Monday, May 23, 2011

After two rounds of the flu for Dallas, we finally made it to his neurology appointment.  The neurologist does not believe that his 2 seizures were febrile ones.  He is calling them generalized seizures....which I think pretty much means completely undefined!!!  Because the seizures were so different and we are not able to give exact information regarding them given the state of panic we were in, it is hard to identify exactly what type of seizure each one was.  The chances of Dallas having another one are 50%.  We held off on starting an anti-seizure medication, but that will be the course of action should he have another one.  The more time that goes by without a seizure, the better for Dallas (and for us!).  The neurologist thinks that given Dallas's developmental delay (due to CHARGE), and Dandy-Walker variant, Dallas is a perfect candidate for seizures.  For now, we just wait and see.  He did give us an emergency stop seizure medication to give Dallas should he have another one.

Our biggest focus right now is eating.  He had another swallow study done and he did not pass.  He still cannot swallow thin liquids, which was a disappointment as we thought by now he may have outgrown it.  They are looking more into potential reasons "why" his swallow is not coming, just to make sure there isn't something that can be done surgically.  It is most likely due to the anomalies affecting his cranial nerves that impact his ability to swallow.  He does have airway issues that also contribute.  We are also attempting to get him eating mashed up table food, baby puffs, cheetos, anything besides pureed, chunk-free baby food!  We are having some luck, but not much.  This is definitely a marathon, not a race.  He has tolerated some changes very well, such as eating food at room temp versus very warm.  This helps with feeding on the go.

The second biggest focus is his low muscle tone.  Still working on sitting.  This has taken months and it can get very discouraging at times.  I told him we have to be sitting independently to open presents at his birthday party!  Only about 2-weeks left.

Dallas amazes us and makes our hearts grow bigger everyday.  He is truly a joy in every way.

His big sister will be turning "3" on May 28th, and we celebrated her birthday yesterday!