An update on Savanna’s situation.
She is 4 weeks post-operative, and she is well. We have started to titrate down some of her medications, but she is still on basically the same panel of medications that she was prior to the operation. This is keeping her quite sedated. We are starting to reduce the Onfi first, and see how she responds. Despite the level of sedation, we are happy to report significant changes. The biggest change we have seen is the engagement in her environment. She seems to see her world differently now than she did prior to the surgery. I looked at her over the crib rail one day and she smiled at me without any stimulation or sounds from me. To most of you that may sound silly or trivial to bring up, but for me personally, it was profound. She had never done that before and more importantly, it was a sign that at some level, her brain is working correctly.
She has periods where she tolerates sitting up in a bumbo seat or bouncer or something similar. It is really rewarding to see that type of progress. We still harbor a guarded optimism for her immediate outlook as we know some of the facts. We know that the Sabril could be helping to suppress the Infantile Spasms. Should we lower that dosage and the Spasms return, it would be another fork in the road of her journey to put it nicely. Also we know that if Savanna would not have struggled as much as she did during the surgery, the surgical team would have expanded the resection. While not trying to be an eternal pessimist, it is important that we have some emotional preparation for what the future may hold. Another surgery is quite probable, and a life-long battle with seizures is also quite possible.
Unfortunately, we are still seeing abnormal activity at times. Just last night, she was having a really difficult time sleeping, and I witness about 6 hours of what I would consider a seizure-filled period. I am not positive that what I saw was seizures, but it would appear she has some partial activity still in the background, and it occasionally spikes enough to cause complex or clinical indications. I am certain that a VTM/LTM is in her near future to diagnose what we are witnessing. She has become quite cross-eyed lately and it is asymmetric in nature. What is weird is that the opposite eye is effected than prior to the operation.
We are told she may be experiencing many circumstantial situations as she develops a new baseline. In the mix too is that she is growing, and with infants, things can change fast as we have learned. So, it may be possible she doesn’t reach a baseline for quite some time. We have scheduled clinic visits to see the doctors in the neurosurgery, neurology, ophthalmology, and genetics departments next week. We will send our blood samples to a couple of different labs to sequence her exome and our genome. We are starting therapy again for motor skills, speech, and cognition.
I have included some pictures here that are from the last couple of weeks. She truly is an angel and while we live the myth of Thanksgiving nowadays, we are very thankful this year for what God has given our family. The true story of Thanksgiving has long since been white-washed and papered over with liberal textbooks. It is a day that requires some inward thought about the real story, our past, and the future of our country.
For those of you who might want a closer look at what she underwent 4 weeks ago, there is a hidden link on our website that shows a few pictures from the surgery. [taken down, as of 2-2013] I am not posting the link, to the pictures, just to the website. The link is the homepage picture. It is mobile friendly. Warning: they are graphic.
Have a great Holiday this weekend, and hope this email finds you and your family well.
Mom and Dad
(Ken and Rebecca)