Massachusetts is cold and rainy, the perfect scenario for sitting and waiting in a dreary waiting room at Mass Eye & Ear Infirmary! After 14+ hours in the car the last two days with a crying, whimpering dog, this place seems unusually quiet.
We were up at 3:45, out the door at 4:15 only to return after about 2 miles to retrieve forgotten items. Mad race to be here at 5:30 as requested. Hurry up and wait for an eternity before she's even called in. Finally we are called in to be with Roberta in pre-op, saw the nurse, anesthesiologist, surgeon, etc. They took her at 7:30 and now we wait. It's only 9:30 now, and I'm already bored and anxious!
Later!
in our hoUSe.....!
Friday, June 7, 2013
Wednesday, June 5, 2013
Roberta's Journey to Hearing Begins on Friday!
We'll be there! So exciting! So excited! But nervous too! More later!
Sunday, May 12, 2013
Happy Mother's Day!
My daughters amaze me! One is a mom - and a great one at that! The other is not a mom, sadly; she'd be a great mom too! They have showered me with many blessings throughout their lives. This Mother's Day is no exception!
Andrea has started a new blog called "Eye Can't Hear You!" (http://eyecanthearu.com) to provide information and personal history to the hearing and/or visually impaired. This is her post for Mother's Day!
Andrea has started a new blog called "Eye Can't Hear You!" (http://eyecanthearu.com) to provide information and personal history to the hearing and/or visually impaired. This is her post for Mother's Day!
If you are a Mom with a disability, take the time to thank your mother for all she did for you…
If you are a Mom with a child who has a disability, thank you for doing all you do…
Eye Can’t Hear You! would like to wish all the moms out there a Happy Mother’s Day.
_________________________________________________
To All the Moms with Kids/Adults with Special Needs
You were there for me through thick and thin
You never gave up when I was sick
When you were told I had special needs
You knew I was special, and you are special to me.
I know why you were chosen . . . for your capabilities.
You are my teacher, advocate, and taught me many abilities.
You cry and smile when I succeed.
I want to thank you for all you do for me.
Because you are special, the most special Mom for ME!!!
(Family Network on Disabilities http://fndfl.org/)
So true and so special! I'd like to think I helped along the way - for both daughters are self-respecting and other-respecting fully-functioning adults who hold responsible jobs, manage themselves and their family, and now are helping others through blogging and in many other ways.
If you have an interest in resources, aids, info, and hope for those with visual or hearing disabilities (or both), I hope you'll follow her blog - she posts every day! (More than I can say for this blogger!)
Stay tuned to this blog, as we are about to embark on an exciting journey with Roberta, who will have surgery on June 7 for a cochlear implant! I plan to document that along the way! Hope you'll follow along with us!
Monday, January 28, 2013
Reality Check! Update!
The good news:
The irritation in Roberta's eye appears to be a scratch on the surface of her eye, probably due to soap in her eye after crying over a sad movie. It wasn't a meltdown as first thought, but rather just the sadness of "Steel Magnolias." Bad choice for the moment!
More good news:
Her vision today at the check-up was 20/25....even better than the day following surgery! And she maneuvered so much more easily at her job as school psychologist today, now being able once again to see all the way down the hall, recognize faces at a distance, read lips at a distance, not have to wear sunglasses in her windowless office or in her sunny home. She navigated with ease and is thrilled about that!
The reality:
There are so many things operating that can affect RP, and everyone with this condition is different, and so is the rate, extent, and progression of disease. We KNOW that she'll have to have YAG laser surgery as a follow-up at some point. Could be a year; could be a month post-op. This surgery and its risks are described here.
There is the risk of CME (Cystoid Macula Edema) or swelling of the retina or macula after cataract surgery. Here is info about that. The critical period for this swelling is between four and six weeks post-surgery. The risk of retinal detachment remains for up to six months.
For those of you who have had cataract surgery (but not RP), there are some of these risks for us as well, but most people - who are generally MUCH older than Roberta) - undergo cataract extraction with no or few complications.
I think that the benefits for Roberta outweighed these risks, but now the surgery is DONE, her vision has improved significantly, and she is delighted with the results. She has undergone a miracle to restore much of the central vision she has lost over time. She has experienced TODAY with this improved eyesight; she/we (her father and I) will take one day at a time along with her (though at some distance - like 850 miles!) She will learn to value each day in the moment and not look back. And if tomorrow that changes, then she needs to be grateful for the blessings of these days right now. I pray the good times will continue to roll for a long, long time!
The irritation in Roberta's eye appears to be a scratch on the surface of her eye, probably due to soap in her eye after crying over a sad movie. It wasn't a meltdown as first thought, but rather just the sadness of "Steel Magnolias." Bad choice for the moment!
More good news:
Her vision today at the check-up was 20/25....even better than the day following surgery! And she maneuvered so much more easily at her job as school psychologist today, now being able once again to see all the way down the hall, recognize faces at a distance, read lips at a distance, not have to wear sunglasses in her windowless office or in her sunny home. She navigated with ease and is thrilled about that!
The reality:
There are so many things operating that can affect RP, and everyone with this condition is different, and so is the rate, extent, and progression of disease. We KNOW that she'll have to have YAG laser surgery as a follow-up at some point. Could be a year; could be a month post-op. This surgery and its risks are described here.
There is the risk of CME (Cystoid Macula Edema) or swelling of the retina or macula after cataract surgery. Here is info about that. The critical period for this swelling is between four and six weeks post-surgery. The risk of retinal detachment remains for up to six months.
For those of you who have had cataract surgery (but not RP), there are some of these risks for us as well, but most people - who are generally MUCH older than Roberta) - undergo cataract extraction with no or few complications.
I think that the benefits for Roberta outweighed these risks, but now the surgery is DONE, her vision has improved significantly, and she is delighted with the results. She has undergone a miracle to restore much of the central vision she has lost over time. She has experienced TODAY with this improved eyesight; she/we (her father and I) will take one day at a time along with her (though at some distance - like 850 miles!) She will learn to value each day in the moment and not look back. And if tomorrow that changes, then she needs to be grateful for the blessings of these days right now. I pray the good times will continue to roll for a long, long time!
RP and Cataract Surgery
People with Usher Syndrome face progressive hearing and vision loss. The vision loss is due to Retinitis Pigmentosa (RP) that causes increasing loss of peripheral vision, while the central vision - for the most part - is unaffected by the RP. That doesn't mean that the central vision can not be affected by other visual acuity issues. Near- and far-sightedness can usually be corrected (or somewhat corrected) with glasses or contact lenses. But cataracts are more common with RP at a younger age than with normal-sighted folks (like me!)
There is controversy and lack of consensus as to whether or not cataract surgery is advisable at all for patients with RP. In fact, our daughter's retinal specialists have STRONGLY advised against it! However, the retinal specialists she's seen, while long well-known in their field of research, are just that. They are not clinicians; they don't deal with the reality of one's life or the functionality of vision based on the personal, professional, social/emotional life of their patients. So....after consulting with many, by phone, email, in person, and doing extensive online research, she went to a highly recommended cataract surgeon who has experience with such surgery on RP patients and has, in fact, done a number of them against the recommendation of our daughter's retinal specialists - with success!
Roberta made this decision herself, deciding to go forward with the surgery and take the risks associated with it to have a chance at extending her work life, which had become severely impacted quickly over the last 8 months, due to loss of acuity, extreme sensitivity to lights and glare, and distorted images from the affected eye. I think when a hearing-impaired person who relies heavily on lip-reading can no longer do that across a table, it's natural to want to do anything to improve that. Imagine the frustration of struggling to hear AND see when just months before, you had a good handle on the disabilities imposed by this condition. Usher Syndrome is an inherited condition, caused by both parents carrying a recessive gene for it. Our daughters both have this syndrome, Type IIC, with absolutely no known history of it on both sides of our families.
So....the surgery took place last Wednesday, a simple procedure that had us in and out of the surgery center in very little time. She was alert (no conscious sedation) and pain-free when we left there, and she was immediately thrilled with the results. A follow-up appointment the next day revealed that her vision was 20/30 unaided in that eye as opposed to the 20/200 pre-surgery with her contact lenses. WOW! WOW! WOW!
We left her yesterday to return home, feeling comfortable that she was OK to be on her own and to return to work today. So far, so good. Stay tuned, however, for the follow-up to this story, for there is an issue today for which she is going to see the surgeon. Not sure what's up, but if you're reading this, please continue to pray for her. I'll report once I know more, or you can follow along on FB.
There is controversy and lack of consensus as to whether or not cataract surgery is advisable at all for patients with RP. In fact, our daughter's retinal specialists have STRONGLY advised against it! However, the retinal specialists she's seen, while long well-known in their field of research, are just that. They are not clinicians; they don't deal with the reality of one's life or the functionality of vision based on the personal, professional, social/emotional life of their patients. So....after consulting with many, by phone, email, in person, and doing extensive online research, she went to a highly recommended cataract surgeon who has experience with such surgery on RP patients and has, in fact, done a number of them against the recommendation of our daughter's retinal specialists - with success!
Roberta made this decision herself, deciding to go forward with the surgery and take the risks associated with it to have a chance at extending her work life, which had become severely impacted quickly over the last 8 months, due to loss of acuity, extreme sensitivity to lights and glare, and distorted images from the affected eye. I think when a hearing-impaired person who relies heavily on lip-reading can no longer do that across a table, it's natural to want to do anything to improve that. Imagine the frustration of struggling to hear AND see when just months before, you had a good handle on the disabilities imposed by this condition. Usher Syndrome is an inherited condition, caused by both parents carrying a recessive gene for it. Our daughters both have this syndrome, Type IIC, with absolutely no known history of it on both sides of our families.
So....the surgery took place last Wednesday, a simple procedure that had us in and out of the surgery center in very little time. She was alert (no conscious sedation) and pain-free when we left there, and she was immediately thrilled with the results. A follow-up appointment the next day revealed that her vision was 20/30 unaided in that eye as opposed to the 20/200 pre-surgery with her contact lenses. WOW! WOW! WOW!
We left her yesterday to return home, feeling comfortable that she was OK to be on her own and to return to work today. So far, so good. Stay tuned, however, for the follow-up to this story, for there is an issue today for which she is going to see the surgeon. Not sure what's up, but if you're reading this, please continue to pray for her. I'll report once I know more, or you can follow along on FB.
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