The nystagmus is very quite here, and I think that is due to the medicine, as it seems a bit more active today. Dr. Hertle said we can expect to see the full results in two months.
As Makayla Sees It
Friday, August 3, 2012
Nystagmus Hours After Eye Muscle Surgery
Here is a video I took of Makayla's eyes just hours after her surgery.
The nystagmus is very quite here, and I think that is due to the medicine, as it seems a bit more active today. Dr. Hertle said we can expect to see the full results in two months.
The nystagmus is very quite here, and I think that is due to the medicine, as it seems a bit more active today. Dr. Hertle said we can expect to see the full results in two months.
Surgery & Post Op
Wow, the last 24 hours is such a blur. I hope I can remember everything I want to share!
The night before surgery was a rough one for me. I am so grateful to have a bed and the Ronald McDonald House, but man are they uncomfortable! I got roughly three hours of sleep that night. Something about sharing a twin air mattress with a one year old that makes for a terrible night's sleep!
Makayla slept pretty good, but couldn't eat that morning, due to her surgery, so she was extremely cranky, so I headed to the hospital early in hopes that the new surroundings would be enough of a distraction to keep her pleasant.
It's a good thing we got there early, because on our way in to the hospital, there was a Indy Car sitting out front and lots of important looking people. I paused for a minute to see what was going on, since my husband is a big race fan, and before I could even take it all in, they invited Makayla to sit in the race car and we got to meet one of Indy Car's drivers, Robbie Buhl, who autographed a hat for Makayla. He was there are part of the Racing for Kids program.
While all this was going on, I got to talk to a nice woman from the hospital noted that we were from California, and told me about all the different places all over the world that patients come from, just to see Dr. Hertle, some as far as Bangladesh and Taiwan. Yup, that is why we came too.
I found all of that very exciting, but Makayla was a less enthusiastic because of her empty tummy. Once we got into admitting and to our room, things moved very quickly. Dr. Hertle came in to see us, and answered all of our last minute questions.
I'm not sure if he just had great notes from our last visit, but I felt like he really remembered everything about our visit in April and was excited to see my little girl again. After visiting with all the doctors and nurses that would be a part of her surgery, a very nice doctor took her in his arms, along with her favorite stuffed animal, Violet, and back into surgery.
It must have been all the friendly doctors and nurses, but I was remarkably calm for the first hour and a half of her surgery...after that the anxiety kicked in. I stress-ate a slice of sausage pizza, and two bags of peanut M&M's before Dr. Hertle came out and told me that everything went beautifully. He sat with me for a while and answered all of my questions. He said that there is only a five to ten percent chance that Makayla will ever need another surgery like this.
While Makayla was under, they also did her ERG. As we expected it confirmed the hypopigmentation in her retina. Along with her transillumination and nystagmus, it indicates that she has albinism just as Dr. Hertle and Dr. Alcorn (our pediatric ophthalmologist at Lucile Packard Children's Hospital at Stanford, back home) expected that it would confirm. The ERG also confirmed that everything else about her retina is normal and healthy. Dr. Herlte, says that the hypopigmination and transillumination are mild, which is good news.
About two hours after they took her away to surgery, I was able to join her in recovery. She was still very groggy from the medicine, and just wanted to snuggle. When she opened her eyes, they were perfectly still. I knew it was the medicine, or the shock of surgery, and that it wouldn't last, but it still make me cry.
Once we got back to our room at the Ronald McDonald House, she was starting to feel some pain. We got her loaded up on pain medicine and ate chocolate chip cookies for dinner. Except for a few breaks for juice, she slept pretty much all the way through to morning.
This morning she woke up happy and eager to eat. She has been a little tired, but is playful and silly. She hasn't needed anything more than Tylenol to manager her pain.
Originally we were going to be staying through next Friday because Dr. Hertle would be out of town and not able to see her until then. But during our talk after her surgery, he offered to come in after working in another city all day, to see her for post op today, so that we could get home much earlier. I am so grateful and we'll be heading home early tomorrow morning!
During her post op appointment Dr. Hertle was really please with her results so far. He says that her eyes are lining up very nicely, and noted that she is no longer using her chin up head tilt to see anymore. He said that we will see the best results in about two months from now. Her eyes should also no longer have the crying vampire look (His words, not mine. I think the doctor is a True Blood fan) by then.
He would like to see her again in the next six to nine months so that he can retest her eye movements and everything, to measure her progress.
I took a video of her nystagmus last night and will post it once we get home since the internet service here is so poor. I will continue to post updates on the state of her eyes, and her nystagmus as she recovers.
A huge thank you to everyone who has been so supportive. Not just our amazing close friends and family, but people that are friends of friends, and perfect strangers have been amazingly supportive and offered so many well wishes. This was very stressful for all of us and all the kind words have been so meaningful to us! THANK YOU!
The night before surgery was a rough one for me. I am so grateful to have a bed and the Ronald McDonald House, but man are they uncomfortable! I got roughly three hours of sleep that night. Something about sharing a twin air mattress with a one year old that makes for a terrible night's sleep!
Makayla slept pretty good, but couldn't eat that morning, due to her surgery, so she was extremely cranky, so I headed to the hospital early in hopes that the new surroundings would be enough of a distraction to keep her pleasant.
It's a good thing we got there early, because on our way in to the hospital, there was a Indy Car sitting out front and lots of important looking people. I paused for a minute to see what was going on, since my husband is a big race fan, and before I could even take it all in, they invited Makayla to sit in the race car and we got to meet one of Indy Car's drivers, Robbie Buhl, who autographed a hat for Makayla. He was there are part of the Racing for Kids program.While all this was going on, I got to talk to a nice woman from the hospital noted that we were from California, and told me about all the different places all over the world that patients come from, just to see Dr. Hertle, some as far as Bangladesh and Taiwan. Yup, that is why we came too.
I found all of that very exciting, but Makayla was a less enthusiastic because of her empty tummy. Once we got into admitting and to our room, things moved very quickly. Dr. Hertle came in to see us, and answered all of our last minute questions.
I'm not sure if he just had great notes from our last visit, but I felt like he really remembered everything about our visit in April and was excited to see my little girl again. After visiting with all the doctors and nurses that would be a part of her surgery, a very nice doctor took her in his arms, along with her favorite stuffed animal, Violet, and back into surgery.
It must have been all the friendly doctors and nurses, but I was remarkably calm for the first hour and a half of her surgery...after that the anxiety kicked in. I stress-ate a slice of sausage pizza, and two bags of peanut M&M's before Dr. Hertle came out and told me that everything went beautifully. He sat with me for a while and answered all of my questions. He said that there is only a five to ten percent chance that Makayla will ever need another surgery like this.
While Makayla was under, they also did her ERG. As we expected it confirmed the hypopigmentation in her retina. Along with her transillumination and nystagmus, it indicates that she has albinism just as Dr. Hertle and Dr. Alcorn (our pediatric ophthalmologist at Lucile Packard Children's Hospital at Stanford, back home) expected that it would confirm. The ERG also confirmed that everything else about her retina is normal and healthy. Dr. Herlte, says that the hypopigmination and transillumination are mild, which is good news.
About two hours after they took her away to surgery, I was able to join her in recovery. She was still very groggy from the medicine, and just wanted to snuggle. When she opened her eyes, they were perfectly still. I knew it was the medicine, or the shock of surgery, and that it wouldn't last, but it still make me cry.
Once we got back to our room at the Ronald McDonald House, she was starting to feel some pain. We got her loaded up on pain medicine and ate chocolate chip cookies for dinner. Except for a few breaks for juice, she slept pretty much all the way through to morning.
Originally we were going to be staying through next Friday because Dr. Hertle would be out of town and not able to see her until then. But during our talk after her surgery, he offered to come in after working in another city all day, to see her for post op today, so that we could get home much earlier. I am so grateful and we'll be heading home early tomorrow morning!
 |
| One Day Post Op |
He would like to see her again in the next six to nine months so that he can retest her eye movements and everything, to measure her progress.
I took a video of her nystagmus last night and will post it once we get home since the internet service here is so poor. I will continue to post updates on the state of her eyes, and her nystagmus as she recovers.
A huge thank you to everyone who has been so supportive. Not just our amazing close friends and family, but people that are friends of friends, and perfect strangers have been amazingly supportive and offered so many well wishes. This was very stressful for all of us and all the kind words have been so meaningful to us! THANK YOU!
Wednesday, August 1, 2012
Makayla's Nystagmus Prior to Surgery
Here is a video I took today of Makayla's eyes. This is one day before her surgery and one day before turning 20 months old. I took this video right after I woke her up from her nap. She was still really tired and groggy, and although, I have read that it's normal for nystagmus to get more pronounced when a person is tired, I've actually noticed that in Makayla's case, it seems to quiet it a bit.
Makayla's nystagmus can be very wild at times, and almost non-existant at others. I have noticed some improvement over the last month or so. I would say we have more "quiet" time than we do where it's wild.
Of course, as her eyes heal I'll post more videos for comparison.
Makayla's nystagmus can be very wild at times, and almost non-existant at others. I have noticed some improvement over the last month or so. I would say we have more "quiet" time than we do where it's wild.
Of course, as her eyes heal I'll post more videos for comparison.
24 Hours Until Surgery
We got here a full day early, because last time all of us were so out of it from the lack of sleep and the time chance that we had a hard time even remembering how to walk. This time has been no different. Makayla is really a terrible sleeper anyway, but she esspecially doesn't like sleeping anywhere that is not her own crib, in the room she shares with her twin brother. We got a good 3 hours of sleep before she woke up in a panic last night and moved into my bed....where I "slept" the rest of the morning with one eye open, in fear that she would roll right out of this tiny little bed. All in all, she got about six hours of her usual 11 hours of sleep, and I got 3, maybe 4. Compared to our trip last time, I would count that as a big success.
The twerpette is napping now, but she spent the morning making all kinds of friends. The staff here adores her and likes to get in hugs and cuddles every chance they get. We took a walk downtown morning to the Akron Children's Library. It's a huge library complete with a cafe, and gift shop. The kids area has toys to play with and a booth for putting on a puppet show. Makayla had entirely too much fun and squealed with delight all through the very quiet library.
I'll be getting her up now, and we'll spend some time playing outside on the Ronald McDonald House patio until it's time for dinner. Tonight we're having some chili and salad and cornbread made by the local Amish community.
Tuesday, July 31, 2012
Ready As We'll Ever Be
Here we are. Little ol' Akron, Ohio.
I hope getting here was the hard part.
Over the last week, Makayla came down with a 102 fever. I was so scared that we would have to cancel the surgery, but just 24 hours before leaving for Akron, she broke her fever, and we were back on!
I knew traveling with a toddler on my own would be a challenge. I certainly know what an amazing help my husband is. and not having him here would be rough. Our first flight from San Francisco to Philadelphia, was better than I expected. Although we didn't arrive without tears, Makayla was mostly happy and cooperative throughout the flight. I was lucky enough to be seating next to two model-skinny German ladies, which left me plenty of room to contort and stretch with Makayla in my lap. Our most embarrassing moments included when she threw a handful of pretzels at the man sitting behind us.
And then we got off our plane.
Once, I was off the plane, I realized that either my plane got in late, or it took the passengers more than a half hour to deboard...and I needed to sprint to our next flight, from Terminal C to Terminal F...which requires taking a an actual bus to get there. People paid no attention to the woman with a baby and a stroller, plowing over us and pushing us right out of their way. Once we were off the buss, I sprinted, with a backpack, a purse, a laptop, and toddler and a stroller from Gate 7 to Gate 37. Everyone one who knows me, knows what a joke that is. I hate running, and I'm definitely not fast!
Dripping sweat, like Dave Matthews in concert, I rushed to my gate, only to find out that there was a delay! Ok, actually that was great news. It was only a short delay, and that meant I have enough time to get Makayla a diaper change, clean myself up, and find some apple juice. No time for lunch though...and we didn't get breakfast either...
As soon as I get back to the gate, we start boarding. I'm happy to find that the person I'm sitting next to on this very teeny tiny plane, is quite possible, the nicest man I've ever met. He is showing me pictures of his two daughters and playing peek-a-boo with Makayla. Things are going great. Just after take off, my new friend heads to the bathroom, and by the time her gets back, Makayla is in full meltdown mode. It must have been her ears. She didn't have a problem on her five previous flights, but that, combined with way to many hours of confinement, and hunger was the perfect recipe for disaster. She kicked and screamed all the way until the pilot announced that we would be starting our final decent, at with point she finally passed out from exhaustion. I was that mom. I cried.
As the passengers exited the plane, I apologized, and every single passenger told me how beautiful Makayla was and that she did great. When I apologized they told me to stop and that they didn't mind a bit. The ones that were near by and heard me telling my seat neighbor the reason for our trip to Ohio, all told me how they wished the very best for his surgery and offered prayers. I burst into big sobby tears right there on the plane.
Ohio-ians are possibly some of the nicest people in the country.
Finally 13 hours into our adventure, we arrived at the Ronald McDonald House of Akron. Before I could even get all the way in the door, another mom here to see Dr. Hertle offered to help me to my room with my things (Another example of why Ohio-ians are the nicest people on the planet!). We talked for a bit, and I learned that her son recently had the same surgery Makayla will be having and I told her how excited I was to meet another mom who has been through what our family has been through. Looking at her son's blue eyes, it was the first time I have ever seen someone else with Nystagmus.
My goal is to keep this blog updated over the next 10 days that we spend in Akron, so you can see how surgery went, and how she is handling recovery. Tomorrow, i want to get a video posted of Makayla's nystagmus, as it is now, prior to surgery.
It's a little after eleven here now, but only 8:20 p.m. at home. I just got the little girl down to sleep, and I think I will be happy to join her.
Surgery is Thursday!
I hope getting here was the hard part.
Over the last week, Makayla came down with a 102 fever. I was so scared that we would have to cancel the surgery, but just 24 hours before leaving for Akron, she broke her fever, and we were back on!
I knew traveling with a toddler on my own would be a challenge. I certainly know what an amazing help my husband is. and not having him here would be rough. Our first flight from San Francisco to Philadelphia, was better than I expected. Although we didn't arrive without tears, Makayla was mostly happy and cooperative throughout the flight. I was lucky enough to be seating next to two model-skinny German ladies, which left me plenty of room to contort and stretch with Makayla in my lap. Our most embarrassing moments included when she threw a handful of pretzels at the man sitting behind us.
And then we got off our plane.
Once, I was off the plane, I realized that either my plane got in late, or it took the passengers more than a half hour to deboard...and I needed to sprint to our next flight, from Terminal C to Terminal F...which requires taking a an actual bus to get there. People paid no attention to the woman with a baby and a stroller, plowing over us and pushing us right out of their way. Once we were off the buss, I sprinted, with a backpack, a purse, a laptop, and toddler and a stroller from Gate 7 to Gate 37. Everyone one who knows me, knows what a joke that is. I hate running, and I'm definitely not fast!
Dripping sweat, like Dave Matthews in concert, I rushed to my gate, only to find out that there was a delay! Ok, actually that was great news. It was only a short delay, and that meant I have enough time to get Makayla a diaper change, clean myself up, and find some apple juice. No time for lunch though...and we didn't get breakfast either...
As soon as I get back to the gate, we start boarding. I'm happy to find that the person I'm sitting next to on this very teeny tiny plane, is quite possible, the nicest man I've ever met. He is showing me pictures of his two daughters and playing peek-a-boo with Makayla. Things are going great. Just after take off, my new friend heads to the bathroom, and by the time her gets back, Makayla is in full meltdown mode. It must have been her ears. She didn't have a problem on her five previous flights, but that, combined with way to many hours of confinement, and hunger was the perfect recipe for disaster. She kicked and screamed all the way until the pilot announced that we would be starting our final decent, at with point she finally passed out from exhaustion. I was that mom. I cried.
As the passengers exited the plane, I apologized, and every single passenger told me how beautiful Makayla was and that she did great. When I apologized they told me to stop and that they didn't mind a bit. The ones that were near by and heard me telling my seat neighbor the reason for our trip to Ohio, all told me how they wished the very best for his surgery and offered prayers. I burst into big sobby tears right there on the plane.
Ohio-ians are possibly some of the nicest people in the country.
Finally 13 hours into our adventure, we arrived at the Ronald McDonald House of Akron. Before I could even get all the way in the door, another mom here to see Dr. Hertle offered to help me to my room with my things (Another example of why Ohio-ians are the nicest people on the planet!). We talked for a bit, and I learned that her son recently had the same surgery Makayla will be having and I told her how excited I was to meet another mom who has been through what our family has been through. Looking at her son's blue eyes, it was the first time I have ever seen someone else with Nystagmus.
My goal is to keep this blog updated over the next 10 days that we spend in Akron, so you can see how surgery went, and how she is handling recovery. Tomorrow, i want to get a video posted of Makayla's nystagmus, as it is now, prior to surgery.
It's a little after eleven here now, but only 8:20 p.m. at home. I just got the little girl down to sleep, and I think I will be happy to join her.
Surgery is Thursday!
Thursday, July 26, 2012
Nystagmus Walk
If you follow our blog on facebook, you may have heard me mention the upcoming Nystagmus Walk a few times. But, in case you haven't, or if you want more information, here I go again!
In April 2013, the very first Nystagmus Walk will be held in Nashville, Tennessee. The goal of the walk is to raise money for the American Nystagmus Network, as well as raise awareness for what is a fairly common (1 in 1,000) visual impairment.
The Walk's organizer pointed out that "nystagmus" is recognized as a misspelled word in Microvsoft Word and Google. She would like to see that changed and to raise money for research. Some of the things that I hope raising awareness will do are:
The Nystagmus Walk has a facebook page. Please make sure that you visit the page and "like" it to get all the important updates! They are also currently working on a project where they need pictures of eyes. If you or someone in your family has Nystagmus, please take a photo of your eye, and one for each person in your family and email the pictures to nystagmus.eyes@yahoo.com to be included in the project!
In April 2013, the very first Nystagmus Walk will be held in Nashville, Tennessee. The goal of the walk is to raise money for the American Nystagmus Network, as well as raise awareness for what is a fairly common (1 in 1,000) visual impairment.
The Walk's organizer pointed out that "nystagmus" is recognized as a misspelled word in Microvsoft Word and Google. She would like to see that changed and to raise money for research. Some of the things that I hope raising awareness will do are:
- Make all ophthalmologists familiar with the condition, and it's possible causes and treatments.
- I would like for pediatricians to know enough about nystagmus that they never tell another mom nystagmus means that their child is probably blind.
- I want doctors to not assume that because a child is fair and blond, that the nystagmus is because of albinism
- I want people with nystagmus to be able to get treatment in their own community without having to travel.
- I want to know that Makayla will not be made fun of in school, because kids will already know what nystagmus is.
The Nystagmus Walk has a facebook page. Please make sure that you visit the page and "like" it to get all the important updates! They are also currently working on a project where they need pictures of eyes. If you or someone in your family has Nystagmus, please take a photo of your eye, and one for each person in your family and email the pictures to nystagmus.eyes@yahoo.com to be included in the project!
Friday, July 20, 2012
Welcome to Holland
Today, my friend Amy, of Through the Eyes of Liam shared a poem on her mommy blog, The Naptime Memos, which was written by a mom of a child with special needs on what it's like to parent a child with a disability.
I know that we are very lucky that Makayla's "disability" may never actually disable her. But this poem still hit my heart hard, and triggered those big weepy tears. It brought me back to those first few weeks after she was diagnosed with nystagmus, and they told us that she was probably blind. They sent us home to wait for appointments with specialists, and told us to look for her to track items in her visual field to determine if she could see or not.
I went home that afternoon and laid her on the couch and hovered over her. I made faces and waved my hands in front of her. I cried and told her how sorry I was. My tears litterally fell onto her cheeks as I looked at her.
While I waited for my husband to get home from work, I cried and convinced myself she couldn't see anything. I tried to imagine how I could possibly parent a child that would experience the world so differently from me. I wondered if her vision problems would cause Austin to be neglected. I wondered how I would treat my little girl the very same as her brother, if she couldn't see or do the things he did. I worried that she wouldn't be able to share in her father's love of baseball.
For weeks, all those fears raced through our heads over and over. We were convinced that she was entirely blind one hour and partially sighted, the next, until we finally had our meeting with Blind Babies in April 2011 when we finally, at four months old, were able to see Makayla track a red pom pom in front of her, and reach out for it. ...whats the opposite of a heart break? My heart soared and my eyes filled with tears. We didn't know how much she could see, but at least she would know my smile.
Like the poem, I still feel like our flight was rerouted, but I can honestly say, that the pain has gotten better. Sure, a huge part of that is that we now know Makayla sees better than we first expected, but a lot of it has to do with the amount of knowledge I have now, and the amazing connections I have make in the low vision community. I finally have my Holland guide book, and am finding my way around. I know what tools I need and how to get them, and I know some amazing locals. Holland, isn't so bad!
WELCOME TO HOLLAND
by
Emily Perl Kingsley.c1987 by Emily Perl Kingsley. All rights reserved. Borrowed from:
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I know that we are very lucky that Makayla's "disability" may never actually disable her. But this poem still hit my heart hard, and triggered those big weepy tears. It brought me back to those first few weeks after she was diagnosed with nystagmus, and they told us that she was probably blind. They sent us home to wait for appointments with specialists, and told us to look for her to track items in her visual field to determine if she could see or not.
I went home that afternoon and laid her on the couch and hovered over her. I made faces and waved my hands in front of her. I cried and told her how sorry I was. My tears litterally fell onto her cheeks as I looked at her.
While I waited for my husband to get home from work, I cried and convinced myself she couldn't see anything. I tried to imagine how I could possibly parent a child that would experience the world so differently from me. I wondered if her vision problems would cause Austin to be neglected. I wondered how I would treat my little girl the very same as her brother, if she couldn't see or do the things he did. I worried that she wouldn't be able to share in her father's love of baseball.
For weeks, all those fears raced through our heads over and over. We were convinced that she was entirely blind one hour and partially sighted, the next, until we finally had our meeting with Blind Babies in April 2011 when we finally, at four months old, were able to see Makayla track a red pom pom in front of her, and reach out for it. ...whats the opposite of a heart break? My heart soared and my eyes filled with tears. We didn't know how much she could see, but at least she would know my smile.
Like the poem, I still feel like our flight was rerouted, but I can honestly say, that the pain has gotten better. Sure, a huge part of that is that we now know Makayla sees better than we first expected, but a lot of it has to do with the amount of knowledge I have now, and the amazing connections I have make in the low vision community. I finally have my Holland guide book, and am finding my way around. I know what tools I need and how to get them, and I know some amazing locals. Holland, isn't so bad!
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