Know what else has helped our positive attitude? Good news! That's right, we have some good news to report!
- #1 - We followed-up with the professor at Stanford and asked him to help explain his email. We gave him the gestational age at which the MRI was taken, and he responded that both the smooth gyri and the cortical mantle patterning could be related to the early gestational age or the venticulomegaly/hydrocephalus, or both.
- #2 - We contacted our pediatric neurosurgeon, who re-reviewed our MRI images and said he did not see the abnormalities that the professor identified in his email to us. (We forwarded him the professor's email, just so nothing would get lost in translation.) He said the diagnosis remains "hydrocephalus/ventriculomegaly due to aqueductal stenosis."
I'm not sure where this leaves us, since we now have two conflicting opinions, but I'm going to consider this to be a positive development.
Hi Amy and Brad, we are following your progress closely and wishing you the very best. We do hope the steps forward exceed the ones back. Can't say I really understand all the medical stuff, but our prayers are with Claire and both of you for a positive outcome.
ReplyDeleteTake care
Love, Maureen and Fred
I love your positive attitude. I remember the roller coaster ride that you guys are on now so clearly. Remember that as much information as you gather now, you won't know what little Claire has in store for you until she makes her appearance. Once the pressure from the fluid is relieved, that little brain make look much different in the next scan. We'll continue to keep you in our prayers.
ReplyDeletePositive is good! I'll also echo what Jen said, once the pressure is off their brains, they change so much! The difference in Elijah's scans when we compare the scans from the day he was born to a few days after the surgery were incredible and by a year it was downright amazing! :c)
ReplyDeleteThanks, Jenn & Jennifer! It is incredibly nice have that reassurance. The more I hear from other moms who have been through this, the more I am convinced that it's not so much about what the MRIs show as it is about what the baby is actually doing. I feel so blessed to have found you guys, and I don't know how Brad and I would manage to keep our sanity without you!
ReplyDeleteKeep positive...some days it is hard. I am praying for your family and your little baby! It is so very reassuring to read all of the hopeful and inspiring stories of these miracle babies and I just keep reminding myself that doctors don't know everything. Our baby is due about 2 months and we can't wait for her to come out and amaze the doctors! Keep strong, pray, and remember, so many things can change along the way. FOR THE BETTER!
ReplyDeletePraying for your family. I just read your comments on the AJC. So glad you're going to Duke, sounds outstanding. God Bless you and your family
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