Thursday, October 11, 2012

Holding my own

So I started the new medication and after a week had to stop due to some possible side effects that we were not sure were related to the medication or the virus I had.  After a week off the medication Mommy, Daddy and Dr L thought it was safe to restart.

I'm about to start my fourth week of the medication and so far so good.  What does that mean exactly, well I am no worse and seem to be moving in the right direction.  It's difficult to say what could be the medication and what is my normal progression.  We are walking a very fine line and having to monitor things very closely (weekly Neuro contacts, EKG's, EEG's, ultrasounds, lab work).  I am holding at a steady dose for now and will meet with Dr L in the morning to discuss where we go from here.

Adding to everything going one I have been struggling with teething.  For the past six weeks I have not been sleeping due to swollen gums and some tummy issues.  Night time is a difficult time for me, and mommy and I spend many (very) early morning hours listening to music and singing as that is the only thing that seems to help me calm down.  I will be going to my second music class this week; hoping to get my grove on again.

After hard work in therapy on using my hands I have now mastered the skill of waving.  I wave all day and night.... and doing a good job at my version of peek-a-boo.


5 comments:

emm kean said...

the video was private--but photo was precious---emily

emm kean said...

always happy to catch up on Harpers progress. xoxo

Lisa Volpato said...

Would love to know more about the new medication...our son has the same neuro genetic condition and seems to be following Harper's progress...we are so grateful for that. He is only 8 months so his doc is really relectant to start the medication...thanks.

Harper Johnson said...

Lisa so good to hear from you. Please email me at scottyandjim@yahoo

Jessica Muzzy said...

Hi, my name is Jessica Muzzy, my son was diagnosed with the same seizure disorder as harper. He was first diagnosed with ohtahara syndrome also and just about three weeks ago we found out that he has this rare mutation, we have also started the potiga and he has been on it for a week now, he seems to be making some progress already. it would be really nice to chat with you, its really nice talking to people who actually understand what you're going through.