Uggg...
It's so frustrating that the seizures have not stopped. I just want them to go away. As you know, Sophie is teething, so it's hard to tell what is bothering her nowadays. She had 3 (maybe 4) clusters today. Sometimes, the seizures are so mild that you just don't know (or maybe we just want to believe they are not seizures). We have an appointment to meet with her neurologist tomorrow morning, so we will be discussing what our next options are.
On a lighter note... we all went out to dinner tonight with Brandon's family. We went to a restaurant that had an outdoor patio. Considering it is a Tuesday night, it was pretty empty so we didn't have to worry about anyone getting too close to Sophie. Of course, I brought antibacterial wipes to wipe down everything that Sophie might touch. I am so ultra paranoid that she is going to get sick. We went out to dinner to wish Jason (Brandon's twin brother) good luck on his upcoming big race (Primal Quest) in Utah/Colorado. It was a gorgeous evening and it was so nice to get out of the house together.
Sophie got up again in the middle of the night (3:45am). She was happy as could be. She was smiling and ready to play. It's amazing how this illness changes your perspective on life. Before she was sick, I would have been like "Sophie what are you doing up so early - I'm too tired for this!!!" Okay, I still thought that but instead of trying to put her right back to sleep, I smiled back at her and told her how much I love her and gave her great big hugs. My love for her grows deeper by the minute.
2 comments:
Hope the Neurologist is as impressed with Sophie's progress as we are and that he can reassure you that even though there are these ups and downs you will find the answer to bring these seizures to a stop.
You've got the right attitude about your 3 am calls from the nursery! Tired as you are, savor those quiet moments when it's just you and her sharing smiles and secrets and all your hopes and dreams for her. That way, in 16 years when you're looking out the window at 3 am and thinking of the proper punishment for someone that was suppossed to be home at midnight ( or at least call )...well let's just say it will temper the moment and keep you from pulling your own hair out!!
Love,
Aunt Barb and Uncle Neil
Elain,
You are an amazing mom! I am sure that Sophie feels your endless care and love for her. I am not a mom yet but reading what you wrote made me appreciate my parents more who are now visiting me from China.
Sophie looks so cute in the pics, and obviously nourished very well :)
Vivian Liu
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