Jilli and Lydia has PT yesterday. Jilli worked on walking through a rope ladder on the floor which she mastered about a year ago (the space between the the rungs fits two of Jilli's feet). It was really hard for her to do. She worked on sitting on a playground ball and use a scooter that you sit on. Lydia's strong willed self liked yelling at the PT but she loved using the walker toy there and Squibbles.
Today Jilli had OT. They worked on throwing and popping bubble wrap. Her hand tremor is still pretty noticeable. She worked hard in PT but part of that was because she knew she would get to see her Nate after.
This afternoon we headed up to Milwaukee and Holly so kindly watched my kids for me so I could spend some more time with one of my friends whose baby is in the hospital. Jilli loves her Nate time and she has gotten some extra this week while I have been at the hospital.
Today while at OT our PT came in and let me know that the state sent a letter back that instead of increasing Jilli's PT to twice a week that they want to discharge her!!! Our PT is writing a long letter to the state telling them why this is an issue and fighting back. Part of the issue is that the Dr. told us last week that this was like someone who is elderly getting really sick, they just don't bounce back to where they were but you try to get the as close as possible so that they next time they get sick they have room to backslide. We need to help her get as close back to her baseline as possible now. Our primary insurance only pays for 20 visits per year. Ugh! Prayers that we get this figured out because if state stops paying the 20 visits from our primary is not going to last us long and then we are out of visits for the year from both.
I still have not gotten even acknowledgment from our medical supply company for my request to get a printed copy of what equipment we own and what the contract is that they have with our insurance company (I want a copy of the written contract so I know that they are following it) however they are not even responding. The nurse from our insurance company called tonight to check on things and I explained to her what is going on and she said that she has been a nurse for over 30 years and she knows DME are nuts but this takes it to a new level. I also talked to her about the fact Jilli's neb med is still not approved! She did say that we are doing everything we should do on our end in all of these situations which is good to hear. I also called the medical college since they sent us a $4,000 bill this week but it looks like that is getting worked out.
We have not heard any more from the wheelchair company since last week but it sounds like things were getting submitted to our insurance company last week so hopefully that is true.
I think when we get home from Disney world I am going to ask out team if we can try 2 weeks off the liquid albuterol because we are seeing a lot of behaviors at the 4 hr mark. Behaviors that people who know Jilli well are shocked by and are very challenging for us. She is on the med 3 times a day but her big time seems to be 6pm (4hr after her 2pm dose) Her body must be feeling very out of control and I feel bad for her in that. I don't want to do med changes right before Disney and hopefully we will be able to manage the behaviors in Disney. The hard thing is that we don't know how much, if anything this med is helping since it was started after she got sick and she is still a ways off from baseline. I think that is one of the hard things for me right now, people can see she can sit and take a few steps again but there are still so many skills she has not gained back and her endurance is just so low right now. But we just keep chugging along.
Tomorrow Jilli has PT again.
Jilli has been really cute with a few things the last few days. Yesterday she was praying and thanked God for making everyone different and just right for them. This morning Jilli was sad her diaper was not stinky. I told her Lydia's diaper had been (Lydia is good at pooing in her sleep) poopy. She asked how much poop. I told her a medium poop. She got sad. I asked her why. She said that she never gets to have medium poops. She either has tiny poops or really large ones and she can't make them stop flowing out to make perfect medium ones. Yes these are the conversations at our house! Lots of talk about poop and stomach bile! Lydia's big thing is that she learned how to clap and loves to show people. Today she was very cuddly which was sweet!
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| Jilli at zoo class on Saturday. We spent the weekend at zoo class, visiting friends in the hospital and at RMH visiting the Smith family. We understand the medical life and we feel like a good use of our time is to support other people going through medical things as well |
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| Nate got a cheese head so Jilli had to wear it! |
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| These two are a team. |
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| Lydia and Emerson, they had fun together! |
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