So the day started this morning when I woke up and smelt something I should not smell... it was the smell of Elecare. Elecare is the kind of formula the girls are on and it smells like rotten vegetables. I knew if I was smelling it that there was a problem with one of the girl's tubes... sure enough Lydia's med port had opened and there was formula all over her bed. So I got that closed and then got her cleaned up and cleaned the bed.
A little while later Brent called me from work. On his commute in his car started to make a weird smell so he brought it to the place he gets his oil changed up there and they looked at it and said it needs $1,600 of work to be able to drive it home and more additional work after that with a total of around $3,000. Ouch! We just put $1,000 worth of work into it in May (battery, and other routine things)and the car is only valued around $1,000! Also we had to replace my van a few months back because it died on the interstate so we currently have a car payment. Now we need to figure out what to do. My parents lent us their van for right now but it can not handle Brent's commute frequently so it is a very short term solution. Sometimes being an adult is a pain. We have to do something. Brent has to commute for his job and we need him to have a job and only having one car is not an option for us, I have to be able to get the girls to their appointments and emergency needs. This really sucks.
Then at 5pm I went out to get the mail to find a letter from the state. I get excited thinking maybe this is our approval letter for the wheelchair only to find out it is not, it is a letter stating that they don't have part of her required paperwork to process her renewal of the medicaid and if I don't have this form back to them within 10 days she looses insurance. Some background here... in May we had her meeting with the person from the state that I had to give all the the paperwork to. She checked stuff off and took all of the paperwork with her and sent it to the next person. In June I got a letter that said they were missing this part of the paperwork and that they needed it (with a handwritten on on it that said "our bad" which I didn't find very professional) so I filled it out and mailed it the next day in their envelope they sent with it. Now I get this letter. This means her reapproval stuff has not even started and now I am freaking out. Of course it was after 5pm at this point so no one was their to answer my phone call. I now have filled out this form again but what also worries me is that on this form is my child's name, birthdate, SSN and other info. I don't want this just floating around. Where is this form going?! I have done my part repeatedly but am getting a letter threatening my child's insurance. Her primary is not going to pay for her wheelchair needs so state is our only hope and now I am really scared. Add this to all the shit in Washington lately and this is a lot of stress. I don't think people understand how much Medcaid means to us and I feel like the people who don't understand don't care to listen or call us horrible things. Guess what, Facebook pops up sometimes what friends write on news articles and other posts and sometimes it outright sucks especially in the world of politics, just because you don't post it to my wall doesn't mean it doesn't show up on my newsfeed (sometimes I really wish it didn't) and honestly sometimes it makes it hard to worship in church with people who type about disliking refugees, hating immigrants and calling those of us who use public funding awful things. I remind myself that we all struggle and are all short but this is defiantly one of those things where I am the weaker brother in this situation because I struggle with this, not that someone agrees with this or that political party but when they sell themselves to a party or use that party as a way to bash or hurt others. I picked up two medications tonight that each child gets filled every 15 days and it costs $46 a child per 15 days after our primary insurance and medicaid pick up the difference and that is just one drug. And this is the drug my children need the most and keep their lungs from becoming worse and needing more medical interventions. And we like many many special needs families work hard to minimize healthcare costs as much as we can because trust me, none of us like to do unnecessary medical things. Ok, stepping off soapbox now.
My kids have also been at each other today. Lydia either wants to be held or is actively getting into something. Jilli was very whiny, anytime Lydia even looks at her she is mad at Lydia. We did have some good time learning about the letter S today which was really nice.
We also had a tree branch that in one of the recent storms cracked and we were talking about how we were going to take care of it (we just noticed it yesterday) and then in last nights storm it broke so now it is pointing down which is a lot safer then the way it was dangling which is good. We still need to get it out of the tree (its a large branch) but at least we are not as worried about it hurting someone right now.
The positive insurance news is that they decided to pay for once a week PT for the next 6 mo for Jilli. This is huge! Back in February before Jillian had her crash they had only given us 6 visits in a 6 month time frame and then told us that she needed to transition out of PT but then when she was in the hospital we got the PA amended to give her more visits and now they granted her once a week which is a big weight and I am so thankful... but none of this matters if we loose her insurance due to a paperwork issue.
We also finally heard back from pulm that they are not adding a bronch to Jilli's surgery so are least we have that question answered. I also asked special needs to figure out who is taking over Jilli's L Carnitine script because it was written by a floor dr and is now is out of refills and needs a different doctor to take it over. So I am thankful those are checked off and I am thankful for our special needs team for all of their help.
Tuesday I had a great birthday at RMH. They spoiled my kids all day and they had so much fun recording the new video for the house. Brent and I did an interview on camera that I felt went really well. They even surprised me with birthday cupcakes! It was SO sweet! It was also great to spend the day with friends! The girls and I were at RMH from 10:35-4pm! Brent was able to come over his lunch to do his part. After we were done we ran to Target quick becaue I had forgotten Lydia's pedialyte and then my mom and brother met me us at Cheesecake Factory for dinner. It was so yummy! Yesterday Jilli had OT and PT to make up for missing OT on Tuesday so once she was done with that she was really tired.
So hopefully tomorrow is better. Tomorrow we need to make some grown up choices about the car. I also will spend the day trying to figure out why in the world they are threatening to take her insurance away after I have filled this out repeatedly. Tomorrow I pick up the fight again but tonight its time for rest as there is a music festival near our house that started tonight but is quite now but it will make sleeping harder for the next few days so its time to do it now :)
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| Jilli reading me a story... she might not know what each word says yet but she has the concept down that it goes from left to write and each chunk of letters is a word. Sometimes the task ahead of homeschooling looks so overwhelming but I am so proud of how much she knows already and how much she loves learning |
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| What the tree looked like last night (don't mind the glare, I took the pic right before the rain started) |
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