Uriah does still have Hydrocephalus (fluid on the brain) pretty significantly but they think it has been caused by him having Lobar Holoprosencephaly (where his upper front brain didn’t divide as it should).
Now, the good thing is that the “Lobar” version is the most mild version of Holoprocsencephaly.
We will not know what the outcome will be because there are so many factors with both Hydrocephalus and the Lobar Holoprosencephaly. Many kids can develop normally, some have medium learning disabilities, and some can be far worse.
But the good news is that it they think it is the “Lobar” level (the mildest version) and his other organs look good.
So, some very possible things we will have to deal with are: intellectual and mental delays or disabilities, seizures, disabilities with his motor functions (muscle control and such), possible optic problems (his sight), and he will still need a shunt placed to drain the fluid.
But, even though those may sound bad, this was good for us to hear! It will be hard but we can work with Uriah on these issues. He may never be a “level 10” intellectually (or he totally could be!) but that doesn’t mean he has to be a “level 0.” We are both dedicated to helping him grow through these things even if they take much longer for him than for other kids. We can help him by being hands-on, getting him therapy, and working with his muscles.
At least we know that he has a good chance for survival and has the mildest form of the “Lobar” level.
Plus, its been 10 days since my water broke and no contractions or labor so I’m cleared for wheel chair rides, eating lunch in the cafeteria, and going outside. 🙂 The doctor feels I have a good chance of carrying Uriah to the 34 week mark (although things can always change especially if I were to get an infection). Dalton’s already wheeled me outside into the sun and around the cafeteria (he’s still the best).
That’s our latest news. To some people this could sound bad but we actually feel hopeful again. Thank you all for your love, prayers, and support. We SO appreciate you!
Love, blessings, and coffee,