Brown and Pink Polka Dots : A long few days

We are back home...

Just in time for the music fest that is down the road... it sounds like someone is playing kick drum in my front yard! Our house far enough that it doesn't really sound like songs... but close enough that it sounds like a street preacher yelling at you with a backgroud of bass and drum. I normally try to have some reason to not be at home this weekend (the roads are busy, cell and internet service suck and the noise makes you feel crazy after a very short time) but we have been away from home too much lately to have time to plan to be away this weekend!

The past few days have been long and I feel so tired.

I am not sure how I thought I would feel when we were told we likely had a diagnosis but I know it wasn't this... but I think part of it is that we still have a giant maybe... we COULD have a diagnosis... pretty likely that we do... however they could come back to us and tell us that they were wrong... that this was just another rabbit hole. I think it might feel different once they tell us a definitive.

Jilli has also been off the past few days. I know all kids have their turns at pushing buttons but Jilli just hasn't been her behavior wise the last two days. When Jilli isn't getting oxygen she acts slap happy and that is how she has acted the last two days. Things she wouldn't normally think of trying she has. Her awareness of safety and personal space are very different. Also in OT yesterday they said her skills were much weaker yesterday then they have been in a long time... including when she was in the hospital last. It has been a challenge these past two days because she just isn't acting like her. She said last night that her brain felt funny but it didn't hurt. By last night I was exhausted from having to correct her choices so much and she lost playing iPad... Jilli is typically our rule follower.

Lydia has been doing well. We had her surgery follow up today. Her site is healing well and they were able to use different wipes to get the section of skin next to her incision back to normal looking. Lydia played and loved to sing Twinkle Twinkle to the plans in the garden.

Today we did gardening before leaving. I love how Ann invests in my kids. Jilli loves time with Ann. Lydia loved playing in dirt! They harvested some things and planted others. Gardening time is some of the best time in the world. I never thought planing could show so much love. Ann invests in us and has words of encouragement in the moments I need them. Ann is one of those people we likely wouldn't have met if it wasn't for the girls medical stuff and rmh... but I think we are all so bless just by knowing her!

I think we are going to take some calm time... maybe away from home lol (Brent's goal is to get more bathroom work done this weekend), celebrate my birthday a little more (we were blessed last night to go out with Nate's family for dinner) and do things to recharge... I feel like I need a recharge right now but I am not sure how to do that right now or that I have any energy.