Update July to November 2011

July through November were possibly the hardest five months since Lily was born. She had ear tubes, urinary resection, and a hernia surgery--all in a matter of 2 months. Then, Lily started having seizures that were lasting 10 minutes and beyond to having a full hour and a half of clusters of seizures that would not abate with rectal Diastat. It was so scary, feeling like we could not control these seizures. An hour and a half of watching your child have seizures will test your faith and force you to dig into the depths of your soul to cope. It was so hard on Lily's little body, she was so exhausted and fussy and her quality of life had diminished greatly. Then, came the vomiting...sometimes seven times a day. She went to the emergency room many times and was even hospitalized. She was losing weight, hard to keep hydrated, and she felt just terrible. Everyone was exhausted, scared, and feeling as though something was very wrong, but what was it? Well, we keep logs of everything Lilliana does with meds, seizures, etc. and eventually we discovered that Lamictal (one of her seizure drugs) seemed to correlate with the vomiting. So, as we lowered the Lamitcal, things got better! Now she is only having 1-3 small seizures every day. Even better, she started babbling again, trying to crawl, playing with toys, giving eye contact, and laughing a thousand times a day. We are so happy that we have found the culprit and our sweet girl is doing so much better. She is well recovered from the surgeries and the Lamictal issues...now to that growing brain tumor.