New Updates..

C Updates

Well the new ophthalmologist says he thinks C can see just fine. He thinks she has attention problems and just gets so focused on what is in front of her that she does not pay attention to her surroundings. He did notice some pallor on one of her optic nerves though, so she will continue having MRIs every 3 months. Poor kid, she has had more MRIs than years she has been alive.

C also just started a special ed type preschool. It is a language program. The goal is to get her to talk. She also will receive help with Occupational Therapy, Physical Therapy and Visual Therapy. She seems to like it, she does not cry when I leave her. I love the big hugs and kisses I get when I pick her up!

She is doing better on a lot of fronts. She can JUMP now!

She has a neuro/psych eval coming up as well as visits with neurologists and orthopedics.


S Updates

S went to see the GI doctor because she has trouble swallowing. We also found out that day that she was impacted (severe constipation). She had not complained, and had even told me she had been going to the bathroom, so we did not know. I had my suspicions and she even seemed distended to me..but I am just a nurse, not a doctor so I asked about it while we were there. We had to do a cleanse and now she is on medication for it because they think it will be a chronic problem, especially since she is not feeling it. They think the brain stem tumor is at the root of the problem. It is causing problems with peristalsis of food through her GI tract.

She has some more tests coming up soon. They are going to do a video swallow exam to see how much her swallowing is affected. She also has a neurology and neuro surgeon visit coming up in late March. We will see what they say. Her next MRI is also in March.


Just please keep them in your prayers!