Today has been a day filled with doing Jillian things. I don't mean spending time with Jillian doing fun things, but advocating for Jillian and her needs.
Friday afternoon Brent went to pick up Jillian's Advair (a medication for her lungs) and they told him that for Jillian's between the TWO insurances Jillian has (one from Brent's work and one for the state for kids with significant health needs) that the cost would be $400! Why? Because the state no longer covers in inhaler version of the MOST common asthma medication. That simple, the start of the new year they stopped covering it without telling families. You go to fill your script to find out they will not pay. The pharmacy told us they would send a script to the doctors office, however it was after office hours for the day. During the weekend Jillian ran out of her med. Out of the med the helps her lungs when it is below freezing during cold/flu season. It was a cross our fingers, hope for the best, dont expose to to many people weekend. The pharmacy told me to call the doctor first thing in the morning on Monday. I called today to see if they had samples of Advair that they could give us while the pharmacy worked on fighting for us. They told us they had over 100 faxes from pharmacies about kids not being able to fill their Advair! This is going to impact a lot of kids in our state! Advair has no generic here in the states. They said that they are needed to switch kids to Symbicort to give that drug a trial before they do the appeal for Advair. So they sent the script for Symbicort to the pharmacy. Then I get a message from the pharmacy that there is a problem with her insurance. I call them and her primary insurance is now saying we need to call them about getting Symbicort covered! I call the insurance company... they tell me they dont cover Symbicort! They would not tell me if they would cover Advair! I asked them what they expected me to do... she said the other insurance company should just cover the drugs they cover... well wouldn't it be nice if that was how it worked. I then called the pharmacy back. They said to let them see what they could do. After a little while they came back that they got the Symbicort covered. Yeah! They said that if after 2 weeks the new med was not working for her to let them know and they would help us to try to get Advair back. This whole thing just seams crazy to me! We finally had a med that was working ok (not great, but a lot better then the other meds she was been on) and now we have to change meds because of insurance. It is crap! They are both brand name drugs. They both cost about the same. This is ridiculous. Hopefully this new med works!
Today is Monday so that means therapy day in our world. It has been 6mo since she started therapy and that means that she needed to be reevaluated again. We did her PT reevaluation today. She is currently at the 8th percentile for her age. That is up from the 4th percentile! Gain! I know the 8th percentile is still not good but it is something and we celebrate gains. She is better at walking then when she was first evaluated and now she can kick. She still can not throw, hop, jump, stand on one foot or walk on a piece of duct tape, or run. These are all things that she should be able to do at this age. Jillian also still has one side of her body that continues to we weaker then the other. We are going to continue with PT once a week. Her therapist asked if she has ever been evaluated for OT. I told her she had but at the time she did not qualify however the OT said that we would continue to watch it because she would not be surprised if as she got older she would qualify. Her PT said she would talk to the OT and bring up some of the current concerns and see if it would be worth retesting her now.
As I was dealing with the insurance issue today Jillian pooped. I was grateful for poop. Her GI system is in a mix of having a lot of issues again. She is randomly vomiting more and you can hear her refluxing more. She is pooping about twice a week right now which is not ok! When her poop does come out is is really thick which for someone who is on only liquid is not right either. Luckily we see GI again next month. Not sure though that there is a lot more that we can do right now. Since she is finally over 10kg we might be able to up her reflux meds. Because she has not really gained much weight in the last year plus she has not had a med increase so it might be time for that. We will see. I was excited for poop, but of course it came while I was fighting for her other med! Oh life!
Today has been exhausting! Today has been tiring. These are the things that are all a part of being a mom with a child with special needs. It is not just the the medical stuff but all the crazy stuff that goes with.
But I am choosing to end this day on a good note! As a type this I am listening to Jillian and Brent play trains. Jillian and I went to Target after therapy and just wondered. Yea I had some things that I needed to pick up but we just walked that isles, I think the mix of retail therapy (even though my most exciting purchase today was new Jake sheets for Jillian that were 75% off!) and walking did me some good. It also helped that I had such a cute shopping partner (the Starbucks probably helped too, thank goodness for Starbucks in Target). I made a yummy homemade dinner for us that Brent and I really enjoyed. Jillian and I played for a while together on the iPad and just cuddled and played her favorite games. Looking at the positives in the little things today!
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| That is just a look |
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| My little fashion girl |
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| She LOVES her Elsa hat |
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