So because of this, we decided to try to get her CT scan done a bit earlier than the surgeons were originally planning. Normally, they do it very close to the surgery date, just so they can get an up-to-date road map for the surgery, so to speak. However, it is not completely necessary to wait that long, and I will feel a lot better if we can determine that it will not be dangerous or miserable for Addy to wait until November for her surgery. I have it on good authority that if for some reason the CT shows that her brain is under pressure (causing the headaches) or something else to show that she needs surgery earlier, they will make it a priority to get Addy in as soon as she needs. Her doctor normally likes to do these surgeries when the baby is around 7 months old, but we will see if that is best for Addy or not. Our CT scan and then appointment with Dr. M are scheduled for Sept. 16, three weeks from today.
We would appreciate prayers for this appointment. We want the CT reading to be as good / accurate as possible, so Addy will need to be very still -- either asleep or under some mild anesthesia. Natural sleep would obviously be preferred, but please be praying that God would allow whatever is best to get a good scan. Please also pray for our appointment with the doctor -- that we would be able to get our questions answered and determine whether the date in November will be the best date for her surgery.
On another note, I have been finding some great advice and encouragement from the moms on the online forum mentioned above! It is really nice to be able to talk with other moms who have dealt with the same things that we are going through, and to receive help from them about what to expect, what to watch for, questions to ask, etc.
Oh, and by the way... I don't remember if I mentioned this before, but Addy also has a bit of a head tilt, and her left eye drifts a little bit to the outside and down from the other eye. I used to think the head tilt was just because the left side of her head is bigger (and thus heavier), and it might just be the weight of it that is causing her to tilt her head. Several of the moms mentioned that their children had the same issue, though, and in some cases it seemed possible that it wasn't really related to the craniosynostosis (although some of the moms did specifically say that it got better after the surgery). Several of them also mentioned eye problems, which could very well be related to the head tilt... I have heard both that the head tilt can cause the eyes to set themselves differently so the baby can see clearly, and vice versa -- that the eyes can be misaligned and cause the baby to tilt his/her head to level out the eyes. I am not sure that either of these is the case for Addy, but I do suspect that the two are somewhat related. I have heard that giving her more tummy time can at least help the neck issue, and since I have been encouraging that, both the head tilt and the eye issue seem to have improved a little.
In any case, please be praying that we can figure out what is causing both these issues and get them resolved.
Thanks to everyone for all your prayers and support!!!