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.

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!

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 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. :-)

Enjoying the swings

Sliding down the slide all by herself!

God is good. I pray Addy continues to do as well as she has done so far.

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. :-)

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!! :-)

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!

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.