9/11/08- Update!

I finally have a moment to send out a small update, so here I go...

As you all know we have started weaning Addisyn off the Phenobarbital once again...Her Neurologist in Oakland wanted to wean her really slow and have her stop completely in the middle of October..

Well, John and I haven't been that happy with her current care so this past Tuesday I was very fortunate to get a second opinion with an awesome doctor in Sacramento..I was reffered to him by several people including my mom and the Dr. she works for.. After having a consulation with Dr. Asaikar I made the decision to transfer all of Addisyn's Neurology care to him. Dr. Asaikar is in his own office with only one other doctor which I also was introduced to and fell in love with him as well. I am so happy that when Addisyn is in the hospital again she will get to see her Dr. whereas at Oakland we never saw her Dr. once during her 4 day stay! That just did not settle well with us so this is great news.

Dr. Asaikar has 5 other Sturge Weber Patients with the oldest being 20 years old and getting ready to go to College and has a job...That patient also had the Brain surgery where they removed half of his brain. He gives us a tremendous amount of hope!

Addisyn and I will be traveling to Sacramento quite often for appointments with Dr. Asaikar as he wants to see her quite frequently. In our consulation he said that we are weaning Addisyn off the Phenobarbital to slowly and to speed up the process so next week will be here last week on that medication...We can't wait!!!

I almost forgot to mention that Addisyn had a follow up with her Opthomologist on Monday and her pressures are down to 14 and 17 in the Glaucoma eye! That is great...Before she ever had surgery her pressures were at 34 so that is obviously working however he still wants to do an exam under anesthesia on October 21st as he needs to take pictures and measurements.

Addisyn is still doing great with her ear tubes. We will be making our second trip to San Francisco next week on our Anniversary for another round of Laser Surgery....The time has flown by and I can't believe it is already next week...I will be sure to keep you all updated and be watching for many pictures to come!!!

Brysen is doing amazing and getting smarter everyday! He is super bossy and we have no idea where he get's it from! LOL... He is already telling us what he is asking Santa for and reminds us everyday that it is almost time to go to the Pumpkin Patch...

I hope everyone is doing well...Gotta run...The kiddos are both screaming at me for something!