Wednesday mid day I got a text from the pharmacy that Jillian's neb med was ready and listed $0 for the amount due. I headed off to Walgreens quickly and Medicaid came through... they paid for the neb med!!! This is a huge load off my mind! Jilli will have more crashes and we need this med during them and knowing that we have some now is amazing. Thank you to everyone who prayed for that! I started fighting for that med in April and months of work paid off!
As we were headed to dinner on Wednesday Brent grabbed the mail and in it was a package from Amazon from a friend of ours. Jillian takes multiple vitamins that are a part of her med routine and they really help however because they are not prescription drugs insurance doesn't pay for them. She takes CoQ10 in a large volume (60ml a day) and that is one we pay out of pocket for. We price hunt for it and when it goes on sale we stock up. I got a text on Saturday morning from my friend Stacy telling me that Amazon had it on sale for a good price and had a $5 off coupon! Caroline is on the med too so we frequently are letting each other know the best prices for it but this price was by far the cheapest it has been. Brent went on and ordered a few for Jilli. Wednesday we got a bottle with a gift note from Stacy... she wanted to make sure (she was ordering hers before we were up and moving) that we got some too at the grate price so she sent us a bottle as a gift. True friend there! I never thought I would be so touched by someone sending me vitamins in the mail but in this journey its those things that make me stop and be so thankful.
Yesterday we had 8:45am PT an hour away from our house (my children are not morning people) and at 9am the guy from the wheelchair place came with the rest of Jillian's parts for her wheelchair! He put the new wheels on which work so much better! He also put on brake extenders which make it easier for her to put the breaks on and a butterfly harness for days her body is too weak to sit up in the chair. He also helped with the Smart Drive more since he knows about them. Her wheelchair is now complete!!! This has been a challenging journey that took 8 months to get her the chair she needs but the day has finally come where all of that has paid off! We stopped at RMH yesterday to drop some stuff off since we were in the area and Jilli loved showing off her chair to everyone. She still has a ways to go with learning how to work the smart drive but she will get it, it will just take time and work. After we left the PT place (Jilli was tired they put her in this really cool contraption yesterday and she got to jump... jumping is not something Jilli's muscle can do on their own so being in this and getting to jump made her smile from ear to ear!) we ran to buybuybaby to pick up a diaper bag backpack because with Jilli in the wheelchair now I am just carrying Lydia more and the bag I was using wasn't working. I found a bag that fits an oxygen tank it it! Then we met Brent for lunch. When we got to lunch the scheduler from the wheelchair place called to tell me Jilli's wheels were in and asked when we could schedule a time to put them on... the wheels that had just been put on a couple of hours before. Yea...
Yesterday was also exciting as a mom because we headed to a teaching shop near RMH to look at their Playmobil. Jilli LOVES Playmobil and has decided that is what she wants for her birthday and Christmas this year and she loves to go to stores that sell Playmobil because then she can look at it. The large piece she wants for her birthday went on a great sale on Amazon last week so we picked it up. The big piece she wants for Christmas is a retired piece so I had been searching for it however since it is retired everyone has upped the price on it. We walked into the teacher store and there sitting on the clearance shelf was the piece she was looking for marked down in price! The very kind sales person helped me by grabbing it from the shelf so Jilli didn't see. She even wrapped it in Christmas paper for me! Then when checking out I as surprised to learn I could use my teacher discount there on top of the clearance price! And then on top of it they brought it out tot my car for me and put it in so Jilli wouldn't see. The service there was AMAZING! I use to work in an independent toy store and was taught how to have good customer service and this place yesterday was on their A game! Jilli didn't even notice that I bought anything and was just thrilled that they have the full sized Playmobil catalog that she got to take home and has been looking at since.
This has been a week of resolutions.
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