First of all, thank you for all the prayers and kind thoughts and concern. This week has been a little stressful for us with the testing and waiting, and I really can't say enough how comforting kind words are.
Monday, Lacie had her EEG which turned out to be so much less scary than I could have ever hoped for. We went to the Sleep Institute in Plano and wow. It was decked out to make sure the patients AND families were comfortable and at ease. I was so impressed. And Lacie was an absolute champ. They had to put 30+ electrodes all over her head and then bandage her up. She certainly didn't like it, but as long as Mark held her she was pretty calm. Then they had her sit through a series of light-flashing at various speeds. You know the stories where people in nightclubs have a seizure because of the strobe lights? Same deal. They wanted to see if they could induce one. Then they let her sleep, and oh my, she was ready for it! I had kept her up all night the night before and then had to sit with her in the backseat of the car to make sure she didn't fall asleep on the drive up. Not an easy task, by the way.
After that it was a waiting game. The follow-up appt was on Thursday when I took her in to see the neurologist, who was absolutely fabulous. Honestly, I am so thankful for an amazing pediatrician who sends me to the best places with the best people. This neurologist doctor was amazing with Lacie and then very careful to give me straight-forward answers, making sure I understood completely. After doing a physical exam and some tests on Lacie she then addressed the EEG.
The good news is that she says there's no need to panic. She doesn't want Lacie started on any treatment as of yet unless another episode happens.
The bad news is that her EEG was not normal. Not crazy out-of-control not normal, but not good, either. She said it was possible that it could be chalked up to Lacie's young age, which is why she wanted to hold off on any treatment. However, it still wasn't normal, and with all that happened when she was born on top of that, the doc wants to do an MRI and make sure this isn't happening because of damage in the brain.
Honestly, I am thrilled. Not because I want poor little Lacie to be going through this, and certainly I am terrified of the possibility of brain damage, but if I had been given an answer of, "eh, she looks fine - must've been a fluke. don't worry about it," I think I would go crazy with worry that they missed something or I did something to change things that altered the outcome or something. Not having an answer is HORRIBLE, and I know this because of what we've already gone through with her. Ironically, I am getting the feeling that this might actually bring us some closure with all that. If not why it all happened, at least whether or not there are lasting and/or permanent repercussions. I can't even begin to express how much of a relief it would be to know. How grateful I am that we're in a position to get these answers. I already feel like angels have been moving us around like chess pieces to get us to the right places at the right times, and this only adds to it. There are things going on right now that are a direct result of Lacie's original condition that I think I can say made that whole experience "worth it." ? Hmm, I'm not sure if those are the right words for it. Maybe that there were reasons for Lacie having to go through that that are playing out right now.
Regardless, there is no doubt in my mind that Lacie is a very special kid and that there is definitely a reason why she's still here with us. And I am so, so grateful for that.
Thanks again for all the thoughts and prayers. I'll keep everyone posted on future developments.
March 2023
11 months ago
7 comments:
Wow. Knowledge is power. I'm so glad for you that answers and direction are coming. We'll keep praying for you all! You're a trooper and a wonderful mother for taking care of Lacie so well! Please continue to keep us in the loop!
Thanks, Jen. I sure do appreciate the support.
It is wonderful to hear that you feel comforted about everything, and feel like you are part of a plan. We love you guys!
I'm so glad that things are working out. We'll keep praying for you guys. Thank you for such an awesome example of being understanding of Heavenly Father's plan.
I'm so glad there's no reason to panic. You have a great attitude. Love you, Net!
Wow Jeanette, I'm out of town a few days and so much has happened. I can imagine this has all been very uprooting and slight shades of the traumatic beginning of Lacie's entrance to this world. She's amazing... you're amazing... we'll keep you in our prayers.
Jeanette, I am so grateful that you posted this update. I have been checking back every day to see how things went. I'm grateful that you have been blessed with wonderful doctors. We will continue to pray for you guys. We love you!
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