We have had an eventful day today. The neurologist discussed the 24 hour EEG results and what he thinks we should do. Both neurologists studied the EEG and are not convinced the 'looks' she is having is definitely a seizure. There was no significant change in her brain waves when they occur. They may be affecting such a small part of her brain that they do not show up on the EEG. He also believes these episodes are so short and infrequent that they will not cause significant brain damage. They found no evidence that they are infantile spasms, this is what we were worried about. Great news!! They are weening her off one medicine because it didn't seem to help much and they side effects outweigh the results. They will try a very small dose of a new medicine that may possibly help. We are being referred to a epileptic specialist at Emory or Vanderbilt so they can help us figure out what is going on.
She had a swallow test to see of she is swallowing correctly. She is not, she sucks down her food so fast that some food ends up in her airways. All we have to do is add some cereal and a different nipple to her bottle. She had cereal for the first time today and she likes it!!! She has a ph probe in right now so they can measure the levels and determine if reflux is contributing to the other things going on.
Once again, she is a trooper. She still only cries when she is hungry or being messed with by needles, wires or tubes. We are so proud of her!!! She got a real bath today which is her favorite thing to do We took her for a walk and let her look at her Christmas tree. She loves looking at the lights. We are so blessed to have an amazing church family who got us a tree for the room. They made ornaments out of paper with words of encouragement and prayers. Wow!!! Such a special and thoughtful thing to do!!
We will probably spend the rest of the week here depending on how the new medicine works. We have plenty of help from family and friends. Thank you!!