We pride ourselves on having the friendliest
and most welcoming forums for moms and moms to be! Please take a moment
for free so you can be a part of our growing community of mothers.
If you have any problems registering please drop an email to firstname.lastname@example.org.
Our community is moderated by our moderation team so you won't see spam or offensive messages posted on our forums. Each of our message boards is hosted by JustMommies hosts, whose names are listed at the top each board. We hope you find our message boards friendly, helpful, and fun to be on!
Hello everybody! Hope everyone's doing well. We've just been reconnected after the move (nearly 3 months ago!!).
Just a bit of an update:
Honey had her MRI in June, went well, she was an angel, no fuss.
Went for an app today to discuss results, she has all 3 brain abnormalities associated with SOD, the back part of her pituitary is also in the wrong place and is very small so they're going to keep an eye on her for diabetes insipidus. They said the rest of her brain looks normal, which is encouraging. But on a down note they commented that both eyes seem to have ONH. Her opthalmic tests before now have shown that the right eye has ONH but the left looked as if it might have been ok. She sees with the right eye, confusesd me as it should have been the bad one, and the left has atarted turning up and in.
Hey glad you are back. I was wondering how things were going.
I am glad that Honey got the MRI done and that she did so well with it. I am sorry that she has all the hallmarks of SOD, but at least now you have a definitive answer, big sigh of relief. Is she getting vision therapy? I am pretty sure you said she was, but if she isn't, definitely push for it. It was absolutely wonderful for my dd. They told us that the best we could hope for was light perception, and now she has 8-10 feet of clear vision and can see blurry out to about 20 feet. Vision develops until they are at least 2, so if you can keep stimulating her to use her vision, you may see some improvement.
And if you have any questions, please ask me. I have been through pretty much all of it with Alexis, so I will be glad to answer any questions you may have.
<div align="center">Thanks Alison's Mommy, SillyMama, Katarina and samylaine for my blinkies.</div>
hello, welcone back, i'd also been wondering how you and honey were doing. i'm so sorry to hear of her diagnosis but like jennifer said it's great that youve now had some answers. really hope things are going well for you all and youre enjoying your new home