clicking

If you knew Jilli well when she was little she would click her tongue frequently. But then for some reason she would loose that skill, we didn't understand her crashes back then, she would just loose skills randomly but when a baby looses skills its less drastic then when a 5 year old looses skills. We were always confused by the backsides but one of the illusive skills we all joked about was Jilli's clicking. It became infamous with our friends. When she would start doing it again after stopping for a while she would get so excited and would try to teach us how to do it too and when we made the sound she would clap for us.

Tonight out of no where she remembered how she use to click all the time and got all excited and taught Lydia. It was so cute! Lydia was so excited to learn something from her big sister! It made me laugh and think of little Jilli, different thing and people in our life during her clicking days, and all the ups and downs in the road.

Friday-Tuesday Brent probably asked me 100 times if I was ok. If you saw me in public I was faking a smile. But I didn't know why I felt so off... I don't necessarily have a word for my emotions but the people closest to me could read me and knew something wasn't right.

Jilli has been hanging on the edge of the cliff since April 28. She will have good times, where she is happy and has energy and interacting with life... but her vitals signs have not been great, I have found her curled up resting more then normal, therapy has been harder, she has struggled with behavior in ways she does when her body doesn't feel good... we have all been gripped to the edge for days on end.

Tuesday night I had a meeting and since non of my normal podcasts were updating in my phone I decided to listen to another episode of Fun Therapy... I am not sure why they call it fun... I have listened to 2 episodes and both have made me cry and I am not even the one doing therapy!!! I decided I would see if anyone I knew was on and Maria Goff was on an older episode and I had just finished her husband's book Everybody, Always (stop and go buy it... now) and he talks about her in the book so I figured it might me interesting listening to her.

As the episode went on and she talks about some of the darkness in her past that we share some similar cobwebs in she started talking about the sympathetic nervousness... now I have a degree in early childhood education, I have taken many psychology classes, I know all about flight or fight but as she was talking about it I understood why I felt so yucky...

My body had been in fight for days but for nothing to actually fight. She was on the edge but had not fallen off and on the edge there is nothing we can do but wait. We keep doing what we normally do because our team advises that is best and take breaks when she needs and we do things like the butterfly harness on her wheelchair but we keep chugging all... but I just kept waiting for the fall... my body had gone into fight before there was any need for hospital advocating and working hard to get her back to baseline. My body was worn out!

But naming it was so helpful! I got home and Brent and I talked about the podcast and how I had been feeling. We had a good conversation.

By the next morning I felt different. I felt less on edge. I felt like I was calmer when talking. I felt the joy within me that I normally feel. Brent said I looked like me again.

So tonight when Jilli started clicking I got sentimental and laughed a little. I am not sure why her clicking is a sign of normal at our house but it is lol!



We have also had a good few days! Yesterday the girls had therapy and Jaime, Jason and the boys came over. In Lydia's world Emerson and Oliver rank very high on her people order and her face lit up having them here to play with. This morning the girls and I ran to the Matel Store as the one by us is closing and prices have gotten really good! We went there with one main thing in mind... a Smart Cycle! We saw it the last time we were there and Jilli really wanted it but it was more then I could rationalize spending without Brent and I talking and planning but they marked it down more! I talked with Jilli's therapists and they thought that it would be very helpful for Jilli to work on her muscles inside when it is hot or cold out. I am very thankful for Brent's parents for getting it for her and she is very excited! She went on it for a while this afternoon and had so much fun! She battles muscle atrophy so helpfully this is something that will help with that. We then had to run to Target and get more allergy meds for the girls as it is spring and Lydia's nose would be happy to remind you of that so they upped her med for now to help her through but that meant we ran out of meds... thankfully we can buy extra Zyrtec! Yes I have seen all the Mickey stuff at Target... yes it is very hard to be wise lol but I did let Jilli get the Mickey nail polish and I painted her nails. Brent is at church tonight working on stuff and the girls and I are hanging out. Lydia is doing a puzzle which is one of her favorite toys... she has also been playing with her dolls all day... the girl and her dolls!

In health world there isn't too much going on... I am trying really hard to be patient about NIH but there isn't much I can do about that... we just have to wait for the letter and whatever the letter says we have to be ok with. Insurance denied the battery for Jilli's portable oxygen but we figured they would and we have a different funding source from a waver but we needed the denial first so having the denial is actually a step forward. VNA sent a pre auth for Jilli's IV pole... yup now we are playing the game with two kids... I called a few days ago and they are not calling me back. We have had this IV pole for 5 years... it was paid off in one payment... no one needs to pay them anything for a pole! I found the IRS paperwork I had put in a safe place and then forgot the safe place but I got the name change stuff filled out because for respite for Jilli the IRS spelled her name wrong... fun! But at least that is done!

Jilli on the Smart Cycle

The kiddos!