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.