a wall or chair, and she took 10 steps in a row. She has been on the verge of walking for around five months but hasn’t really progressed since March. We’re very excited that she’s now finished with PT.
Her one year follow-up neurology appoint in May, on the other hand, was a mixed bag. We were hoping to get a follow-up MRI to confirm that Katie Beth was totally healed and her brain had stopped swelling, but that didn’t happen. Her neurologist strongly recommended that, since she had no symptoms of vision loss, hearing loss, or seizures, we skip the MRI so that we wouldn’t have to sedate her (which is risky with small children). It’s great that we didn’t need the MRI, but we didn’t get the closure we were hoping for either. May 14th we had her vision tested, and she passed without issue. We’re thankful that her vision is good and she’s developing normally physically.
Her hearing tests have been a different story though. We’ve seen the audiologist twice, and I now have her official test results sitting next to me. Live voice: no response. 500Hz: no response. 1000Hz: no response. No response; no response; no response. The first nine test results yield “no response” from Katie. In fact, the only positive result was a DPOAE test of her inner ear which shows a “reduced response” on the right side for tones ranging from (turn your volume down for these) 750Hz to 1500Hz. So she can only hear high whistles and really high whistles, but it’s something. I’ve already filled out a subscription on Amazon.com for a helium tank to be delivered every few weeks so I can talk to my daughter.
The big question now is why she’s hard of hearing. We know she doesn’t have anything blocking her outer or middle ear on either side, so maybe the sounds aren’t getting to the brain (that’s bilateral sensorineural hearing loss, or SNHL if you’re taking the class for credit), but we don’t know the cause. It’s possible that her brain is swelling again and pinching the inner ear. A shunt to drain the fluid might fix that and restore her hearing in this case. It’s also possible that the calcification in her brain, caused by the HCMV, now prevents her brain from interpreting the sounds when they arrive, rendering her deaf even though everything is fine mechanically. This could eventually lead to blindness as well. For now, however, only her hearing is effected so career opportunities in heavy construction equipment, big rigs, and ninja are still on the table.
In the next few weeks she’ll have more appointments which should help us determine why she’s losing her hearing. First up is an auditory brainstem response where she’ll be sedated and connected to an electroencephalography (EEG) machine. Tones will be played into her ears and they’ll be able to determine whether or not sounds are getting to her brain. This won’t tell us if her brain can interpret them so she can “hear” the sound; it’s just whether or not they’re getting there. If they’re not getting to the brain, I think an MRI is the next step. If they are getting to her brain, and we already know she can’t hear them, the next step is to enroll in a family American Sign Language class.
As always, we appreciate your prayers for Kathryn and for us. We know plenty of families that have much bigger challenges, but we’re disappointed and a little overwhelmed nonetheless. It’s not as bad as it could have been, but it wasn’t what we thought just a few months ago.
Her one year follow-up neurology appoint in May, on the other hand, was a mixed bag. We were hoping to get a follow-up MRI to confirm that Katie Beth was totally healed and her brain had stopped swelling, but that didn’t happen. Her neurologist strongly recommended that, since she had no symptoms of vision loss, hearing loss, or seizures, we skip the MRI so that we wouldn’t have to sedate her (which is risky with small children). It’s great that we didn’t need the MRI, but we didn’t get the closure we were hoping for either. May 14th we had her vision tested, and she passed without issue. We’re thankful that her vision is good and she’s developing normally physically.
Her hearing tests have been a different story though. We’ve seen the audiologist twice, and I now have her official test results sitting next to me. Live voice: no response. 500Hz: no response. 1000Hz: no response. No response; no response; no response. The first nine test results yield “no response” from Katie. In fact, the only positive result was a DPOAE test of her inner ear which shows a “reduced response” on the right side for tones ranging from (turn your volume down for these) 750Hz to 1500Hz. So she can only hear high whistles and really high whistles, but it’s something. I’ve already filled out a subscription on Amazon.com for a helium tank to be delivered every few weeks so I can talk to my daughter.
The big question now is why she’s hard of hearing. We know she doesn’t have anything blocking her outer or middle ear on either side, so maybe the sounds aren’t getting to the brain (that’s bilateral sensorineural hearing loss, or SNHL if you’re taking the class for credit), but we don’t know the cause. It’s possible that her brain is swelling again and pinching the inner ear. A shunt to drain the fluid might fix that and restore her hearing in this case. It’s also possible that the calcification in her brain, caused by the HCMV, now prevents her brain from interpreting the sounds when they arrive, rendering her deaf even though everything is fine mechanically. This could eventually lead to blindness as well. For now, however, only her hearing is effected so career opportunities in heavy construction equipment, big rigs, and ninja are still on the table.
In the next few weeks she’ll have more appointments which should help us determine why she’s losing her hearing. First up is an auditory brainstem response where she’ll be sedated and connected to an electroencephalography (EEG) machine. Tones will be played into her ears and they’ll be able to determine whether or not sounds are getting to her brain. This won’t tell us if her brain can interpret them so she can “hear” the sound; it’s just whether or not they’re getting there. If they’re not getting to the brain, I think an MRI is the next step. If they are getting to her brain, and we already know she can’t hear them, the next step is to enroll in a family American Sign Language class.
As always, we appreciate your prayers for Kathryn and for us. We know plenty of families that have much bigger challenges, but we’re disappointed and a little overwhelmed nonetheless. It’s not as bad as it could have been, but it wasn’t what we thought just a few months ago.
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