whirlwind

The past week and a half feel like a crazy hurricane. Between Jillian's surgery and grandma's death, life is just odd at our house right now.
Jillian's leg is healing well. We were able to give her a shower on Sunday which helped with the appearance of her leg (it looked kinda bloody before). She is walking off and on. She is still falling a good amount while walking but yesterday evening looked better. Monday in therapy she took a couple of good falls, just trying to walk, to the point they were concerned about if we needed to fill out accident report paperwork, but I told them it is how it is right now. I would not be walking very well either after they sliced open my leg and took muscle out of it. We are also trying to gauge right now if all the muscle weakness is from her surgery or from the new medication that she is on that can cause muscle weakness. Her doctor and I have been messaging about it. Her doctor also sent over the referral for neuro today so hopefully we can get the scheduled soon.
Speaking of therapy, the state decided they don't need to pay for Jillian's PT anymore... not that the child who is at the 8th percentile on the PT test or who scores in the 18-21mo old range (she is 31mo old) needs PT or anything. Oh and how about the fact the her oxygen drops during PT and we have to closely monitor her oxygen, but they wont pay for a pulse ox at home so it would not be safe to push her at home like we do in PT. I knew the therapy place has been fighting for her to still get services but as of Monday her payments were up. We are still trying to fight and hopefully we will persuade them,  but for now we had to agree to pay for therapy out of pocket. This is one of those problems when  a child does not have a diagnosis, this is not the first thing insurance has questioned paying for because none of her labels would warrant all of the stuff she needs.
There has been some good out of this week. Brent got a call on Thursday while we were in the OR pre-op area that he was offered a new job. This is a huge answer to prayer as his current job is in the process of closing their Milwaukee plant. They already laid off a lot of people and while they kept telling Brent he was safe, we were very uneasy about it all. If he did continue to stay employed there he would need to travel more and a lot of other things were still really up in the air. This new job has EVERYTHING we were looking for in a new company. It is such an answer to prayer. He is really excited about this new adventure, but the poor guy his head has just been swirling this week between the excitement of the new job and the devastation of his grandma's passing. She would have been one of the first people he called to tell about the new job (they talked several times a week) and it has been hard on him to not be able to tell her.
I think Jilli is just confused by her world right now. She is not use to mommy and daddy crying, and by this point in the week my eyes hurt from the tears. She keeps telling me to fix it mommy. To take Grandma Jill to Dr. Anna from Daniel Tiger and make her fix it. It is really hard to explain to a child who lives in doctors offices that the doctors could not fix it. She has been to a couple of funerals, my great aunt and my grandfather's best friend each died this year, but she did not understand what was going on at the time, she is older now. She knows the Grandma Jill was going to be at Disney with us and she keep reasoning with me that she will ride on an airplane and see her. Going to Disney and her not being there is going to be hard. Today we are going to go to Janie and Jack and find Jilli a dress for the service. Grandma would make trips to the mall by them and send me pictures of all of the clothes in there that she thought Jillian would love. She was always looking at their clearance racks and trying to find a good deal. I would always laugh when she would call me to tell me of the new clothing line they had and how cute it was. When my great aunt died a few months ago I was looking for a dress at Janie and Jack that I had seen on the clearance rack before my great aunt passed and sent Brent into the store to buy (he never did find the dress I sent him there to buy but he did find a cute one on clearance). Grandma thought that story was so funny and she went to her Janie and Jack and ended up finding the dress that I had sent Brent to buy, we all just laughed and laughed about it. Here is to hoping a find a dress there today that will fit Jillian and be a reasonable price!

I want to send a BIG thank you to everyone who has sent us texts, called us or left us facebook notes the past few days. They have meant SO much to us and I can't thank you enough. Thank you to Jaime and Jason for coming over last night and having dinner with people with bloodshot eyes and probably did not make much sense from the lack of sleep. Thank you to my mom who came over Monday morning when I called her crying after we got the news that family needed to come. My mom came over here and helped me take care of Jilli, helped with therapy, and got me Starbucks. She called me over and over again yesterday to check in on us and see how we were doing and how she could help us. Grandma Jill took my whole family in as her own, not just me but my family. She always made a point to have dinner with my parents when they were here and she and my mom would talk even without Brent and I around. She always asked about my grandparents, brother, and friends, and she kept up with what everyone was doing and how they were. She made it a point to include people that mean a lot to Brent and I in things. The pain of this is still so intense right now.

So thats our week so far. Its only Wednesday  but feels like this week has been forever. Thank you to the people who have loved on us, we truly appreciate it.