Saturday: We got up and went to Starbucks and Target... it is always a sign that one of the kids are getting better when we venture out. Jilli did well. We decided we were going to try to stretch out her nebs to every 5 hours. In the afternoon we had a birthday party for my Grandpa Len. Resting she dropped down into the 80s and looked rough. As we were walking up to the party she perked up a little and then I brought her in the house and Aunt Sandi brought her a couple of crafts. She perked up a little bit and sat in my lap and played with some Grandma Alice toys. We got in the car and headed home (we stayed at the party about an hour) and Jilli started coughing on the drive until she puked. We pulled over and gave her a neb and then came home and she rested the rest of the night.
Sunday: Jilli slept in until after 9! Brent had sound at church so he was there early but the girls and I ended up stay home. My mom and Brent came after church and we worked on stuff around the house. Jilli just chilled most of the day and did nebs every 4 hours. We had our first life group for church at our house that night. Jilli chilled in her chair most of the time and Lydia had a fun time with the other kids. Hopefully next week Jilli can play too!
Monday: Jilli slept until 10:45am!!!! This is crazy for Jilli! Lydia had her 15mo old well check. She is up to 19lb! Overall she is looking good. Pt and leg braces are really helping her. She has a good mix of specialists at chw. She has 4 words. Their ped did say she got the ER note from chw from Jilli the week before and she was mad... they misquoted her... they didn't properly say how Jilli was or what I was saying. The note made it sound like our ped didn't know what she was talking about which is not true. Monday night we took it calm at home and Jilli was able to space out neds to every 5 hours!!!!
Tuesday: I called the wheelchair place to see if they were bringing the stuff that we needed to MD clinic and the first person I talked to acted like I was nuts... the second person acted like I shouldn't be calling because I should just know they were bringing the stuff... communication people!!!! Brent called Walgreens and asked about the neb med for Jilli since we are still limping along with samples for doctors and an emergency fill the pharmacy gave us. They said they called the state (our primary outright denied) and the state got the paperwork however they have not processed it yet.. legally they have 21 days to make a ruling but this is a NEEDED med... this is crazy! The kids and I then headed to chw where my brother met us. Jillian has been transferred into the muscular dystrophy clinic (MD) at chw. While officially she doesn't have MD she has the symptoms of MD and pre genetic testing she likely would have been diagnosed with it based on her symptoms. But the MD clinic is the most logical place for her to be seen because they look at the holistically from a muscle standpoint. It is a busy appointment. We were at chw from 1:30-5! I was so thankful my brother came with to help me with the girls during the appointment! Here is a breakdown from the different people we saw:
-Neuromuscular: We had done some additional family genetic testing hoping for more answers and actually they confused everyone more! We talked about future testing but decided that we need to wait for testing more for a little bit (some of the tests you can only do so close together). We talked about the ER trip and he agreed that we need a way to get ER to understand that she is multiple standard deviations from normal so even though she looks typical doesn't mean that is how her body is reacting. From his aspect we are going to just keep chugging along and treating these crashes as they happen.
-Pulmonology: This was a new dr for us. We really liked her! She understands Jilli's lungs from a muscle standpoint. It was a good conversation. We talked about how Jilli can have a normal test result for something but still have an issue. She prescribed a different steroid for when Jilli's body crashes that should work better for her.
-Wheelchair guy: He brought in the smart drive but did not have the wheels or harness. I asked him if the smart drive was in the right mode. He looked at me like I was nuts. Her then opened the manual and messed with it for a while. At one point he moved the wrist band and sent Jilli flying into the exam table. I was not happy. He said it was too hard and confusing and then the battery died on the wrist band. So he put everything in the box and then left. My brother and I just sat there looking at each other. We laughed because otherwise we would have been swearing.
-Rehab: The student came in to ask us questions... she asked if I am happy with the wheelchair company and I explained to her about what just happened. I also told her about all the crazy we have been dealing with them and that while I am happy we have the chair now we still don't have all the pieces so I'm still frustrated. She asked about therapy and we talked about how our therapy place is closing next month. They said they have had lots of angry families about that since there is no where else for therapy in our county and rehab helps with referring people to therapy but there is no where to refer people to. Its such a mess! We then talked about the crashes that Jilli has. We talked about how last week Jilli rested in a laundry basket until Stacy kindly brought us a chair to borrow. I expressed that we need something for Jilli to sit in during these crashes that will keep her safe. They are going to put in the script for a special seat for Jilli (likely the Special Tomato or Tumblform). But this means that we are now about to go into an insurance approvals process again. There is part of me that thinks I am crazy. These last 7 months battling for a wheelchair has been hard on me... my emotions... it has pushed me to advocate harder for Jilli and have even more of a voice but it has has worn on me... but I will do what I need to for the girls. We are hopeful that since her primary insurance didn't pay anything for her wheelchair that they will pay for the seat because 1. it costs less 2. it is to keep her safe while stationary and they didn't seam concerned with her ever moving 3. our house doesn't have to be considered wheelchair accessible for it 4.there is nothing electric on it. I am just hoping it is a smooth approval!
After that we headed to Smiths house for some dinner and then headed home.
Wednesday: We got up early this morning to head to OT for Jilli. The OT was able to get the smart drive in the right mode and we worked on it some with her. It is going to take work to help her learn how to use the smart drive and right now her muscles are still really tired so we are going to just use the smart drive sometimes for now until we help her to get a good hang of it but she will use the wheelchair when we are out of the house. I might be looking for open spaces to help her practice and learn how to use the smart drive right. We then went to brunch with my old boss. Due to some things that happened at my old school recently I will no longer be helping or doing anything there and we will no longer be doing the coin drive for chw there each fall. Its for the best but I had a good lunch with my old boss and Jilli loved to see her! She is one of those people who jumps right in when my kids start beeping! We then headed to New Berlin because the girls both had PT up there today because our PT is still out with a broken foot. We stopped at Target to pick up a couple of things and then headed to PT. Both kids did ok at PT. Jilli's pulse ox dipped multiple times. Lydia was her strong willed self. After that we headed to Walgreens to pick up reflux meds for the girls. Now we are home and I am tried. We have been able to spread nebs out to 6 hours today!!!!!! Brent just got home from the car dealership. They called him today. There is a serious recall on his car... to the point they called him and asked him to bring his car in today and they gave him a rental car until his is fixed... and they don't expect the parts to be in until FEBRUARY! We are just rolling with it here!
Tomorrow I am hoping for a calm day to work on stuff around the house, do some school with Jilli, and work on folding laundry. Lydia is working on teeth and putting everything in her mouth (I just fished a dead bug out of her mouth...) so we are having to stay on top of cleaning so she doesn't accidentally get anything because her having respiratory issues this week is not welcome so we need to keep unsafe things out of her mouth! Brent also brought me home Purple Door Ice cream (salted caramel!!!) and flowers. He is so sweet! Now to watch Speechless!!!!!!!!
No comments:
Post a Comment