Many of you have asked - Georgia's big follow-up appointment at Children's on Thursday went very well. Thanks for all of the thoughts and prayers! It was a busy day - an hour session for occupational/constraint therapy in the morning followed by 4 hours at the brain tumor clinic in the afternoon, and to top off the day, a slip on the ice complete with a head bonk on the concrete. The latter scared the you-know-what out of us, but Georgia is fine. She luckily hit the back of her head not where the shunt is and never had any signs of concussion or injury. Since she had just had an MRI last week, we really didn't want to head back down to Children's for another scan after being there all day. Needless to say, Mom and Dad needed to cope with a few glasses of wine at dinner...
As for the appointment - the good folks at the brain tumor clinic do it right! Even though we are far from tumor concerns, they still let us follow there since it is a way we can see all of Georgia's specialists in one visit. Everyone was thrilled with how Georgia is doing and needless to say they are still smitten with our little wonder :) Here's a quick run-down:
- Neurology: Seizure-free for as much as well can tell! Georgia will have a follow-up EEG in May or June. She is currently still on lamictal, her one and only seizure med. We'll discuss after the EEG in the spring as to whether we trial her completely off medications. That's going to be a tough one...as much as we would like her off of everything, there is some security in knowing she has something on board. Otherwise, Dr. Knupp was also as thrilled as we have been to hear that Georgia's sleep issues have resolved. Please, everyone knock on wood...being able to sleep through the night has become a simple pleasure!
- Neurosurgery: Dr. Hankinson (Dr. Handler's side-kick) reviewed Georgia's MRI with us and was very pleased to see the results - it does appear that the fluid/pressure has resolved. It's not a pretty MRI, but you can never tell that by looking at her which is most important. And her left side looks picture perfect and that's what matters now! Follow-up MRI again in 6mo.
- Neuropsychology: Dr. Wilkening popped in quickly - no news here. Georgia will have a big 3hr developmental assessment in February. She did poorly at last attempt since she was having so many seizures, so we are excited to see how well she will do now.
- Neuro-oncology: No offense Dr. Foreman, but we are glad you didn't have much to say. No evidence of tumor for 2 and a half years now!
- Rehabilitation: Dr. Biffl is basically the therapy doc. She is a former physical therapist turned MD so we really feel in good hands. She was thrilled to see how well Georgia is doing especially with her gross motor activity/walking. She shares our concern with the left hand but is helping us plan for more intense constraint therapy. I think we mentioned this before, but this is basically when we immobilize Georgia's right hand to force her to use her left. We are aiming for 2hrs per day right now, and Georgia is doing very well - very little frustration which is amazing! She is a crafty little bugger though and is able to use her mouth sometimes more than her left hand. Frustrating as this is to her therapist, it is also a good sign that she has the where-with-all to problem solve! We'll see Dr. Biffl again in 2-3mo and will likely have to look into more botox for Georgia's hand/arm at that time as well.
- Opthamology: We were most anxious to see The King (Dr. King, that is!) since at her last visit with him, he was worried about persistent pressure in her left eye. The good news is that her exam is stable which correlates with the fact that her MRI looks better. The "bad" news is that we won't know if the damage has affected her vision until she is old enough to tell us so. She isn't running into things and doesn't appear to have trouble seeing things except for her existing left field of vision loss so we're hopeful it's minimal. Funny part of our vist with The King...Georgia had to identify some pictures instead of using the regular letter eye chart. She nailed most of them, except when she was shown a duck, she said "stinky toes" - not sure where that came from but it made us all chuckle.
- Dentistry: what you say?! So did we - this was a first. Apparently kids who undergo chemo or radiation for brain tumors need a dental follow-up as well for impact of the treatments on gum and teeth help. We luckily just talked about how we need to ditch the binky :)
Some east coast culture in Rochester
Rockin the playdoh Lillian will be keeping up in no time!
