Upcoming surgery

Lydia's list for next Thursday keeps growing!

Here is what is going on:

1. She is having and EGD with stomach and throat biopsies. We are trying to figure out why she has intermittent GI bleeds and why she ends up with bloating issues that keep her up some nights. There are some days where she will look very pregnant because of how bloated and hard her stomach is. We haven't looked around in her stomach since she was 3mo old and since she is having issues it is time again.

2. An echo of her heart. At our hospital they do echos before age 2 sedated so at first our plan was to do it after her birthday however since her EGD was scheduled we decided to move it up and do it at the same time thus insuring she will lay still so we can get good pictures of her heart murmur.

3. A muscle biopsy, likely of her leg. This was not added until today. There has always been talk that someday she would likely need a muscle biopsy but it has always been talked about as a future event. I asked SN to check in with our team to make sure no one else wanted something while she was already in the OR and I got a message today from genetics asking for my permission to do a muscle biopsy.

Honestly I was fine about the surgery until I gave consent for the muscle biopsy because the other things seams so normal (I guess thats what happens when between your two kids they take 9 trips into the OR in 5 years) but the muscle biopsy sank me.  And honestly that frustrated me.

I understand the thoughts and logic behind the muscle biopsy. I understand why they are doing it and I understand that no one jumped to doing this, this has been talked about for almost 2 years. I knew it would come someday.

But I am coming into this biopsy with a much different outlook then I did for Jilli's... partially because I don't feel as desperate for a diagnosis as I once did... I still think one would be helpful, but my heart and mind don't rest on a diagnosis like they once did... all of my hope is not sitting on this test. So while I think this might help provide more data, especially knowing the difference in how Lydia's muscle looks as compared to Jillian's, I don't expect it to give us any diagnostics definite. That makes it a little bit harder though because while I know this will be helpful and in the long run is a good idea and will be helpful in the long run, I know its likelihood of right now helpfulness is small.

I have also already helped one kid through the recovery of this test and know it is hard for them having part of their leg muscle cut out. Jilli handled it like a champ, but it still is more of a recovery then just an EGD. It is also the week before Lydia's birthday and we already have some water park time booked (got a good deal for having been at the water park during the fire) and her birthday party at a park so my hope is that recovery is easy for her like it was for Jilli.

Thankfully the amazing Lisa is working on coordinating things and I know all is in good hands with her on it. I also had GI check with IR today about making sure they have the right tube in stock incase the GJ gets bumped out of place during surgery which can happen sometimes (it has for Jilli). IR said they should have one if we need it but they can not guarantee anything. Prayers please that we don't need a tube next week and that if we do they have the right kind. Also I still need to find out if we need to do a surgery consult first because we had to do one for Jilli's muscle biopsy.

I am annoyed that the message today from genetics hit me emotionally. I wasn't expecting that. I normally am just a do and go person but I had tons of thoughts after getting that message. I am doing better now, I just needed to process for a bit... its one thing to agree to feeding tube surgery because there you see a definitive positive but this is more unknown without it directly solving a problem... I don't know if that even makes sense to anyone but me. What I do know is I trust our team and I know they wouldn't just cut Lydia open.

In other news... we are remodeling our master bathroom!!! When we bought our house it was foreclosed and trashed and the master bathroom had to have water shut off to it because of leaking. We have done a ton of work to our house including redoing another bathroom for Dan when he lived here, but our master bath has sat unusable (there is another full bath on the level of the bedrooms so we have been using that). But one of our goals has always been to fix up our master bath especially since its not our plan to be in this house forever and this bathroom will have to be fixed before we could even think about selling and I would like to get a little use out of a fixed up bathroom before selling! We had some unexpected money come and we decided that instead of buying each other anniversary and mothers/fathers day gifts this year that we would fix up our bathroom. We went to Home Depot the other day and they had a floor model vanity for 75% off so we bought that and have been picking up the other pieces for the bathroom and Brent's goal is to start demo this weekend (everything that is currently in the bathroom needs to come out as well as a half wall and patching of the holes in the wall). I am so excited! We are not doing our dream bathroom... we are doing functional and sellable but I am just exciting for working! To start to prepare for this project this weekend we deep cleaned our bedroom because we were not using that bathroom the area infront of it had become storage so things needed to move and we decided to take that as a time to go through all of Brent and my clothes and pull out things we no longer fit or wear. It feels good to have done a deep purge of stuff. I tried to donate stuff today however the place we donate to was not accepting donations today so we are going to drop stuff off tomorrow... it will feel good to have that done! One of my big goals this year is organizing and decluttering! This is another great step in that goal.

Hey all, we also are still looking for more team members for the Run/walk for Children's... we currently have 13 people signed up and our goal is 30... also our goal is to raise $3,000 and currently we are at $100... if you have ideas for helping grow the number of people on our team our dollars raised for this great cause I would love to hear more! 

Us with our good deal!

Jilli painting her Tiny Superhero project for this month

We took the kids to the observatory for STEM day this weekend and brought my brother with who use to work there. It was a lot of fun!

Jilli watching in a VR the video camera attached to a drone... she LOVED it!

We needed a new loaf pan... Lydia thought it was a phone lol

Lydia and the doll stroller... Lydia's favorite things in the world... Elmo, Minnie mouse and baby dolls!

Doctor Jilli

Playing bubbles!

Fill up- Amanda's summer book and podcast recomendations

I had a quintessential evangelical 90-00 upbringing. I laugh so hard at the memes and lists at this point... I owned the CDs... had a WWJD bracelet... grew up on the cartoons... listened my my fair share of Adventures in Oddysey. Brent only kind of understands the depth of the youth group subculture of this time but my friends who get it... get it lol.

One of the big things during this time was Christian music festivals and teen retreats. There are not as many of these events as there once was. I was listening to the Relevant podcast a while back and they were talking about the mass amount of these events at one time and how it isn't the same anymore.

I went on lots of these retreats and such and learned so much. I learned things that have shaped who I am. Even though I can be critical of a lot of things going on with Evangelicals in our current culture, and I think many of these criticisms are really valid (honestly sometimes I get tired of defending Evangelicals... not Christ, there is a big difference between defending Christ and a group of leaders in the church... I will defend Christ), my deep roots in this culture reminds me of the great aspects.

That being said, there are times I feel like in my life I lived for the next big Christian event because they would fill me up. I would leave energized and pumped and have new deeper relationships with the people I went with. These conferences can be amazing.

But sometimes I felt like I clung onto these events because I would see how much I would grow but I wouldn't always work to foster continuing growth once I was home.

Now many years removed from youth and college conferences, I haven't been to a conference in years and thats ok, because while conferences are great and they have great value, sometimes its also important to not just live for the highs but also to be responsible for working to gain information and learning.

In this season I have become very thankful for books and podcasts because I see the value in using them to learn. They help me to stretch and grow and that is so importation.

So it being Memorial Day, the unofficial start to summer I figured I would share some of my podcast and book recommendations to stretch you and fill you up. I wouldn't necessarily put any of these under the self help category because I am more of a how can I learn so I can love everyone better kind of person because I see real growth in me the more I love others.

Podcasts:

• Relevant: this podcast's key demographic is us church kids from the 90-00s. It is funny but yet deep at times and has great guests from both the Christian world but also movies, books ect. Their tag line is that they are at the intersection of faith and culture and that is very true
• The New Activist: This podcast is put out but International Justice Mission and is interviews with people who are making real differences in the world. For people starting schools around the world, to companies helping to solve social issues, to people doing the right thing... this podcast will move you and make you think differently. 
• The Faith Angle: This talks about the intersection of faith and politics and it has people from many different views on. This podcast looks at the issues behind things instead of just spewing talking points. 
• That sounds Fun: the host of this podcast Annie F Downs in on the Relevant podcast and that where I started to hear about her and have recently fallen in love with her podcast. She talks about things that matter but also is funny and likes to have fun... its like hanging out with friends at a coffee shop! 

Books:

• Love Does and Everybody Always by Bob Goff: These are two separate books however he wrote both of them and they go together really well. They are stories from Bob's crazy life about really loving people. You will laugh and cry.
• Love Lives Here by Maria Goff: this book with written by Bob's wife and is in very similar style but as a female I really related to her views on things and how she feels about things. I would read Bob's books first because I feel like they go together nicely that way, kind of like telling a full story with multiple sides. 
• Grateful by Diana Butler Bass: Diana was interviewed on the Faith Angle a few months ago about being grateful even in the mist of political mess and what she had to say really struck me so when her book recently came out on the same subject I wanted to read it. I haven't finished it yet, infact I am only a few chapters in however it is amazing so far and so well written. She talks about true gratefulness not this American mess of debit and duty gratefulness that leaves us feeling really empty. She is also kind in her words and doesn't make you feel like just because you don't have this perfect that you are hopeless. 
• Never Say No by Mark and Jan Foreman: this by far is the best parenting book I have ever read because it is less about a formula and more about love and enjoying your kids and remembering the little things that count. This book inspired me to be a better mom.
• Sinners in the Hands of a Loving God by Brain Zahnd: I recommend this book if you fall into one of two camps.. either you think God is a mean God in the sky punishing everyone... or if you have grown up in the church and want something to wrestle with. I wrestled with this book at lot because he makes a lot of claims that I had to stop and think about if I agreed with what he was saying. It made me dive into my Bible and have amazing conversations with friends. 
• A Faith of Our Own Johnathan Merritt: this is written by one of the hosts of the Faith Angle and is about ending the culture wars. It was so good and made me have more empathy for people on both sides while still at the same time inspiring me to want to hold all to a higher standard. I for a long time just didn't care about the culture wars but now I see the eternal damage being done by them.
• Messy Spirituality by Micheal Yaconelli: this is a book I fist read in high school and have read multiple times since. It is about being ok with mess in spirituality which is something my type A brain needs to be reminded of sometimes... this book helps me to have more grace with others and myself 
• Anything by Annie F Downs... I will admit I have not started reading any of her books yet although I have multiple previews downloaded on iBooks (how I read everything) but from listening to her on multiple podcasts I have no fear in recommending her. 

So there are my summer lists! I know people often use the summer to rest, but I challenge you to make it purposeful rest.

What my iBooks looks like right now lol

the best tricycle ever

The best tricycle ever came to live at our house this week!

A couple of months ago my grandfather came home from a meeting at Shriners with a packet about getting Jilli a tricycle. In the meeting he was at the person in charge of this program presented about how Shriners is helping to get kids bikes and he thought of Jilli and asked for a packet for her. We worked on filling out the packet with Jilli's team (Jilli had to write an essay about why she wanted a bike) and delivered it to Shriners Hospital when we went down for the girls braces. A couple weeks later we got a phone call that Jilli had been selected to get a tricycle!

These tricycles are not cheep because they are customized to the child. Jilli had outgrown her little tricycle however her muscle coordination is not there yet to ride a two wheeled bike. She also need someplace to put her oxygen and feeding pump while she ride and her pulse ox too after a crash. She also needs support because it is hard exercise for her to peddle but really good for her so she needed a seat that gave her the needed support. It also has a parent handle so that if her legs get tired we can push her on it which will be helpful while out on walks.

We are so thankful for the tricycle and Jilli has already rode it 3 times since Wednesday when it was delivered (they shipped it freight all put together in a wooden box). We also went the other day and got her a new helmet because she outgrew her old one. She was so excited that she was able to ride her tricycle the other day when Jaime and the boys came over. Jilli is also VERY happy that it is purple!

Her tricycle is make by Freedom Concepts and they have been GREAT to work with and customizing what Jilli needed. The tricycle got her quickly and all put together and included any tools we might need for adjusting it. They also included the bell and the frog on it as a surprise!

Facebook Friends

I cringe when I get a Facebook friend request... not because I don't want to be someone's friend or I find them a bother... I cringe because I worry that I am not the person they think I am.

Not that they clicked on the wrong person or anything... but that I am not who they think I am. I worry that they want to be friends with the idea of me... but not the true me.

If you casually know me from someplace you likely know I have two kids with special needs, its not hard to figure that much out, I have my kids with me 99% of the time and the rest of the time I am talking about them lol. You might have heard of what I am doing with this charity or that volunteer opportunity... you likely know that because I have asked you to help or donate in some way even if I barely know you.

But I try not to hide the real me in a digital world. That doesn't mean that I talk about every issue or disagreement I have with someone, there have been rough seasons in my life with different people in my life that you will never read about online, I try not to throw my dirty laundry all over the internet... however the trueness of me I try to show.

I talk about the things that weigh on my heart. I talk about hard things. I talk about things I am passionate about. I talk about things I am learning about.

I let a lot about me out into the world...

And that is scary!

And I often feel like I don't fit the mold that people expect when they just casually know know me.

I was listening to a podcast yesterday from Annie F Downs and she was talking about how growing up she always felt like she was a lot and so she ended up in a job where she is a public speaker and she is a lot but she chooses to be a lot because then people can't say that about her (listen to the Myles Ashcroft and John Crist episodes if you want to get more of what she is getting at) but I understand what it is like for people to say you were a lot as a child... I was... but as an adult that turned into me trying to not be a lot... trying to hide that part of me and fit into the mold. Trying to make myself more quite and to not feel as passionately about things as I do. While I think learning to think before speaking and being collected in how you talk to others so you can best present your ideas is wise, I think at times I have taken it to mean that I just need to be silent on things that matter to me. I am always going to be passionate about many things that fit into the social justice category.

I also often feel like I don't fit into the mold of the American evangelical world. I don't fit into the quite republican church girl and often I feel like I don't want people to know that about me. Heck I just the term social justice and in some Evangelical circles I might has well just sworn at you because that term is so hated. Its not that I am not a Christian, my faith has grown the older I have gotten and I feel like it is a lot less about Sunday School answers and memorization now and more about a relationship and learning about the character of God and having a relationship with Him instead of just knowing about him... I don't want to just be God's fan. But in a world where a lot of Christian leaders have said in the past couple of years that if you don't look like the Christian mold (esp in your politics) then you don't have a place here, I have really struggled and don't want people to know the real messy me.

But I think we want people to know us, more then just the "how are you" "fine" relationship. I was joking recently with Brent that there was a few people that it probably would have been better if my view of them was still pre facebook when all I knew about them was that we knew each other from a common place and very basic info (city they lived, their immediate family, ect.) because it was hard for me to see their racist or sexist or mean posts, that it was easier when no none really actually had conversations with each other past the weather... but I don't think that is how we were designed. I think we were meant to have other people know us more then our views of the rain. And sometimes that means learning about the yucky parts of someone but how can we help each other grow if we only talk about the rain? It might feel more comfortable, but it does no one any service.

I feel like right now we are in a season of waiting and rest. Our May has been abnormally calm. We have had very few things planned and life has been at a slower pace... it feels a little weird. The summer for us is going to be CRAZY! Lydia is having an EGD, both girls are having some heart testing, lots of doctors and hopefully lots of fun things too. But for us right now we have been in a season of rest. I have taken this season to try to grow. I have read multiple books and have listened to a lot of podcasts. I have read the Goff trilogy (Love Does, Love Lives Here and Everybody Always), started Unexpected by Christine Caine and just downloaded the preview to Grateful by Diana Butler Bass... all books to help fill you up but in a way that isn't just about you growing but about how you can love others. But in this season I have also learned so much about me and as I listened to that podcast yesterday it hit me why I get so scared when people want to be my facebook friend.

A little key.... if you want to be my facebook friend... make it known that you are a regular reader of my blog because if you stick around here where I am rather raw at times and you haven't gone running then you could handle facebook posts of quotes about loving people and about how parts of the US healthcare system suck.

I get scared sometimes that if people know the real me that I will turn people away from Christ or make a bad name for people with disabilities and their journey. I worry if I am raw that people will get some wrong ideas about loving people with disabilities. I know, that is probably me thinking too much of myself. 

So there is some more raw me.

I think we all want to be known... but that is very scary!

Now to decide if I'm breaking through this fear...

What if...

What if a diagnosis doesn't matter?

That question hit me like a ton of bricks tonight. I am reading "Love Lives Here" right now as well and "Love Does" and with the yucky weather today I curled up and flipped between the two books.

I read the line in "Love Lives Here" that said "We often find our safest and most beautiful places where lava once flowed." and I paused... and that question hit.

The topic for next month's Complex Child is on rare and undiagnosed (its not a secret its on their facebook page). When the author call when out I thought... hmmm, I should think about that... and then reminders came and facebook posts and each time I thought about it but did nothing. Today at lunch my mom asked if I was writing for next month's edition and I joked that its a topic I know so much about but couldn't think of something to write. This is odd for me, as often I have to do my own sorting though stuff before I submit things because I have too many ideas and need to narrow things down first... but for some reason I was stuck.

The question "what if a diagnosis doesn't matter" is a jarring question when you are in the mist of applying to NIH, and working with several doctors on figuring out a diagnosis...

When a lot of the last 5 years have been spent actively searching!

I remember this time 5 years ago. Jilli had an NJ tube. It was causing ear infections. She had croup. I knew in my heart we needed the GJ tube surgery but I was struggling with the idea of them cutting my baby open without them knowing why. I spent hours upon hours searching for the why. I still read a lot about stuff.... thats wise... however its not wise to let it consume.

There have been parts of this journey where all eyes were on finding a diagnosis. Where prayers and late nights were spent around that.

Today on my way home from church I listened to the Annie F Downs podcast with Jon Crist which you would think would be a super funny podcast and it was but it was also super deep and SO good and one of the things we often do in life is live for the next thing... once I get a boyfriend...once I'm engaged... once I'm married... once I have kids... we are always living for the next thing and putting all of our hopes and dreams in that... but thats not where our hopes should lye because while all of those are great things they will never fill you up. I use to a live for the next event person, but I have noticed in the last couple of years that I am less focused on next whatever and having a reason to be excited for today. (funny thing... for a girl who use to put her hopes in the next thing... our wedding anniversary is this week... and I totally forgot until my mom brought it up at lunch today... lol! Its not that I don't love my husband, I do, very much! however the next big event isn't what I am focused on... however I should plan something nice for him... we have been doing this life thing together for a while now lol)

So I just sat here after that question hit... not sure what to think.

I have always thought that someday we would have a diagnosis but that isn't promised. It might still be in the future.

So I sat here for a minute looking at nothing... what do you do with that question. I have been wrestling versions of that question for a while but for some reason today it felt like a ton of bricks.

What steps do you take in light of that question?

And the answer I came to... we do the same things we are currently doing. We believe most of our paperwork is at NIH at this point however there is still a box that I can't get NIH to tell me if they have and the post office says it is sitting in a distribution center. We are in the 8 week waiting period... and then a letter will come and it will say one way or another. There will be no arguing with the letter, it either says we are going to NIH or not. During this time there is nothing I can do to speed it along or help our chances...

But what I can do is prepare my heart. I can prepare for the letter... either way that letter is going to be intense emotionally. If we go there it will likely be very emotional.

I sat here as I pondered this question and thought "do we go still if we are invited" and I think yes, we still go even if it is not for us. Even if it doesn't help us at all, maybe it will help someone else. Maybe we get to help be a piece in someone's journey... someone we might never meet or know about but God is working pieces together. Maybe it will help us on our journey... I'm not ruling that out.

But God is preparing my mind and my heart for the next steps of this journey. I can't even begin to explain how different I feel about a diagnosis then I did 5 years ago. Sure I still think it might be helpful however my hat doesn't rest on it... and neither does my heart. I use to feel like I needed that name to prove to doctors that something really was going on, but I don't feel that anymore (if you spend time with either girl you know without much guessing that something medical is going on... I often joke that we are a walking billboard for disabilities lol).

God has this either way.

God has always had this.

God isn't limited by medicine or labels.

A diagnosis or lack of one doesn't surprise Him.

We don't need to justify things to Him.

Bob Goff often says that Jesus doesn't need a lawyer... but I think we also don't need to try to be our own attorney trying to justify ourselves to Him.

So what if a diagnosis doesn't matter... I guess in the grand scheme of creation a diagnosis isn't a turning point... so we keep focusing on eyes on the one who is.

    

Who I want to be...part of the story

An Amanda history lesson... some of you are newer to our story and I didn't just land as a late 20s mom with two kids... there is a lot that has shaped who I am.

High school me was involved in everything. Honestly thinking of high school year makes me tired! I ran at 1000mph and wanted a hand in everything and wanted to be of value in every situation.

By the time I went away to college I was worn out! I spent the summer between college and high school as a nanny and it was a slower pace at life then I had been living for years! Once I got to my second college (I did freshman year at a college near home to save money) I was ready for rest. I was more calculated in what I was involved in. I started to realize that I wanted depth. One of my good friends and I joke that neither of us excel at small talk.

I have always been a take charge person. Typically the head of whatever I was doing. And at times that was good, its a place I feel comfortable, there have been other times that I have been leading in positions where in hindsight a little more life experience could have helped some of the bumps.

This season in life has me at a different position and to be honest at times I have mourned the involved in everything me. There is an entire group of kids that I taught them in Sunday School and really invested in those kids and now I am someone who has been asked more then once if I was new at our church since having the girls... that stings because I had a place of influence, a place of value, and a place I could show for the things I was doing.

I always wanted to be the head of something... leading...

However as I am getting older I am seeing the beauty in being a part of the story.

Its not that I don't see value in leadership... I think leaders are still very important. I think it is very important who we let lead, especially if we put the label Christian on whatever is occurring. I am more interested in leaders who are worried about others then their glory... the ones that see the value in love. But at the same time sometimes as a society I think we only look to the leaders but forget about all the other people it takes to make the world work.

But I am becoming more comfortable in my skin of just being me today. And tomorrow taking the next step. I don't have some great plan or agenda and my dreams are less focused on specific things occurring and more about the heart...
-do the people around me know they are loved?
-am I actively helping the least of these with the eyes of love?
-am I treating people with dignity... even people who disagree with me?
-am I invested in people that have been placed in my life?

Being able to say that I am working on those things are my goals now.

And if somewhere along the way I end up doing those things and end up leading others to do the same thing then great... but thats not the goal.

Sure sometime I read things and wish I could be a part of all good things, but I've been called to the good things that I am doing and helping where I can, but I can always be looking for ways to love people, but that doesn't mean my name has to be listed as the head of a non for profit.


For now I am thankful that I am able to take calls from friends when they have feeding pump questions, or are worried about life. I am thankful I can play with baby dolls with Lydia. I am thankful I can teach Jilli how to think about math. I am thankful I have time to talk to Brent about life. Sometimes having time for those things means having less of a laid out plan for the next many year and more about looking at today and looking to see what love can look like today.

I want to be who Jesus called me to be today

Lydia playing with her dolls today

clicking

If you knew Jilli well when she was little she would click her tongue frequently. But then for some reason she would loose that skill, we didn't understand her crashes back then, she would just loose skills randomly but when a baby looses skills its less drastic then when a 5 year old looses skills. We were always confused by the backsides but one of the illusive skills we all joked about was Jilli's clicking. It became infamous with our friends. When she would start doing it again after stopping for a while she would get so excited and would try to teach us how to do it too and when we made the sound she would clap for us.

Tonight out of no where she remembered how she use to click all the time and got all excited and taught Lydia. It was so cute! Lydia was so excited to learn something from her big sister! It made me laugh and think of little Jilli, different thing and people in our life during her clicking days, and all the ups and downs in the road.

Friday-Tuesday Brent probably asked me 100 times if I was ok. If you saw me in public I was faking a smile. But I didn't know why I felt so off... I don't necessarily have a word for my emotions but the people closest to me could read me and knew something wasn't right.

Jilli has been hanging on the edge of the cliff since April 28. She will have good times, where she is happy and has energy and interacting with life... but her vitals signs have not been great, I have found her curled up resting more then normal, therapy has been harder, she has struggled with behavior in ways she does when her body doesn't feel good... we have all been gripped to the edge for days on end.

Tuesday night I had a meeting and since non of my normal podcasts were updating in my phone I decided to listen to another episode of Fun Therapy... I am not sure why they call it fun... I have listened to 2 episodes and both have made me cry and I am not even the one doing therapy!!! I decided I would see if anyone I knew was on and Maria Goff was on an older episode and I had just finished her husband's book Everybody, Always (stop and go buy it... now) and he talks about her in the book so I figured it might me interesting listening to her.

As the episode went on and she talks about some of the darkness in her past that we share some similar cobwebs in she started talking about the sympathetic nervousness... now I have a degree in early childhood education, I have taken many psychology classes, I know all about flight or fight but as she was talking about it I understood why I felt so yucky...

My body had been in fight for days but for nothing to actually fight. She was on the edge but had not fallen off and on the edge there is nothing we can do but wait. We keep doing what we normally do because our team advises that is best and take breaks when she needs and we do things like the butterfly harness on her wheelchair but we keep chugging all... but I just kept waiting for the fall... my body had gone into fight before there was any need for hospital advocating and working hard to get her back to baseline. My body was worn out!

But naming it was so helpful! I got home and Brent and I talked about the podcast and how I had been feeling. We had a good conversation.

By the next morning I felt different. I felt less on edge. I felt like I was calmer when talking. I felt the joy within me that I normally feel. Brent said I looked like me again.

So tonight when Jilli started clicking I got sentimental and laughed a little. I am not sure why her clicking is a sign of normal at our house but it is lol!



We have also had a good few days! Yesterday the girls had therapy and Jaime, Jason and the boys came over. In Lydia's world Emerson and Oliver rank very high on her people order and her face lit up having them here to play with. This morning the girls and I ran to the Matel Store as the one by us is closing and prices have gotten really good! We went there with one main thing in mind... a Smart Cycle! We saw it the last time we were there and Jilli really wanted it but it was more then I could rationalize spending without Brent and I talking and planning but they marked it down more! I talked with Jilli's therapists and they thought that it would be very helpful for Jilli to work on her muscles inside when it is hot or cold out. I am very thankful for Brent's parents for getting it for her and she is very excited! She went on it for a while this afternoon and had so much fun! She battles muscle atrophy so helpfully this is something that will help with that. We then had to run to Target and get more allergy meds for the girls as it is spring and Lydia's nose would be happy to remind you of that so they upped her med for now to help her through but that meant we ran out of meds... thankfully we can buy extra Zyrtec! Yes I have seen all the Mickey stuff at Target... yes it is very hard to be wise lol but I did let Jilli get the Mickey nail polish and I painted her nails. Brent is at church tonight working on stuff and the girls and I are hanging out. Lydia is doing a puzzle which is one of her favorite toys... she has also been playing with her dolls all day... the girl and her dolls!

In health world there isn't too much going on... I am trying really hard to be patient about NIH but there isn't much I can do about that... we just have to wait for the letter and whatever the letter says we have to be ok with. Insurance denied the battery for Jilli's portable oxygen but we figured they would and we have a different funding source from a waver but we needed the denial first so having the denial is actually a step forward. VNA sent a pre auth for Jilli's IV pole... yup now we are playing the game with two kids... I called a few days ago and they are not calling me back. We have had this IV pole for 5 years... it was paid off in one payment... no one needs to pay them anything for a pole! I found the IRS paperwork I had put in a safe place and then forgot the safe place but I got the name change stuff filled out because for respite for Jilli the IRS spelled her name wrong... fun! But at least that is done!

Jilli on the Smart Cycle

The kiddos!

Book Fair!

Last night Holly, my mom, the girls and I attended a book fair warehouse sale with amazing prices that is open to teachers and homeschool parents. I use to go yearly when I taught in a school but have not gone in a few years but now that we are homeschooling Jilli we figured it was a good time to go!

We found some amazing books and I figured I would share some of my favorites because I know we are always looking at good children's books and I know several of my friends are as well!

This is a easy reader in graphic novel format that is really funny. Jilli has a goal of reading one of the Super Girl High graphic novels at Target so this book is a good step at teaching how to read graphic novels.

This is a good book with a message of liking yourself no matter what you look like

We read this book together this morning and I LOVE it. It talks about following your dreams and doing things that make you, you!

This is a cute book that talks about how you should always work to make good choices but if you mess up that your parents and God still love you

We have a lot of Boo Boos in our house and this book is really cute about Boo Boos and how its ok

Lydia has become very into Peppa lately and we are working on colors because she calls all of her colors by the names of the Sesame Street character that is that character (elmo= red, cookie monster=blue)

This is a chapter graphic novel that I will read to Jilli but it has a character in it who uses oxygen and a feeding pump so she has been asking for this book for a while

Lydia loves anything Elmo and a book about processing through boo-boos is always a hit at our house

I love pout-pout fish so Jilli was excited to find an easy reader Pout Pout

This years American Girl of the year dreams about space and so does Jilli so this is a good chapter book for Brent to read to her

Lydia chose this book.

This books is SO cool! It talks about the brave women in the Bible and has the Story of Lydia (who my Lydia is named after)

We have the Peppa set like this and really enjoy it and Jilli likes Star Wars

This is a Jilli goal book. While it might say its a number 1 it is still a little tricky

Books for Jilli to read to Brent

Jilli is starting to work on telling time and she loves Peppa so we figured this was a win win book

This is for my bed protesting Lydia

A book about compromising and playing together!

A book about kindness AND many of the pictures includes a child who uses a wheelchair which is a big deal at our house

A book of gardening science experiments

We use the Skip Hop backpacks to hold the girls feeding pumps so they thought it was so cool to have a book all about their backpacks

I feel like many of the leveled books are rather arbitrary, however this book I would label as a true level 1 which made Jilli excited!