Brown and Pink Polka Dots : Family Update

It feels like is has been a while since I just did a life update of what we are up to instead of a focused post!

Jillian:
She is loving homeschool! She wakes up in the morning, gets dressed and then goes to the table to do her work. She sits in her Special Tomato seat during school so that her muscles don't have to work as hard to support her. She works so hard and I see how much she has grown. She knows most of her numbers and letters. She is working on learning about pennies and nickles. We learned syllables this week and picked up the skill really fast! She loves to add and subtract. She has mastered patterns and making graphs. She is working hard on writing.
Her favorite toys are her Playmobil. We stopped at a local toy store yesterday and they had gotten in the 2018 Playmobil catalog and I have one very happy girl. She reads that catalog for hours. She is most excited for the new wedding sets that are coming out. Her Playmobil all have names and whole stories. I love listening to her play!
She also loves to play doctor. She is currently sitting next to me "typing" on her toy computer the orders for her toys for the tests they need. Playing doctor is taking to a whole other level at our house!
She loves to was Project MC2, Super Hero High, Doc McStuffins Toy Hospital, Vampirina, Daniel Tiger and Disney Vlogs.
Her heart always makes me smile. Yesterday when we were at the toy store I told her that she could get one person for her Playmobil. She was interested in cruse ship people or a singer with keyboard but she didn't want to buy either because there was only one of each on the shelf and she was worried that if she bought them someone else might come in looking for that same piece and be really sad and she didn't want anyone to feel sad. I told her that maybe they had more in the back and then she was ok with picking the cruise ship people. Her heart is for loving others and that shows so often.

Lydia:
Lydia still loves Elmo! She is a huge fan of most things Sesame Street. She loves pretend phones and everything becomes a pretend phone lol. She also loves baby dolls and books.
She is also becoming interested in people her size. Our friends Jaime and Jason came over last week and that meant Emerson came over. He is 6mo older then Lydia. They had such a good time playing every day since she has walked around the house saying "Emers." She has started to play with others including Jilli.
She is still our wild child! She loves climbing up the slide and trying to climb the high chair. She wants to know how things work and has already started asking why. This week her new thing has been saying "oww" anytime she doesn't get her way, even if nothing is physically hurting her. This is going to be "fun" the next time we are at RMH!
Lydia also love banging on pots and pans and likes any time she is given any kitchen tool to use to make music with. She likes to color although has to be watched closely because she likes to try to eat them.
She is still my cuddle bug and can often tell when she is having a lot of behaviors that she needs more mommy cuddle time. While she likes to get into everything, she also really loves long cuddles.

Both girls LOVE music. They recently got the children's organ from my grandma's house and are loving playing it. They have their toy guitar that is often a battle of who gets to play first. The other day we had some Switchfoot music on and Jilli picked up the guitar to play along and then Lydia started to pretend to play shaker. They also like to watch the music videos from children's hospitals of remakes of songs with kids in the hospital. I think both girls really relate to these videos. They love music so much.

I have been up to more writing for Complex Child. That is something I really enjoy and a way I feel like I can give back to the community. For this upcoming article I was lucky enough to get to have some close friends of mine help for checking for Biblical accuracy. I am so thankful for the group of college friends I have. We are able to wrestle life together even living miles apart. I am so thankful for their help and guidance.

I have also been reading a few books. I am not a huge reader, I am more of a vlog watcher but I decided to start reading two different books. I stared Reading Wholly Jesus and Never Say No. I am loving both books. Never Say No is a parenting book written by Jon Foreman's parents. I think Jon is an interesting person so I figured a book written by his parents might be interesting. I am not interested in most parent books, especially ones with absolutes... kids are not cookies and cookie cutter parenting is not one size fits all. However I am really liking this book. Its about raising well rounded children of faith. It is not a formula but ideas and big life lessons. It has been really good.

I also ended up taking a rest week last week. I messed up my back... doing who knows... itsjust part of having EDS. WE are going to go couch shopping this weekend though to see if we can find a new one that is easier on my back because while this couch has served us well for several years (and free!), at this point it is adding to back pain which I don't need and will end up costing me more then a new couch in medical bills if we don't do something.

Brent and I have also started to listen to the Relevant podcast. We both really like it. Brent and I struggle with a lot of the main stream American Christian things (because so many are American things not Biblical things) so I often feel like I don't fit in with the Fox News American church but listening to Relevant and talking about loving people has been amazing and what my heart needed. I am thankful for the people in my life that I am able to wrestle this with. My friends who seek what the bible says and love and live that out, that are not going to do things just because that is the way its done without looking into the why it is done and looking to see if something is done just out of it feeling good or if it is something that Jesus talked about. It is encouraging to me to hear other Christians writing a magazine and having a podcast that are seeking to love people like Jesus did. Its also funny because the people on the podcast and I grew up in the same generation and so many of the the jokes and such are really funny because we share a similar growing up culture of Christian music festivals and late 90s early 00s church culture.

Brent has really been investing time in intentional time with the girls. We got a few Kiwi Crates and he has been doing those with them. Jilli and Brent made a lava lamp and a cake together when I was at the concert a few weeks ago. Jilli and Brent also started an indoor garden above the sink. They are loving doing that together and it is the size of garden we can handle. I love the projects they do together. I know those are special things the girls will remember.

Health Stuff:

We don't have the letters yet to submit to NIH however the rest of the forms are filled out so once I have the letter I will submit everything. I checked in with the nurse today about it and she said I should have them soon.
We had Jilli's CTLS waver meeting on Tuesday. She was on an 8yr waitlist however funding for this waver in Wisconsin got larger so her name has now come to the top of the list. It was an odd meeting but we are doing what we need to do. Part of this waver is that someday it will pay to modify a wheelchair van for us (catch is we have to buy a new van for them to modify) but van modifications are expensive so this could be a big help! It also covers respite care which will be very helpful. I am also in the midst of filling out all of Lydia's Katie Beckett paperwork. I am not joking when I say paperwork and checking in with doctors is a full time job.
We got word last week that our primary insurance denied Lydia's genetic testing. Katie Beckett wont pay for it either. Our genetics team is doing a peer to peer review with our insurance company tomorrow so prayers for that would be appreciated. Insurance is so hard and it sucks how much of our lives and girls care they get to dictate.
Lydia has been having some GI stuff, not pooping and not having g drainage coming out her g so refluxing a lot more and in more pain, but that is starting to get better... she pooped all over my pillow this morning and has filled two drain diapers today which is more like the Lydia we know.
We took Jilli off of her Erythromycin shortly after she got home from the hospital the last time. She had been on it for 4yrs and the med is best when you take breaks from it. We were cycling it 3 weeks on, 1 weeks off but we decided with her team to do a longer break. Also erythro can effect the one urine test so there is questions how that test will be without the erythro so we will see.

I am actually grateful that the letter for NIH had not come yet. I needed to work through some things first. In the area of a diagnosis is someplace the devil pushes lies often and with us at a crossroads I needed to walk through some of that first before we could move forward. The devil often lies that I don't belong in the special needs community, that I am of no help there and that if I just pushed hard enough for a cure that the girls wouldn't have medical needs. I think he sees the work God is doing in the special needs community and the devil wants to disrupt that any way possible. I also struggle with putting my identity in being a special needs mom which isn't good either. My identity needs to be in God, and a part of me is a special needs mom. Balance is hard. I also know me, I know that if we get too wrapped up in a cure then I will miss all the amazing things God is doing in the journey and that would be horrible. I have so many amazing stories of things God is doing or has done during the past 5 years. I got an email this week that had me in tears in reminders of the things God is doing in the relationships we have made because of our journey. So we go back to what our prayer has been since we found out we were having Jillian... that God uses us for His kingdom and that we have eyes to see it. Being planted in that and not in a spiral for a diagnosis makes life so much easier. It means that life doesn't rest on a diagnosis. It means I see my kids as beautiful who they are today. It means that we focus on the things God is doing, the people He puts in our lives, the opportunities He gives us and along the way we see pieces to His puzzle. Of course there are times I want pieces before I get them. Of course there are times when I get angry, but focusing my heart back makes such a huge difference. It makes life about the journey. It makes it so I can go into this adventure with NIH knowing it might or might now give us more pieces to the puzzle but that our hope doesn't rest in NIH, although we are so very grateful for that government program even if they don't accept us because we know they are a piece for so many people. Sure if we are not accepted or we come back with no new answers, I will likely be disappointed, but I know where to turn my heart. So as odd as it might sound, its very rare these days that I pray for a diagnosis, because I know that my mind gets stuck in that rat race when I do, so I pray for God to use us for His will and for us to have eyes to see and hands and feet to go where we need.