It's been awhile since I've updated and life has been great! Sophie is growing and changing every day. She is just over 5 months old now and such a blessing in our lives. She makes all kinds of noises, laughs (especially at Kayla), grabs for toys, and has started to roll over from her tummy to back. She's even napping better most days which is so nice for me! I feel like we have a good routine going that will only get better with time. She has been seizure-free since her surgery in October. Our Christmas season was extra special this year since life was finally calm and we got to spend a lot of time together as a family of five. Kayla and Madelyn adore Sophie and fight over who gets to play with her. They are both so sweet with her in their own ways.
Sophie's physical therapy is going well. We've met with her therapist twice now and she's guided us with ways to improve Sophie's head control...which is now right on track. We're working with her now to encourage rolling from tummy to back which she's getting the hang of this week. She had been rolling back to tummy before her surgery and still does every once in awhile. My girls have never been big rollers though! And of course we continue to encourage her to use her left hand which was somewhat weakened by the surgery. The therapist also noticed that she was keeping her left hand clenched in a fist, more like a newborn, and called it high muscle tone so we now have ways to stimulate her hand to open more and she's keeping it relaxed more each day. We hope that she'll have made enough progress with it that she won't have to be fitted for a hand splint, but even if she does we'll deal with it and do what's best for her! She's also started sitting in the Bumbo seat and loves looking around at what's going on.
I have struggled off and on with not letting all this get to me. Sometimes I get in a funk where I feel like this physical therapy is all on me and that if she doesn't achieve a goal it is my fault. I know it's not in my control and that we as a family are in this together and will do the best we can to help her progress. She's so on track milestone-wise that we feel very blessed, especially with all the reading on Tuberous Sclerosis we did when she was born. And really, she doesn't get that much physical therapy. It's a once a month meeting where we get tips and goals to work on for the coming month. The one thing that I keep working on is living day to day. I do the best I can each day with all three of my girls and when the day is over, I box it up, put it away and look to the next day. God is in control here and He has led us this far and will continue to lead us each day no matter what comes. He has brought us such joy and calm over the past several months and we are so thankful.
So yesterday I had an unexpected conversation with the nurse from Sophie's neurologist's office. She called because I have recently had blood drawn to send off for genetic testing (Mike will do this too) to rule out if one of us might have TS and just never have manifested any of the symptoms or problems. By the way, most TS cases are a spontaneous mutation, but it has happened that one of the parents of a child with TS has it too and just doesn't know. We get tested and if we are fine, then there is no reason to get Kayla or Madelyn tested, especially since they are so healthy and developmentally normal. Anyway, so the nurse calls just to get the date of my blood draw and then asks me how Sophie is doing. I tell her that she's doing great, we haven't seen any seizures and it's been wonderful living this calm life with her, not having to call the doctor all the time. She responds hesitantly, "Well knock on wood...seriously, find some wood and knock on it." I was taken aback. No one has ever responded that way to me and it surprised me because this nurse has an adult child with TS. Every person that has ever asked me about Sophie and how she's doing is thrilled and hopeful that she's doing so well. I tried to brush it off, but it really stuck with me all day yesterday. I kept thinking, "Am I naive for basking in the goodness of life right now? Does this nurse know something I don't? Should I be worried?" I prayed about it last night and after talking to Mike, my mom, and my best friend I feel a lot better today. I have come to the conclusion that what the nurse said was inappropriate. I have faith and hope that the future holds amazing things for Sophie and that each day is a gift. I refuse to KNOCK ON WOOD!!!!! I will continue to pray daily for Sophie and her progress and thank God for each blessing we receive. It's amazing how one person's negative comment can ruin your whole day. And make you doubt yourself. I would much rather have God on my side than a piece of wood. :)
"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of it's own. " -Matthew 6:34
Life continues to be good. We are coming up on half a year with our sweet Sophie at the end of the month. I enjoy each and every day with my wonderful husband and three beautiful girls. God continues to show us so much through Sophie and through every step of our lives.
