Long Awaited Update...

So...I am sorry I never updated after Calleigh's big ordeal. Here is what has happened since then. On April 20 Cal had the first seizure which I already posted about. That Sunday, the 22nd, she had two more seizures and we had to take her back to the ER. They ran lots of tests and the only thing the could find was the pneumonia. Her white blood cell count was a little elevated which supports that her body was trying to fight an infection, so we continued with the antibiotics.

On the 21st I called her neurologist and he immediately scheduled her to have an four hour video EEG. She has had an EEG before and everything was fine, but he wants to make sure that he does not see any abnormal brain waves at this time. If the EEG does show anything abnormal, he plans to put her on anti convulsive medication...no big deal really...we just want to prevent future seizures. Her EEG is scheduled for Monday, May 7th. We have not noticed anymore seizure activity which is very encouraging!

We recently received Calleigh's feeding pump and have started nightly feeds. She is doing well with them, but keeping up her old ways of crying throughout the night. Needless to say...Chris and I don't sleep much! She is being tube feed for 8 hours a night and receiving about 8 oz throughout that time. The last time we had her weight checked she was up to 12 lbs 15 oz...so she is growing well! On May 22nd we will travel to San Antonio to see a feeding team which consists of a Nutritionist, GI doctor, Speech Pathologist and a few other specialist. We just want to make sure we are doing all of the right things and getting her as far ahead of the curve as possible!

We are currently working on sitting and standing with leg braces at therapy and that is going very well! She is making such great progress! On May 10th we have a check up with the Audiologist to make sure her hearing is still good. I know it is because she will turn at the first sound that she hears. She does however have selective hearing. She gets that from her Dad and Brother!

Sorry this is such a long post, but I just wanted to share what was going on with our Princess!! Thanks so much for all of the prayers and well wishes!

Working on sitting at therapy!

All of her nightly tubes attached!

Calleigh's new nightly set up!