Six months later…..

Laila went back to school! What a week it has been but I promised so we made it work.

We got home from Riley Wednesday morning and then went back Thursday morning for appointments. The urologist gave us a new kind of medicine that I will flush through her Monti channel directly into her bladder to try to make a barrier against infections. Hoping this works.

Charlie has been playing nicely again so that is very good :) We are not even having to use the catheter in the stoma to make it work. But I am glad to have learned that skill so that the next time (because there will probably be one) I can try to decompress her bowels at home and keep us out of the hospital.

We ended up getting a last minute spot for a sleep study last night so we stayed another night in Indy. Pulmonology never did come to consult about her dropping O2 levels at night and I heard….. They might get in trouble for that. A last minute appointment could mean there was a cancellation…. Or that someone was making up for a mistake. Either way I’m happy to have it done. I think it came back normal though so that is good. Hospital stays must just bring out the worst in her lungs.

The ladies at the sleep clinic were the best. They even made a bow for Laila out of tape to put in her head wrap. She charmed their socks off telling them thank you and telling them how excited she was to sleep in their “big bed with my pillow!”

We left Indy, came home and showered and headed straight to school. Laila was beside herself excited and the day went really well. Isn’t it just like God to send us an angel of a school nurse who knows exactly how to care for Laila’s new needs?!

I spent six months waiting for Laila’s health to calm down so I could feel like I had a handle on things before I sent her back to school. I finally came to a conclusion that we may never reach that point. So now, I’m taking it one day at a time, enjoying one moment at a time. And I’m thankful for the many people on our journey who are willing to walk these days along with us.

Psalm 118:24 The Lord has done it this very day;let us rejoice today and be glad.