All That Is New :)

Since I have clearly been a slacker and have not been updating this blog as I should be, here is a quick overview of all the stuff that has been going on with us and Elle.

Elle had been seizure free since December. In early April, she had her first break-through seizure. I found her in her crib and was able to rush her to the ER that is about 10 minutes away. She recovered and came home early that evening. The next morning, I got up to go to the gym before Andy left for work. When I came home an hour later I found Rescue in front of the house! Andy, being the great daddy that he is, didn't hear Elle stirring at her usual time that morning. He went in to check on her and found her having another seizure. This one was a bit more involved than the day prior. They got Elle downtown to Wolfsons Children Hospital where she was admitted into the PICU and stayed for 3 days. During this time Elle was found to have developed bi-lateral cataracts !! Cataracts? How the hell does a baby get Cataracts?? We may never know that answer to that question as all the blood tests came back negative. Elle needed surgey on both eyes to regain her eye sight. How many times can a heart break? We got through 6 weeks of Elle not being able to see a thing. She had surgery on her right eye on April 30th and her left eye on May 14th. Fortunately, she was able to receive a lens implant in each eye, eliminating the need for contact lenses. Thank GOD because I can hardly get my own in some days let alone a squirming babies! Elle's eyes healed nicely from her surgery and she will return to see Dr. Hunter in 3 months to find out if she will need eyeglasses. We have seen a huge difference in the things Elle does now that her eyesight has returned :)
It seemed like things were OK for a bit. Elle's surgery was behind us and we were moving forward. Then on Tuesday, Elle suffered another seizure :( It again happened in the morning after Andy left for work. Rescue arrived within 13 minutes and was able to stop the seizure on the way to the hospital. Elle remained in the ER for a few hours until she was awake and showing signs of being back to her usual self.
Many children with Lissencephaly can suffer 1 to 15 or maybe more seizures a day! No, that wasn't a typo. We are fortunate that Elle's have been far a few between. I don't like that she has now had 3 within 7 weeks. I pray everyday for her to be seizure free.
Through all of this, Elle has learned to reach for her bottle or sippy cup when it is on her high chair tray, pull it to her mouth and drink from it! Last Sunday she got her foot to mouth for the first time ever!! Wooo Hoooo. I was so excited!! 9 months behind, but she did it !!! We're looking forward to getting her back into her Physical and Occupational therapy and also starting speech too!!