What?
"Can you make sure I get my homework done right away after school and then can I go to bed?"
What ~ Why?
"Things go faster when I'm sleeping and we'll be leaving for Florida sooner if I'm sleeping"
Got to LOVE the way they think!
We'll we're going to attempt to go to Florida for a family vacation once again. I can't wait to get away from the snow! We should have great weather down there and tons of sun. Give me that Vitamin D!! I'm hoping for a wonderful relaxing time, with alot of nothing to do. We've been pretty busy around here so it will be a nice break for us. PLUS it'll be a nice break before Danny's next surgery at the end of the month.
I had my second treatment of Tysarbi on Thursday. It was pretty rocky as to if I would even be able to get the infusion because I was taking steroids due to the severe headache/relapse earlier in the week. It was finally approved that yes I could have the treatment. PHEW! Leave it to me to have a reaction after the medicine was finished....my face, neck and chest became very flushed. Now they would like me to take benadryl before I go, just to be on the safe side. I am still on a mission to find a newer, better way to keep my MS at bay...as I still have alot of symptoms/relapses. I have been very weak and fatigued with lots of aches that have made it pretty difficult for me to walk. I got "the talk" once again about how I should be using a cane or walker. But I have a secret, I push Danny's chair or push a cart around and no one is the wiser that I need something to help me walk. Having a handicap license for Danny and for me is a bonus! And you got to LOVE the newest symptom I'm having which is what I call the Parkinson shake ~ it's awful! I had a bunch of labs done today after my Neurology appt so once they are in we are going to decided if I should start a different med or increase the meds I'm already on, UGH! I'm definitely not going to start a new med right before I go on Vacation so it will have to wait till we come back if that is the case.
We bought a new mini van to replace our full size Ford van. This too will be converted so that Danny can get in, but with more ease. This one will have a ramp that will fold out from the rear hatch instead of a lift that lowers out of the side doors. I can't wait! Best of all....wait for it....for those of you that know Dan.....wait for it......it's NOT a Ford, it's a Toyota.....I know, right? I bet he gets hives not being in a Ford, but for me there's no issue. Of course in true Osero style the van was "lost" for about 4 days. REALLY, how can they lose a van? But at the same time it doesn't surprise me. The vehicle was being delivered from Michigan to Milwaukee on a transit but it didn't make it's destination on Thursday like it was suppose to and no one could find it. Well it finally made it to Milwaukee, today, but unfortunately it's not in enough time for us to pick it up and have everything ready before we leave so I we'll pick it up when we come back from Florida.
I send a heart felt very educated email to Danny's orthopedic surgeon about his up coming rod lengthening surgery on April 1st. It's become apparent to us that Danny is having significant pain in his right hip again which is making normal daily cares very difficult and tear filled, for all. So I proposed that instead of doing the steroid injection in that hip (I feel a band -aid) I believe the inevitable surgery (a Girdlestone procedure ~ cutting the head of the femur) is the better route to go. The only thing I can TRULY give Danny to make a "difference" in his life.... is comfort. I'm willing to invest the extra time and steps to make the quality of his life more comfortable for longer. I'm still waiting to here the Dr opinions and see if there is time available that can be added to his rod lengthening surgery. Once again the waiting game, sigh.
Please keep Danny's girlfriend Kylee and her family in your thoughts n prayers. As they are preparing to let their Lil Angel go. They are going through something that no family should have to ever endure. My heart breaks for them. What a wonderful family and I'm so glad our paths have crossed to make a great friendship. We LOVE you KYLEE!
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