Well first off we have BIG news to share…Lola’s EEG came back normal! Thankfully there were no signs of seizure activity which means that either the medicine is working or Lola is simply not having seizures. It is too soon to wean her off of the Trileptal as seizures could still do significant damage, but the fact that she is still seizure free is an excellent sign. We were told the doctor would call if she wanted Lola to have a 24 hour EEG to determine if Lola is having seizures as she sleeps, but the fact she hasn’t called yet leads me to believe that Lola is simply living a seizure free life. We are incredibly grateful for all of the extra love and prayers you sent her way.
We are still waiting to hear about Lola’s official diagnosis, but at this point, to us, it doesn’t really matter. Lola is thriving, she is getting stronger, she is accomplishing goals and she is still the same beautiful being with or without a diagnosis. Whether it’s pachygyria or lissencephaly or both, it doesn’t change who she is or what she will overcome. We have been told that one isn’t necessarily better than the other and that to me says it is entirely up to Lola as to how much she will achieve in life. We are seeing her blossom into an independent little girl and clouding her precious life with a diagnosis almost seems unfair. If you look up pachygyria or lissencephaly, you read the saddest stories and while you pray to find that miracle case, they are few and far between. So while we welcome to hear Dr. Patel’s input regarding the structural aspect of Lola’s brain, we also take it with a grain of salt. Lola will define her diagnosis, we will not let a diagnosis define her. For those of you readers who have a child in Lola’s shoes, I urge you to do the same. I promise life will get easier the second you do.
In other news, Lola has her very first cold. The girl may have had her fair share (or unfair I guess is the better term) of hospitals and doctors, but she has never once been sick. Not a single sniffle or anything in her entire 13 months of life! And if it wasn’t for yours truly bringing the bug home, I’m sure she would have gone cold free for much longer. She’s handling it like a champ though. She still wants to play, laugh, eat and she even managed to make it through her first occupational therapy appointment early this morning. We loved Rachel, her occupational therapist and feel confident that Rachel will indeed help Lola reach her therapy goals. Rachel was rather impressed with the skills that Lola already has and felt that she wasn’t very far off the mark as far as her development. In fact, Rachel named Lola the “therapy poster child” as Lola continued to show off her mastered skills. But after a night of no sleep, Lola was quick to make her angry voice heard that she simply wanted to be left alone and in my arms she drifted off to dreamland.
Rob’s mom is coming into town for a visit tomorrow so we are very much so looking forward to that. She hasn’t seen Lola since July so I know she is anxious to wrap her arms around our bundle of sunshine. As for me, I have the next two days off so I promise to take lots of snotty nose pictures for you all…especially you mama!!
Have a great weekend everyone!
Wow – I forgot to post the few pictures Lola and I took of Super Bowl village that literally took place just five miles from our house. It was such a big undertaking hosting the Super Bowl and Indianapolis exceeded every expectation. I am so proud of this city I now call home!