No more Pheno (barbital, that is)

So I just requested and got permission to stop giving Gesina phenobarbital! With her dose at 1/2 pill at night, she was not taking enough to be at a therapeutic level and it's been nearly 2 months since her last decrease. No seizures but of course, a few moments that make you go "hmmm". When she's sleepy she does this odd eye open/close thing every now and then. I've only seen it about 3 times and it corrects itself as she either goes to sleep or wakes up. But either way, I don't see them as seizure activity and in a month I see her neurologist and I'll let him know. I'm hoping he'll want to repeat her EEG so we can see if they have changed at all. Her zonisimide is supposed to "normalize" her abnormal EEGs so I'm curious to see if that has happened. She started that med nearly a year ago so I sure hope so! Here she is as she stops to smell the wildflowers at daycare.

Gesina is also loving her water therapy. She is starting to kick the side of the pool with her feet and me or her therapist (whoever is with her in the pool at the time) exaggerate the effect that has on her body. Her PT says Gesina is very talkative in the water and loves to hear the chatter of the ladies doing water aerobics with her in the pool. Unfortunately for me, the recplex pool I take her to is not as warm as the therapy pool at the YMCA. This means within about 10 minutes in the water she is shivering and her little lips are blue! The other unfortunate thing is the recplex pool is child-oriented with slides and all kinds of waterpark features. For us this means that after being in the pool about 20 minutes, inevitably someone's little bundle of joy will $h!+ in the pool. I'm not saying that will not be Gesina some day, but note to self, swim diapers are always a good idea! Here's Gesina after the pool when she won't stop smiling; not even for me to clean and dress her!

More good news about the water therapy is that I've finally gotten one-on-one time with her PT. In the past we never crossed paths but now I can finally talk to her about what Gesina can do. Gesina is most active at night and has been known to, for months now, stand with my assistance. She stands by resting her arms and head on my shoulder. PT sees Gesina in the morning when she's knocked out from her Clonazapam and isn't capable of nearly as much. Well I've been able to talk to PT and show her some of the things I do with her. I've even gotten her to see Gesina needs a stander! Here she is in her new stander.

Just look at that head control! She's been so strong lately and good at keeping her head up more. I'm hoping she continues this string of successes because it is so FUN to watch! She's amazing, and I love her!