After rereading the previous post, I realized maybe I should proof read a little better for it to be understandable. When the neuro team came in yesterday morning, they told me they had a full day planned after reviewing everything more.
Opthamalogy was in and out a few times, dilated her eyes and looked at them. They were checking for bleeding further, which, I don't think they saw. I think they saw something that sparked their interest, but not really sure.
Speech came by to check out the whole feeding situation, gave some tips, but I don't think she saw anything glaring wrong.
A social worker came by. Kind of funny story (I can laugh about it now). When she introduced herself, I just started crying, "you're here (sniffle, sniffle) because of DHS (sniffle, sniffle)?" "Oh no...you were just on my rotation to see today. How are you?" Obviously, she sat and talked for a while with this falling apart Momma.
PT tried to come in at one point, but Maggie was sleeping good and she said she'd be back later.
She got the EEG off for now to allow her sweet little head to breathe a bit. I love being able to snuggle with her and nurse her again!
The genetics team is supposed to be coming by too. I didn't see them yesterday, so I assume maybe tomorrow. This is not a fun road to be on at all. We already sent the lab for quite a few deficiencies and a gene disorder. Really pray for my mind as we head down this route. Many gene disorders do not have a very promising prognosis. I want to and need to be informed, but pray that we don't let our minds dwell in the what-ifs and could-bes. It's clearly a way for Satan to try to get a foothold in the mind.
With the idea of DHS, I thought, "really Satan, is that the best you've got?!? Bring it!" And he did when I started reading about some of these disorders. There is most definitely a war being waged and God surely has been glorified through all of, so why wouldn't Satan try a little harder to destroy us. We can continue to rest in God's promises. But...the whole genetics path could be very trying and difficult. Pray for us to focus on the truth of NOW!
And, why am I up again at this wee hour, you ask...Maggie is still throwing up. As most parents would know, that is something that snaps you right out of any foggy, sleepy haze and leaves you awake for a bit. We don't have any leads in this one. She is taking in more milk again now that seizures are back under control, so my hope is that some of those nutrients are staying down, but we are going on quite a while now with having to stay on fluids for lack of intake (more so the non-normal way of output)
Please continue to pray for Shawn as he is working. He wants to keep his mind focused and clear in order to survive this crazy week/weekend. Pray for him to keep himself in check, that he doesn't explode on any grumpy, complaining people around him. Obviously, Shawn has a reason to completely implode and he has people around him b****ing and moaning about ridiculous stuff. He is definitely on survival mode right now. I've got it easy because I'm here with Maggie, and I can see her overall attitude. He did point out how comforting it is to hear her cooing and smiling, because it let's us know that she is still herself and not in a lot of pain.
Ok...finally tired now. Back to sleep for a bit for me!