What a week!

Well that was quite the week. Before I go into the deals about what made it sooo long I want to make sure to put some of the fun stuff we did because we did have fun this week too. Jilli, my mom and I went to a Children's museum. Jilli and I stopped at the zoo for a little bit and we got dinner with Dan and Brent in Milwaukee and on Friday my mom, Jilli and I went shopping in downtown Lake Geneva. All of those things were a good time!
So what made the week long...

Tires:
On Tuesday night Brent was on the way home and his tire blew on Hwy 12. I had to go bring him tools because he did not have the right size tool to get his tire off. Wednesday morning mom and I brought his car in to get the tire fixed. Last night we were coming home from Kenosha and we stopped at Walgreens in Lake Geneva to get one of Jillian's meds. Something was making the sound like a playing card in a bike tire slowly going around. Brent went and looked at the tires and said everything looked fine and he could not find what was making that sound so we headed down hwy 12 and got a mile from our exit and the rear passenger tire blew! This is when we figured out why the tools in Brent's car were the wrong size... he had my tools in his car and I had his so once again we were on the side of the road and not able to get the tire off. We called my cousin Jake and he came with tools and helped change the tire. Jake's hobby is cars and he looked at the tire and said that the way the tire blew looked like it was not balanced property. Now mind you this tire is less then a year old and I have had them rotated since getting them at the place that put the tires on. I believe Brent and I also both had the same brand of tires, which were not the cheapest tires either.  When we finally got home (mind you we had gone grocery shopping in Kenosha before we left...) we switched the tools back to the correct car.

ENT:
Jilli had an ENT appointment Thursday afternoon (my mom was kind and came and did oxygen delivery here while we went to the appointment). The dr looked in her ears and her ear tubes were out and in ear wax (she has SUPER waxy ears). We were hoping they would stay in longer since they were just put in last September and should last a year to 18mo. Jilli did an AMAZING job while they dug them out of her ears and cleaned out wax. Im not sure how that much wax fits in her ears! Then we went over the the audiologist. Last time we were there the audiologist and I disagreed and I was hopeful this time would be better. We did the test and Jilli did not react to the low tones (like all the other hearing tests she has failed... she does not hear guys with really deep voices and she did not hear the low toned fireworks... we were close to them and she did not even jump when they started, we also have two fire works places near our house that were lighting off fire works nightly before the 4th and Brent and I were jumping and Jilli never reacted) well the audiologist said that Jilli was just board for the low tone part of the test so she dismissed the results. She did another test with whispering in a normal voice and she said that Jillian's hearing was fine because she can hear whispers. Volume and tone are two very different things. I know she hears whispers, I also know she does not hear low tones correctly. Now they are talking about having 2 audiologists work together on a test so Jilli does not get "bored" but I'm waiting to hear more about that. ENT dismissed her unless audiology can figure something out. I left really annoyed!

CT scan:
I got a call on Tuesday from the pulmonology nurse and she said Jillian's CT scan came back "relatively normal without excessive scaring" The way she said it I could tell there was more to it. I got off the phone really confused until the official report showed up a few days later. After Google searching some of the terms I had some questions and sent it to Dan's mom who is a nurse. She confirmed what I thought the report said... there are small parts of the top and bottom of her left lung and bottom of her right lung that are collapsed. Based on the report it only says small parts so we don't know for sure how much "small" is. There are a couple things that could be causing that 1) aspiration pneumonias 2) the muscles in her lungs are not working properly. Both of those are real possibilities with Jilli. We see pulmonology on Thursday so I am hoping to find out more then. This is also Jilli's first CT scan of her lungs so we don't know if it looks better or worse then before. This hit my heart hard. I did send a message this weekend to genetics to see who our new doctor is going to be and looking to set up an appointment. Results from her big test should be back between August and September and I don't want to have to wait forever to get an appointment to get results because they are down a few doctors so the ones that are there are really busy. We need to figure this out, but if you want this mom's gut instinct... its a muscle disorder. All the tests we are doing and her symptoms  are pointing to that more and more. If genetics can't help us I am going to have to go looking for someone who can figure out something.

So thats been our week. Normally I just keep rolling with things and life just goes on. I have to admit though last week hit me, but like everything else we will keep rolling. My car is at my parent's right now and my mom is going to take it for a new tire (hopeful it is fully under warranty cause buying two new tires this week, even at prorated warranty rates was not exactly in the budget plan). Hopefully genetics will get back to me with a plan. Next weekend is my Birthday and we are planning some family time! Tonight I get to make our Fastpasses for Disney which is supper exciting (yes I have spread sheets and plans for our trip, lol) I have been working on stuff for Team Jilli this week too. We also have a couple fun things planned this week, so here is to a new week!