It's really nothing new for us.. it's been taken to drastic measures but it's how we live our life. Everyone at our doctor's offices and Children's hospital love Madilyn's "bubble" when we go there. For several years now we have used her weather cover for her stroller as her germ bubble when we are in places like that to protect her. It's now her comfort zone... it's our reality.
Since New Year's we've been inpatient twice and to more doctor's and lab appointments than I can count at the moment. We've had scans and more lab tests than ever searching for answers... Hematology recently did 2 genetic tests searching for an answer to her blood problems. The JAK2 Gene Mutation and the JAK2 Exon 12 Gene Mutation.... the nurse called me yesterday and said that both are negative... the next step they want to do is bone marrow testing. We don't want to put Madilyn through bone marrow testing... at this point it's irrelevant because with all of the virus stuff going on our hospital is basically shut down other than emergencies. None of our clinics are seeing patients like Madilyn because it's not an emergency. Even if it was an emergency Madilyn would probably not be seen because we have Advanced Directives in place already. They are doing everything they can to help us manage symptoms remotely and are in constant contact with us so that's a plus.
We've made some recent med changes and it's helping with sleep for now and we're working our way through a list of options to deal with her headaches until we can finally see Pain Management in June (hopefully). We were referred to Neurology and with the current situation I'm not sure when that will happen. We've also started using CBD ointment to help with the pain in her feet, back and legs and it's helping. The good news is that with these things in place and with all the help home with us the abuse is greatly reduced and I always have someone here for immediate intervention so it's very livable right now. The Sasshole is super excited to have everyone home too... constant entertainment for her... and relief for me. Now if it would just be warm enough to get out in the stroller or on the deck that would be amazing!
Regardless of other people's opinions of the virus and steps being taken... it's how we would be living either way so I just scroll right on by... we need to remember to be kind to one another.. reach out to our loved ones and practice social distancing and great personal hygiene.. I went to the grocery store yesterday and as I was spraying my cart with my hand sanitizer I noticed a woman that was trying to figure out what to do because they were out of the wipes so I kept my distance from her but sprayed her cart too.. it's the little things.... I was not so kind to the woman in the produce department shopping that was visibly sick and not covering her mouth to cough though.. or the guy that was with her that wasn't any nicer.(I won't even get into the conversation they were very loudly having) complete disregard for anyone else..I told them how ignorant I thought they were (from a safe distance) and that she could at least use some common sense and cough into her elbow and cover her fucking mouth... she didn't care.. she thought it was funny... people like her are why shit like this goes on... use some common sense people... please....
Life for most people is drastically changing right now and we have very little control over it... my only suggestion is to learn to live peacefully... pick one project per day and tackle it... move your body, there's tons of free videos out there and I shared some on my Facebook page).. drink your water...eat healthy (grocery stores are NOT closing)... don't hoard toilet paper or food.... and breathe... play a game with your family.. read a book... life will be back to chaos quicker than shit so just live in the moment.
I had an appointment scheduled for almost 2 months prior to all the virus stuff and contemplated not keeping it but I'm happy I did... I was one of his last appointments before the state shut them down for social distancing... I'm so thankful I kept it... it's Madilyn's very first pair of pink fucking shoes......
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