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!!
6 comments:
Would love to know an update on Addy. My daughter is only a few weeks old but I believe she could have the same condition as Addy. They look so similar.
Hi Alissa! I might post a more detailed update tomorrow, but overall Addy is healthy, happy, and doing well! She is now 10 years old, and as far as she is concerned, this whole experience with craniosynostosis is just another one of those stories we tell about when she was a baby.
Congrats on your baby girl! I wish you well on your journey with this possible diagnosis. There is a group on Facebook with many parents who have gone through / are going through the same thing. Definitely recommend it as a resource for the questions and concerns I’m sure you have! It’s called “Cranio Kids- Craniosynostosis Support“. Blessings.
Hi, I'd love to have an update as well. Thank you for sharing your beautiful journey with Addy. 😊
I am just seeing you responded! My daughter in fact does have the same craniosynostosis as your daughter. And she is two weeks post up. She has a distractor on her skull that we her parents turn twice a day for most likely 3 weeks and then it is removed! We had her surgery done at Children’s hospital of Philadelphia. She is already looking so different in only two weeks. She will be 6 months in a few weeks. We have seen an eye doctor as well. And as far as right now her eyes are ok.
I wanted to say thank you. Honestly when I first noticed something off about my daughter April’s forehead and eye shape. I googled it. And your blog was on of the first things to come up. I sent Addys photo to my mom and husband convinced that it was what my daughter April had. I pushed her doctor to send me to a specialist. And she was diagnosed at 4 weeks with it once we went to CHOP. Because of that we were able to do the less invasive surgery with the distractor. All the doctors could not believe I noticed it this early and caught it. A big thank you goes to you and making this blog 10 years ago. I’ve now connected with a lot of cranio parents and found the organization cranio Care Bears. Thank you so much for putting this out there publicly. It has helped me and I’m sure helped many other parents. I’m happy to here Addy is doing well.
I’m so glad to hear this! Glad your daughter was promptly diagnosed and that she’s doing well. It’s so interesting how the technology and treatment for this condition has advanced over the years. This sounds a bit like the palate expander Addy currently has in her mouth! :)
Glad to hear your daughter doesn’t seem to have any trouble with her eyes. That is the one main complication Addy still has remaining from her cranio experience. (I obviously forgot to post the update I mentioned before, oops!)
Anyway, I appreciate you coming back to share this and update on your daughter. I hope the rest of her treatment goes smoothly!
Oh my, I just saw your comment today, sorry! I will see if I can get an update up sometime soon. :-p
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