What a month we experienced in September. Naya's sodium issues which began in August seemed to be managed, but things became unmanageable in September. We found ourselves having 2 good days, 1 bad day at the beginning of the month, and constantly getting sodium boosts at the hospital. By mid-September, she ended up in the PICU due to very low sodium, which quickly rectified itself only to reoccur the following week. Finally, she was admitted so we could figure out what was happening, and that led to a 6-day stay in the hospital, with Naya returning the same day of her Parkway Run...although she missed the Run/Walk so that she could get home. The effects of the sodium roller coaster were scary, causing extreme fatigue for 3 days straight. Thankfully, Naya bounced out of it once we got her sodium stabilized, just in time to see some of our wonderful friends who came in to support her for the Run/Walk. She's been hanging out at home recovering and bouncing back. We hope to ride PJ today, which would be her first ride in quite a while. And, we expect to restart treatments next week now that she's stronger.
For now, we're not pressuring Naya to keep up with school, but she does miss her friends. The AIS girls came out in force at the Run, and recently, they've been writing cards to her. The cards are so helpful when Naya's feeling left out. She reads them and tells stories about each one. Thank you, thank you, thank you to all of her friends and supporters at AIS. She reads every card, text and blog post you send. Hopefully, she'll be at school soon for a visit/lunch!
All along this journey, I have learned and tried to take things a day at a time. This month, it felt like we were taking things an hour at a time. Being on the other side of the issues for now is a blessing. My advice to any parent is don't put off spending time with your kids. You never know what's around the corner. The pictures below show the roller coaster. The picture with the Philly Eagle was on Tuesday in the hospital, the picture with Hank was 1-2 days later, and of course that gorgeous smile and girl coming back was just yesterday.
My next post will be about the Run/Walk. I'm still collecting photos so if you have one, send it to my personal email at firstname.lastname@example.org. Thanks to everyone for their support. You made a difference for children.