Well, it took longer than I intended to get around to making an appointment for Addy with a vision therapist, but we finally took care of it this morning!
Long story short: the doctor did not think therapy would be beneficial to Addy at this point, but she also recommended against another surgery. She thinks we ought to just continue monitoring her vision, and hopefully we can come back for therapy when Addy is a little older.
Bigger picture: The doctor (I'll call her Dr. D) confirmed that Addy's eyes are still turning in a fair amount. She is, however, still seeing 20/20 in both eyes for distance, and at least 20/30 up close. She said she notices that Addy's right eye tends to dominate when she is looking at things far away, but she tends to use the left when she looks up close. That is good news, because it means she is still getting stimulation for both eyes, and we should not need to patch in order to maintain good vision in both eyes (which she said is all the patching would really be good for at this point).
At Addy's age, however, Dr. D said she doesn't think Addy would be able to understand the concepts of what they would be trying to do with the therapy. I don't know a whole lot about therapy methods, but just from what I've heard, and what I've seen about how Addy interacts with the doctors during her exams, that sounds like a fair assessment to me. Addy is a bright little kiddo, but I can see these things being a bit difficult for a 4-year-old to grasp... and she tends to just go along with you and think (or pretend) she is doing things right when she really has no idea what you're talking about. I think Dr. D generally works with older patients anyway, but she said specifically that Addy's case is "too complicated" for it to be a good fit at this time. I forgot to ask when might be a good point at which to try again, but I'm guessing we may try heading back that direction in another couple of years.
In the meantime, though, Dr. D said she thought a third surgery would not be a good idea. (I was very encouraged to hear my instincts receive some confirmation there!!) I've watched the doctors measure Addy's alignment, and they always have trouble getting her to focus, so I could see how their measurements could easily be a bit off. Dr. D worked with Addy more patiently than most doctors or nurses I've seen who evaluated her before (which I greatly appreciated!) but even she was having trouble getting an accurate measurement. And after all, the surgeons are adjusting the eyes based on their measurements, so if these are a bit off, the surgical results will be a bit off as well. Dr. D also mentioned that further surgeries can become more complicated because of the scar tissue that is added with each surgery... I'm not exactly sure what she meant there, but it seems to make sense.
Since Addy's regular eye doctor / surgeon has moved away anyway, Dr. D recommended another eye doctor to us, who is not a surgeon. She said that she thinks sometimes a doctor who is also a surgeon will tend to recommend surgery more quickly than a non-surgeon, which makes a lot of sense. (This has always been a bit of a reservation of mine about Addy's regular doctor, actually, though I don't know that I completely realized why.) So, we may be checking in with this other doctor sometime soon... We still do need to make sure Addy is at least using both eyes and maintaining good vision in each eye, even if they are not really working together.
Addy seems to be seeing and functioning fine overall... She does seem maybe a little slow on fine motor skills, but with time and a little extra effort, I think we can work on that. I'm thankful she is doing so well in spite of all the physical challenges she's had!
As far as prayer requests, we would appreciate prayer that Addy's eyes at least don't get any worse as we wait til a more appropriate time to approach therapy. (If God chose to work a miracle and heal her in the meantime, though, that would of course be AWESOME!!) Prayers for wisdom on where and how and when to approach further challenges would be appreciated as well.
As always, thank you for keeping up and praying with us!!
Thursday, November 6, 2014
Friday, June 6, 2014
Another Check-up
Addy had another follow-up appointment today. I haven't taken a lot of time to process new information yet, but I wanted to get it written down so I don't forget anything.
First, the good news: Addy's vision in both eyes is doing quite a bit better. Last time, I believe she was seeing at about 20/40... this time she was at about 20/25 for both eyes. Awesome! Dr. Y seemed to think it was a result of the patching*, but personally I think it was the new glasses... Addy seemed to be enthralled with them when we first got them a month or two ago (and nothing had been changed except the lenses), so I got the impression that they were helping her see significantly better. I'm sure the patching helped, too, but considering that her eyes were seeing equally on both occasions, I don't see how that would have had a whole lot to do with it. (*Dr. Y usually comes in to give her evaluation just at the end of the appointment after a nurse and sometimes another doctor have seen her, so I think sometimes it takes her a few minutes to get on the same page with everyone.)
The bad news, however, is that Addy's eyes are still not wanting to align (I didn't hear the numbers, but I got the impression that they were about the same as last time), and the tests they did today showed that her brain still tends to let her right eye take over and block out the vision from the left when she is using both eyes. So, as Dr. Y's fellow doctor put it, "We're doing good on part of our goal [preserving and enhancing the vision of the eyes individually], but not the other part [achieving binocular function]."
Bottom line? Dr. Y thinks Addy needs more surgery. She was very nice about breaking this news (not that it was very surprising) and did not try to put any pressure on me to rush the decision, or even to necessarily go through with the decision at all. But it was clear that that is her recommendation.
This diagnosis is very frustrating to me, especially because Addy's eyes were good -- or at least seemed to be -- at about this time last year. We were about 5 months post-op after the second surgery, and Dr. Y had found her alignment to be doing great. Our best guess at what happened between then and now is that Addy did nothing but grow a little bigger. Her eyes seemed well-aligned before, but the position of the eyes is not enough in itself. The brain has to recognize the vision from both eyes and put them together in a single picture in order for the eyes to truly work in concert. Evidently, Addy's brain has never done this. As I understand it, the head will grow a little larger as the child grows, so the eyes will change, but it is no problem if the brain has learned to use the eyes together. But if the brain is not in on the deal, the eyes can fall right back out of alignment as the child grows.
As I see it, then, we could go through surgery again, get her eyes realigned, and everything would be peachy... for the next year or so. Maybe we'd hit the jackpot this time and her brain would suddenly realize that these two pictures are meant to be put together as one. But if not, we'd be in the same position once again... and be facing yet another surgery. And perhaps another... and another. Somehow it doesn't strike me as the greatest option to be adjusting the eyes every 1.5-2 years. (I met a young lady with Addy's condition once who had surgeries like this all throughout her childhood and still never gained binocular function.) Shouldn't there be some way to make the brain click instead, solving the problem at its source?
I was not shy about expressing my frustration with this predicament to Dr. Y, and I asked her if there was any way to do this without more surgery. As I told her that I felt we would be stuck in this loop of surgery after surgery, she just sat there nodding with an understanding look on her face. Not exactly reassuring. :-P
When I asked about some sort of therapy or something to try to focus on getting the brain to work, she said that in her opinion therapies do not work. (Again, no big surprise there.) The studies done have not proven the therapies to be a scientifically sound method (i.e., they don't seem to work very well for many people). She did say that the glasses she prescribed for Addy -- specifically the bifocal part of them -- were meant to be a type of therapy, as they are supposed to help the eyes diverge outward when looking at things close up (where they would normally converge inward). Addy doesn't seem to be using her bifocals very well (she just looks over top of them), so we are planning to pursue an adjustment to her glasses that may encourage her to do that. Dr. Y also made the (kind of obvious) statement that the patching is meant to help in the sense that it makes the weak eye stronger and more likely to catch up and work with the other eye. So, I do recognize and respect the fact that she has been trying various non-surgical methods of getting the brain to work like it's supposed to, and we will at least continue to do these things and see if we can get them to make a bit more of a difference. However, I feel that we have been trying all these more accepted methods, including more than one surgery, and we still don't seem to be getting anywhere as far as Addy's brain is concerned. Furthermore, it seems that at this point, we are just doing more guessing and dice rolling. Maybe more surgery would help, maybe not... it's a gamble. It seems to me that perhaps we are just doing the same things over and over and hoping for different results, when maybe we ought to be trying a different approach.
Which brings us to another point: even if we did decide to do further surgery, Dr. Y would not be around to do it. She has accepted a new job and is moving across the country. She could potentially be available for surgery if we did it within the next couple of months, but otherwise we would have to go with one of her colleagues. And we would have to be getting check-ups (and any additional surgeries) from them anyway.
As we walked into the appointment this afternoon, I was praying for clarity. And while we don't know without further thought and prayer what exactly we will do, I'm wondering if, between feeling stuck in a rut with conventional medicine and ties with Dr. Y being severed, perhaps God is leading us to move in another direction. I have heard of vision therapies that claim to have the capability of training one's eyes and brain to work together to develop binocular vision, even when an individual has never had it, even as an adult. Yes, I'm sure it isn't super "scientific" in the sense that it hasn't been proven to work for everyone, but frankly, eye muscle surgery doesn't work for everyone either. And at this point, we're kinda thinking, what have we got to lose?
So, we are prayerfully considering some sort of vision therapy. We would appreciate your prayers with us for wisdom and direction, and ultimately healing for Addy, but peace with whichever direction we decide to take.
Thank you all for reading and praying with us!
First, the good news: Addy's vision in both eyes is doing quite a bit better. Last time, I believe she was seeing at about 20/40... this time she was at about 20/25 for both eyes. Awesome! Dr. Y seemed to think it was a result of the patching*, but personally I think it was the new glasses... Addy seemed to be enthralled with them when we first got them a month or two ago (and nothing had been changed except the lenses), so I got the impression that they were helping her see significantly better. I'm sure the patching helped, too, but considering that her eyes were seeing equally on both occasions, I don't see how that would have had a whole lot to do with it. (*Dr. Y usually comes in to give her evaluation just at the end of the appointment after a nurse and sometimes another doctor have seen her, so I think sometimes it takes her a few minutes to get on the same page with everyone.)
The bad news, however, is that Addy's eyes are still not wanting to align (I didn't hear the numbers, but I got the impression that they were about the same as last time), and the tests they did today showed that her brain still tends to let her right eye take over and block out the vision from the left when she is using both eyes. So, as Dr. Y's fellow doctor put it, "We're doing good on part of our goal [preserving and enhancing the vision of the eyes individually], but not the other part [achieving binocular function]."
Bottom line? Dr. Y thinks Addy needs more surgery. She was very nice about breaking this news (not that it was very surprising) and did not try to put any pressure on me to rush the decision, or even to necessarily go through with the decision at all. But it was clear that that is her recommendation.
This diagnosis is very frustrating to me, especially because Addy's eyes were good -- or at least seemed to be -- at about this time last year. We were about 5 months post-op after the second surgery, and Dr. Y had found her alignment to be doing great. Our best guess at what happened between then and now is that Addy did nothing but grow a little bigger. Her eyes seemed well-aligned before, but the position of the eyes is not enough in itself. The brain has to recognize the vision from both eyes and put them together in a single picture in order for the eyes to truly work in concert. Evidently, Addy's brain has never done this. As I understand it, the head will grow a little larger as the child grows, so the eyes will change, but it is no problem if the brain has learned to use the eyes together. But if the brain is not in on the deal, the eyes can fall right back out of alignment as the child grows.
As I see it, then, we could go through surgery again, get her eyes realigned, and everything would be peachy... for the next year or so. Maybe we'd hit the jackpot this time and her brain would suddenly realize that these two pictures are meant to be put together as one. But if not, we'd be in the same position once again... and be facing yet another surgery. And perhaps another... and another. Somehow it doesn't strike me as the greatest option to be adjusting the eyes every 1.5-2 years. (I met a young lady with Addy's condition once who had surgeries like this all throughout her childhood and still never gained binocular function.) Shouldn't there be some way to make the brain click instead, solving the problem at its source?
I was not shy about expressing my frustration with this predicament to Dr. Y, and I asked her if there was any way to do this without more surgery. As I told her that I felt we would be stuck in this loop of surgery after surgery, she just sat there nodding with an understanding look on her face. Not exactly reassuring. :-P
When I asked about some sort of therapy or something to try to focus on getting the brain to work, she said that in her opinion therapies do not work. (Again, no big surprise there.) The studies done have not proven the therapies to be a scientifically sound method (i.e., they don't seem to work very well for many people). She did say that the glasses she prescribed for Addy -- specifically the bifocal part of them -- were meant to be a type of therapy, as they are supposed to help the eyes diverge outward when looking at things close up (where they would normally converge inward). Addy doesn't seem to be using her bifocals very well (she just looks over top of them), so we are planning to pursue an adjustment to her glasses that may encourage her to do that. Dr. Y also made the (kind of obvious) statement that the patching is meant to help in the sense that it makes the weak eye stronger and more likely to catch up and work with the other eye. So, I do recognize and respect the fact that she has been trying various non-surgical methods of getting the brain to work like it's supposed to, and we will at least continue to do these things and see if we can get them to make a bit more of a difference. However, I feel that we have been trying all these more accepted methods, including more than one surgery, and we still don't seem to be getting anywhere as far as Addy's brain is concerned. Furthermore, it seems that at this point, we are just doing more guessing and dice rolling. Maybe more surgery would help, maybe not... it's a gamble. It seems to me that perhaps we are just doing the same things over and over and hoping for different results, when maybe we ought to be trying a different approach.
Which brings us to another point: even if we did decide to do further surgery, Dr. Y would not be around to do it. She has accepted a new job and is moving across the country. She could potentially be available for surgery if we did it within the next couple of months, but otherwise we would have to go with one of her colleagues. And we would have to be getting check-ups (and any additional surgeries) from them anyway.
As we walked into the appointment this afternoon, I was praying for clarity. And while we don't know without further thought and prayer what exactly we will do, I'm wondering if, between feeling stuck in a rut with conventional medicine and ties with Dr. Y being severed, perhaps God is leading us to move in another direction. I have heard of vision therapies that claim to have the capability of training one's eyes and brain to work together to develop binocular vision, even when an individual has never had it, even as an adult. Yes, I'm sure it isn't super "scientific" in the sense that it hasn't been proven to work for everyone, but frankly, eye muscle surgery doesn't work for everyone either. And at this point, we're kinda thinking, what have we got to lose?
So, we are prayerfully considering some sort of vision therapy. We would appreciate your prayers with us for wisdom and direction, and ultimately healing for Addy, but peace with whichever direction we decide to take.
Thank you all for reading and praying with us!
Monday, March 24, 2014
In Other News (& More Recent Pictures)
Other than the latest discouraging news on Addy's eyes, Addy is doing quite well. She is growing and developing at a perfectly normal rate, and she continues to get good reviews from the doctors on her head. Most people who learn about her cranio challenges for the first time say they never would have known!
The biggest change to the household that has occurred in the past couple of years is that Addy is now a...
We had an interesting little run-around about halfway through the pregnancy, though, as my providers (midwives in a free-standing birth center) began to express some discomfort at the idea that they might have to deliver a child with this condition. Their main concern was that his skull, if partially fused, would not be able to fit through the birth canal, making a natural birth (the only option at the birth center, barring emergency transfer) impossible. This did not concern us, as Addy had been delivered naturally by these same providers without any problems, and an informal poll of some fellow cranio moms online told me that most of them did not have problems during delivery either (other than complications not related to the cranio).
So, Little Brother's head received a good scrutinizing at our 20-week ultrasound, with no problems observed. But since they were unlikely to find anything at that point anyway (these problems don't usually crop up until later), they recommended that I get another ultrasound closer to delivery, around 35 weeks or so. Feeling that this was unnecessary and could only lead to more anxiety, we asked to decline, and after a bit more info from me (plus a little from Addy's plastic surgeon's office), they decided to grant our request and go with the birth we had originally planned. Little Brother apparently decided to blow them all out of the water and arrive after only 5 hours of labor, just to prove that he was quite capable of fitting through the escape hatch. ;-) And thus, all was well, and Addy remains our only child to face these special challenges.
Addy is now on par with her peers developmentally, and is proving herself to be quite a smart little cookie. She goes to AWANA Cubbies with Big Sister #2 and often has her weekly verse memorized more quickly than her sister. She is quite a little chatterbox much of the time, and can usually be found having her own little adventures (often modeled after whatever TV show she is into at the time). At just shy of 4 years old, she is not doing too much in the way of preschool, but she is beginning to learn to read, and doing quite well with it so far.
The biggest change to the household that has occurred in the past couple of years is that Addy is now a...
Addy's little brother was born this past September. While I don't include a lot of details about Addy's siblings on this blog, I felt this one was significant considering some of you may be reading this from the perspective of one who has had a child with craniosynostosis and are now no longer sure you will want to have any other children, for fear that they will suffer from the same condition. This question was a factor for us as well, but considering the fact that we had two other non-cranio children before
Addy and that Addy displayed no signs of any genetic problems, we felt
fairly comfortable moving ahead with our family planning. (And ultimately, if we were to have another child with cranio, we knew we'd made it through once already and could probably survive the journey again.) But I am happy to report that Addy's little brother has just about the most perfect little head I ever saw!
We had an interesting little run-around about halfway through the pregnancy, though, as my providers (midwives in a free-standing birth center) began to express some discomfort at the idea that they might have to deliver a child with this condition. Their main concern was that his skull, if partially fused, would not be able to fit through the birth canal, making a natural birth (the only option at the birth center, barring emergency transfer) impossible. This did not concern us, as Addy had been delivered naturally by these same providers without any problems, and an informal poll of some fellow cranio moms online told me that most of them did not have problems during delivery either (other than complications not related to the cranio).
So, Little Brother's head received a good scrutinizing at our 20-week ultrasound, with no problems observed. But since they were unlikely to find anything at that point anyway (these problems don't usually crop up until later), they recommended that I get another ultrasound closer to delivery, around 35 weeks or so. Feeling that this was unnecessary and could only lead to more anxiety, we asked to decline, and after a bit more info from me (plus a little from Addy's plastic surgeon's office), they decided to grant our request and go with the birth we had originally planned. Little Brother apparently decided to blow them all out of the water and arrive after only 5 hours of labor, just to prove that he was quite capable of fitting through the escape hatch. ;-) And thus, all was well, and Addy remains our only child to face these special challenges.
Proudly holding her little brother.
Addy adjusted surprisingly well to the new baby in the household, and seems to enjoy her role as one of the "big girls." She often helps me out with her little brother, but she continues to love her some Mommy time. Thankfully, though, after struggling for years of wanting Mommy and ONLY Mommy (increased separation anxiety seems to be common in children who have gone through traumatic experiences like she has), her daddy and sisters are now members of Addy's Most Trusted club, and she is even doing much better with outsiders (such as her Sunday school teachers). She is quite a sociable little thing, and though usually very soft-spoken, she has pretty much zero fear of any person (as long as one of her Most Trusted is close behind her).
Addy & her siblings
Addy is now on par with her peers developmentally, and is proving herself to be quite a smart little cookie. She goes to AWANA Cubbies with Big Sister #2 and often has her weekly verse memorized more quickly than her sister. She is quite a little chatterbox much of the time, and can usually be found having her own little adventures (often modeled after whatever TV show she is into at the time). At just shy of 4 years old, she is not doing too much in the way of preschool, but she is beginning to learn to read, and doing quite well with it so far.
Addy on a visit to the beach this past month.
Keep at it, little girl! You are doing great. :-)
The Eye Saga Continues...
Well, considering it's been over two years since I last posted (other than my side note today), I figure it's high time for an update! Things have been pretty quiet on the cranio front in the past couple of years, but we have had a bit of action on the side of Addy's strabismus, including the latest news which we have not yet shared with most of our own loved ones.
Here is the run-down (as well as I can recall)...
Early-to-mid 2012:
Addy continues seeing Dr. Y for her eyes. The alignment is not evening out as well as we'd hoped, so we change her glasses prescription once or twice, as well as trying various patching regimens.
Fall 2012:
Dr. Y starts talking about another eye surgery. We are not thrilled with this idea. I have recently started seeing a chiropractor, so we start taking Addy as well to see if that might change anything (since we've heard that this is possible). The chiropractic seems good for Addy in general (her motor skills seem to improve a bit as she suddenly learns how to jump up and down), but has no noticeable effect on her eyes.
As a second surgery seems imminent, we seek out a second opinion from UNC. Dr. Y's opinion is affirmed and seems highly respected by the folks at UNC. We begin to feel more confident that Dr. Y is trying her best to avoid surgery, but feels that it is the best alternative. We decide that if her opinion has not changed by Addy's next appointment, that we will go ahead with a second surgery.
January 3, 2013:
Addy's 2-year cranio post-op check-up. Addy is a bit small for her age, but everything else looks great. Clean bill of health as far as her head is concerned!
January 22, 2013:
At Addy's appointment, we find that things are about the same, so we sign ourselves up for another surgery. We are told that someone will call us the following day to set up a surgery date, likely a couple months away.
January 23, 2013:
The call comes in, but we are told that in addition to later alternatives, there is an opening for surgery the next day. We were not expecting this at all, but we decide that sooner is better than later, so we quickly arrange for a pre-op (that day) and a babysitter to watch our other two girls.
January 24, 2013:
Addy undergoes a second eye surgery. This one is a bit tougher than the last one -- probably mostly because she requires more anesthesia as a bigger kid, and this makes it more difficult for her to bounce back as quickly as last time. She takes it like a champ, though, and is mostly back to normal by the next day. Though still not perfect, Addy's eyes look better aligned immediately after surgery (which is better than last time, when they looked much worse at first!).
March 2013:
At Addy's follow-up appointment, her eyes are still a bit turned in. Dr. Y decides to try giving Addy bifocals, which she thinks may help train her eyes to stay farther apart while looking at objects up close. She also recommends that we start patching her right eye again.
Spring 2013:
Despite putting in the order for Addy's new glasses immediately, we run around in circles for nearly two months before we finally get them in hand. (They are first shipped to the wrong office, then are accidentally discarded by the courier who was supposed to bring them to the right office [I know, right?!], then have to be reordered, then arrive with the bifocal part of the glasses covering more than half of the lens, then have to be reordered AGAIN, then finally arrive as needed. Oy.) By this time Addy's next appointment is just a few weeks away, yet we have not had time to allow the glasses to help her eyes at all. (We also have not worked on the patching very much, and want to be a little more faithful with that before seeing the doctor again.) We decide to push the appointment back to July.
July 2013:
The new glasses and more faithful patching seem to have done something because Dr. Y says Addy's eyes look great! We are overjoyed. Dr. Y tells us to return in about 8 months.
January 2, 2014:
Addy's 3-year cranio post-op check-up. Addy is looking great on all fronts. However, we are noticing her eyes still turning in a bit, so we are not certain of what Dr. Y will think at her next appointment...
Which brings us to our latest update from...
March 21, 2014:
I go in with a bit of anxiety for Addy's next follow-up. We go through various tests, which seem to indicate (from what I can tell) that Addy's eyes are not seeing the greatest (I think we got down around 20/40, with the right eye seeing slightly better than the left), and that she likely still does not have three-dimensional vision. We see a fellow doctor of Dr. Y's first, who confirms that her alignment is a bit turned in again. When we see Dr. Y, she seems surprised and disappointed, and keeps asking if Addy has been sick or injured since she last saw her. (She hasn't had any issues beyond a minor cold or two.) Dr. Y finally seems to concede that her eyes are just growing and the alignment is changing with age. My assumption is that if Addy's brain could learn to truly coordinate with her eyes and provide 3D vision, the alignment would no longer be much of an issue... but the problem is getting her eyes to a place where her brain will recognize the difference. Which apparently has not been achieved so far. *sigh*
At present, one problem is that Addy needs a different prescription for the sake of the vision of her eyes individually... and it is actually a weaker one than she has now. (This would explain why she has lately been lifting up her glasses while she tries to watch TV... the prescription she has now is meant to help her focus her eyes more outward from one another, but it is making it harder for her to see overall.) As Dr. Y put it, that puts us between a rock and a hard place, because the prescription that may help her alignment inhibits her vision, and the one that helps her vision doesn't help her alignment. But, she said, there is a higher priority on her vision overall, so our next course of action is to get her a prescription that more closely fits what her eyes need individually. We will also be patching her right eye again in an effort to keep her brain from starting to ignore the weaker left eye.
We have another appointment in a little over two months. We'll see how she is then and go from there. Just to prepare myself for the worst, I asked if another surgery would be recommended if nothing changes from here. The answer was unfortunately yes. We are hoping and praying that the new glasses and patching will do the trick. This regimen seemed to help last time, so there is some hope. We'll see how it goes!
Here is the run-down (as well as I can recall)...
Early-to-mid 2012:
Addy continues seeing Dr. Y for her eyes. The alignment is not evening out as well as we'd hoped, so we change her glasses prescription once or twice, as well as trying various patching regimens.
Fall 2012:
Dr. Y starts talking about another eye surgery. We are not thrilled with this idea. I have recently started seeing a chiropractor, so we start taking Addy as well to see if that might change anything (since we've heard that this is possible). The chiropractic seems good for Addy in general (her motor skills seem to improve a bit as she suddenly learns how to jump up and down), but has no noticeable effect on her eyes.
As a second surgery seems imminent, we seek out a second opinion from UNC. Dr. Y's opinion is affirmed and seems highly respected by the folks at UNC. We begin to feel more confident that Dr. Y is trying her best to avoid surgery, but feels that it is the best alternative. We decide that if her opinion has not changed by Addy's next appointment, that we will go ahead with a second surgery.
January 3, 2013:
Addy's 2-year cranio post-op check-up. Addy is a bit small for her age, but everything else looks great. Clean bill of health as far as her head is concerned!
January 22, 2013:
At Addy's appointment, we find that things are about the same, so we sign ourselves up for another surgery. We are told that someone will call us the following day to set up a surgery date, likely a couple months away.
January 23, 2013:
The call comes in, but we are told that in addition to later alternatives, there is an opening for surgery the next day. We were not expecting this at all, but we decide that sooner is better than later, so we quickly arrange for a pre-op (that day) and a babysitter to watch our other two girls.
January 24, 2013:
Addy undergoes a second eye surgery. This one is a bit tougher than the last one -- probably mostly because she requires more anesthesia as a bigger kid, and this makes it more difficult for her to bounce back as quickly as last time. She takes it like a champ, though, and is mostly back to normal by the next day. Though still not perfect, Addy's eyes look better aligned immediately after surgery (which is better than last time, when they looked much worse at first!).
Addy resting a few hours after coming home from her surgery.
March 2013:
At Addy's follow-up appointment, her eyes are still a bit turned in. Dr. Y decides to try giving Addy bifocals, which she thinks may help train her eyes to stay farther apart while looking at objects up close. She also recommends that we start patching her right eye again.
Spring 2013:
Despite putting in the order for Addy's new glasses immediately, we run around in circles for nearly two months before we finally get them in hand. (They are first shipped to the wrong office, then are accidentally discarded by the courier who was supposed to bring them to the right office [I know, right?!], then have to be reordered, then arrive with the bifocal part of the glasses covering more than half of the lens, then have to be reordered AGAIN, then finally arrive as needed. Oy.) By this time Addy's next appointment is just a few weeks away, yet we have not had time to allow the glasses to help her eyes at all. (We also have not worked on the patching very much, and want to be a little more faithful with that before seeing the doctor again.) We decide to push the appointment back to July.
July 2013:
The new glasses and more faithful patching seem to have done something because Dr. Y says Addy's eyes look great! We are overjoyed. Dr. Y tells us to return in about 8 months.
January 2, 2014:
Addy's 3-year cranio post-op check-up. Addy is looking great on all fronts. However, we are noticing her eyes still turning in a bit, so we are not certain of what Dr. Y will think at her next appointment...
Which brings us to our latest update from...
March 21, 2014:
I go in with a bit of anxiety for Addy's next follow-up. We go through various tests, which seem to indicate (from what I can tell) that Addy's eyes are not seeing the greatest (I think we got down around 20/40, with the right eye seeing slightly better than the left), and that she likely still does not have three-dimensional vision. We see a fellow doctor of Dr. Y's first, who confirms that her alignment is a bit turned in again. When we see Dr. Y, she seems surprised and disappointed, and keeps asking if Addy has been sick or injured since she last saw her. (She hasn't had any issues beyond a minor cold or two.) Dr. Y finally seems to concede that her eyes are just growing and the alignment is changing with age. My assumption is that if Addy's brain could learn to truly coordinate with her eyes and provide 3D vision, the alignment would no longer be much of an issue... but the problem is getting her eyes to a place where her brain will recognize the difference. Which apparently has not been achieved so far. *sigh*
At present, one problem is that Addy needs a different prescription for the sake of the vision of her eyes individually... and it is actually a weaker one than she has now. (This would explain why she has lately been lifting up her glasses while she tries to watch TV... the prescription she has now is meant to help her focus her eyes more outward from one another, but it is making it harder for her to see overall.) As Dr. Y put it, that puts us between a rock and a hard place, because the prescription that may help her alignment inhibits her vision, and the one that helps her vision doesn't help her alignment. But, she said, there is a higher priority on her vision overall, so our next course of action is to get her a prescription that more closely fits what her eyes need individually. We will also be patching her right eye again in an effort to keep her brain from starting to ignore the weaker left eye.
We have another appointment in a little over two months. We'll see how she is then and go from there. Just to prepare myself for the worst, I asked if another surgery would be recommended if nothing changes from here. The answer was unfortunately yes. We are hoping and praying that the new glasses and patching will do the trick. This regimen seemed to help last time, so there is some hope. We'll see how it goes!
To Any Visitors Reading This Blog...
...Welcome!
This blog was originally intended to provide a convenient way for family and friends to keep updated on my daughter Addy's condition, surgery, and progress. As such, I have considered abandoning it, since we are reasonably certain the worst is over in terms of Addy's surgeries, and there are other just-as-convenient means of keeping our friends and family up to date. However, I have noticed that this blog continues to get a reasonable amount of traffic from the outside... presumably because there are quite a few folks out there who are searching for information on craniosynostosis on behalf of loved ones. (After all, at about 1 out of every 2,000 babies being born with the condition, it is fairly common, even though most of us have no idea what that big word means when we first hear the diagnosis.)
For this reason, I have kept this blog open, for the sake of giving a little more information on craniosynostosis, treatments, and an example of what children with "cranio" go through and look like, both as babies and down the road. And though most of you visiting will probably be more interested in what I have already written, I will try to give at least a brief update every once in a while and let you know how Addy is doing!
And while I may not be updating often, I still regularly check the email associated with this blog, so please feel free to leave a comment!
I wish you all the best of luck in your own journeys.
This blog was originally intended to provide a convenient way for family and friends to keep updated on my daughter Addy's condition, surgery, and progress. As such, I have considered abandoning it, since we are reasonably certain the worst is over in terms of Addy's surgeries, and there are other just-as-convenient means of keeping our friends and family up to date. However, I have noticed that this blog continues to get a reasonable amount of traffic from the outside... presumably because there are quite a few folks out there who are searching for information on craniosynostosis on behalf of loved ones. (After all, at about 1 out of every 2,000 babies being born with the condition, it is fairly common, even though most of us have no idea what that big word means when we first hear the diagnosis.)
For this reason, I have kept this blog open, for the sake of giving a little more information on craniosynostosis, treatments, and an example of what children with "cranio" go through and look like, both as babies and down the road. And though most of you visiting will probably be more interested in what I have already written, I will try to give at least a brief update every once in a while and let you know how Addy is doing!
And while I may not be updating often, I still regularly check the email associated with this blog, so please feel free to leave a comment!
I wish you all the best of luck in your own journeys.
Saturday, March 10, 2012
One-Year Check-up, Etc.
Wow, I haven't updated this blog in a long time! Let's see if I can catch everyone up here...
Addy is doing very well! She had her one-year post-op check-up for her head early in January. We saw both Dr. M (the plastic surgeon) and Dr. G (the neurosurgeon) and got a follow-up CT scan. It was a long day, but Addy did well, and the news was great. The CT scan showed that the bone is filling in nicely... she is growing her own bone over the patchy areas, meaning that she has little chance of needing any surgery to fill in those spots with artificial bone. That is excellent news! The doctors were also very happy with how her head is looking and growing, and how she is developing overall. I have to say, I'm very happy with all that, too! And no more check-ups for a year -- woo-hoo!
Addy with Dr. M
Addy with Dr. G
I remember her surgeons saying that her head would look much like a normal toddler's by around the time she turned two. Her birthday is next month, and I have to completely agree with them! Not only is her forehead much more even than it was, but her head seems to be lengthening and not seeming so much like a wide Dora head. :-) It was a little strange to have a child with a head like this, since my firstborn had a very long head (you might almost think saggital cranio, but no), and my secondborn's head, though not quite as long, was definitely longer than it was wide. Addy's head was pretty different... probably due in part to some positional plagio as well as the cranio... She had a pretty good flat spot on the back of her head. (I did my best to turn her head to the side, but she didn't always stay there.) But now, her head is looking much more "normal" to me with more of an oval shape.
Her screws and plates began dissolving and swelling up around 9 months post-op, as the doctors had warned us they would. It was pretty freaky for a while... She kind of looked like Darth Maul when her hair would get plastered down in the bath! For a while, it seemed that the swelling would start going down in some areas, and then start swelling up in other areas. I'm guessing this is because the screws and plates dissolved at different speeds. But finally, in the last month or so, all the swelling seems to have finished. Which is probably another reason that her head seems so much more normal... No more feeling that bumpy head or seeing Darth Maul at bath time! :-)
The only question we've had with her head was about a month ago... She hit her forehead fairly hard, and though I didn't see any swelling at first, it later puffed up into a huge goose egg. It wasn't like a bruise filled with blood, though... It was normal-colored and soft, and seemed to be filled just with fluid. I posted about it on Facebook and the craniokids forum, and I had several moms say that their kids had had similar issues when they bumped their heads. I called the doctor on call just in case, and he said from the sound of it, it was probably fine as long as it wasn't getting any bigger and she wasn't acting strange. The lump stuck around for a week or two (gradually getting smaller), but she didn't seem to mind it at all. So we never had to take her in to get checked, and she was just fine. My guess is that when the skin gets pulled away from the skull like it does in the cranio surgery, it is more sensitive to bumps like that, and perhaps the immune system has a memory of how it reacted before and reacts similarly again. (It was very much like a mini, isolated version of her post-surgery swelling, so that's why I say that.) Anyway, the good news is that it was all resolved without any problems!
Addy is doing very well! She had her one-year post-op check-up for her head early in January. We saw both Dr. M (the plastic surgeon) and Dr. G (the neurosurgeon) and got a follow-up CT scan. It was a long day, but Addy did well, and the news was great. The CT scan showed that the bone is filling in nicely... she is growing her own bone over the patchy areas, meaning that she has little chance of needing any surgery to fill in those spots with artificial bone. That is excellent news! The doctors were also very happy with how her head is looking and growing, and how she is developing overall. I have to say, I'm very happy with all that, too! And no more check-ups for a year -- woo-hoo!
Addy with Dr. M
Addy with Dr. G
I remember her surgeons saying that her head would look much like a normal toddler's by around the time she turned two. Her birthday is next month, and I have to completely agree with them! Not only is her forehead much more even than it was, but her head seems to be lengthening and not seeming so much like a wide Dora head. :-) It was a little strange to have a child with a head like this, since my firstborn had a very long head (you might almost think saggital cranio, but no), and my secondborn's head, though not quite as long, was definitely longer than it was wide. Addy's head was pretty different... probably due in part to some positional plagio as well as the cranio... She had a pretty good flat spot on the back of her head. (I did my best to turn her head to the side, but she didn't always stay there.) But now, her head is looking much more "normal" to me with more of an oval shape.
Her screws and plates began dissolving and swelling up around 9 months post-op, as the doctors had warned us they would. It was pretty freaky for a while... She kind of looked like Darth Maul when her hair would get plastered down in the bath! For a while, it seemed that the swelling would start going down in some areas, and then start swelling up in other areas. I'm guessing this is because the screws and plates dissolved at different speeds. But finally, in the last month or so, all the swelling seems to have finished. Which is probably another reason that her head seems so much more normal... No more feeling that bumpy head or seeing Darth Maul at bath time! :-)
The only question we've had with her head was about a month ago... She hit her forehead fairly hard, and though I didn't see any swelling at first, it later puffed up into a huge goose egg. It wasn't like a bruise filled with blood, though... It was normal-colored and soft, and seemed to be filled just with fluid. I posted about it on Facebook and the craniokids forum, and I had several moms say that their kids had had similar issues when they bumped their heads. I called the doctor on call just in case, and he said from the sound of it, it was probably fine as long as it wasn't getting any bigger and she wasn't acting strange. The lump stuck around for a week or two (gradually getting smaller), but she didn't seem to mind it at all. So we never had to take her in to get checked, and she was just fine. My guess is that when the skin gets pulled away from the skull like it does in the cranio surgery, it is more sensitive to bumps like that, and perhaps the immune system has a memory of how it reacted before and reacts similarly again. (It was very much like a mini, isolated version of her post-surgery swelling, so that's why I say that.) Anyway, the good news is that it was all resolved without any problems!
Bump on the head:
In other news, as you may have noticed in the first two pictures, Addy now has glasses! Her eye surgeon is happy with the way things are looking, but Addy still has a tendency to let her left eye drift inward. Since that eye needs a bit of a prescription anyway, we thought glasses might help her to be motivated to use it more, and I think we were right. We haven't had another follow-up visit since she got the glasses (at the end of November), but I can tell they have made a difference... Her eye drifts a lot less while she's wearing the glasses, but almost as soon as the glasses come off, the eye drifts again. She seems to be seeing better, too... She rarely ever paid attention to the TV before, and now she LOVES it (a little too much sometimes, haha!).
Addy wearing her new glasses
Addy wearing her new glasses
Addy is also catching up developmentally. She was a few months behind her age group in some areas, especially motor skills, with fine motor skills being the most behind. Although this may have something to do with her cranio, I tend to think the fine motor skill delay is at least partly (if not completely) due to her eye issues. But she is progressing, and I think she's catching up. She is now walking great, running, climbing, playing well with toys, unrolling toilet paper and tearing it into tiny pieces... Y'know, normal toddler stuff. :-)
She's talking a lot these days, too! Not full sentences or anything, but she'll do 2-3 word sentences sometimes, and she has added a whole lot of words to her vocabulary. So I think she's caught up to her age group in that category, and with the influence of her sisters, she might just start passing them up soon. :-)
Sliding down the slide all by herself!
God is good. I pray Addy continues to do as well as she has done so far.
She's talking a lot these days, too! Not full sentences or anything, but she'll do 2-3 word sentences sometimes, and she has added a whole lot of words to her vocabulary. So I think she's caught up to her age group in that category, and with the influence of her sisters, she might just start passing them up soon. :-)
Enjoying the swings
Sliding down the slide all by herself!
Monday, September 19, 2011
Eye Doctor Update for August
We went to the eye doctor for another check-up a couple of weeks ago. Addy's eyes are still doing pretty well. The left eye, which has been the weaker one all along and tended to turn outward before the surgery, is still somewhat weaker than the right and now tends to turn inward a bit.
We were instructed at our last visit (in late June) to resume patching her right eye to strengthen the left. That seemed to help at first, to the degree that I actually thought I saw her starting to use her left eye more than her right, or at least using them about half and half. I called her doctor's office to report this, and they said that we could stop the patching for a while if we wanted. Well... her favoring for the right eye came back after a bit, but we were not super consistent about patching.
After this last visit, we are back to patching more consistently again. The doctor didn't seem too concerned about it, though, and didn't increase her patching regimen to anything more than it was before. She basically said it's about trying to get both eyes to equal strength, and hopefully she will eventually realize that she can see better if she uses them both together instead of separately.
Her doctor also gave us a light prescription for glasses. I requested this, since Addy is slightly nearsighted and has a slight astigmatism in her left eye, and I thought it might help her get her vision more on track. Her doctor said it was worth a try. We haven't gotten any glasses for her as of yet, but we are hoping to do it soon.
Addy continues to improve in her coordination and motor skills... She has started feeding herself some and is finally WALKING! Yay!
And of course, she continues to be a little cutie patootie...
...Also, she apparently likes to suck on black markers. Thankfully, they were non-toxic washable markers, so it was all good. :-)
Friday, June 10, 2011
New Picture
Today Addy is 2 weeks post-eye-surgery! This picture is from a couple of days ago. The redness in her eyes is almost gone, and her eyes are looking GREAT! She started getting much better focus after about a week, and I have only rarely seen her eyes go in different directions since then. They still tend to do unusual things when she is not looking straight ahead (meaning not too much up or down... she usually does fine side to side), but I think there is still plenty of opportunity for that to straighten out with practice. In other words... Praise God, she's doing GREAT!! :-)
Sunday, May 29, 2011
Eye Surgery Post-op Report
Well, I meant to post a little sooner, but I guess this will work. :-p
Addy is doing very well. Her eyes looked a bit more nasty than I expected after surgery, but still not anywhere near as nasty as mine looked after retinal detachment surgery, so it could be worse. The redness continues to look better each day.
As far as positioning of the eyes, we noticed right away that they are very different from what they were. Addy was pretty much incapable of "crossing her eyes" (turning them both inward), and now at least one of them is turned inward most of the time. This is normal, since they loosened the two outward muscles, and it may take a little while before they strengthen again and figure out where they're supposed to go. They also worked on one more muscle in the under part of her right eye, the tightness of which was making that eye appear more elevated than the other. So now that eye is floating around a little more up and down than it used to. But again, that is to be expected.
The goal and the hope is that her brain will eventually figure out how to make her eyes work together instead of separately, allowing her to have depth perception and 3-D vision. At this point, she is still mostly using one eye at a time (you can usually tell because one eye will be looking at you, and the other will be turned inward -- used to be outward), but I am pretty sure I've seen a few times where she gets them to both look straight. That's actually a little better than I was expecting, so I'm hopeful!
The doctor saw her the day after surgery, and she said she is "much improved" and is happy with the way things are looking. We have an appointment in about a month, so by that time we may be able to tell a little better how Addy's brain is adjusting to the new position of her eyes. It could take several more months after that to be able to determine the likelihood of further surgery, however.
We would appreciate prayer for her as she recovers and adjusts: 1) That her eyes would heal quickly and avoid infection, and 2) that her eyes and brain would learn to work together in the way they need to in order to avoid further surgery.
We are so blessed by how smoothly everything went with the surgery, though! Addy was mostly back to normal by the night of the surgery, and since the next day, she's been acting as if nothing ever happened! We appreciate all you who have been praying for us. The Lord has certainly been gracious to us in this whole process!
Thursday, May 26, 2011
Quick Update
Everything went very well. Surgery started a little before 8 am, and we left the hospital by about 11. Talk about a quick turn-around! Addy slept for a few hours when we got home, then got up and has been slowly returning to normal. She is a bit more crabby than usual, but is starting to want to cruise around furniture and play again, which is fantastic! We go back for a post-op appointment tomorrow morning... I will update more after that. Thanks for praying and following along with us!
Addy's Eye Surgery
Addy is having eye muscle surgery as I type this.
Needless to say, our questions in my last post about her eyes were pretty definitively answered in the affirmative: i.e., she does need this surgery. I could see it more and more after I realized what the real cause of the problem was.
We appreciate all you who have been praying and continue to pray. I'll update later today to let you know how it went.
Needless to say, our questions in my last post about her eyes were pretty definitively answered in the affirmative: i.e., she does need this surgery. I could see it more and more after I realized what the real cause of the problem was.
We appreciate all you who have been praying and continue to pray. I'll update later today to let you know how it went.
Friday, March 18, 2011
Dr.'s Visit and 3-Month Pics
Earlier this week, I took Addy to her first post-op appointment with her neurosurgeon. (She's already seen the plastic surgeon a couple times since surgery.) Nothing major to report... Dr. G basically just said she's doing great! He felt around on her head and noted that she already seems to be growing some new bone over the gaps left by the surgery, which is a very good thing. He mentioned that he is not concerned about gaps that stick around for a while, but if any of them get bigger or we start feeling pulsing flesh in the gaps (which would make the gaps bigger with the pulsing), that would be a problem. If she did have this problem, she would likely have to have another surgery (not as major) to fill in the spots with (I think?) synthetic bone. Fortunately, Addy doesn't seem to have any signs of these problems. Dr. G said they are pretty rare... only occurring in about 10% of cases. So far, so good!
And I thought I would also take this opportunity to post these pictures that I took a couple weeks ago, at about 3 months post-op. Addy is looking and doing fantastic!!
There's the cutie!
This is a very typical face for Addy... she looks so concerned sometimes.
Right side of the head, where the suture was closed.
Another right side shot. Looking SO much better!
Left side.
Left again. This is pretty much the only place you can obviously see the scar.
Top down. Left side is just slightly forward from the right, but overall MUCH more symmetric!!
And I finally got a real smile for the camera!
Showing how big she is getting by putting her arms in the air. Sooo big!
And that's all for now, folks!
Thursday, February 24, 2011
New Pics and Eye Surgery News
I am a little behind on my pictures, but here is Addy from about a month ago, at about 2 months post-op.
Cheese!
Hangin' out
Sweetie :-)
She was modeling this outfit, here without the sweater.
Cutie pie.
Addy's head continues to look better all the time. The issue now is her eyes. Addy had an ophthalmologist follow-up last week, and it is looking now like eye muscle surgery is pretty much inevitable. This is what the doctor had said last time, but based on the subsequent opinion of her plastic surgeon (and his experience with cranio patients), and based on my own optimistic hopes, I thought we might be able to avoid surgery in the end. Unfortunately, the eye doctor found that her eyes are actually a little worse than last time, and after she spent a little more time explaining things to me, I think I understand why she is pretty convinced it is necessary.
Basically, my assumption has been that Addy more or less has a "lazy eye" that can be corrected with patching and sometimes other therapy. In actuality, the bone around Addy's eyes is shaped such that the muscles are pulling her eyes in unusual directions. This can be corrected by tightening or loosening the muscles to adjust the alignment of the eye.
Another thing I've noticed for a long time is that Addy often tilts her head when she is looking at things. I had thought this was a result of her head being misshapen and bigger (and heavier) on one side than the other. The doctor explained that this is actually also related to her eyes. (I had heard this can happen, but couldn't figure out why.) The doctor explained that there are three sets of muscles on the eye -- some that move them up and down, some side to side, and then another set that (I believe) affects the way the eye moves around in a circle. With Addy's type of cranio, it is common for these last muscles to be pulled in abnormal directions. So she believes Addy's right eye is actually twisted such that she need to tilt her head in order for things to appear level.
This explanation alone made a big difference in my understanding. It also explained to me why it seems that Addy's eyes often seem to be focused in the same direction, but when she looks up, they are always pointed outward from one another, and when she looks way down, they can make her look cross-eyed. If one of Addy's eyes is somewhat twisted in its socket, this makes a lot more sense.
The other problem is Addy's left eye, which tends to be pointed outward from the direction of the right eye. (You can see an example of this in the top picture above.) This is what I had thought was the main problem, that might be correctable with patching. Apparently the doctor thinks that the muscles of her eye are actually pulling it outward as well, and will have to be adjusted in order to align it. (Or perhaps the actual socket is misaligned because of the unusual shape of her head? I'm not sure.) This one still doesn't completely make sense to me, since Addy often does have her eyes pointed in the same direction (i.e., her left eye is not always pointed out). The doctor's explanation was that the eyes tend to point inward when you are looking at something close, but when Addy focuses on objects far away, her eyes point outward. I haven't noticed if this is always true, but it seems probable. If it is true, Addy will have to have surgery on the muscles of both eyes.
Addy has her next eye appointment in the first week of May, a couple weeks after her first birthday. If everything is still as it seems now, she will have surgery shortly thereafter, sometime in May or June.
While we would love to see Addy's eye issues fixed, we are not really looking forward to this surgery. Not because it is difficult... compared to the last surgery, it sounds like a breeze: in and out the same day, and she should be acting like normal again pretty much as soon as the anesthesia wears off. The problem is that, as with any surgery that involves muscles, there is a fairly high rate of failure -- that is, failure to achieve optimal results. There is some discrepancy in the exact statistics, but the source that Addy's doctor provided says there is about a 20-40% chance that the surgery will not achieve the desired results. I have heard from and spoken to a number of families who have had this procedure done, and it seems that in most cases, it is usually necessary to at least 2 or 3 of these surgeries before the problem is completely corrected.
So, we would ask that you pray for three things:
1) That the doctors would be able to accurately and definitively determine whether Addy needs surgery or not.
2) That if she needs surgery, everything would go smoothly and without complication.
3) That God would give the surgeons wisdom and skill in this operation, so that (if it be His will) we could get this problem corrected the FIRST time and not have to have any more surgeries!!
Thank you all for following along with Addy's story and for praying with us!!
Thursday, January 6, 2011
CT Scans & An Update
I got copies of Addy's CT scans at a follow-up appointment today. This was her first scan, from September. Note the off-center soft spot at the top of her head.
Another view of the scan. Note the line running down the side of her head. That is what an OPEN suture looks like.
And this is the right side of her head. Notice you can't even see the suture line. It is completely closed up. (The little dent-like mark on her forehead is just a marker, not actually part of her skull.)
And this is what her scan looked like a couple days after surgery. Kinda freaky looking, but amazing!
Left side.
Right side. The patchy spot is where the surgeon filled in an open area with a bone paste. Pretty fascinating if you ask me!
And here's what she looks like from the outside, 4 weeks post-op (last week), sporting a new hat from her aunt. :-)
Addy is doing great! Dr. M seemed particularly pleased with how Addy's surgery turned out. He said her head is put together a lot more smoothly than a lot of kids he's done. I definitely think she looks great, and I anticipate it will only get better! Now if we could just figure out how to avoid eye surgery... :-)
Thursday, December 23, 2010
Three Weeks Post-op
Addy continues to look better and better every day! Here are a few pics from Tuesday (3 weeks +1 day post-op).
The cutie has sprung a couple of teeth in the past couple weeks, as you can see in this last pic! :-)
The cutie has sprung a couple of teeth in the past couple weeks, as you can see in this last pic! :-)
Monday, December 13, 2010
Sunday, December 12, 2010
A Few Pics
Day 3 post-op (Thursday). Getting ready to go home!
Day 4 post-op. Swelling going down pretty quickly.
Day 5 post-op.
I would post more, but I can't find my camera at the moment. :-p Grr. I'll try to rectify that tomorrow.
Saturday, December 11, 2010
Catching Up
So... I apologize to those of you who have been looking for an update since my last one. I guess this is what happens when I get back home to my two other young children with the one who is still recovering from surgery: I no longer have any time to update. :-)
Jeremy came and picked us up at the hospital on Thursday morning (Dec. 2). Addy's swelling went down quite considerably overnight, so her eyes were about half-open again by the time we left the hospital. Her older sisters were excited to see her again, and I'm sure Addy was glad to get away from that place with all the ladies who come in and wake you up and poke you with various things. ;-) (Not that I'm complaining... I know they're just doing their jobs.)
Addy was a little more quiet and clingy than usual for the first few days after we brought her home, but other than that, she went pretty much back to normal very quickly. I was expecting her sleeping schedule to get all messed up, but she actually went right back to her old routine! Her swelling came down very quickly, and by about day 6 after surgery, you could barely even see any swelling. So pretty much the only difference with the home recovery was having to put antibiotic ointment on her incision and hold her more than usual to keep her happy and safe. Never easy to alter a routine, but a lot better than I expected!
At this point, nearly 2 weeks out from surgery, I'd say Addy is just about back to normal in every way except that her incision is not totally healed up yet. (I assume that will probably take a couple more weeks.) But she is her usual cheerful, wanting-to-be-held-all-the-time, stinkery, cute self again. She is back to her two favorite games -- peek-a-boo and rubbing her hands all over your face ;-) -- and has recently added a new one: dancing. (She wiggles her little head and body back and forth in a playful, dancing manner... SO cute!!)
We saw Dr. Marcus on Wednesday (the 10th) for a follow-up. Apparently he wasn't informed that we were showing up that day, but he passed us in the hallway and basically gave us our follow-up right there! Ha! He seemed pleasantly surprised by how good she looked and how much the swelling had gone down already. (I had rigged up an inclined bed like the one in the hospital using her pack-and-play -- a hint I'd seen on craniokids -- and I think that did help with the swelling.) He said that everything looked great and even went so far as to say, "Did I even do surgery on her?"
One somewhat discouraging piece of news came a couple days before that, though, when we went to see her ophthalmologist at 1 week post-op. (That was probably a bit early, but we were going out of town soon, so I wanted to get it done so I'd know whether we should keep patching her eye, get her some glasses, etc.) The good news is that the surgery did not change anything for the worse. The not-so-good news is that it didn't help anything, either. (It usually doesn't.) The worse than that news is that it sounds like she probably WILL need eye muscle surgery after all... or at least, that's what the doctor said on that visit. Dr. Marcus thought that she may have been speaking a little too soon to be sure, since there was probably still some swelling and settling of the surgery to finish before they could make calls like that. The eye doctor herself said something similar, but more to the effect that we would wait and see for a few months, but that she thought surgery would probably have to happen.
I am personally a little skeptical of this. One encouraging thing is that we found that Addy is using both eyes equally and can see just about as well with each one (other than the astigmatism in her left eye). This is opposed to what she had seen at Addy's previous visit, where she was showing a definite preference for using her right eye and letting the left one drift. We think this is probably a result of the patching.
With that in mind, I have noticed that Addy's left eye definitely does not seem to be drifting as much. But the doctor still thought that her eyes were not completely aligned. This is where I am skeptical. There is a good portion of the time where her eyes are slightly off, but I believe that she CAN align her eye correctly when she is really trying. It is just easier at this point to be a little lazy with those muscles, especially when she is tired. Which, by the way, could have been part of the issue when we saw the doctor on Monday... It was just about Addy's naptime when we got there, and she ended up falling asleep in the waiting room at one point. Not the best time to be evaluating her eyes, I think.
Anyway, I think it is definitely still quite possible that she will need the eye surgery in the end, but I am interested in getting a second opinion and/or exploring non-surgical options. This surgery is a pretty minor one compared with the last one, but still never fun, and it sounds like it is fairly hit-or-miss. The statistics I've read say the problem is only corrected about 65-85% of the time, with the remaining percentage either causing no improvement or even worsening of the problem. Not the most encouraging thing to hear. Many parents that I know of whose children have undergone these surgeries have had to go through them at least twice.
So, that would be a new prayer request for us. We of course want to do whatever is best for Addy to give her the best sight possible, but it would be really nice not to have to go through more surgery... especially multiple surgeries. It would be another 4-6 months before we would get going on another surgery, though, so we have some time to get things a little more figured out. I'll keep you posted.
Oh, and I will post more recent pictures of Addy as soon as I can. :-)
Wednesday, December 1, 2010
Day 2 Post-Op, PM Update
I am pretty sure Addy's swelling reached its peak this afternoon. This was the day I was dreading almost more than the day of the surgery... but it turned out to be not so bad at all!
As I mentioned in my last post, the drain in Addy's head was removed this morning. (She took that like a champ, by the way!) Our nurse who came in afterward was actually a little irritated with the doctors for removing it so soon, because she thought there might be more to drain. This could have potentially contributed to a little extra swelling today, but the nurse later said she must have been wrong because the drainage site hadn't weeped too much after the tube was removed. So most likely it was going to swell about as much as it did anyway.
Addy's eyes were getting pretty tight this morning, but by this afternoon, all I could see was a tiny sliver of eye when she was really trying. Thankfully, she took this like a champ, too, and barely complained at all! It also helped that she slept most of the later morning and afternoon, so she didn't have to struggle with it for long. (I'm thinking this could be partly a credit to the oral antibiotics, which I discovered were probably making her pretty groggy.)
By this evening, her eyes were opening just a little more again, and she was able to see enough to be in a surprisingly good mood! I put her in her stroller and walked her around the halls for a bit, stopping to see a giant fish tank they have here. We watched the fish for a while, and then she turned to me and leaned forward to give me kisses. It was SO sweet!! :-) She then proceeded to smile and even giggle just a little as I played with her for a bit. I can't wait till my girlie is back to normal again... she is getting there!
Oh, also... the reason the doctors wanted to go ahead and remove the drainage tube was so that she could get her follow-up CT scan. We did that this morning not long after the tube was removed, and Addy cooperated very well and settled down into a doze for the scan. Yay!
She is sleeping peacefully right now, so I think I am going to hit the sack before long. I just put up some pictures of our journey over the past few days, so anyone who hasn't already seen the link on Facebook can check it out here. Caution: the reason I am not posting these on the blog is because they might be a little icky for anyone who is a bit squeamish. I really don't think they're that bad, but then I'm used to seeing things like this by now. So view at your own risk. ;-)
OH! And did I mention we can probably go home tomorrow morning? YAY!!!! :-)
Day 2 Post-Op, AM Update
Addy's drainage tube was removed this morning, so she is officially wireless! ;)
We had an adventure with her IV last night, though. She had an IV in her foot, but she kicked it off yesterday afternoon (didn't seem to hurt... she hates things on her feet, so I think she was happier without it). Addy already has a bunch of marks from other sticks (apparently others were having the same problem before they got the original IV in), so it was really hard to find a good spot that hadn't already recently been poked. A lady from the IV team came in and stuck her three times trying to get a line in and was unsuccessful. Another lady came in, looked for a while, and said she couldn't find any good place to stick... Later, two more ladies came in and stuck her twice more before they finally gave up. By this point, Addy was so upset and exhausted, and I was in tears. POOR BABY!!! I really can't blame the nurses (although I was a little ticked that they kept saying they wouldn't stick her unless they found a good vein and then stuck her anyway)... but the doctor in charge was apparently pretty set on having an IV in. Finally, the pediatric nurse was able to convince him to switch her to oral meds so she didn't need an IV. (If he had been in the room watching this whole thing, I have a feeling he would have changed his mind a lot faster.) THANK YOU, LORD!!!
The swelling is supposed to be at its worst today... Her eyes are pretty swollen at this point, but so far she can still open them a least a tiny bit. She will have a CT scan this afternoon to check up on everything. Please be praying this day will go well, especially that she will be able to keep down all her oral meds. Addy has a bit of phlegm in her throat and a little cough, so she has been tending to cough and gag a little when the meds are going in, and a bit of her pain medication came up last time. Thankfully, she seems to be doing okay on pain, and the IV was more for the purpose of antibiotics, which she did keep down. I am really hoping and praying we can keep it this way and not have to put her through anymore of what happened last night!!!
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