Life updates

Jilli:
Jilli had PT this morning. Since last Wednesday her energy has had times of being lower, to be quite honest, Wednesday and Thursday I kept waiting for the other shoe to drop. She was tired, she didn't want to do anything and was complaining her tummy was bugging her. It was very similar to how she was just before she got sick on Good Friday. I try not to let fear guide things but I was worried. Friday she did better and she had a fun weekend of zoo class and her best friend Caroline's family spent the weekend at our house. Today she is back to really tired. We are wanting to not let a crash happen as bad as the last one but we still don't know what caused that so its hard to know how to help keep it from happening that bad again. Her PT is going to call rehab to see their thoughts

Thursday we had lots of "fun" trying to get one of Jilli's med refilled. I sent it to the pharmacy a week before we needed it because I knew it was out of refills. They sent to the dr twice that they needed a new script and each time it came back saying "not appropriate dose" or to discontinue the med. This was very confusing as she has been on this med since 2 months old and it keeps her from vomiting acid into her lungs which is rather important in the fight to keep her lungs doing as well as possible. I called the GI nurse but didn't hear back so then I got special needs involved. The doctor sent me a message saying she didn't send that to the pharmacy and she has no idea who did and why they would do that. The doctor ended up calling the pharmacy at 8:30 at night for us to get the med filled at it had not been a week since I first sent it to the pharmacy and now it was needed right away. I love our GI dr but sometimes getting to her seems like hoops, but once I am able to communicate directly with her she is amazing. I then called Walgreens and asked on of our favorite pharmacists if he could please flavor it grape for me. This is one of two meds Jilli gets orally (she is NPO otherwise) and last month someone accidentally flavored it watermelon and we spent the month with a very sad girl who was not taking the med as well as she normally does because she hated the taste. Now thankfully we have it and it is flavored grape but it was a long hassle. I also asked the pharmacy how the script is standing for her one ned med. They gave us an emergency fill before we went to Disney but I had not heard if we were approved to get more of the med or not. They said they would look into it because the computer does not say if it was approved or denied.

Jillian's rehab dr did the peer to peer review with her insurance company today and they say no matter what they will NOT pay for any sort of power assist on a wheelchair until she has a manual chair for at least a year! AHHH!!! The power assist is really needed. Her PT and OT are sending a message today to the state answering all of the state's questions about it all. We are kind of putting all of our eggs in the hands of Medicaid! We found out the wheelchair company messed up more with the order then we thought which frustrate me as well. Getting a wheelchair for a 4 year old who needs it should not be this hard!!! Too bad we don't have a congress or president who are interested in help fix the problems!

On Wednesday we have to head to the lab to get Jillian's CoQ10 level run because for some reason when they drew her blood last month they ran an order from over a year ago from a different doctor and not what we were there to have run (even though there was issues and they had to call up to GI to varify orders and it was a whole ordeal so they knew what needed to be run) I haven't told Jilli yet but I am hoping she does ok with it. She did ok at her last lab. Its just frustrating.

Lydia:
I just talked to  Shriners.  Her leg is bowing more and more each time she stands on it and is dragging her foot and sometimes standing on her ankle. Her PT used special tape today to tape it in a better position but today her leg was worse then it has been before. I am hoping they can get us in soon and I am hoping bracing will be enough to help it. What had been something we were talking about needing to look into in the next 6 months has suddenly become a now problem.  Sadly they can not get her in until September 7th! We might have to go elsewhere. I will talk to her team but I am worried that waiting two months it will keep getting worse.

Lydia's vomiting is better now that she has doubled her does of PPI however she is on a lot of meds for someone her size so we are going to try to back off her H2. If that does not work then we will try erythro. We try hard to only use meds we have to with the girls so right now is going to be a balancing act as we figure all of this out.

We see Special Needs later in the week so I am hoping we have a good appointment where we come up for plans for a few things.

Other stuff:
Brent went to leave for work this morning and his car battery was dead. He couldn't take my car because the girls had therapy so he worked from home and once he is done we are going out to buy a new battery.  :/

We are serving dinner at Ronald McDonald House this weekend. When we looked a few weeks ago, no one was signed up for any meal for the 31-3 so we decided to when we saw the need to step up. If you are interested in joining us in helping let me know. A Lake Geneva Meats has agreed to sell us meat at wholesale price which we are very grateful for. We are going to do a cook out since it is the weekend of the 4th. Also, a lot of store are having toy clearance right now (I know Target has a ton). RMH is always accepting new, in package toys. They especially are always looking for toys in the $10+ range for kids under 2 years old. If you need help getting donations to RMH let me know.

We had a great weekend with friends and family. Saturday we met Nate's family and Caroline's family for lunch in Milwaukee. Then Caroline, Jilli, Stacy and I took the girls to zoo class. That night we cooked out and Caroline's family spent the night. Sunday they joined us for church and lunch. They then headed home and we went to my grandparents to celebrate birthdays. It was a busy weekend and I am tired but it was good to spend time with people we care about.

Are are also in the midst of stuff for the Children's run/walk. I am excited for this year!