After our experience at Devnar School for the Blind, where we were told that there are no services for blind children under the age of 5 in the city, Tori and I decided we wanted to keep looking and get a clear picture of what is offered for early intervention for young blind children. We booked an appointment at LV Prasad Eye Institute with Dinah and Charlotte. Dinah has nystagmus and we wanted a 2nd opinion about whether there is anything we can do to help her vision. Charlotte has anophthalmia and we had questions about getting her prosthetic eyes. We also wanted to look into their rehab facilities to see what types of services are offered.
We walked in and my first reaction was surprise that there was nothing in Braille. Even our local Gymboree has Braille on the elevator, but this hospital, which is known for its excellent work for the blind, didn't offer that, which surprised me.
We waited awhile and then went to meet with the ophthalmologist. The staff were excellent and far better with our kids than anywhere else I have seen. The doctors danced with Dinah, pulled stuffed animals and chocolates out of their pockets, and rocked Charlotte for me when she got fussy. They asked us lots of questions and were kind and thorough. The wait times were very, very long, but finally our appointment was done. They said that surgery or glasses will not help Dinah, and they referred us to see their rehab team. For Charlotte they recommended rehab as well and also referred us to their team that fits prosthetic eyes. We booked an appointment to return 2 days later.
On Saturday we returned for our follow up appointment. We started in the reheb department and I can't even tell you how impressed I was. They have great equipment and very passionate staff. They have a vision therapist, speech therapist, physiotherapist, and special educator. The speech therapist was away that day, but we spent time with each of the other staff as they assessed our kids. The PT gave us lots of great ideas to work on the kids' strength. He also showed us some stretches for Dinah and said that she has a crouch gait. If it doesn't improve with stretching and strengthening, he recommended a tendon release. The vision therapist thought Charlotte may have some light perception. The special educator was incredible. She is Christian and told us the story of how she felt Jesus calling her to this work. She just glowed when she talked about the work that she does and as we bounced ideas around, we could see that she has an incredible understanding of special education. She also said that they serve between 10-15 children/day and are booked pretty solid. That is great to know for our preschool- the need is there.
Following rehab, we spent a whopping 2.5 hours waiting and being led to the wrong places. That is the only downside to LV Prasad in my eyes; it has to have the worst organization I have ever seen. No one seemed to know how to get us from point a to point b and by the end, Dinah was exhausted and sobbing from all the walking. But, finally, we made it to the ocularist to talk about fitting Charlotte for prosthetic eyes. We spoke briefly and he explained the process to us. He wanted to see Brianna as well, so we booked another appointment to come back on Wednesday to discuss the process in greater detail, along with the woman in charge of the department who was away that day.
We returned on Wednesday, and, as we have become used to at this hospital, we were sent to multiple rooms on multiple floors and then waited for nearly 2.5 hours before we finally went back ourselves and found someone to help us. After that we saw the doctor right away and she looked at both girls (Charlotte and Brianna) and explained the process to get prosthetics. She said that first, they would place a button conformer. This is done in a quick 5 minute procedure. We would have to return to the hospital frequently (every month or two). At some point (I'm unclear on when), they put in spacers which are designed to expand the sockets so that they will be big enough for prosthetic eyes. Right now, the kids' eye sockets are really tiny. Brianna's are so tiny that we can barely see inside if we pull her lids back. The doctor said that it wouldn't be until the girls are closer to 4 years old that the spacers would have done their work and the sockets would be big enough. At that point, they would get the prosthetics.
Tori and I spent a lot of time researching this. The whole process is still a little bit confusing to me and I may not have explained it correctly, but our biggest concern was whether there were reasons to get a prosthetic aside from just cosmetics. God made our girls the way they are and I don't feel right putting prosthetics in just to make them look "normal". I worry it would send them the wrong message, that they need to change who they are or that there is something wrong with how they look. I think they are beautiful and I love their faces with no eyeballs.
That said, many people told us that if we don't get the prosthetics now, their facial bones would grow incorrectly or unsymmetrically. In our research and asking on message boards, we found that this is true for people with microphthalmia or with unilateral anophthalmia (1 side has an eye, the other side doesn't) but this doesn't seem to be very common for children with bilateral anophthalmia, which Charlotte, Brianna, and Chloe all have. That said, Cedar has unilateral anophthalmia and is already 6 years old and we haven't seen any issues with his facial symmetry. We found many other parents who never got prosthetics for their children saying the same thing; they never had a problem with facial bone growth.
It is a big decision and we haven't taken it lightly. I thought a lot about what the girls would want when they are older, and also what their parents would want, if they get adopted one day. Tori and I both spent time praying about how to move forward, following the meeting with the doctor and a lot of research. We also spoke with Sarah as she went through this process already with 2 of the older SCH girls a few years back when they got prosthetics. At this time, we are not going to move forward with getting our girls prosthetic eyes. I feel at peace about this and think we are making the right decision for our girls. I keep coming back to the thought that God made them the way they are and they are perfect and beautiful the way they are. Cosmetics (beauty) is not a good enough reason alone to get the prosthetics for the girls, in my opinion, as they are beautiful and perfectly made as they are.
It was a great opportunity to get to spend time in the leading facility for eye care in our state and to get a better idea of what rehabilitation services are available. Overall, minus the pretty awful direction and organization of patients (even by Indian standards), I was really impressed with what I saw and encouraged by the great patient care once we were able to get in to see the doctors and specialists.
We walked in and my first reaction was surprise that there was nothing in Braille. Even our local Gymboree has Braille on the elevator, but this hospital, which is known for its excellent work for the blind, didn't offer that, which surprised me.
We waited awhile and then went to meet with the ophthalmologist. The staff were excellent and far better with our kids than anywhere else I have seen. The doctors danced with Dinah, pulled stuffed animals and chocolates out of their pockets, and rocked Charlotte for me when she got fussy. They asked us lots of questions and were kind and thorough. The wait times were very, very long, but finally our appointment was done. They said that surgery or glasses will not help Dinah, and they referred us to see their rehab team. For Charlotte they recommended rehab as well and also referred us to their team that fits prosthetic eyes. We booked an appointment to return 2 days later.
Following rehab, we spent a whopping 2.5 hours waiting and being led to the wrong places. That is the only downside to LV Prasad in my eyes; it has to have the worst organization I have ever seen. No one seemed to know how to get us from point a to point b and by the end, Dinah was exhausted and sobbing from all the walking. But, finally, we made it to the ocularist to talk about fitting Charlotte for prosthetic eyes. We spoke briefly and he explained the process to us. He wanted to see Brianna as well, so we booked another appointment to come back on Wednesday to discuss the process in greater detail, along with the woman in charge of the department who was away that day.
We returned on Wednesday, and, as we have become used to at this hospital, we were sent to multiple rooms on multiple floors and then waited for nearly 2.5 hours before we finally went back ourselves and found someone to help us. After that we saw the doctor right away and she looked at both girls (Charlotte and Brianna) and explained the process to get prosthetics. She said that first, they would place a button conformer. This is done in a quick 5 minute procedure. We would have to return to the hospital frequently (every month or two). At some point (I'm unclear on when), they put in spacers which are designed to expand the sockets so that they will be big enough for prosthetic eyes. Right now, the kids' eye sockets are really tiny. Brianna's are so tiny that we can barely see inside if we pull her lids back. The doctor said that it wouldn't be until the girls are closer to 4 years old that the spacers would have done their work and the sockets would be big enough. At that point, they would get the prosthetics.
Tori and I spent a lot of time researching this. The whole process is still a little bit confusing to me and I may not have explained it correctly, but our biggest concern was whether there were reasons to get a prosthetic aside from just cosmetics. God made our girls the way they are and I don't feel right putting prosthetics in just to make them look "normal". I worry it would send them the wrong message, that they need to change who they are or that there is something wrong with how they look. I think they are beautiful and I love their faces with no eyeballs.
That said, many people told us that if we don't get the prosthetics now, their facial bones would grow incorrectly or unsymmetrically. In our research and asking on message boards, we found that this is true for people with microphthalmia or with unilateral anophthalmia (1 side has an eye, the other side doesn't) but this doesn't seem to be very common for children with bilateral anophthalmia, which Charlotte, Brianna, and Chloe all have. That said, Cedar has unilateral anophthalmia and is already 6 years old and we haven't seen any issues with his facial symmetry. We found many other parents who never got prosthetics for their children saying the same thing; they never had a problem with facial bone growth.
It is a big decision and we haven't taken it lightly. I thought a lot about what the girls would want when they are older, and also what their parents would want, if they get adopted one day. Tori and I both spent time praying about how to move forward, following the meeting with the doctor and a lot of research. We also spoke with Sarah as she went through this process already with 2 of the older SCH girls a few years back when they got prosthetics. At this time, we are not going to move forward with getting our girls prosthetic eyes. I feel at peace about this and think we are making the right decision for our girls. I keep coming back to the thought that God made them the way they are and they are perfect and beautiful the way they are. Cosmetics (beauty) is not a good enough reason alone to get the prosthetics for the girls, in my opinion, as they are beautiful and perfectly made as they are.
It was a great opportunity to get to spend time in the leading facility for eye care in our state and to get a better idea of what rehabilitation services are available. Overall, minus the pretty awful direction and organization of patients (even by Indian standards), I was really impressed with what I saw and encouraged by the great patient care once we were able to get in to see the doctors and specialists.
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