#WERISEUP

I post almost daily about the cool activities Josephine does through TinySuperheroes. Every month she earns a new patch for her super awesome cape.
Eighty percent of the participants in TinySuperheroes are limited physically or cognitively making it difficult to  participate in other activities. Jordan wrestled. The other two cheered. This is Josephine's activity, her sport, if you will.
Tiny Superheroes does not charge for the patch program. Any child can participate and feel included for free.  TSHs funds some of this program through merchandise sales. I have a few items myself. But in order to offer this program to kids with extra issues for free during this difficult time, we are also fundraising.
I'd love to raise $50 more to make an even hundred. Any amount will be appreciated. ❤️
This is your #WERISEUP campaign link:   https://tinysuperheroes.com/rise-up-josephine-sloan/

https://www.facebook.com/TinySuperheroes/videos/548573442735488/?extid=e6NqpAHbJMWhLByK&d=null&vh=e

She's my Tiny Superhero

https://tinysuperheroes.com/stories/super-josephine/

Time goes by

Josephine just had her 4th birthday. We had a rainbow and unicorn party. It was cute.We played games and had decorations.
She went through a year of preschool. They have done wonderfully with her. She is due to start year 2 of preschool in a few weeks.
She has made some advances communicating with switches. When I can set it up, she has a switch by her head for no and one by her hand for yes. Sometimes she does really well with them. Others she just plays with them. My hope is that she will get more reliable and consistent with her switches.
We bought a van and worked with her waiver to get it modified. It took 7 months and a lot of back and forth, but it has made transportation so much easier.
We have reached a point where we are either going to have to sell our home or modify it. Because of the layout, modifications will not be easy to overcome the issue of stairs, but I am still hoping that will be possible. I love our home.
We have become very involved in a group online. It is for kids with extra needs and their caregivers. The kids receive a cape and every month are given missions. Upon completing the missions with help from siblings or a parent, the kids receive patches to put on their capes. We eagerly await a new mission at the beginning of every month, and then we enjoy completing it.

That isn't how RARE diseases are supposed to work!

A rare condition is uncommon. Not a lot of people have it. Not a lot of people have even heard of it. And as a caregiver, you have to be super informed because even specialists haven't seen many cases. Thus I have learned every thing I can about congenital myotonic muscular dystrophy.

Imagine my dismay last week when I received a call from genetics letting me know the results of further testing on Josephine. She has not one, but at least two, rare conditions. And now I begin the task of learning everything I can about CDKL5, her most recent diagnosis. Yes, you read that right. My sweet girl has two rare genetic diseases.

She also has Gray Matter Heterotopia. This doesn't appear to be associated with either of the other two conditions. It is more likely to happen when other genes go awry though.

Each of the 3 conditions alone can cause physical and cognitive impairments along with other health issues. What does this mean for my girl? I don't know. There may not be anyone else out there with this combo, so I have no point of reference.

Best Day Ever... unless you have a disability

Josie and I went to the local amusement park today. Their slogan is "Best Day Ever" but that doesn't apply if you have a disability. This is the third time I have been there and had issues with employees not understanding or following the disability policies of the park. I always go to guest relations to clear these issues up on behalf of my daughter and every other family that may have similar issues. So that is 3 visits with 3 disability access issues, 3 apologies from management, and 3 times I have been told the employees are in the wrong and will be retrained. Why does this keep happening?  Were they not trained properly the first time?
I left the park in tears for the second time (didn't cry on one of the 3 visits) with their promises to do better ringing in my ears. I know they don't understand the importance of this in our lives. They don't get that the things she can do are restricted enough already without being further limited by uniformed employees. They don't get that it is a fight and a struggle every day to make her life as unlimited as possible. They don't understand how important that one day at the local amusement park where I can just enjoy my time with my daughter and make happy memories means so much to me.
To their credit, the first day I ever took her about a year ago was wonderful. Everyone was informed and things went smoothly. I spoke glowingly of the experience. I shared pics and left a great online review. We can't seem to get anything even close to that again. Every return visit has had at least minor issues, sometimes major. These are not the sort of memories I want to create nor the experiences I want to have while there or anywhere.
I try to do the right thing. I advocate. I speak up. I hope for better next time. But sometimes I just want to go and have a good time with my daughter. I left that park today feeling physical pain in my chest, literal heartache, for my girl.

Busy week

Josie and I had a successful trip out to Utah at the beginning of the week. I hate traveling with all of Josie's stuff, but I love it once we arrived. Despite calling ahead to the airport, we had a bit of trouble getting the disability assistance we had arranged previously. I find the airport staff and TSA difficult to deal with and the flight attendants on the plane super helpful. She cried a bit on the way home, but once we landed, 3 other passenger offered kindness or assistance.
Her medical study only took about 4-5 hours. We were there for 2.5 days. We went to the The Porcupine Restaurant, the zoo, Red Butte Gardens, and The Natural History Museum. It was wonderful seeing lots of the local sites. I was extremely organized with her food and medical supplies, so it all went pretty smoothly while we were there.
At the end of the week, I had my older daughter's graduation party. I can't believe high school is behind her now, and she goes to college orientation tomorrow.  All 4 of my kids were home together which doesn't happen very often and makes me so happy. The party went smoothly though it was super hot as we set up at the park. I loved seeing her have fun with her friends. They played on the same playground equipment she has been playing on since she could walk and they went down the hill and waded in the creek. My friend brought her daughter who just turned one and started walking earlier this week. I spend a lot more time with kids who are not typically developing, so I was fascinated watching her walk and play with her baby doll. Many little kids don't pay much attention to Josie, but this little sweetheart held her hand and patted her leg and just wanted to be near her. I loved seeing them together.

I spent today packing to take Josie on a 3 day 2 night trip. I mean that literally, I spent the whole day packing for this. It is just the two of us, but she requires a lot of stuff packed in as little space as possible so I can handle it all plus her by myself. I made a list of things that need put in the medical suitcase that I can't pack yet. I will spend every moment between now and the minute our plane departs worrying I will forget something crucial. I am proud that I have managed to fit it all in two carry ons, a small feeding pump bag, and a small diaper bag. And we have a portable oxygen concentrater that is as big as a carry on. She is strictly g-tube fed and on oxygen and a pulse- ox at night. The oxygen items will be really important because we will be in Utah were the elevation is higher and it is more difficult to breath if you aren't acclimated to it. Josie is participating in a study for kids with congenital myotonic muscular dystrophy. They check year to year how the child is doing. Like many things with Josie, it is a little difficult.  Last year the testers didn't understand CVI at all and tried to get her to visually track and grab objects while I tried to explain that while her eyes work, her brain didn't process what she sees. I have some seen improvements physically and cognitively for for her since last year, but I don't know how much the testers will see. She is so far behind most other kids with this condition. I hope they know what Gray Matter Heterotopia is so I don't have to explain that too much. The thought last year was that she would be vastly improved and maybe somewhat mobile by the time she came back this year. She still isn't holding her head up well, much less mobile. They really stressed the importance of therapies. Josie has 8 therapists, and I work with her extensively every day on our own. I don't think there is any more that we can do, and hopefully it is understood that she will progress in her own way in her own time and not see it as a lack of effort. I am nervous but excited to go.