Winter, with a glimpse of spring

There are a few updates since my last post. Let's start with me... I had some diagnostic imaging completed a couple of weeks ago including an ultrasound of my kidneys and bladder, a CT scan of my chest and lungs, and an MRI of my brain. My kidneys and bladder are normal, my lungs and chest were also unremarkable. However, there were some questionable areas on my liver that will involve further testing to rule out potential issues for me. There were a couple of areas on my spine that were seen as "tuberous," which seems to be consistent with the TS diagnosis. Lastly, my MRI shows 4-5 "tubers" as well, in the same place that Elias has his. Right now, as long as everything is not symptomatic then there's really nothing to worry too much about. I will be following up with a new PCP, adult neuro and going to the lab for some more blood work about my liver situation.

Now, for the Elias update...  

We just got back from DC for our consultation with the doctor and dietician to see if Elias would benefit and be appropriate for the ketogenic diet. There is a lot to consider at this point as the diet requires a somewhat lengthy hospitalization (4 days minimum), in which they will train us exactly how to administer the diet as well as teach us how to monitor his vitals while on the diet. We would have to take off a week from work, which to some may not be a big deal, but considering how much we have been out lately, it's significant to us. Also, we would be responsible for sticking his fingers twice a day once we are back home, and although I know it is for his own good, I don't know if I want to torture my son any more than he has already endured. 

So, that's where we are... do we try this diet for a few months in which we exclude every carb and sugar from his diet (which means no birthday cake for is 1st birthday) or keep things like they are and see how it plays out. There also are a few more adjustments we can make to his current medications to see if it helps reduce the seizures even more. Right now he's only having them around his sleeping patterns (when waking and when fighting falling asleep) instead of randomly throughout the day, which is good. He is also much more attentive, alert, interactive and happy these past few weeks. I am torn as to what to do at this point. We have a lot to consider, think and pray about the next couple of days, even though they are tentatively scheduling us to be back at DC Children's National on March the 4th, unless we cal and say otherwise...

In other news: Elias was a dream this weekend! Such a sweet and good lil guy! We took him to the zoo to kind of have some "normalcy" in a not so normal past few months. He loved it, but he fell asleep about half way through! He learned some new things while we were away. Now he growls and tries to blow kisses, it is so cute! I feel like we are coming out from under this dark cloud that has been hovering for the past 5 months, but the unknown future of my lil guy's life and health still makes me worry... 

Until next time.