Always on alert

As I was packing up the car for an unexpected trip to chw this week I was thinking about how in our lives you are always on alert, always waiting for the next shoe to drop because the reality is that the other shoe is going to drop... this isn't just being over alert, its being realistic. You can't let every hiccup in the road send you spiraling in panic so you end up living in a space of always a little bit on edge. I know at any second we are only a minute away from needing to head to the ER.

Lydia decided to be the interesting one this week. Since her tube change three weeks ago she has been experiencing pain  in her stomach that will cause her to double over in pain for a minute but then she would go back to playing. Monday I checked in with special needs about and we were watching it.

Wednesday morning when I changed Lydia's pad I noticed our problem. Lydia had a little spot the never closed when she went from a 16fr tube to a 14fr tube however that little spot had not caused any issues so we were not worried about it, however suddenly that spot had grown from a couple mm to a half inch to inch in length and was curved. It wasn't just surface level but was deep all the way thru.

I called the team and made a plan. We had been invited to a handprint ceremony for a new location the hospital is building closer to us (a closer walk in that will see my kids!!!!) so we went to that and then headed to our team up at the main campus.

They diagnosed it as a tube site cleft and they put silver nitrate in the cleft to see if that will help close it up. Lydia has been sore off and on since. She is guarding it some but in typical Lydia fashion you wouldn't know there was a problem unless you knew her. The craziest thing was she has slept thru the night the last two nights! She had not done that in over a month and last week never made it to her own bed because she was awake so much during the night. I am hoping that maybe this was our problem with the sleeping!? Lydia has never been a good sleeper so I am just happy for two nights of sleep!

Jilli also saw ENT this week and we are watching things for now and if she has any more infections we will put ear tubes back in (the second tube is very close to falling out).

What I have learned is to try to balance the living on edge. If you let it consume your mind you live in a state of panic and then as soon as the issue happens you are spiraling and can not think clearly to do the steps you need to for your child. However as a complex parent if you don't prepare for issues then you are trying to start from behind. Its the balance. Its having things ready if you need them but not being panicked. And just accepting that it is what it is... crazy is going to happen and if you let it overwhelm you with every little thing it will, but understanding that it is going to happen gives you grounding to stand in the midst of it.


Wednesday August 29th is the LAST DAY to sign up to walk or run with Team Jilli and Lydia. We would still love to have more people join us! We are still trying to raise $2,450 for the walk to help with funding for things that are very importaint to us. If you have any fundraising ideas let me know! To donate or join the team CLICK HERE