Thursday, November 6, 2014

Our Visit with the Vision Therapist

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!!

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!

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...


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!).

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...


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.