Worsening eye movements

We met with Dr. B., Hannah’s pediatrician, on Friday for her monthly check-up.

Her head circumference growth seems to have leveled off and actually didn’t change in the past 3 weeks.  This is good news in hopes that she does not have hydrocephalus!  We will still probably be doing an MRI of the brain at the National Institute of Health in July, however.

Hannah’s spleen really is starting to shrink now.  Before it went 5 cm below her costal bone (rib), and Friday, it is almost at the 3+ cm mark!  What a big difference!  Her liver is also starting to shrink a bit now.  Her platelets, however, went down just a bit to 147,000 (we were hoping for a raise since the spleen is shrinking).

Everything else was what we already knew except her worsening eye movements.   Daddy and I have been noticing it for the past few weeks, but Dr. B. saw it and mentioned it, so I knew it was true. 

I don’t know what the medical term is for it, but she seems to have trouble moving her eyes to where she wants them to go.   For example, she was in her exersaucer today, facing away from me.  I called her name, and you can see she got really excited, jumping up and down, and with a huge grin.  However, even though she started moving her body towards me, she couldn’t seem to get her eyes to unlock from straight ahead where she was. 

It is like we go through days where everything seems great, but then we get hit with these reminders that she really does have this progressive nasty disease, and it breaks my heart.  Now that it is more often and more noticeable, these reminders happen more often now.