Waiting

Today is one of those days I'm trying to keep my anxiety in check because I can't control everything (and honestly when we think about it we don't really want to control EVERYTHING) but there is multiple things I am waiting on and the stress of waiting today is causing anxiety. 

1. Our Magical Express info. We leave for Disney SOON, like bags are packed remembering the last minute things soon. Trying to find those random things that suddenly hide when you need to pack them (my pin lanyard and the shirt Jilli got Brent for father's day that is Mr. Incredible). We have not gotten our magical express info yet (that is what picks you up from the air port and brings you to Disney) and it is stressing me out. It just want all the t's crossed and the i's dotted and this is one of the last details that is not finished up.

2. It has been a total run around this week trying to get a neuropsych appointment for Jillian and despite me working at it all week we still don't have one. Frodreurt wont see her cause they don't take Cigna or State insurance, the place in Kenosha is loosing their ped person and they don't have a new one yet, and I put a call into a place in Grafton however they needed a referral from Children's before they could talk to us. I called rehab on Wednesday asking for a referral to be sent to the place in Grafton and have yet to hear from anyone on what is going on with this.

3. I woke up to an email this morning saying that someone at Aurora opened Jillian's muscle biopsy test results. This happens when Jilli has a test run at Children's and her ped looks at the test when it comes across their system. It does not tell me the results, just that they got the results. Ie, there is a high likelihood that her muscle biopsy results are back. I had sent Jillian's genetic counselor a message earlier in the week asking if they were done yet but not heard anything. After getting that message today I decided to call. I got her voicemail which informed me that she no longer works at Children's. Great! We now have no genetics doctor or counselor! I called the main genetics line and they informed me they only had one genetics counselor left and she is out and will not be in today. Grand! Then I call neuro because they told me when we visited with them in August that if we have issues with genetics getting us results to call them and they will help. I left our nuero nurse a message. Now I sit and wait... I just pray that the results show what we are all thinking, it is going to be really hard if they come back with nothing.

4. I called about her portable oxygen concentrator this week and they told me someone will call me next week to let me know what is going on and to finalize details.... I am a planner people, calling me right before you are to bring it to me to let me know how it works and that for sure we are getting it is cutting it rather close to me.

My tolerance of all of this is a little lower today because I broke my back molar on Wednesday and had to go to the dentist yesterday to get it fixed. They did a great job (I HATE going to the dentist, the guy was super nice but I still cried through parts of it, and I have to go back next Wednesday to make sure that everything is ok with it) but it is still kind of sore today. Today I am eating mashed potatoes as my lunch.

I normally just put test results out of my head. We are almost always waiting for something having to do with Jilli and so it is just easier to not think about it. I know many people that think that is strange but it is something that I am normally very good at...    but when I get an email that they are done it makes it harder to put it out of my mind, especially going into a long weekend. I know there is timing for everything...