Spring is coming!

I haven't written in a while. There hasn't been much to write about lately. I guess that is a good thing. I have still not had time to go have my blood work done on my liver... I am going to try and do that this week. We have all had colds/sinus infections or something at out house the past couple of weeks. I never realized how contagious babies can be!

Tomorrow is Rare Diseases Day. TSC is considered a rare disease, however, I am not sure if I am ready to "shout it from the roof tops" that my son and I have this disease... I guess blogging about it is not exactly keeping it to myself either...

I did join a support group called TSAlliance on facebook today. It is hard to come to grips with our situation, but at the same time, I feel blessed sometimes because it could always be worse. I am mostly concerned for Elias' future. I want him to grow up and be typically developing, what parent wouldn't want that for their child... but we don't know how these seizures are going to impact him in the long run. That is the harsh reality and the scary part for all of us.

He is still having seizures around his sleeping patterns (upon waking and when fighting sleep) despite maxing out his Topamax dosage. My husband called DC Children's National Hospital and declined the ketogenic diet at this time. It was just going to be too much with both of us needing to be off work for a week not to mention all the details involved and the nearly torturous things we were going to have to do to monitor Elias' stats (pricking his finger twice a day every day for 2 weeks... I can barely get him to take his medication some nights!)

Other than that there have really been minimal changes. I have feel like we have fallen into somewhat of a normal routine the past couple of weeks, which has been nice. Monday of next week I will meet the OT that has been working with Elias. I was really excited because today he woke up from his nap, grabbed his squishy toy ball, held it for a while, and then switched it from one had to the other!!
That may not seem like much to some of you, but it is a kind of big deal for our lil guy! If i could just get him to hold his own bottle! That will be the kicker!

Anyway, I will update again after I go get my blood work and see what all is going on with my liver as well as anything new once we have OT this coming week! Thanks for reading :)