Brown and Pink Polka Dots : Therapies and life

Yesterday Jilli had her OT eval. I am waiting for the full write up but she qualified. They tested her hand strength and it is 1/3 of what is should be. I was hard sitting there watching her try to do things she could before. She stayed in her wheelchair the entire time and she was still worn out at the end. We did Lydia first for PT and that gave Jilli 45min to rest. We talked about leg bracing for Lydia and how that is something that is likely going to be needed just not yet. She pulls up standing on her ankles and when she is tired she stays that way. We are looking for the car version of the Fisher Price Stride and Ride is you know of anyone getting rid of one. She has no interest in any standing toy that has the toy part on the front and this little girl is strong willed. It was then Jilli's turn for PT. It was hard for her to the point she spent a lot of it on the swing just working on sitting. After we left PT Jilli sat on the couch until about 6pm when I made her get off of it and she agreed to play with some playdough sitting in the highchair. She ended up falling asleep at 8pm and sleeping through the night which is crazy for her.
Today she had PT again. PT has never been easy for her however right now things are a lot harder for her. We ran to Love Inc after PT to look for the toy we are looking for Lydia and sadly they didn't have it. We came home and she rested until about 3pm when I made her sit on her wobble seat and play with stuff on the coffee table. Tonight we decorated Magic Bands and now she is in bed.

I watched the Jimmy Kimmel video this afternoon and tonight during dinner Brent and I watched it together. We cried. We get what it is like to feel so overwhelmingly grateful. We get what it feels like to be so scared. We understand the true gratefulness to medical teams. We get having people who didn't believe praying for your child. We get feeling so frustrated by the healthcare conversations going on in our country right now and people from a political party that likes to wave the Christian flag turning around and caring more about the conservative agenda then what the Bible says when it comes to people who are sick. As he talked I felt this weird connection with him. I watch some of his monologues from time to time, but as I watched this one he became a part of "us"... the community of kids with chronic ongoing healthcare needs. Its like a club with one of the scariest hazings but we are a group that support one another, cheer for each others kids, smile in the hospital hallways, speak crazy medical language and have a bond that is hard to explain. Yeah he and I agree on some things politically but in that moment there was a connection at a new level because in this world medical families are here for one another. And while other around us like to debate if our kids are worthy of health insurance we are in the tranches cheering our kids on and supporting each other. And while Jimmy Kimmel and I may never meet at that moment our worlds collided when he joined this crazy miracle filled hectic amazing world of medically complex parenting.

After we finished watching we had a good cry. Stacy, Holly and my mom kept asking me if I had cried yet since Jilli's "medical event" and I hadn't. I had come close a few times but each where time I had to hold myself together so I kept it all in... tonight I had a little cry. While the past two days have been hard on Jilli physically for therapy it has been hard on my heart. While most people see she is able to walk and talk again, and I don't want to downplay for a second how amazing and wonderful that is, in so many other ways she is so far from where she was. Anyone who knows her well can see how many skills she can't do right now and we will work hard to gain things back, but it is hard as the person who for over 2 years has been bringing her to PT every week and working with her at home to see her backslide so far. As we were trying to watch TV her pulse ox was going off because she was dropping below 92. It hard having the pulse ox. We are making it work but she does not like it however she has it on her until mid July.
For us it is not the fact that our kids have feeding tubes, we just see it as a different way to eat. Its not that Jilli needs oxygen, its a natural thing and we see how much it helps her. It is not that we spend lots of times with doctors or therapists because most of them are amazing people that we are blessed to know... for us the frustrating things are the insurance fights, med supply being beyond frustrating, and things along those lines. For us, our girls being medically complex just is what it is and most things we just roll with but tonight the frustrating things felt heavy... but then I remind myself that everyone has stuff. For us this week it is fighting with insurance and med supply... for others it is different things but everyone has stuff.
And this week just parenting is hard. Lydia is at the age where she want to be held but do her own thing and she wants to get into everything. And Jilli is frustrated she can't do some of the things she use to be able to. She can't see the overall backslide so she gets mad because she thinks she can still do things that she can't right now. Her sensory system is really struggling. This is one of those times I thank God for giving me the skills I need (if you don't know I present to school districts and others on sensory needs of kids in classrooms). Her need for things to be just so has increased and so there is a lot more talking through things and redirection. She is frustrated and still not feeling great and in that we are seeing behaviors we don't typically see from her (tonight she started spitting at us) and I know the cause of the behavior but that doesn't mean at the end of the day it is not still exhausting so I just keep reminding myself that it is my job to bring calm to her world while she feels like her world is out of control. But I will admit tonight I am tired.

So tonight I blog... I work on prepping things for Disney... I listen to Jilli who is up in bed listing to "hospital songs" and watch Lydia as she is working hard at getting into everything she shouldn't lol. Tomorrow is a new day. Tomorrow we see neuromuscular but for tonight a cry was good.

Specifics:
-We are still waiting to hear about insurance from the neb med
-talked to the wheelchair company today. The letter is done and they faxed it to the Dr to get a signature and then they are submitting to insurance. Please pray that is a fast process.
-We are waiting to hear from our primary and state about the increased PT visits. As it stands right now we are going to run out of visits for the year before summer is over and then we are going to have to pay out of pocket. Please pray for an increase of visits covered.
-I got a email last night from the med supply company as the person was leaving for the day so I could not call them... they gave me the contact info for another place to get supplies because they are saying for some things they are no longer going to be able to help us. The problem is that to my knowledge there is not any other local companies that supply everything we need (including the place she gave me the number for) so I need to talk to special needs. This entire situation is very frustrating. The manager did not call us back like we requested and in talking with some other special needs families I am questioning even more some of the things they have said to us in the last week.
-Tomorrow we head to neuromuscular and Thurdays we are headed to Shiners to have Jilli's 6mo braces check.
-Prayers for a couple of our friends with complex medical needs as a few of them are having some big struggles right now and waiting to hear from doctors tomorrow about plans and next steps