Over the last few weeks we've settled into a state of normalcy with Jesse. His nystagmus no longer consumes our every waking thought and most days we don't even think about it. He's just our sweet little Jesse who is probably the happiest baby ever. Seriously, this kid is so happy.
Well, last week it came time for us to focus on the eyes again. A few weeks back we were fortunate enough to get an appointment with Dr. Lingua and it was now time for us to make the trek down to LA see him.
Our appointment was set for the Wednesday before Thanksgiving and we were very grateful to be able to get in to see him with only a few weeks notice, especially since he only operates on kids over 2 yrs and Jesse is only 6 months. His assistant, Susan, is wonderful and so understanding.
Also while we were there, another family from one of my FB groups (American Nystagmus Network) happened to also be visiting with their daughter to get this very procedure done. Her little daughter was having her fourth eye surgery and we happen to have our appointment at the same time as their follow up. I cannot thank them enough for talking to us and sharing stories like we were life long friends. Understanding what they went though gave us so much insight into what we may encounter someday with Jesse.
Our appointment with Dr. Lingua was fairly short, but gave us confirmation on what we had all thought but could never say for sure, and that is that the 'hardware' that makes up Jesse's eyes looks great. Optic nerve, fundus and retina all look good and he has no refractive error. Dr. Lingua agreed with our opinion not to get an MRI at this time and he did not detect any optical albinism. If it weren't for the movement he would probably have great vision and even with the movement his vision probably won't be that bad. Which we can already tell with how active Jesse is.
Though a short visit, we were glad to have someone who is so highly regarded look at Jesse's eyes and we will probably still follow through with our plans to see Dr. Hertle sometime in the new year. Though Jesse may have surgery someday, it will most likely be to dampen the movement to help him in social settings more than anything. And though we aren't out of the woods yet, we are really so grateful to hear that his vision looks decent and to watch his development progress each day.
Speaking of development, make the jump HERE to read all about our trip to LA and the recent milestones that Jesse and Max are hitting.
For Part VII click here: A trip to see Dr. Hertle
and HERE to start from the beginning.
Sunday, November 29, 2015
Monday, November 16, 2015
Two for Tuesday
Last tuesday we visited San Francisco Audiology to have Jesse's hearing checked. We didn't really notice any issues at home, but our daycare teachers mentioned that he doesn't respond to his name like the other kids do. We figured this was either because he doesn't care (like his brother), or because he can't see far enough to make it worth picking up his head to look.
Either way, we knew if there was any concern we had to get it checked out, so I made an appointment with a pediatric audiologist in SF, Dr. Dobbs.
Dr. Dobbs was great. He took us in right away and was great with Jesse. First we did a few inner ear tests to confirm a lack of fluid in the middle ear. Both tests went great and gave us confidence there wasn't fluid in the lungs or an inner ear infection.
Next he left the room and would speak to Jesse through a set of speakers, either left or right, to see if he could get a reaction from him. We knew this test would be difficult because Jesse is only 6 months old, but Dr. Dobbs was very patient and even took a break in the middle of testing to give Jesse a chance to 'reset.'
Though he didn't react to all the sounds, we do know that he would react when Dr. Dobbs spoke at any volume, but he didn't seem to care about the beeps or sounds. At this point it is hard to say if that's because of a hearing issue at those frequencies or because he's a 6 month old who doesn't care. We will go back in January to revaluate, but this was a great start and gave us a lot of reassurance.
After taking some time to have a nice lunch out in the city, we headed back home to catch Jesse's second appointment of the day. Today Jesse was meeting Nicole and another lady from the Regional Center, Early Start program.
A few weeks ago we'd had Jesse evaluated with some ladies from the school district, but they specifically focus on his vision and not overall development.
The ladies from the Regional Center focused on Jesse's development and ran through a series of activities to gauge his level.
Some activities involved finding a cheerio on a placemat, picking up red blocks with both hands, passing blocks from hand to hand, anticipating being pulled up when laying face up and the arms are pulled, shaking a little bell, and a few others.
Well, Jesse did great and he doesn't qualify for services! Woo hoo, good job Jesse! (In order to qualify you have to be at least 33% deficient in one area of development). While I haven't read the full report yet, the lady told me that he's passing all his 24 week milestones and he's even meeting some of the 28 week ones. And while we are ecstatic that he is being denied services, we will have him reevaluated in about 6 months to make sure he doesn't develop a need for them in the future.
So we are now feeling more confident in Jesse's development which means we've been able to spend the last week or two just relaxing and moving into a "normal" schedule of raising two little boys! Ha!
Next wednesday is a meeting with Dr. Lingua so stay tuned to see how that full battery of tests go.
Part VII: A trip to see Dr. Lingua
Wednesday, October 21, 2015
Every baby is unique
The past month has been a roller coaster of emotions and unknowns for our family. We've been taken on a journey that we didn't anticipate, but along the way we've learned to cope and breathe and realize that everything is going to be okay. Life is wonderful and we have an amazing family with two beautiful happy little boys who mean the world to us.
As we are now more informed, better educated, and more reassured, we feel ready to share our story with you all. Join us on our journey.
Part I: The Day Our World Turned Upside Down
As we are now more informed, better educated, and more reassured, we feel ready to share our story with you all. Join us on our journey.
Part I: The Day Our World Turned Upside Down
The best of the worst
Over the last few weeks Jesse has continued to hit some key milestones in his development. Like most parents, we are of course thrilled to see our little boy grow and develop, but given Jesse's nystagmus and unknown visual acuity, we are even more excited that his development is progressing so well.
Over the last week Jesse has started to sit by himself for a few seconds, reach out and grab toys with both hands, scoot across the floor, and even balance while standing against a couch. All of these things tell us that though his eyes may be moving his visual acuity is good.
How good? Well, we still won't know that for a while. But at least good enough to be developmentally on track.
Additionally, this week we were visited by a vision specialist who is a teacher with the Oakland Unified School District and a program coordinator through California's Early Intervention Program. This program is designed to help young children ages 0 - 36 months who have a visual impairment and get them started with vision therapy as early as possible. This is especially key since a child's vision develops so much within the first year or two of life.
The two ladies who visited were very pleased with Jesse's development and found that he was actually exceeding some of the typical milestones that they would expect from a 5 month old. Phew! In fact, he is doing so well that we collectively decided that dedicated vision therapy would be something that would not really benefit him at this time. Though we will continue to monitor his progress and meet with them again in about 5-6 months, we are happy that his nystagmus doesn't seem to be slowing him down at all.
Over the next few months Jesse will continue to develop and we will monitor his progress. In November we will visit Dr. Lingua in LA and around February we will probably visit Dr. Hertle in Ohio to discuss options. Though we will visit these doctors to understand what they can offer, most likely we hold off on any major decisions until Jesse is older and we can see how much the nystagmus calms down on its own, especially if it doesn't appear to be hindering him at all. We will also have a follow up appointment with Dr. Orel-Bixler in March along with a follow up with the ladies from Early Intervention.
One thing that drives me crazy is how everyone we meet with tells us "there is no cure." I suppose that is true, but it really bothers me how many people aren't even open to the idea of surgery. I know surgeries are risky but such close mindedness, especially in California, displeases me. As a parent I will consider every option before closing any doors.
As we take this wait and see approach, we are optimistic about the future and excited to watch Jesse grow and develop each day!
Part VI: Two For Tuesday
Over the last week Jesse has started to sit by himself for a few seconds, reach out and grab toys with both hands, scoot across the floor, and even balance while standing against a couch. All of these things tell us that though his eyes may be moving his visual acuity is good.
How good? Well, we still won't know that for a while. But at least good enough to be developmentally on track.
Additionally, this week we were visited by a vision specialist who is a teacher with the Oakland Unified School District and a program coordinator through California's Early Intervention Program. This program is designed to help young children ages 0 - 36 months who have a visual impairment and get them started with vision therapy as early as possible. This is especially key since a child's vision develops so much within the first year or two of life.
The two ladies who visited were very pleased with Jesse's development and found that he was actually exceeding some of the typical milestones that they would expect from a 5 month old. Phew! In fact, he is doing so well that we collectively decided that dedicated vision therapy would be something that would not really benefit him at this time. Though we will continue to monitor his progress and meet with them again in about 5-6 months, we are happy that his nystagmus doesn't seem to be slowing him down at all.
Over the next few months Jesse will continue to develop and we will monitor his progress. In November we will visit Dr. Lingua in LA and around February we will probably visit Dr. Hertle in Ohio to discuss options. Though we will visit these doctors to understand what they can offer, most likely we hold off on any major decisions until Jesse is older and we can see how much the nystagmus calms down on its own, especially if it doesn't appear to be hindering him at all. We will also have a follow up appointment with Dr. Orel-Bixler in March along with a follow up with the ladies from Early Intervention.
One thing that drives me crazy is how everyone we meet with tells us "there is no cure." I suppose that is true, but it really bothers me how many people aren't even open to the idea of surgery. I know surgeries are risky but such close mindedness, especially in California, displeases me. As a parent I will consider every option before closing any doors.
As we take this wait and see approach, we are optimistic about the future and excited to watch Jesse grow and develop each day!
Part VI: Two For Tuesday
A second opinion
Before we even met with our first optometrist, I knew I would want a second opinion. I did a bit of research and found that the UC Berkeley Optometry School has a facility on campus that has a specific infant/toddler clinic. Perfect.
Fast forward 3 weeks and today was our appointment with Dr. Deborah Orel-Bixler.
First of all, let me just say that she is AMAZING. The facility is amazing, the doctor was amazing, overall I couldn't recommend it more. What really stunned me the most was when she told me that they book a full hour with each patient. Yes, an HOUR. Wow, what service.
After going over some family history she got down to business. Instantly we knew this was going to be much different from our first appointment with Dr. Dimiceli at Childrens Hospital.
Dr. Orel-Bixler started with some flash cards. She held up two large cards, one white, one white with a black smiley face). She then watched Jesse's eyes to see if he would fixate on the one with the smiley face. Of course fixate is a strong word, more like pause to notice, which basically indicated that he could see the image. She continued this with the smiley faces going from black to various shades of lighter and lighter gray. Jesse did good on this test.
After that was the color test. This was a little more difficult since babies don't always have great color perception at this age anyway. She gave him a cautious passing on this test as well, but said we would need to do it again at 9 months so we could be sure.
The next test involved a large card with a simple contrasted picture either near the top or bottom of the page. She would show it to Jesse to see where his eyes went before looking herself. She said this kept her honest since she could judge his eyesight without first knowing where they should be going.
Jesse did good, but was quickly getting bored of this game.
We then moved on to some peripheral vision tests with some bright lights, which he did great at. She also darkened the room and shined a light near his eyes to see if the brightness would bother him. It didn't, which is good.
She then moved onto what you would think would be part of a normal eye exam. She looked in his eyes at his retinas for discoloration, then she dilated his eyes and looked at his optic nerves and for any refractive error. These were the same tests that Dr. Dimiceli did too but Dr. Orel-Bixler seemed just so much more at ease doing them. She sang to him and just really kept him calm. So much so that she was able to get a really good look at his eyes.
After all the testing we were able to come to a few conclusions.
He probably does not have leber's amaurosis (effects the retina) or achromatopsia (color blindness). His optic nerves look great, so his nystagmus probably isn't caused by optic nerve hypoplasia (OHN - underdeveloped optic nerves) either.
That was all wonderful news to hear.
After looking at his eyes for a while, she's also probably ruling out ocular albinism, though we are still cautious about that as it is early to rule this out without doing an ERG, but more on that later. He also has no refractive error, so at this point he doesn't need glasses.
Remember, decreased visual acuity caused by nystagmus cannot be fixed with glasses unless there is a refractive error. There is some talk about using contact lenses to calm the eye from moving or glasses with prisms or negative lenses to also help the nystagmus, but that's not the same as trying to fix a refractive error, and from my understanding it's only helpful in certain cases. For example, the negative lenses may help bring objects that are farther away seem closer so that it is easier for him to focus on them; convergence they call it. But at this point it isn't something we are looking at because it's a bit too early to tell if they would help, especially since we haven't yet seen if he will develop a null point and where that might be.
Note - a null point is the point where the eyes will naturally gravitate toward where he can see best. Often this is the point where the eyes are most calm and don't move as much. It can result in severe head tilt depending where the null point is. This is where surgery may really help.
The doctor also looked for signs of strabismus (lazy eye). He doesn't appear to have this, however kids under 6 months old often have trouble coordinating their eyes, so eye misalignment is common at this age and makes it difficult to say for sure if strabismus is present. She also ruled out any type of transillumination defects.
So at this point it is most likely that Jesse has what they call congenital motor nystagmus - CN, also known as ISN (infantile nystagmus) with no real underlying condition. His nystagmus is pendular in nature (side to side) and seems to travel less as objects get closer to his face with smaller faster movements when he tries to fixate on an object (fixation nystagmus).
If he has to have nystagmus, this diagnosis has the best chance for good vision. We are hoping for something better than 20/50 but it's far too soon to tell.
Most likely he will have trouble with stereopsis or fine depth perception. Things like concrete curbs or all beige stairs may give him trouble. However, this is only one factor that aids us with depth perception and he has all the other depth perception indicators, so he should quickly learn to overcome this setback.
One test that we did not do today was an ERG or electroretinogram. The ERG is a recording of the bioelectric potential of the eye. This test could be done to fully rule out some of the conditions mentioned above, specifically issues with the retina's and optic nerves. However there are some risks. Should Jesse cooperate the test could go fine, but if he doesn't they would need to sedate him, and that always carries risks, especially at his age. At this point we are on the fence and will probably spend the next few days/weeks talking it out before deciding if we want to get that test done now. Having the information would definitely make us feel better, but at the same time it wouldn't change any course of treatment at this point, so it's a tough call, especially given the results from today's tests.
We may also do a VEP (visual evoked potential) test in the future as well, but again he is too young right now. Maybe at 9 months or a year. An MRI is also an option, to rule out any neurological issues, however unless his weight drops off his curve or he presents other developmental issues we will probably hold off as the MRI definitely requires sedation.
For me, today was amazing.
It's all about getting him as much help, testing, diagnosis, visual stimulation, vision therapy, and surgery (if needed) for him to lead the most normal life that he can. I would love to see him be able to drive someday, something that most of us take for granted.
I can't tell you how much Dr. Orel-Bixler made us feel at ease and better about Jesse's condition. I know it's going to be different than what we had expected for our little boy, but it's going to be okay. Some days will be harder, some easier, both for him and I. I know that there will still be many sleepless nights in my future, staying up late to research the next greatest treatment option or worrying over something that I'm sure I'm making a bigger deal out of than he ever will. But as his mom, that's my job. My job is to worry without him ever knowing.
Next month we will have a follow up apt with Dr. Demiceli and one at 9 months with Dr. Orel-Bixler. We were also able to get a consultation appointment in LA with Dr. Lingua just before Thanksgiving. Since we will already be there, we figured it wouldn't hurt to take the time to see him and learn more about the procedures that he performs. We already know that he won't do his procedure before Jesse is 2 years old and his null point is established (if any), but if it gives us an opportunity to learn more about his treatment options then the appointment is worth it. And of course we are on the wait list for Dr. Hertle, most likely sometime in January or February.
One thing I mentioned to Jeremy tonight is how lucky we are that we can just focus so much energy into care and research for Jesse. For so many people they would never have the opportunity to see 2 doctors within a month, to drive to LA, to fly to Ohio, to get a 2nd, 3rd, 4th opinion.
Part V: The Best of the Worst
Fast forward 3 weeks and today was our appointment with Dr. Deborah Orel-Bixler.
First of all, let me just say that she is AMAZING. The facility is amazing, the doctor was amazing, overall I couldn't recommend it more. What really stunned me the most was when she told me that they book a full hour with each patient. Yes, an HOUR. Wow, what service.
After going over some family history she got down to business. Instantly we knew this was going to be much different from our first appointment with Dr. Dimiceli at Childrens Hospital.
Dr. Orel-Bixler started with some flash cards. She held up two large cards, one white, one white with a black smiley face). She then watched Jesse's eyes to see if he would fixate on the one with the smiley face. Of course fixate is a strong word, more like pause to notice, which basically indicated that he could see the image. She continued this with the smiley faces going from black to various shades of lighter and lighter gray. Jesse did good on this test.
After that was the color test. This was a little more difficult since babies don't always have great color perception at this age anyway. She gave him a cautious passing on this test as well, but said we would need to do it again at 9 months so we could be sure.
The next test involved a large card with a simple contrasted picture either near the top or bottom of the page. She would show it to Jesse to see where his eyes went before looking herself. She said this kept her honest since she could judge his eyesight without first knowing where they should be going.
Jesse did good, but was quickly getting bored of this game.
We then moved on to some peripheral vision tests with some bright lights, which he did great at. She also darkened the room and shined a light near his eyes to see if the brightness would bother him. It didn't, which is good.
She then moved onto what you would think would be part of a normal eye exam. She looked in his eyes at his retinas for discoloration, then she dilated his eyes and looked at his optic nerves and for any refractive error. These were the same tests that Dr. Dimiceli did too but Dr. Orel-Bixler seemed just so much more at ease doing them. She sang to him and just really kept him calm. So much so that she was able to get a really good look at his eyes.
After all the testing we were able to come to a few conclusions.
He probably does not have leber's amaurosis (effects the retina) or achromatopsia (color blindness). His optic nerves look great, so his nystagmus probably isn't caused by optic nerve hypoplasia (OHN - underdeveloped optic nerves) either.
That was all wonderful news to hear.
After looking at his eyes for a while, she's also probably ruling out ocular albinism, though we are still cautious about that as it is early to rule this out without doing an ERG, but more on that later. He also has no refractive error, so at this point he doesn't need glasses.
Remember, decreased visual acuity caused by nystagmus cannot be fixed with glasses unless there is a refractive error. There is some talk about using contact lenses to calm the eye from moving or glasses with prisms or negative lenses to also help the nystagmus, but that's not the same as trying to fix a refractive error, and from my understanding it's only helpful in certain cases. For example, the negative lenses may help bring objects that are farther away seem closer so that it is easier for him to focus on them; convergence they call it. But at this point it isn't something we are looking at because it's a bit too early to tell if they would help, especially since we haven't yet seen if he will develop a null point and where that might be.
Note - a null point is the point where the eyes will naturally gravitate toward where he can see best. Often this is the point where the eyes are most calm and don't move as much. It can result in severe head tilt depending where the null point is. This is where surgery may really help.
The doctor also looked for signs of strabismus (lazy eye). He doesn't appear to have this, however kids under 6 months old often have trouble coordinating their eyes, so eye misalignment is common at this age and makes it difficult to say for sure if strabismus is present. She also ruled out any type of transillumination defects.
So at this point it is most likely that Jesse has what they call congenital motor nystagmus - CN, also known as ISN (infantile nystagmus) with no real underlying condition. His nystagmus is pendular in nature (side to side) and seems to travel less as objects get closer to his face with smaller faster movements when he tries to fixate on an object (fixation nystagmus).
If he has to have nystagmus, this diagnosis has the best chance for good vision. We are hoping for something better than 20/50 but it's far too soon to tell.
Most likely he will have trouble with stereopsis or fine depth perception. Things like concrete curbs or all beige stairs may give him trouble. However, this is only one factor that aids us with depth perception and he has all the other depth perception indicators, so he should quickly learn to overcome this setback.
One test that we did not do today was an ERG or electroretinogram. The ERG is a recording of the bioelectric potential of the eye. This test could be done to fully rule out some of the conditions mentioned above, specifically issues with the retina's and optic nerves. However there are some risks. Should Jesse cooperate the test could go fine, but if he doesn't they would need to sedate him, and that always carries risks, especially at his age. At this point we are on the fence and will probably spend the next few days/weeks talking it out before deciding if we want to get that test done now. Having the information would definitely make us feel better, but at the same time it wouldn't change any course of treatment at this point, so it's a tough call, especially given the results from today's tests.
We may also do a VEP (visual evoked potential) test in the future as well, but again he is too young right now. Maybe at 9 months or a year. An MRI is also an option, to rule out any neurological issues, however unless his weight drops off his curve or he presents other developmental issues we will probably hold off as the MRI definitely requires sedation.
For me, today was amazing.
It's all about getting him as much help, testing, diagnosis, visual stimulation, vision therapy, and surgery (if needed) for him to lead the most normal life that he can. I would love to see him be able to drive someday, something that most of us take for granted.
I can't tell you how much Dr. Orel-Bixler made us feel at ease and better about Jesse's condition. I know it's going to be different than what we had expected for our little boy, but it's going to be okay. Some days will be harder, some easier, both for him and I. I know that there will still be many sleepless nights in my future, staying up late to research the next greatest treatment option or worrying over something that I'm sure I'm making a bigger deal out of than he ever will. But as his mom, that's my job. My job is to worry without him ever knowing.
Next month we will have a follow up apt with Dr. Demiceli and one at 9 months with Dr. Orel-Bixler. We were also able to get a consultation appointment in LA with Dr. Lingua just before Thanksgiving. Since we will already be there, we figured it wouldn't hurt to take the time to see him and learn more about the procedures that he performs. We already know that he won't do his procedure before Jesse is 2 years old and his null point is established (if any), but if it gives us an opportunity to learn more about his treatment options then the appointment is worth it. And of course we are on the wait list for Dr. Hertle, most likely sometime in January or February.
One thing I mentioned to Jeremy tonight is how lucky we are that we can just focus so much energy into care and research for Jesse. For so many people they would never have the opportunity to see 2 doctors within a month, to drive to LA, to fly to Ohio, to get a 2nd, 3rd, 4th opinion.
Part V: The Best of the Worst
The Waitlist
As I mentioned in my last post, last week I contacted Dr. Hertle's office and spoke with his assistant. She was very nice and took the time to answer all my questions. Not that I had many at the time. I was so worked up that I was shaking. Fortunately she was very nice and helped calm my nerves a bit.
After our phone call she sent me some paperwork and by the next day we were on the waitlist.
We ARE on the waitlist.
Wow.
I'm still not sure how to handle all this. I'm so glad that the waitlist is 4-5 months out, because there's no way I could make such a life changing decision at this point.
As for Jesse, he's doing great. Over the last week he's made eye contact with me a few times. His eyes into mine. It was pure happiness.
For the most part he still looks up when he laughs, and when he looks forward he clearly sees something but you can tell he's not really looking at it. Or at least it doesn't seem like he is. He hasn't developed any head tilt yet and his eyes don't seem to be drifting to the left as much as he was before.
But this kid is on track, or very close to, for most of his milestones. He has great head and neck control, he can push up and look around when on his belly, and tonight he used the couch to balance for a few seconds standing up. Yea, he loves standing. If he's standing he's usually laughing.
He also reaches out to grab things and gets pissed off when something is out of his reach because he doesn't think he can crawl to it yet. He tries, but mostly he just goes in circles. This baffles me since he's always up against the head of his crib by morning, so clearly he know's how to move forward!
Tomorrow we are going to call Dr. Lingua's office and talk to his staff. His procedure is a bit different from Dr. Hertle's or Dr. Garet's in that he cuts 2-3 muscles around the eye but does not reattach them. There's a bit of controversy in the field about his work, but I'm going to talk to everyone that I can that might be able to help Jesse before I make a decision about what is right for him.
Part IV: A Second Opinion
After our phone call she sent me some paperwork and by the next day we were on the waitlist.
We ARE on the waitlist.
Wow.
I'm still not sure how to handle all this. I'm so glad that the waitlist is 4-5 months out, because there's no way I could make such a life changing decision at this point.
As for Jesse, he's doing great. Over the last week he's made eye contact with me a few times. His eyes into mine. It was pure happiness.
For the most part he still looks up when he laughs, and when he looks forward he clearly sees something but you can tell he's not really looking at it. Or at least it doesn't seem like he is. He hasn't developed any head tilt yet and his eyes don't seem to be drifting to the left as much as he was before.
But this kid is on track, or very close to, for most of his milestones. He has great head and neck control, he can push up and look around when on his belly, and tonight he used the couch to balance for a few seconds standing up. Yea, he loves standing. If he's standing he's usually laughing.
He also reaches out to grab things and gets pissed off when something is out of his reach because he doesn't think he can crawl to it yet. He tries, but mostly he just goes in circles. This baffles me since he's always up against the head of his crib by morning, so clearly he know's how to move forward!
Tomorrow we are going to call Dr. Lingua's office and talk to his staff. His procedure is a bit different from Dr. Hertle's or Dr. Garet's in that he cuts 2-3 muscles around the eye but does not reattach them. There's a bit of controversy in the field about his work, but I'm going to talk to everyone that I can that might be able to help Jesse before I make a decision about what is right for him.
Part IV: A Second Opinion
"Treatment" options
10 days ago I determined that my youngest son has nystagmus and 3 days ago that was confirmed by our first eye doctor. You can refer to my previous post about the day our world turned upside down.
Since Jesse's diagnosis I've been scouring the internet for anything and everything about nystagmus. What are the treatment options? What therapy is available? What should we do with him now to exercise his eyes more? What presents should I buy him at Christmas to maximize his enjoyment and yet challenge him?
First the obvious question. No, there is no cure for nystagmus or optical albinism (if that is what is his underlying condition).
Second, there are a lot of promising options out there.
Since beginning my research I've joined the American Nystagmus Network on Facebook. Yes, thank you Facebook. Thank you for bringing me closer to a group of people who have thus far been a wealth of information for me.
From that group and from doing research online I've found out about several doctors across the country who have lead cutting edge research into "treating" nystagmus. I'm cautious to call it treatment but their results have been promising. Two in particular have been of interest to me lately: Dr. Hertle (Akron OH) and Dr. Granet (San Diego CA).
Today I was at work pumping milk for Jesse during my morning break and I did more research into Dr. Hertle. I started to get so worked up and nervous that I only pumped enough for barely one bottle (thanks stress). I called Jeremy and told him we needed to at least make contact with Dr. Hertle to see what he had to say. We would call in the morning.
Yea right.
5 minutes later I was sitting in a conference room calling. I couldn't wait. I needed to know.
The nice woman in his office answered the phone and was very understanding and informative. She obviously got calls like this everyday. She told me the first steps that were necessary to get on his wait list (about 4 months at this point) and she started talking me through what it would be like if we chose to visit them and if we chose to have surgery.
Yea, surgery. On a 5 month old (or 9 at that point).
Okay deep breaths everyone.
I was shaking. I'm still shaking. The rest of the day was not especially productive for me.
Okay back up, what is all this surgery stuff?
Dr. Hertle is at the forefront of some cutting edge research (and now approved FDA procedures) for helping patients with nystagmus. The first step is a consultation, as you'd assume. You go through a series of tests (eye movement recording, visual evoked potential) and determine what the best course of treatment might be for you (or your little one in this case). Treatment options could be 1) wait and see 2) contacts to help slow down the movement of the eyes 3) drops, though I don't know as much about this one or 4) surgery. Surgery involves cutting the muscles around the eye and reattaching them to move the null point and help correct the visual acuity, presumably from the calming of the eye movement.
That paragraph pretty much sums up what I know so far about the treatment options and surgery. It's terrifying to think we might be cutting into our little guys eye. I can't even think about it. There is still so much to research and learn. It would be such a big decision I know that I'm not nearly ready to make it yet. But I am hopeful that there may be a way to correct his eye movements and help him see better. And I know getting on a wait list only means that you'll have a chance to see the doctor. Jesse may not be a candidate for any treatment, or we may decide he would benefit from surgery but we choose to wait a year, or maybe we just feel that we aren't ready and we don't even schedule the appointment once we get the call, but at least we will be on a list and have some options.
At this point options are all that I'm searching for. What are our options and what is the best thing that we can do for sweet baby Jesse?
Part III: The Waitlist
Since Jesse's diagnosis I've been scouring the internet for anything and everything about nystagmus. What are the treatment options? What therapy is available? What should we do with him now to exercise his eyes more? What presents should I buy him at Christmas to maximize his enjoyment and yet challenge him?
First the obvious question. No, there is no cure for nystagmus or optical albinism (if that is what is his underlying condition).
Second, there are a lot of promising options out there.
Since beginning my research I've joined the American Nystagmus Network on Facebook. Yes, thank you Facebook. Thank you for bringing me closer to a group of people who have thus far been a wealth of information for me.
From that group and from doing research online I've found out about several doctors across the country who have lead cutting edge research into "treating" nystagmus. I'm cautious to call it treatment but their results have been promising. Two in particular have been of interest to me lately: Dr. Hertle (Akron OH) and Dr. Granet (San Diego CA).
Today I was at work pumping milk for Jesse during my morning break and I did more research into Dr. Hertle. I started to get so worked up and nervous that I only pumped enough for barely one bottle (thanks stress). I called Jeremy and told him we needed to at least make contact with Dr. Hertle to see what he had to say. We would call in the morning.
Yea right.
5 minutes later I was sitting in a conference room calling. I couldn't wait. I needed to know.
The nice woman in his office answered the phone and was very understanding and informative. She obviously got calls like this everyday. She told me the first steps that were necessary to get on his wait list (about 4 months at this point) and she started talking me through what it would be like if we chose to visit them and if we chose to have surgery.
Yea, surgery. On a 5 month old (or 9 at that point).
Okay deep breaths everyone.
I was shaking. I'm still shaking. The rest of the day was not especially productive for me.
Okay back up, what is all this surgery stuff?
Dr. Hertle is at the forefront of some cutting edge research (and now approved FDA procedures) for helping patients with nystagmus. The first step is a consultation, as you'd assume. You go through a series of tests (eye movement recording, visual evoked potential) and determine what the best course of treatment might be for you (or your little one in this case). Treatment options could be 1) wait and see 2) contacts to help slow down the movement of the eyes 3) drops, though I don't know as much about this one or 4) surgery. Surgery involves cutting the muscles around the eye and reattaching them to move the null point and help correct the visual acuity, presumably from the calming of the eye movement.
That paragraph pretty much sums up what I know so far about the treatment options and surgery. It's terrifying to think we might be cutting into our little guys eye. I can't even think about it. There is still so much to research and learn. It would be such a big decision I know that I'm not nearly ready to make it yet. But I am hopeful that there may be a way to correct his eye movements and help him see better. And I know getting on a wait list only means that you'll have a chance to see the doctor. Jesse may not be a candidate for any treatment, or we may decide he would benefit from surgery but we choose to wait a year, or maybe we just feel that we aren't ready and we don't even schedule the appointment once we get the call, but at least we will be on a list and have some options.
At this point options are all that I'm searching for. What are our options and what is the best thing that we can do for sweet baby Jesse?
Part III: The Waitlist
The day our world turned upside down
Our sweet baby Jesse had his 4 month checkup in early September. At the time I didn't think much about it and even asked my husband to take him alone since I was way behind at work. He graciously agreed and I went on with my day.
That afternoon he called to tell me that everything went well but that the doctor was a bit concerned about Jesse's eyes and she wanted us to see a specialist.
Okay, I thought. Not a problem. Jeremy has terrible eyes, so I just figured that Jesse got the short end of the straw and was blessed with his genes in this area.
It took forever to get the referrals to the right people, but by the end of the week we are able to make an appointment for him at Oakland Children's. Initially they tell us that we won't be able to come in until the end of September, but after some sweet talking and urging at our doctors request we are able to get squeezed in for the next Friday. Great.
At this point we've hit the weekend and we are headed to Monterey for my first big triathlon. We have a great time on Saturday and head back in the afternoon.
About halfway though our drive something inside of me clicks. "Why would our pediatrician be so insistent that Jesse get seen by the pediatric ophthalmologist "sooner rather than later""?
So I start googling... and googling... and googling.
It wasn't good.
I quickly came to the conclusion that Jesse had a condition known as nystagmus. Here's an excerpt from the American Optometric Association:
Nystagmus is a vision condition in which the eyes make repetitive, uncontrolled movements, often resulting in reduced vision. These involuntary eye movements can occur from side to side, up and down, or in a circular pattern. As a result, both eyes are unable to hold steady on objects being viewed. Nystagmus may be accompanied by unusual head positions and head nodding in an attempt to compensate for the condition.
Jesse's eyes move rapidly horizontally, especially when he is tired. Sometimes it's a slow movement or none at all, but even when there is no large horizontal movement there are small quick jerks when he tries to focus on something. He's also begun to develop a 'null spot' (where his eyes can remain stable) to the left and looking up.
Jeremy and I spent the next few days feverishly searching the internet for anything we could find. At this point we hadn't yet seen the doctor, but we knew in our hearts that's what it was. And pretty soon we started thinking back to all those moments when we said "man, look at him looking around the room, he's so curious" Nope, not curious, okay well maybe curious, but all that looking around the room was his eyes not being able to focus.
The week went by slow, very slow. Finally Friday came and we visited with the doctor at Oakland Children's Hospital. I should mention that at this point we'd already determined that no matter what this doctor told us, we wanted a second opinion. I quickly scheduled something with the doctors at UC Berkeley's Infant and Toddler clinic for the end of the month.
As soon as we walked into the ophthalmologists office I just didn't feel right. I knew this doctor wasn't going to be the one for us, but we still needed to find out as much information as we could.
About 30 seconds into the appointment she said "yep, he has nystagmus" I'd like to say it was like getting sacked in the stomach, but really we had been prepared to hear that, so it more just reaffirmed what we already knew.
Beyond the diagnosis of nystagmus she wasn't able to determine much. She said he has no refractive error (which is good and bad), and his optic nerves look good. He is able to follow objects but how much he can really see is unknown. She looked at his retinas, twice, and told us that the looked okay but slightly suspicious; he may have optical albinism. Optical albinism reduces the pigmentation of the retinas and possibly the iris, though Jesse's iris's look good. It can lead to severe reduced visual acuity and depth perception. The other possibility is that he just has nystagmus and that his vision is fine. Well not "fine" but fairly good.
Unfortunately this doctor couldn't tell us much more than that and sent us away with a directive to come back in a month.
Now a few things. Why could it be bad that he has no refractive error? Because that means that no matter what, glasses will not help him. He can see just fine, it's the signal getting from the eye back to the brain that is having trouble.
How bad is his vision? In short, we don't know. We do know that it is good enough to track objects. It's good enough for him to start to balance standing up. He can reach out for objects and mostly grab them. He can start to wiggle his way across the room to objects that he sees. He can also tell if you are smiling at him because he will smile back, though he's not looking directly at you (which is really heart breaking). But how well he can see those objects or your face is just unknown and we won't know for some time. Part of it is development at his age, only 5 months old, the other part is that he simply can't tell us.
In short, we weren't impressed with the first doctor. Not only did I know more than she did about a condition I'd only learned about a week earlier, but she immediately told us there were no treatment options and that he'd probably have to have vision therapy, large print books, and help in school. I am very glad that we took the initiative to look up a second doctor and I am excited to see if the infant and toddler clinic has more information for us on what could be causing his nystagmus.
At this point my every waking moment is dedicated to my kids and as soon as they sleep I'm up researching everything I can about nystagmus. Life has taken us on a journey that we are completely unprepared for, but I know we will make it through. I will do everything that I need to in order to give my little boy, and BOYS, the most normal childhood and life they can have.
Part II: Treatment Options
That afternoon he called to tell me that everything went well but that the doctor was a bit concerned about Jesse's eyes and she wanted us to see a specialist.
Okay, I thought. Not a problem. Jeremy has terrible eyes, so I just figured that Jesse got the short end of the straw and was blessed with his genes in this area.
It took forever to get the referrals to the right people, but by the end of the week we are able to make an appointment for him at Oakland Children's. Initially they tell us that we won't be able to come in until the end of September, but after some sweet talking and urging at our doctors request we are able to get squeezed in for the next Friday. Great.
At this point we've hit the weekend and we are headed to Monterey for my first big triathlon. We have a great time on Saturday and head back in the afternoon.
About halfway though our drive something inside of me clicks. "Why would our pediatrician be so insistent that Jesse get seen by the pediatric ophthalmologist "sooner rather than later""?
So I start googling... and googling... and googling.
It wasn't good.
I quickly came to the conclusion that Jesse had a condition known as nystagmus. Here's an excerpt from the American Optometric Association:
Nystagmus is a vision condition in which the eyes make repetitive, uncontrolled movements, often resulting in reduced vision. These involuntary eye movements can occur from side to side, up and down, or in a circular pattern. As a result, both eyes are unable to hold steady on objects being viewed. Nystagmus may be accompanied by unusual head positions and head nodding in an attempt to compensate for the condition.
Jesse's eyes move rapidly horizontally, especially when he is tired. Sometimes it's a slow movement or none at all, but even when there is no large horizontal movement there are small quick jerks when he tries to focus on something. He's also begun to develop a 'null spot' (where his eyes can remain stable) to the left and looking up.
Jeremy and I spent the next few days feverishly searching the internet for anything we could find. At this point we hadn't yet seen the doctor, but we knew in our hearts that's what it was. And pretty soon we started thinking back to all those moments when we said "man, look at him looking around the room, he's so curious" Nope, not curious, okay well maybe curious, but all that looking around the room was his eyes not being able to focus.
The week went by slow, very slow. Finally Friday came and we visited with the doctor at Oakland Children's Hospital. I should mention that at this point we'd already determined that no matter what this doctor told us, we wanted a second opinion. I quickly scheduled something with the doctors at UC Berkeley's Infant and Toddler clinic for the end of the month.
As soon as we walked into the ophthalmologists office I just didn't feel right. I knew this doctor wasn't going to be the one for us, but we still needed to find out as much information as we could.
About 30 seconds into the appointment she said "yep, he has nystagmus" I'd like to say it was like getting sacked in the stomach, but really we had been prepared to hear that, so it more just reaffirmed what we already knew.
Beyond the diagnosis of nystagmus she wasn't able to determine much. She said he has no refractive error (which is good and bad), and his optic nerves look good. He is able to follow objects but how much he can really see is unknown. She looked at his retinas, twice, and told us that the looked okay but slightly suspicious; he may have optical albinism. Optical albinism reduces the pigmentation of the retinas and possibly the iris, though Jesse's iris's look good. It can lead to severe reduced visual acuity and depth perception. The other possibility is that he just has nystagmus and that his vision is fine. Well not "fine" but fairly good.
Unfortunately this doctor couldn't tell us much more than that and sent us away with a directive to come back in a month.
Now a few things. Why could it be bad that he has no refractive error? Because that means that no matter what, glasses will not help him. He can see just fine, it's the signal getting from the eye back to the brain that is having trouble.
How bad is his vision? In short, we don't know. We do know that it is good enough to track objects. It's good enough for him to start to balance standing up. He can reach out for objects and mostly grab them. He can start to wiggle his way across the room to objects that he sees. He can also tell if you are smiling at him because he will smile back, though he's not looking directly at you (which is really heart breaking). But how well he can see those objects or your face is just unknown and we won't know for some time. Part of it is development at his age, only 5 months old, the other part is that he simply can't tell us.
In short, we weren't impressed with the first doctor. Not only did I know more than she did about a condition I'd only learned about a week earlier, but she immediately told us there were no treatment options and that he'd probably have to have vision therapy, large print books, and help in school. I am very glad that we took the initiative to look up a second doctor and I am excited to see if the infant and toddler clinic has more information for us on what could be causing his nystagmus.
At this point my every waking moment is dedicated to my kids and as soon as they sleep I'm up researching everything I can about nystagmus. Life has taken us on a journey that we are completely unprepared for, but I know we will make it through. I will do everything that I need to in order to give my little boy, and BOYS, the most normal childhood and life they can have.
Part II: Treatment Options
Wednesday, September 9, 2015
A short jaunt to Denver for the Weekend.
Last weekend we had about 24 hours to unpack our things from Yosemite, do laundry, and repack it all for a trip to Denver. We like to travel, but this was by far the tightest we've ever scheduled trips. Actually, the trip to Denver got tacked on after Jeremy found out he needed to travel there for work. I figured, if he got to go enjoy the mountains, then we were coming too, at least for the weekend.
So Sunday we spent the day turning around laundry and Monday morning Jeremy was off to Denver while I stayed home with the kids for the week.
Thank goodness for daycare! Phew. Single parenting for the week certainty wasn't easy, but we made it through with only a few minor hiccups.
Thursday night came and we were off to Denver. I previously sent Jeremy with the clothing and diapers, so I "only" had to manage two kids, a stroller, diaper bag, Max's toy bag, and two car seats. Max was a very good traveler and only tried to run away from me once in the airport. (Actually, he was walking to the window and someone stopped him in such a way that he thought it was a game, so helpful stranger but not really.)
We arrived in Denver, got the car and made it to the hotel by about 1:30am. Yea, late night for sure. Max was hyped up to see Daddy and we were all up until 2:30. Yikes! Needless to say, Friday morning was a late start.
Friday - Georgetown Loop Railroad & St. Mary's Glacier
Friday we ventured out to the Georgetown Loop Railroad and took a short ride through the mountains. Max was pretty excited to be on a train, but also still pretty tired from the night before. This turned out great because Jeremy and I were able to eat lunch in quiet for a few moments before Jesse woke up for a feeding. Why is it they can't both sleep at the same time. Just 30 minutes!
After the train ride we headed up to Saint Mary's Glacier for a little hiking. It had started to rain at this point but we decided to grab the rain coats and umbrellas and do the hike anyway. As it happened, the rain stopped after about 15 minutes and we had a great hike. Max walked about 1/3 of the way up going across the rocky trail with careful footing. It was great for his balance and he kept saying "slippery" when he would get knocked off balance.
The trail tops out at a lake with a view up of the glacier which is so tiny at this point that it seems that it won't be there at all in a few years. We didn't do the hike up to the base of the glacier, instead opting to stay by the lake for a while and have a snack, throw stones, and take pictures.
Friday night we ate dinner at Ted's Montana Grill before heading back to our hotel in Bloomfield. (We stayed at the Hyatt House and found it very nice and accommodating. The room was very big which was great for fitting a king bed, pack and play, and a toddler inflatable bed).
Saturday - Rocky Mountain National Park
Saturday morning we got another late start, but we managed to get up to Rocky Mountain National Park by 11:30am. Late by my standards but Jeremy and the boys seemed to enjoy the relaxed morning. We started to head up to the top of the park but quickly realized that we wouldn't be able to do both the drive to the top and the Alberta Falls hike if we had any intention of eating dinner at a reasonable hour. So, we aborted the drive and headed back down to the Glacier Gorge parking area to do the Alberta Fall hike. Along the way we stopped at this overlook and took some great pictures of the kids.
The Glacier Gorge Trailhead parking was super packed at 1pm and after driving around it and the Bear Lake Trail parking area several times, I finally managed to grab a spot by following a woman to her car.
This is by far one of my top 10 (maybe even top 5) hikes that we've done. It's beautiful and just really allowed us to escape into nature for a while and spend time together as a family without any distractions. Sure it took us a while to do the hike, but that's because Max walked the entire 1.7+ miles to the falls and back all by himself! Yep, I am so proud of my little guy! Each time he would stop at a bridge crossing to throw stones we would tell him that we had to keep moving so we could make it to the really big waterfall. Man, the look on that kids face when we rounded the corner to Alberta Falls. "WOW. Big Big Waterfall!" he said with amazement.
If you're in the area, definitely put Alberta Falls on your short list of hikes to do, simply gorgeous and only 200 feet of elevation gain over .8 miles.
Following the hike we headed to Tavern 1929 for dinner. I was impressed with the food and it is very family friendly. Jeremy felt the beer was good, though I opted for the house pinot and the house cab, both of which were excellent. Unfortunately, while Jeremy and I were hungry, Jesse had plans of his own. He was not happy and we spent the entire dinner with one of us rocking him while standing up. Because of course you can't sit down. Never sit down.
The evening was capped off with ice cream in Estes Park.
Sunday - Boulder & friends
On Sunday we spent a very relaxing morning in Boulder. We hit up Pearl street around 10am and surprisingly stayed there until about 2:30. There's a lot of fun stuff for the kids to do including a boulder area to climb on (complete with a bridge and a fake river), a splash pad, and animal sculptures to also climb on. There's also a toy store and a microbrewery (West Flanders Brewing Company). The food at the microbrewery was actually quite good and the restaurant has all kinds of toys and legos for kids to play with while the adults ate their meal.
That afternoon we headed down to visit our friends, Lew and Kathleen, just outside of Golden. After convincing Lew that ice cream was not an appropriate dinner for anyone, especially a 2 year old, we headed first to dinner and then ice cream.
It was a nice relaxing day and a great opportunity to catch up with friends. Max liked Lew and Kathleen so much I think next time we will just drop him off and sneak out the back door :)
So Sunday we spent the day turning around laundry and Monday morning Jeremy was off to Denver while I stayed home with the kids for the week.
Thank goodness for daycare! Phew. Single parenting for the week certainty wasn't easy, but we made it through with only a few minor hiccups.
Thursday night came and we were off to Denver. I previously sent Jeremy with the clothing and diapers, so I "only" had to manage two kids, a stroller, diaper bag, Max's toy bag, and two car seats. Max was a very good traveler and only tried to run away from me once in the airport. (Actually, he was walking to the window and someone stopped him in such a way that he thought it was a game, so helpful stranger but not really.)
We arrived in Denver, got the car and made it to the hotel by about 1:30am. Yea, late night for sure. Max was hyped up to see Daddy and we were all up until 2:30. Yikes! Needless to say, Friday morning was a late start.
Friday - Georgetown Loop Railroad & St. Mary's Glacier
Friday we ventured out to the Georgetown Loop Railroad and took a short ride through the mountains. Max was pretty excited to be on a train, but also still pretty tired from the night before. This turned out great because Jeremy and I were able to eat lunch in quiet for a few moments before Jesse woke up for a feeding. Why is it they can't both sleep at the same time. Just 30 minutes!
choo choo
After the train ride we headed up to Saint Mary's Glacier for a little hiking. It had started to rain at this point but we decided to grab the rain coats and umbrellas and do the hike anyway. As it happened, the rain stopped after about 15 minutes and we had a great hike. Max walked about 1/3 of the way up going across the rocky trail with careful footing. It was great for his balance and he kept saying "slippery" when he would get knocked off balance.
The trail tops out at a lake with a view up of the glacier which is so tiny at this point that it seems that it won't be there at all in a few years. We didn't do the hike up to the base of the glacier, instead opting to stay by the lake for a while and have a snack, throw stones, and take pictures.
at the top of the lake before the glacier
hiking up the path
what a cutie
lake with the glacier in the background
throwing stones
Friday night we ate dinner at Ted's Montana Grill before heading back to our hotel in Bloomfield. (We stayed at the Hyatt House and found it very nice and accommodating. The room was very big which was great for fitting a king bed, pack and play, and a toddler inflatable bed).
Saturday - Rocky Mountain National Park
Saturday morning we got another late start, but we managed to get up to Rocky Mountain National Park by 11:30am. Late by my standards but Jeremy and the boys seemed to enjoy the relaxed morning. We started to head up to the top of the park but quickly realized that we wouldn't be able to do both the drive to the top and the Alberta Falls hike if we had any intention of eating dinner at a reasonable hour. So, we aborted the drive and headed back down to the Glacier Gorge parking area to do the Alberta Fall hike. Along the way we stopped at this overlook and took some great pictures of the kids.
The Glacier Gorge Trailhead parking was super packed at 1pm and after driving around it and the Bear Lake Trail parking area several times, I finally managed to grab a spot by following a woman to her car.
This is by far one of my top 10 (maybe even top 5) hikes that we've done. It's beautiful and just really allowed us to escape into nature for a while and spend time together as a family without any distractions. Sure it took us a while to do the hike, but that's because Max walked the entire 1.7+ miles to the falls and back all by himself! Yep, I am so proud of my little guy! Each time he would stop at a bridge crossing to throw stones we would tell him that we had to keep moving so we could make it to the really big waterfall. Man, the look on that kids face when we rounded the corner to Alberta Falls. "WOW. Big Big Waterfall!" he said with amazement.
If you're in the area, definitely put Alberta Falls on your short list of hikes to do, simply gorgeous and only 200 feet of elevation gain over .8 miles.
photo op!
the "big big waterfall"
tossing rocks with daddy
Following the hike we headed to Tavern 1929 for dinner. I was impressed with the food and it is very family friendly. Jeremy felt the beer was good, though I opted for the house pinot and the house cab, both of which were excellent. Unfortunately, while Jeremy and I were hungry, Jesse had plans of his own. He was not happy and we spent the entire dinner with one of us rocking him while standing up. Because of course you can't sit down. Never sit down.
The evening was capped off with ice cream in Estes Park.
Sunday - Boulder & friends
On Sunday we spent a very relaxing morning in Boulder. We hit up Pearl street around 10am and surprisingly stayed there until about 2:30. There's a lot of fun stuff for the kids to do including a boulder area to climb on (complete with a bridge and a fake river), a splash pad, and animal sculptures to also climb on. There's also a toy store and a microbrewery (West Flanders Brewing Company). The food at the microbrewery was actually quite good and the restaurant has all kinds of toys and legos for kids to play with while the adults ate their meal.
That afternoon we headed down to visit our friends, Lew and Kathleen, just outside of Golden. After convincing Lew that ice cream was not an appropriate dinner for anyone, especially a 2 year old, we headed first to dinner and then ice cream.
It was a nice relaxing day and a great opportunity to catch up with friends. Max liked Lew and Kathleen so much I think next time we will just drop him off and sneak out the back door :)
Make the jump HERE for the rest of the pictures from this awesome weekend getaway.
Visiting Yosemite
What a whirlwind these last few weeks have been, and it's not slowing down until next week! Someday my boys will look back at these stories and realize how crazy their mom was for planning so much into such a short amount of time.
Two weeks ago we were able to finally visit Yosemite National Park. Though we've lived in California for over a year, it took us this long just to get reservations somewhere! And, because I didn't realize you could book a year out, our next years trip will also be in the fall as opposed to the spring, oops.
Yosemite is about 3 1/2 hours from our house. That's 3 1/2 hours for people without kids. For us, it took us about 4 1/2 to get there and about 5 to get back. There were several stops to feed Jesse, grab a bite to eat, and let max burn off energy at a park.
When we first drove into Yosemite, around 1pm, we were immediately entranced by the beauty of the mammoth granite mountains. When we came upon a 3500 foot sheer granite face, there was no question that we were looking at El Capitan. Simply stunning.
Because of the severe drought in California, many of the iconic waterfalls were dried up or slowed to a trickle. There was no point in visiting Yosemite Falls or many of the others. So we opted to spend our time and take a grand overview of the park.
Our first day we hiked to the Vernal Falls footbridge, about 1.9 miles round trip on the Mist trail. It was slow going and Max was carried most of the hike. Not because his little legs couldn't do it, more on that in the next post, but because the sweet simple developing mind of a little child is just as amused with the rock on the trail as he is with the destination and the journey. Every step, every rock, ever puddle is a journey to him. I try to sit back and watch and just take in all the little moments.... but at some point you've gotta keep moving!
After Vernal Falls we had dinner at the curry village pizza patio and beers from the bar right beside it. The patio was very lovely, pizza was on the good side, and the beer, Tioga Sequoia Half Dome wheat, was delicious.
After dinner we checked into our hotel, Yosemite Lodge at the Falls, and crashed out. (at 3 months old, we didn't think Jesse was quite ready for camping, so we opted for the lodge). Our room was small but had enough space for a pack and play and even had a queen bed and a double bunk bed. Somehow Jeremy or I wound up in the bunk bed and Max wound up on the queen with the other one of us. Still not sure how that happened each night.
The next day we did the Cook's Meadow hike. We started across the street from bus stop #6 and more or less followed the directions online. We had spectacular views of the valley and half dome. We stopped at Degnan's deli for some lunch sandwiches to go and hit up the gift shop for a shirt for Max and Jeremy.
After returning to the room to finish our sandwiches, we headed down to the Swinging Bridge (doesn't swing at all) and spent a few hours on the beach. The Merced river that runs through Yosemite has several small sandy beach spots that are perfect for escaping the heat. We had just purchased a beach canopy and between the mesh sides and the small portable fan, Jesse was in heaven. The water temperature was about 70 degrees, but it felt so great. For a while I just sat in the water looking up at the granite mountains thinking to myself how lucky I was to be able to visit such a beautiful place. We enjoyed our time at the beach so much that we actually went back two days later to have some more water fun.
That night we drove up to Glacier Point for sunset. It is very beautiful up there, but absolutely terrifying if you have kids. I made Max stay in the stroller the entire time, only getting him out once to see the view. And that one time he was out, I had the biggest death grip on him. No no no no no, just sitting here typing I can't even think about it.
The next day we headed up to Tuolumne Meadows. Now, if you know anything about the geography of Yosemite, at this point you are probably wondering why we decided to do glacier point and then Tuolumne Meadows back to back. The answer is simple. We didn't fully appreciate how far away Tuolumne Meadows is from Yosemite Valley.... we do now!
After being very ansi in the car, I was ready to get out anywhere. A quick stop by Tuolumne Meadows visitor center provided us with a map and a plan. We decided to park at Lambert Dome, eat lunch that we brought (sandwiches from Degnan's again), then walk down to Soda Springs and the Tuolumne river. It's about 3/4 of a mile in each direction, but it's a nice walk through open meadows culminating at a river and a cool geological attraction.
Saturday was time to leave, but we decided to spend most of the day in the park and head out closer to dinner. We stopped by the visitor center before heading back to swinging bridge and the Merced river. Just as before, we throughly enjoyed our swim time.
We had a great time in Yosemite and will definitely be visiting again in the near future. Make the jump HERE for the rest of the pictures.
Two weeks ago we were able to finally visit Yosemite National Park. Though we've lived in California for over a year, it took us this long just to get reservations somewhere! And, because I didn't realize you could book a year out, our next years trip will also be in the fall as opposed to the spring, oops.
Yosemite is about 3 1/2 hours from our house. That's 3 1/2 hours for people without kids. For us, it took us about 4 1/2 to get there and about 5 to get back. There were several stops to feed Jesse, grab a bite to eat, and let max burn off energy at a park.
When we first drove into Yosemite, around 1pm, we were immediately entranced by the beauty of the mammoth granite mountains. When we came upon a 3500 foot sheer granite face, there was no question that we were looking at El Capitan. Simply stunning.
El Capitan
Our first day we hiked to the Vernal Falls footbridge, about 1.9 miles round trip on the Mist trail. It was slow going and Max was carried most of the hike. Not because his little legs couldn't do it, more on that in the next post, but because the sweet simple developing mind of a little child is just as amused with the rock on the trail as he is with the destination and the journey. Every step, every rock, ever puddle is a journey to him. I try to sit back and watch and just take in all the little moments.... but at some point you've gotta keep moving!
starting the trail
hiking up the trail
We made it to the footbridge. Jesse was not amused.
After Vernal Falls we had dinner at the curry village pizza patio and beers from the bar right beside it. The patio was very lovely, pizza was on the good side, and the beer, Tioga Sequoia Half Dome wheat, was delicious.
After dinner we checked into our hotel, Yosemite Lodge at the Falls, and crashed out. (at 3 months old, we didn't think Jesse was quite ready for camping, so we opted for the lodge). Our room was small but had enough space for a pack and play and even had a queen bed and a double bunk bed. Somehow Jeremy or I wound up in the bunk bed and Max wound up on the queen with the other one of us. Still not sure how that happened each night.
The next day we did the Cook's Meadow hike. We started across the street from bus stop #6 and more or less followed the directions online. We had spectacular views of the valley and half dome. We stopped at Degnan's deli for some lunch sandwiches to go and hit up the gift shop for a shirt for Max and Jeremy.
Cook's Meadow
Loves the binoculars
Simply stunning
After returning to the room to finish our sandwiches, we headed down to the Swinging Bridge (doesn't swing at all) and spent a few hours on the beach. The Merced river that runs through Yosemite has several small sandy beach spots that are perfect for escaping the heat. We had just purchased a beach canopy and between the mesh sides and the small portable fan, Jesse was in heaven. The water temperature was about 70 degrees, but it felt so great. For a while I just sat in the water looking up at the granite mountains thinking to myself how lucky I was to be able to visit such a beautiful place. We enjoyed our time at the beach so much that we actually went back two days later to have some more water fun.
Best beach ever.
Family photo then back in the stroller
Glacier Point
The next day we headed up to Tuolumne Meadows. Now, if you know anything about the geography of Yosemite, at this point you are probably wondering why we decided to do glacier point and then Tuolumne Meadows back to back. The answer is simple. We didn't fully appreciate how far away Tuolumne Meadows is from Yosemite Valley.... we do now!
After being very ansi in the car, I was ready to get out anywhere. A quick stop by Tuolumne Meadows visitor center provided us with a map and a plan. We decided to park at Lambert Dome, eat lunch that we brought (sandwiches from Degnan's again), then walk down to Soda Springs and the Tuolumne river. It's about 3/4 of a mile in each direction, but it's a nice walk through open meadows culminating at a river and a cool geological attraction.
soda springs
photo op!
one of my favorites. check out flickr for a better rendering.
Saturday was time to leave, but we decided to spend most of the day in the park and head out closer to dinner. We stopped by the visitor center before heading back to swinging bridge and the Merced river. Just as before, we throughly enjoyed our swim time.
We had a great time in Yosemite and will definitely be visiting again in the near future. Make the jump HERE for the rest of the pictures.
Tuesday, February 3, 2015
Creating a tiered spiral cake with fondant decorations
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Ever since Max's 1st birthday last June, I've been thinking about his 2nd birthday cake. You see, I had some issues with the 1st birthday cake that can pretty much be summed up with this statement: don't put fondant decorations on cool whip icing. They melt, they slide, they make a big sticky colored mess.
For birthday #2 we are going to do a train theme. So i've been looking at google, pinterest, and everywhere else you can think of to come up with some ideas. I now have 3.
Along my search I came across a few tiered cakes that did a spiral train track down the cake. How cool. So I spent hours reading blogs and trying to figure out exactly how to carve this spiral into the cake.
I just couldn't wrap my head around it. One night while on travel for work, I literally stayed up so late making drawings on scrap paper that I only got 5 hours of sleep. It's a bad obsession.
So last Sunday I decided it was test cake time. The best way to learn is to do... so I did.
In this blog I'm going to go over how to make the spiral cake, and also some tips that I've learned over the years. It's going to be a long post, but if you're making a cake, I think you will find it very informative. It's also a way for me to remember what I've done :)
They're more like guidelines...
First, a few rules I've come up with for fondant and tiered cakes. These come from my experience, reading blogs, and fixing mistakes.
1) freeze cakes overnight
- if possible, use a denser cake on the bottom tier and lighter as you go up. Super soft moist cakes don't hold up as well to heavy fondant (at least I've found). Box cakes are doable, but can be more troublesome.
2) assemble each layer separately, carving and filling as desired.
- also cut the bottom board of each tier to the correct size at this point.
- you may want to put a pilot hole in the center of each cardboard at this point. this will make it easier to drive the final center dowel into the cake once constructed.
3) let sit on counter for 3 hours to allow crumb coat to harden and cake to settle and it to come up to room temperature
- can assist this with the use of light "weights", but the idea isn't to squish the cake, just to get the filling and cakes to settle.
4) add thin buttercream smoothing layer. Use a glass of hot water to dip your metal curved spatula in while smoothing.
- your thick buttercream for tasting layers should be in the middle.
- For this layer, you do not want to let this one "harden" (like in the fridge or freezer) but just start working with your fondant and cover. You want this layer to stay smooth and hardening it too much will cause it to become crusty and could cause bumps, which is the whole thing you are trying to avoid.
5) fondant cakes.
- do use corn starch on your hands and surface to prevent sticking
- do kneed and work the fondant a lot ... a lot a lot, until it pulls easily and is very very pliable. If it's too stiff and hard it will crack.
- do elevate the cake or you'll get bunching around the bottom.
- don't make fondant too too large or it will "pull" as it's draping and cause tares. (test cake did this, but I had a very large piece of fondant so there was a lot of weight pulling it down in the back)
- Ask a helper to gently hold the fondant up on the back side if you're worried about it causing pulling on large tall cakes. I haven't found this to be an issue on single layer cakes but on the cake below, the entire green part is one piece of fondant and it seemed to pull downward from gravity a lot while I was working with it.
- DO work very quickly getting the top and sides done. (longer it sits, the more prone to tearing it is as it dries out).
HERE is a good quick blog about a simple fondant cake.
6) add structure to each bottom layer with wooden dowels or smoothie straws
- To avoid repeating tips i'm going to link a few good sites here
WILTON - a good general overview with this pro tip: Finely shredded coconut or confectioner's sugar, placed in area where cake circles or plastic plates will rest, helps prevent frosting on the cake from sticking
Make Fabulous Cakes - very detailed.
Dowels - these are plastic Wilton ones you can get on amazon. I've also used wooden dowels and smoothie straws in the past.
7) assemble
- Don't forget the final dowel that goes through each layer
8) decorate
The spiral cake
The two blogs that I used to guide my direction on this cake were Cake Central and Baking in Faith. I had some trouble following the end steps of Cake Central's explanation, but that's where just working with real cake helped a lot.
Also you'll notice two big differences in the above blogs. The Cake Central blog talks about adding additional cake to make the second half of the spiral. This leads to a bigger cake and a bigger top section. The Baking in Faith blog simply uses the cake you already have. This leads to a smaller top piece. Because I wanted the ramp to go round the front, then down the back, then back around the front (for two ramp layers in the front), I needed to do something closer to the Cake Central approach. (see picture at the top of this blog)
1st - make yourself a lot of cake. Since I was just using this as a test cake and wanted a medium to use that would be quick, I used 4 box cakes (on sale for $1.50 each... score).
Yes, you read that right, I used 4 box cakes. It's a lot of cake.
I made 2 - 7" layers for the top of which I only needed one). The 7" layer was 1lb 4oz of cake mix + pan.
I also made 4 - 9" layers. 3 of the layers were 1lb 8oz, then the 4th layer was way heavy. basically the rest of the cake. I was trying to get a very thick cake so when baking the 4th layer, I dropped the temperature of the oven down to 300 deg and let it in there until set. Probably 30-40 minutes but I wasn't keeping track.
In retrospect, I would do the following combination:
1 thicker 7" layer
3 normal 9" layers
2 normal 11" or 12" layers
As you'll see below, I used the thicker 9" layer to make the bottom of the ramp which was a bit tricky. Ideally you'd want the inner diameter of your bottom ramp to be the same as the outer diameter of your bottom layer. So a 11" or 12" cake would work better, as it would hold the shape easier.
1) arrange your cakes with filling inside and let sit for 3 hours to let settle. (remember point 3 above?) This cake was a chocolate cake with chocolate buttercream and raspberry filling.
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2) measure in from the outer edge for the width of your ramp. I used 1 3/4" for my ramp. Use toothpicks and mark all the way around the center.
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3) choose where you want your ramp to start and stop. I wanted half the top to be the train track, then start down the spiral, so I picked half the cake to work with.
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4) decide how steep you want your ramp. I knew I wanted the majority of the ramp to be around the front, and since this was the back of the cake, I made this section less steep. The ramp around the back side only went down the first layer.
using toothpicks, place them at your start and end, then fill in the rest to create the downward spiral.
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5) as you can see from this top down picture, the top circle unwinds at the point where the ramp goes down. So I added a few more toothpicks to bring out the circle. It' looks funny, but you'll see.
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6) using a sharp knife, follow your toothpicks along the top toothpicks then along the spiral on the side. I did this a few inches at a time.
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Here you can see the spiral start to take shape.
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And here's the final part of the top spiral.
7) now for the additional cake. For this I started cutting the 4th thick layer that I made. Because it was so thick I only needed to stack at the highest points. But I really think you could do 2 normal layers and stack (and fill) them. Also, this is where I diverged from the Cake Central blog above. I couldn't figure out what she meant when she talked about cutting the cake flat then turning it up on end and I found my approach just as easy.
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8) Measure in 1 3/4" (or your ramp diameter) into the cake. If you use the suggested cake diameters above, this center ring will be the approximate diameter of the main cake which will make nesting easier. Here you can see how tight the inner circle is, which made nesting the cake together a bit difficult. Of course it may not be exact, unless you can find just the right shaped cake pans. We're going for approximate here.
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9) Using the 4th layer you just measured out, start adding cake around the bottom layer to create the bottom ramp. (Again, you can also see what I was talking about earlier, how the outside diameter of the main cake should be the inside diameter of the ramp layer that you are adding, so they fit nicely together. Because I used the same size cakes, the outer diameters were the same so it made it hard to fit the ramp on without breaks in the cake. I had to have a lot of pieces, which doesn't help the structure at all.)
IMPORTANT - if you look closely you can see that I did not put icing between the main cake and the spiral cake pieces that I was adding. this was a mistake! it meant that the outer crumb coat was the only thing holding the spiral piece to the main cake and I could tell that caused some structural issues once the fondant was applied. Do NOT forget to attach your spiral with more icing.
If you look at the below picture, you can really see how important this is where the bottom spiral made of extra cake came to meet the main cake. That's such a thin piece there that it pulled away from the main cake because I didn't do a good job 'gluing' it with icing. This caused the fondant to bulge in that area, but I didn't notice until the next day after transport. (and we all know transport doesn't help things)
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10) now that you've added extra cake do the same thing you did above and measure the width of the ramp to be 1 3/4" (or whatever you are doing) and then mark your spiral downward for the bottom ramp. Again cut in and then down to remove cake.
Ta Da. You have a spiral!
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11) For the top piece I used that 7" layer and cut this weird shape. As you can see in the final pictures below, I wanted the left edge to look like a mountain and tunnel so that's why the extra cake there. Since I was doing a mountain I didn't care if it came exactly out to the edge of the main cake, because I could just fill in with fondant rocks.
12) Add a crumb coat to the entire cake and let sit to harden (or put in fridge)
13) Then add your smooth coat (which I forgot for this cake... it was getting late)
14) structure, fondant, decorate as detailed above in the first list.
Here is the final product.
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Here I borrowed Max's "mo mo" train for effect, but I will probably look for smaller trains with more cars for the final product.
You can also see the upper ramp that I talked about earlier. If you look at the Baking in Faith blog that I mentioned above, then you won't get this upper ramp.
I think if you thought about it enough, you could do a two ramp spiral using all one main cake (green part above), but you'd need a big cake to start with (maybe 12" for a 9" top with a 1 1/2" ramp). You'd have to create a 9" circle around the top, then you'd have to measure 1/3 of the way down and cut in 1 1/2" to make sure you have the correct top section. Then start doing the spiral. As you cut the spiral around the front you'll be taking away more cake, so I think it would be okay. I don't have it drawn off hand since I just thought about it while writing this, but I think its' doable and might lead to a more structural cake especially with the bottom ramp. If I decide to go this route for the actual cake, I may have to give myself extra time and try that.
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