being self aware

As Jilli is getting older she is learning more about the world. She sees her differences and while we try to celebrate those things (seriously seeing someone with a disability on TV is like a party to her) it is only natural that she is going to have questions. Tonight we had to do her least favorite medical thing and if I made you guess it would probably not be in your first several guesses... she hates changing her oxygen canula. Once it is in it is fine but the act of taking the old one out and putting the new one in involves negotiations and frequently crying. Thankfully it is not a daily thing that needs to be done and honestly we don't even do it as often as they suggest as long as it is still clean inside and working well but the one she had on hit its point tonight and needed to be changed.  Tonight was not as bad but once we got it in and taped she had questions.
"why do I need oxygen"
"why do I have a muscle disorder"
"who else has a muscle disorder"
"why do I need more oxygen"

It was a good conversation. Very age appropriate and one that we will continue to have as she gets older because I am sure there will be more questions. Its still hard to answer those though questions. Once we were done talking tough she went on playing like her happy normal self (she loves sticker books and one of my former coworkers mailed her some a few weeks ago so she had fun with that tonight)

I posted last night on facebook about how life is really more about balance then extremes... at least it should be. As I have been thinking up to Easter I have been thinking about how God understands and demonstrates perfect balance.

As Jilli gets older we are going to keep talking about her medical journey because someday she is going to have to have an input on things and I want to teach both girls how to make informed medical choices. And our goal is also to show the girls the balance of how amazing and wonderful they are but at the same time admit when parts of life are hard. I also want them to remember that everyone has hard things in their lives and while the girls might have a lot of health stuff going on that does not trump other people's hard things in their lives and that we all need to have compassion and empathy and not wallow in our hard and forget everyone else.

So yes at our house we celebrate feeding tubes because they make it so the girls can eat safely. We make oxygen fun because it makes it so Jillian can participate in life more. We are grateful for doctors and how much they help. We give back to places that help us in this journey to show our gratitude. And somedays we admit that things are hard...



Other news:
-Lydia's pee is doing better. Not complacently back up to baseline but we will take better then what was going on last week. Everyone on her medical team is still stumped

-I talked to Jilli's wheelchair place today (after me standing on my head to get them to answer me our PT emailed for me and magically things happened) They are going to work with our insurance company however they still don't have all the paperwork ready to be submitted yet but they hope to have that done soon so they can submit for pre approval. This process is a test of my sanity but I keep fighting because that is what is best for Jillian

-We are having Lydia's baby dedication at church on April 23rd. Contact me if you want more details

-I met with my dr this week and he has a plan to try to help with some of my dislocations with my EDS. Some days have been rough with that lately so I am hoping to not have as many dislocations.

-I was reminded this week that all of the issues with the crazy cost of EpiPens is still not fixed. That all might have gone away from the news but it is still an issue and the drug is still crazy priced. Something more needs to be done.

-We are excited that Team Jilli & Lydia is serving dinner on Saturday at RMH. I am thankful for the opportunity to give back. I also post on facebook on Sunday that this week Target has baby toys buy one get 1 50% off plus an extra 10% off with Cartwheel. Toys for babies and toddlers they sometimes run lower on at RMH, especially ones that cost more then $10, which are the toys they put in the magic room so if anyone picks up some toys for that age group and needs help getting them to RMH let me know, we would be happy to help!

It was nice out on Sunday so Jilli and Brent flew a kite and then she playing in her little house for a few minutes