Brown and Pink Polka Dots : Kindergarten

This morning I woke a little girl up by saying "wake up sleepy head, its your first day of kindergarten." I got a little smile and then she tied to pull the covers back on. She came down and we got her dressed in her first day clothes and took pictures of her in her fancy outfit that she picked out herself when my mom and I took her school shopping a few weeks ago. We decided that just because she is homeschooled does not mean she should miss out on the tradition of back to school shopping.
We then headed to the table and started school. She did a great job. I asked Jillian a few weeks ago what her goals for the school year are. She said to learn the colors blue and green better (there has been some question of color blindness) and to learn how to read better. To help with that goal we are working on a new book each day to start out the school year.
I have had many first days of school as a teacher however this by far was the easiest! Lydia woke up at 5am with an open med port and bile all over so by the time I woke Jillian up Lydia had fallen back to sleep. We also did 4K last year so Jillian understands the rhythm and knows what is expected of her. We also did not take the whole summer off, we did school some days this summer. So we were able to dive right into learning today meaning we were able to do reading, math and writing today which is not the things you get to on the first day of school when you have a classroom full of kids. Things also went a lot faster with it just being her and I. There are parts of homeschool for me as a classroom teacher that feel odd, but there are also parts of it that I really enjoy.
I am excited for this school year and all that we will learn. I am excited to see her grow.

Kindergarten also feels like such a milestone in our little world. There were so many days sitting in hospital rooms that I just hoped that we would get to kindergarten. Days where thinking about kindergarten felt so scary. Getting to kindergarten has been a lot of hard work by a lot of people. We are so thankful for those people who have been on this journey with us. For the people who have prayed for us and encouraged us. For our medical team who means so much to us that thank you does not seem to say enough. We are doing kindergarten the way that is best for Jillian and I am so happy that we are able to support her in the way that she needs. Kindergarten feels so big and exciting! I was good with it until after she finished our structured work today and she went to play and suddenly the weight hit me. I am blessed to be her momma!

Special needs parents are sometimes accused of being negative and I can see at times where that comes from... however this afternoon felt like a reminder of why sometimes we seem so frustrated. I currently feel like any battle I feel like we had worked out was actually just a pause in the battle and apparently we need to re-argue for things we have already argued with places before. We are currently in the midst of a tube brand battle again. We are also in the midst of watching Lydia's stoma because it has developed a cleft and is leaking at times but at other times is ok. We ordered some cream a week ago to try to help however it still has not arrived in the mail yet. The hard thing is that it is causing her pain and as a mom that is hard to watch. It is also effecting her sleep which for a child who already struggles to sleep we did not need any extra struggles.

Today we ran to Target to pick up a fold for Jillian's writing and some of the allergy med for the kids. For some reason the kids both get this med through the pharmacy however its not enough to last us for a month so thankfully this med is also sold over the counter. Its just frustrating that the amount we get from the pharmacy is not actually a months worth.

As we were headed to the check out my phone rang... it was med supply informing us that we can no longer get syringes because they say that insurance does not cover them. What the reality is that they have a crappy contract with our insurance company where they get paid X amount per day to provide feeding tube supplies to our kids and it is the med supply company's job to figure out how to supply us what is needed within that dollar amount. However this incentivizes the company to supply us with as little as possible to make their profit margins larger. They claim that they can not provide us what is needed in a month with the amount of money that the insurance company pays them per day. I say that is their problem for signing a contract that does not cover what is needed. I asked if our Medicaid will pick it up if our primary is not covering since that is why we have Medicaid however for Medicaid to cover something the insurance company needs to refuse to pay for it first however the insurance company is not refusing to cover it, the med supply company is saying that in the amount they are paid they can not send them to us. We also can not try to get it covered from the waver program because for the waver to cover it Medicaid needs to deny it first. It is this giant loophole that the med supply company is using. She tried to play dumb about a few things and I called her out about it, we did not start tube feeding yesterday and I know she has been doing this job longer then we have been tube feeding... BS answers is not going to get us anywhere. She told us we could pay out of pocket online but I don't see why when we have multiple places set up that should pay why we need to pay out of pocket. She told me we could try switching some things around but to do that it would take me driving a hour away multiple times a month, which I told her was ridiculous and not patient centered. As I was having this conversation a fellow special needs momma of one of Jillian's friends walked past me and she could tell I was in one of those crazy medical conversations. So now I need to figure this out. We have gone around about this before and it almost ended in use getting kicked out of our med supply company but we are rather suck with supply companies because they are the only ones in the area that carry some of the things we need. To make it even worse while I was having this conversation this person kept acting like they are doing me a favor for doing the bare minimum.

Ugh! So the next time you see a special needs mom and her head looks like it is about to fall off, just hug her and listen to her rant because you never know what stupid conversation she just had with someone that puts her child's health at risk.