Thursday, February 10, 2011

Negative for infantile spasms!!

His EEG looked normal-yay! I am so happy we don't have to trek down that road! But his neurologist said that sometimes they don't show up if they just started having them....awesome. But I think that Nick has been having his 'fits' for a couple months so we may be in the clear. I really just think he has major balance issues. It's so hard to tell when he can't even hold up his head yet. We just have to watch him and possibly catch it on video if he continues to do it.
He also saw Nephrology on Thursday and they don't seem too worried about the cysts on his kidney's or the shape of them. But they want to do a follow-up ultrasound to make sure the cysts are decreasing and not increasing. His urine test and BMP were normal.
We also got him started on some acid reflux medicine. It hasn't started working yet but his pediatrician said it would take awhile and eventually, hopefully he won't spit up very much anymore. Nick hasn't had a huge problem with spitting up but sometimes when he does he gags on it, I am sure it burns, and I really think he aspirates a lot of times...poor baby. He cries so hard he turns blue and when people see it they are kinda freaked out but I just remind them that he is okay-it happens occasionally.

We also found him some new sunglasses. We originally got him Baby Banz but they smush into his face so much he can't stand them. He doesn't have much of a nasal bridge and his cheeks are so fat it has been hard finding something. The ones we found don't have a band but he hasn't learned how to pull things off his face they work for now.

Yeah...the gold looks kinda funny :o) But it's the only color the optician had.

We have a full week ahead of us. Monday is renal ultrasound, Wednesday is his cardiology appointment, Thursday is his 6 month checkup and Friday is his PAT appointment (pre-admission testing) for his surgery the following week.

As always we want to thank you for all your prayers, comments and thoughts.
God Bless and have a wonderful weekend!


  1. So happy to hear about the EEG. Good luck next week.
    He makes those sunglasses look good!

  2. HI there,
    I just read your post below, describing Nick's daughter had the EXACT SAME THING, and she DOES have balance issues. The Neurologist totally freaked out on us saying they were infantile spasms, but after doing the 24-48 hr EEG, she was completely cleared. We have not had seizure issues with her. All we would have to do was make Moriah feel secure and safe and she wouldn't go into what we called her startles. We knew we could control them for her. I haven't even finished reading the rest of your story, but felt I had to comment immediately to let you know that you're not alone in this...we went through the exact same thing!
    Please dont hesitate to contact me if you have anymore questions.