Well, this week will be five months since Makayla's eye muscle surgery, and it's been almost three months since an update! About Time I get to it, don't you think?
Life has been very busy for us in the last five months. The same month that Makayla had her surgery, our family made a big move from the San Francisco Bay Area, to Southern California and I have been working to start my own business. About the same time as our move Makayla started having a lot of tummy trouble. So bad that she wasn't sleeping though the night, and was consistently fussy. It's taken us several months to sort it all out, but we finally think we have it figured out and attributed to food allergies.
During my last update I said that I wasn't hugely impressed with the slowing of her eye movement, but that given all her food allergy problems, I wasn't sure if we were seeing the true results of her surgery, since we know that being tired and agitated can seriously impact the amount of movement in nystagmus.
Makayla has been eating allergy-free for just over three weeks now, and in this last week we have noticed the biggest change in her tummy and temperament....and not surprisingly, her eye movement!
I want to explain for other parents considering the surgery for their kids, that from what I understand, Makayla's nystagmus is unique, in the type of movement she has and the amount. I've talked to so many other moms who said after surgery there was nearly no movement at all.
Although I still think Makayla's nystagmus is noticeable, I feel the surgery was 100% worth while because of the improvement in her depth perception, and from a cosmetic perspective, the uncrossing of her eyes and the head tilt correction. And now that we are figuring out her food allergies, the moment has lessened quite a bit. I have even caught her watching the TV from the couch recently, instead of right in front of the TV! It also recently occurred to me, that I haven't had anyone ask about her eyes since the surgery. We used to get stopped in the store at least once a week by someone asking about her eyes.
Some other exciting new is that we have been accepted into a research study at NIH on albinism. Last I updated, we were supposed to speak with a geneticist at Stanford, but because of our move, we didn't make it, but we probably wouldn't have gotten to have any actually testing since it's almost never covered by insurance and VERY expensive. Instead, at the end of this month, we'll be heading to Washington DC to take part in the research study. They will do genetic testing, and some vision testing. It will be really interesting to see the results of those, since it will be her first tests since her surgery!
As Makayla Sees It
Wednesday, January 2, 2013
Wednesday, October 3, 2012
Two Months Post Eye Muscle Surgery
Yesterday was exactly two months since Makayla's eye muscle and strabimus surgery! We can still expect her eyes to improve over the next several years, as is typical with nystagmus, with or without the help of surgery. However, the two month mark is significant because it means her healing is complete and the change to her nystagmus, as a result of the surgery, should be most apparent now.
Here are the videos for comparison:
The night before surgery
One week post op
Two months post op, fully healed
The videos aren't as good a representation of the change in her nystyagmus as I wish they were. The first video was taken the day before surgery, after a very long and exhausting trip from San Francisco to Ohio, that left her tired and in a "spaced out" state, which significantly quieted her nystagmus.
From the videos, the most notable difference is the uncrossing of her eyes. When I look back at pictures and video, I am shocked that several doctors told us her eyes were not even crossed. That has probably been the most significant change in her vision also, as he biggest area of improvement seems to be her depth perception.
From the first week post op, to her most recent video (taken today), you probably see that her nystagmus actually looks a bit more wild, and I would definitely say that is accurate. Over the last week, maybe two, we have notice quite a bit of pick up in her nystagmus, whereas, in those first two weeks ofter surgery, it was almost unnoticeable at all. I am hoping the increase in the movement is a result of the stress of being in a new environment. Since we moved her, Makalya have been surrounded by new people and environment and has been showing some serious signs of anxiety. She has also had an ongoing upset stomach that we are trying to figure out. Is it the stress, a food allergy? We aren't sure, but something like that may very likely cause her nystagmus to act up. As she calms down over the next few months and we sort out the cause of her stomach issues, I will have to take another video of her nystagmus to share to compare. We will also be going back to Ohio, next year, so that Dr. Hertle can preform her tests again, which will give us a better idea of how much her vision has actually improved.
Here are the videos for comparison:
The night before surgery
One week post op
Two months post op, fully healed
The videos aren't as good a representation of the change in her nystyagmus as I wish they were. The first video was taken the day before surgery, after a very long and exhausting trip from San Francisco to Ohio, that left her tired and in a "spaced out" state, which significantly quieted her nystagmus.
From the videos, the most notable difference is the uncrossing of her eyes. When I look back at pictures and video, I am shocked that several doctors told us her eyes were not even crossed. That has probably been the most significant change in her vision also, as he biggest area of improvement seems to be her depth perception.
From the first week post op, to her most recent video (taken today), you probably see that her nystagmus actually looks a bit more wild, and I would definitely say that is accurate. Over the last week, maybe two, we have notice quite a bit of pick up in her nystagmus, whereas, in those first two weeks ofter surgery, it was almost unnoticeable at all. I am hoping the increase in the movement is a result of the stress of being in a new environment. Since we moved her, Makalya have been surrounded by new people and environment and has been showing some serious signs of anxiety. She has also had an ongoing upset stomach that we are trying to figure out. Is it the stress, a food allergy? We aren't sure, but something like that may very likely cause her nystagmus to act up. As she calms down over the next few months and we sort out the cause of her stomach issues, I will have to take another video of her nystagmus to share to compare. We will also be going back to Ohio, next year, so that Dr. Hertle can preform her tests again, which will give us a better idea of how much her vision has actually improved.
Thursday, September 20, 2012
New Teachers, New Therapies
On Tuesday, we had the coordinator for our local early intervention services come out to our home with Makayla's new teacher. They went over all her usual background info and we read over the paper work from Makayla's old teachers, and they did a quick assessment to gauge what progress she has made in the month that we have been here, and since she was last seen by her old teachers.
According to her assessment, she is is falling right in line with her adjusted age (based on her prematurity: 19 1/2 to 20 months) for her gross and fine motor skills, but is more in line with a child that is 14 or 15 months when it comes to speech. They said that over the next six to twelve months they would like to see her gross and fine motor skills catch up with her actual age, and we will begin speech therapy as well. We are also working to get Austin speech therapy, and it looks like we'll be able to combine his services with the ones Makayla is already getting, so we'll have the same teachers and either a longer session, or more frequent sessions.
I'm happy to share that I really love her new teacher. She calm, and kind and patient. She was good at getting my very shy little girl to interact with her and feel comfortable. I still don't think anyone can possibly replace the wonderful teachers we had before (yup, crying again!), but I feel confident that she will give Makayla everything she needs and be someone I'll enjoy having in my home each week.
From the sounds of it, the new town we live in has amazing schools. Living here, Makayla will have services available to her that are a lot harder to get in any of our neighboring towns. Something that will be new for us, is that starting at about 24 months they like to bring twerp and mom into a class room environment (I think they said once a month) for new experiences and social interaction.
We'll officially start our sessions next week. I am looking forward to getting to know Makayla's new teacher better, and see what new things she teaches us.
According to her assessment, she is is falling right in line with her adjusted age (based on her prematurity: 19 1/2 to 20 months) for her gross and fine motor skills, but is more in line with a child that is 14 or 15 months when it comes to speech. They said that over the next six to twelve months they would like to see her gross and fine motor skills catch up with her actual age, and we will begin speech therapy as well. We are also working to get Austin speech therapy, and it looks like we'll be able to combine his services with the ones Makayla is already getting, so we'll have the same teachers and either a longer session, or more frequent sessions.
I'm happy to share that I really love her new teacher. She calm, and kind and patient. She was good at getting my very shy little girl to interact with her and feel comfortable. I still don't think anyone can possibly replace the wonderful teachers we had before (yup, crying again!), but I feel confident that she will give Makayla everything she needs and be someone I'll enjoy having in my home each week.
From the sounds of it, the new town we live in has amazing schools. Living here, Makayla will have services available to her that are a lot harder to get in any of our neighboring towns. Something that will be new for us, is that starting at about 24 months they like to bring twerp and mom into a class room environment (I think they said once a month) for new experiences and social interaction.
We'll officially start our sessions next week. I am looking forward to getting to know Makayla's new teacher better, and see what new things she teaches us.
Wednesday, September 12, 2012
Recovering + New Environments
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| Exactly One Month Post Nystagmus Surgery - 9.2.12 |
It's been over a month now, since Makayla's surgery, and obviously we are long overdue for an update on her recovery.
Makayla's recovery has been as smooth as can be. Since those first two weeks, her eyes have been totally clear of any redness, with the exception of just the slightest bit in the very corners, which continues to fade a little bit more every day.
We noticed right away that she stopped using her old, head back tilt, null point, and that her eyes are working together now.
Before the surgery, the biggest challenge for Makayla, visually, was her depth perception. Early on, she would simply not go beyond a certain point if she didn't know if there was a step. I remember being a friend's house when she first learned to walk, and she was happily walking in the living room with the rest of us, but would not follow her brother into the next room where the floor changed from hard wood to tile, because she would not tell if there was a step. Something like this would make her very frustrated and anxious. However, eventually, she learned that she would turn around and crawl over it backwards if there was a step and she would do this over everything, from cracks in the sidewalk, to a simple doorway. But not since surgery!
Three weeks ago, we moved to a new house now, in a new city, so she has been stripped from all her learned familiar places, and yet she is braver and more coordinated than she ever was in the old house and has a new found confidence. In the three weeks that we have lived here, I have not seen her get down and crawl over an area once. We have a small step from our house to our garage, and she proudly steps out without hesitation.
October 2, 20102, will mark the two month period since her surgery. That is when the doctor said we should see the full result of surgery (although, her vision will likely improve more with age). I will post a new video then to compare to her pre-surgery video.
Tuesday, August 14, 2012
A Difficult Goodbye
Today, Makayla's Vision and Physical therapist came for the last time. There will be new therapists when we get to the new house in Southern California, but I find it hard to believe that we will find a pair as amazing as these two warm, kind, loving, generous and smart women.
I managed to keep the tears at bay during the visit, but they are flooding in now.
I have gone on an on about these wonderful ladies in the past and their impact on our lives, but now that we have had our last visit, I can't stop thinking about all the progress that they have helped Makayla to make in the last year and a half. When they started visiting out home, Makayla was just four months old, and she could still hardly hold her head up and she was keeping her arms up in the air to balance herself. It was only a few weeks after we had been visited by the Blind Babies group, and had just learned that Makayla even could see at all.
Within a few short months, Makayla was holding her head up and not using her arms anymore. She had started "army crawling" and we were learning all kinds of things about the way that Makayla sees. With each visit she made huge strides and we were coming to learn that she actually sees quite well.
But, they have been so much more than therapists and teachers. They have been friends, a support team and an extra set of moms. They helped Makayla to take her very first steps and we all cried together as we scrambled for the video camera. They have talked me through some of my hardest weeks and stages as a new twin mom. They taught me to sing songs other than the ABC's, and their hand motions.
They have given me amazing tools, and taught me wonderful lessons. They made me feel normal when I was at the end of my rope. They laughed with me, they have cried with me. They taught me the questions to ask, and guided me down all the right roads.
I am so grateful for everything, and will miss them so much. Although it won't be the same to not see them on a regular basis anymore, I hope that we can stay in touch and they and are forever a part of our lives.
I managed to keep the tears at bay during the visit, but they are flooding in now.
I have gone on an on about these wonderful ladies in the past and their impact on our lives, but now that we have had our last visit, I can't stop thinking about all the progress that they have helped Makayla to make in the last year and a half. When they started visiting out home, Makayla was just four months old, and she could still hardly hold her head up and she was keeping her arms up in the air to balance herself. It was only a few weeks after we had been visited by the Blind Babies group, and had just learned that Makayla even could see at all.
Within a few short months, Makayla was holding her head up and not using her arms anymore. She had started "army crawling" and we were learning all kinds of things about the way that Makayla sees. With each visit she made huge strides and we were coming to learn that she actually sees quite well.
But, they have been so much more than therapists and teachers. They have been friends, a support team and an extra set of moms. They helped Makayla to take her very first steps and we all cried together as we scrambled for the video camera. They have talked me through some of my hardest weeks and stages as a new twin mom. They taught me to sing songs other than the ABC's, and their hand motions.
They have given me amazing tools, and taught me wonderful lessons. They made me feel normal when I was at the end of my rope. They laughed with me, they have cried with me. They taught me the questions to ask, and guided me down all the right roads.
I am so grateful for everything, and will miss them so much. Although it won't be the same to not see them on a regular basis anymore, I hope that we can stay in touch and they and are forever a part of our lives.
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| Little thank you gifts for our Vision and Physical Therapists |
Thursday, August 9, 2012
1 Week Post Op
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| One week post eye muscle surgery |
Today is one week since Makayla's eye muscle surgery to improve her nystagmus and correct her stabismus (lazy eye).
I am really impressed with the amount of healing she has done in just one week. After surgery, the doctor told us that it could take 6 to 8 weeks for the blood in her eyes to clear up and to really see the results of the surgery, but the blood in the whites of her eyes is significantly reduced now, and just yesterday, I started to really see the difference in the movement of her eyes.
At this point Makayla seems to be in no pain. I would actually say, she seemed to no longer be in pain by day three or four, but we have continued to give her tylenol every four hours to be sure. however, yesterday afternoon, we gave her, her last dose of tylenol, and she hasn't had any since. She slept all the way through the night and woke up a happy little girl.
We have noticed that she is exceptionally tired though. This girl normally never sleeps, but since the surgery, she could probably stand to return to two daily naps and still get a full night's sleep.
The comments and stares I wrote about last time, continue to bother me, but it just makes me grateful that we did the surgery now, before she's aware of what other people think of her.
On a much happier note though, while I was shopping with my sister-in-law yesterday, we stopped into a store that I have visited with the kids a handful of times, and one of the ladies that worked there asked of Makayla's eyes were okay, since she noticed the bloody corners of her eyes, and my sister-in-law explained that she recently had surgery on her eyes. Immediately the lady remember her as the girl who's eyes moved a lot back and forth, and pointed out a noticeable difference in the movement. My sister-in-law actually had to point out to her that Makayla's eyes still to move, but thanks to the surgery, they will hopefully move a lot less from now on. That felt pretty good!
Monday, August 6, 2012
Home Sweet Home
Since Dr. Hertle was kind enough to come into his office on a day when he was working out of town, just to see Makayla for her follow up appointment, we were able to get home almost a full week early!
Our flight out of Akron left really early on Saturday morning, and we had a flight delay at our layover in Denver, so it was a really long trip home, but Makayla was wonderful. Even though she showed no signs of being in pain, I kept her on Tylenol and Codine to keep the pain at bay throughout out flight, and she slept the whole way home.
I have to admit though, it was had for me to handle the stares and reaction we got from strangers about Makayla's eyes. One woman pulled her child away from us and asked if Makayla had a bad case of pink eye. But, most people said nothing at all and just stared. One woman started the whole time she walked towards us, and then turned around and stared even as she passed us. The whole way to Akron every single person told me how adorable Makayla was and what a sweetheart she is, but it broke my heart to get such the opposite reaction on the way home. I know that her eyes are a bit startling...but she is still my beautiful, sweet, fun baby girl!
There was one person that was excited to see us though. When we were waiting to board our second flight, I was kneeling down with Makayla when I heard tennis shoes squeeking on the tile airport floors. When I looked over to see, it was this adorable little girl running our direction and her mom and sister right behind her. She was smiling and ran right up to Makayla to say, "hi." When her mom came up, I quickly explained that Makayla had just had surgery, so that she wouldn't be startled by her eye, and she asked about her surgery. I explained that Makayla has something that causes here eyes to always jerk back and forth, and she asked if it was nystagmus, and pointed out that her daughter, the one that came running up to meet Makayla, had nystagmus too.
My flight was boarding so we only had a few minutes to chat, but I explained how we had traveled from California to Ohio, just for this surgery and to see Dr. Hertle, and she was very interested. She said, "Obviously we were meant to meet today" and she took my phone number. I hope she calls and we can share some information!
Now that we are home and trying to get back to our normal routine, I realize that Makayla is probably in more pain that I realized before. We are keeping Tylenol in her, every four hours, and codine at night when the pain gets a little worse, and to help everyone get a little more sleep.
As of this morning, four days post op, her left eye is noticeably better, and the blood in her right eye (which was her lazy eye) seems to have spread a little but is not as dark, this morning. The swelling on her lids keeps going down, but her dad pointed out this morning that the top lids are still swollen enough to give her a "sleepy" look. All in all, I'm pretty impressed with how much healing we are seeing in just one week!
Our flight out of Akron left really early on Saturday morning, and we had a flight delay at our layover in Denver, so it was a really long trip home, but Makayla was wonderful. Even though she showed no signs of being in pain, I kept her on Tylenol and Codine to keep the pain at bay throughout out flight, and she slept the whole way home.
I have to admit though, it was had for me to handle the stares and reaction we got from strangers about Makayla's eyes. One woman pulled her child away from us and asked if Makayla had a bad case of pink eye. But, most people said nothing at all and just stared. One woman started the whole time she walked towards us, and then turned around and stared even as she passed us. The whole way to Akron every single person told me how adorable Makayla was and what a sweetheart she is, but it broke my heart to get such the opposite reaction on the way home. I know that her eyes are a bit startling...but she is still my beautiful, sweet, fun baby girl!
There was one person that was excited to see us though. When we were waiting to board our second flight, I was kneeling down with Makayla when I heard tennis shoes squeeking on the tile airport floors. When I looked over to see, it was this adorable little girl running our direction and her mom and sister right behind her. She was smiling and ran right up to Makayla to say, "hi." When her mom came up, I quickly explained that Makayla had just had surgery, so that she wouldn't be startled by her eye, and she asked about her surgery. I explained that Makayla has something that causes here eyes to always jerk back and forth, and she asked if it was nystagmus, and pointed out that her daughter, the one that came running up to meet Makayla, had nystagmus too.
My flight was boarding so we only had a few minutes to chat, but I explained how we had traveled from California to Ohio, just for this surgery and to see Dr. Hertle, and she was very interested. She said, "Obviously we were meant to meet today" and she took my phone number. I hope she calls and we can share some information!
Now that we are home and trying to get back to our normal routine, I realize that Makayla is probably in more pain that I realized before. We are keeping Tylenol in her, every four hours, and codine at night when the pain gets a little worse, and to help everyone get a little more sleep.
As of this morning, four days post op, her left eye is noticeably better, and the blood in her right eye (which was her lazy eye) seems to have spread a little but is not as dark, this morning. The swelling on her lids keeps going down, but her dad pointed out this morning that the top lids are still swollen enough to give her a "sleepy" look. All in all, I'm pretty impressed with how much healing we are seeing in just one week!
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| 4 Days Post Op |
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