A night out (Switchfoot and Lifehouse at Ravinia)

This past week I was able to take a little me time. This isn't something I do often... getting to shave my legs is my normal extent of me time! I love my girls and I love being with them and honestly I would rather be with them then just about anyone else most of the time. I like having them around. Lydia is at the stage of getting into everything (I mean everything... climbing the gate, the couch, getting out of the straps in the cart, disconnecting her feeding tube, turning off her feeding pump...) and loves to shove anything she can find in her mouth which makes me feel like a crazy nut as I am finger swiping something tiny out of her mouth at Target. I never thought I would be the mom who would be freaking out over their child getting a little dirt in their mouth but with the girl's aspiration issues I have to be that mom or risk them getting really sick. So I have been drained lately.

Brent and I never ended up going out for our anniversary... life was just too busy in May. So last Friday night we were able to go out. We had a nice sit down dinner were we were able to just talk. It was nice.

On Tuesday my dad and I went to our first time at Ravinia. Music has always been a large part of my life (you can read about that more here) and my dad has been a large influence of that. My parents house is rarely quiet because there is almost always music playing. Growing up we went to a lot of concerts but since having the girls that has changed but when I saw that Switchfoot and Lifehouse were coming to Ravinia my dad and I decided we would figure out how to make this work. My dad took Brent and I and a friend to see Lifehouse in concert when Brent and I had been dating for 4 months (so a long time ago lol) and it was not at the best venue but we got cheep tickets (the saddest part of that night is that Mat Kearney was playing in the bar of the same venue that night but I was not 21 so I could not get in...) and I have seen Switchfoot in concert many times over the years (we figured we have been seeing them in concert since 2003ish). As my dad had the Beatles, my brands are Swithcfoot (and Jon Foreman solo), Lifehouse and Mat Kearney so to be able to see Switchfoot and Lifehouse together was very exciting to me.

Dad and I had a great time. Ravinia is beautiful. The sound is great. Switchfoot was first and they put on an amazing show as always. Jon just has a way of connecting with the crowd. Jon and I also see a lot of things in life very similarly. Our views of the church are very similar. Our views on loving others are similar. Our views of the gospel is very similar. And he understands how to remind a crowd what we are here for and that he cares about other no matter if they look like him, vote like him, have the same religion as him... that we are all brother and sisters. Honestly he is a person I would love to just sit down over coffee and talk with, however the chances of that are next to none so I'll stick to listening to his songs and digging into the lyrics. I like that their songs have depth... so many Christian songs don't, they spell everything out for you or are so repetitive (I honestly don't listen to Christian radio anymore and mainly only listen to the Jon Foreman Pandora station), but in their music there is hurt and joy and depth. At one point he had the entire place linked arm and arm singing together... not in a cheesy way but in a we are all in this together way.
Lifehouse came on and they did a great show. They played my favorites off of the new CD (they played Flight which in one of Jilli's favorite songs as it talks about no more crying, no more hurting... that CD came out the week Brent's grandma died and there was a lot of crying and hurting here and as a 2yr old who was not use to that in her world that song really stuck with her) but mainly they did their older stuff. The stuff of my high school years. It was great.
After the show we headed out towards the booth where the charity that is touring with Switchfoot was located. Switchfoot is very big into giving back and loving one another and Ravinia would not let them set up their charity booth inside of the gates of Ravinia so they put the booth out closer to the train. Well after the show the members of Switchfoot went out by the booth to help get people over there and to share about their cause. A couple of members signed the shirt I bought (it says "I want to thrive not just survive") and then Jon Foreman came out with an acoustic guitar and harmonica and played songs to a really small group of people most of whom knew all the words and sang along. It was beautiful. Jon Foreman is my favorite solo artist. It was amazing.
By the time we got back it was around midnight. My throat still hurts two days later after signing for hours but it was worth it. It was a great night with my dad doing something we both love. Its not something I will soon forget and something I am so grateful for.

But now it is time to get back to real life here. Jilli is playing playmobil at the table (she LOVES Playmobil and I think that is what we are going to ask people to do for her for her birthday and Christmas because it is good quality and then it all goes together and I see more value in that then a ton of random toys) and Lydia is seeing what she can get into. I had to put her in her high chair to finish this post because she was climbing the couch and figured out how to open a water bottle and dump it. So now its time to dive back in!

Bridge

The picture above is of the pedestrian bridge that connects Ronald McDonald House and CHW. This week again I walked this bridge multiple times and got to thinking of my many crossings of this bridge over the last year.
Our first times visiting RMH was when we were visiting Caroline and her family there. They would tell us about all the things RMH offered and how it could help us however we worried about taking a spot away from someone who needed it more and we didn't understand how helpful it could be to us on our journey. However last September the girls were both scheduled for surgery and Lydia would need to stay in the hospital after while Jilli would be discharged and Jilli could not spend the night in Lydia's hospital room so we decided we would give RMH a try.
Since then we have spent at least one night there each month. RMH has become our second home. A place Jilli cries every time we check out and a place she counts down the days until we go back. A place were we have connected with so many other medical families and where the staff and volunteers have become our cheerleaders and support.
We walk the bridge between RMH and CHW often. I joke that it is my work out plan (the picture doesn't do justice to the different inclines the bridge has).
I have cried as I have walked the bridge in frustration of genetics appointments or how sick one of the girls were. I have celebrated walking the bridge as we are discharged after several days in the hospital. I have battled with medical equipment as I have walked the bridge attempting to get it to work properly. I have ran the bridge taking one of my kids to the ER. I have joked and laughed with friends and have some funny stories going over the bridge. I have also walked the bridge heading to the hospital to support friends who are in the hospital with their kiddo. I have been filled with anxiety walking the bridge as I wheel my kids across ready to hand them over to a surgeon.
I have walked the bridge so many times over this last year... I have felt so many different emotions walking the bridge but one I feel the most as I walk across it is grateful. Grateful for our medical team and all day do. Grateful for RMH and the amazing place that it is with the awesome staff, volunteers and families. And grateful for the bridge that safely connects those two places that mean a lot to us. 

Door County 2017

This weekend we went up to Door County to spend the weekend with Caroline's family. It was a great relaxing weekend. We went to the state park and did a kids program about wolves and the kids got to listen to a story and do a craft project. We went for a walk in the woods and went swimming at the pool. Sunday we stopped at the winery and meandered our way back home. It was a great weekend!

In other life news, we are back at RMH. This week we have audiology, ENT and eye. I also got a call yesterday from the wheelchair company. They said they were waiting to send the order in until they had color confirmation from us... I just about lost it but kept myself together. We have told them at least three times that this wheelchair should be pink with purple accents... just order the chair!!!!! So now it will be at least two weeks from this point because they still had not ordered the chair yet. I am trying to be kind but man this is getting hard not to yell when they call.

Jilli has started helping sometimes to get her syringes together to do meds

These two!

Heart

My hubby and I just finished watching the latest SNL weekend update, he looked at me as Tina Fay finished and commented that it was the first time this week he saw my real smile. I was not smiling because it was a happy light heated show, but my mind for just a moment came out of the dark fog of this week.

I'm going to call it like it is, this week has been hard on my heart. I am and always will be a social justice person. The events of this weekend and what has happened since has eaten at me.

I was never much of a late night show watching person. First of all I like to sleep and am often to sleep before they start. I am also a person who likes a good joke but doesn't go looking for one, I am more of a conversation person. I don't feel the need to laugh instead I look to find joy in just life, some of the funniest things I have laughed about have been done by kids and I have been blessed for many years to spend my day surrounded by them. But in January I started to watch the openings of a few different late night shows, purely because I needed to find something funny in all of this.

Remember I an not a party line voter, I vote based on person. I voted republican in the primary, but not in the end because there is nothing about Trump that aligns with my values. I have voted for Paul Ryan in the past (never again) and plenty of other Republicans. I come down harsh on that side often because they really like the Christian card and I have issues with that but I know that just because a person is a part of a party that does not mean that the party defines them as a person.

This week I have watched the opening to most of the late night shows daily. Why? Because this week has hit my heart in a place of hurt that is so deep I was looking for any light about it.

A woman was killed on American soil for marching against a group of people that is openly racist and is just fine with using actions based on that evil. History tells us this and this weekend was a horrible reminder of that.

There is no part of my heart that can be ok with this. There is no part of my heart that is not wrestling with this. I have been angry this week and my heart broken.

My heart is saddened by a nation that is busy making excuses.

Yes I have seen the photos, yes I am aware that there were some people who were not apart of the torch chanting group that showed up with ill intentions. Sadly all to often there are people who are always looking to make poor choices. But that does not negate what the racist group said and did and what is in their hearts.  That does not negate the people who peacefully protested the hate group, the people who saw a problem and said they were going to stand up and say no, and not with violence.

America it is time to get a grip.

I have seen way to many people I know, not just internet trolls, defend what happened this weekend, and no I don't personally know anyone who I know that verbally says they support the alt right but I know so many people that came to their defense this week from various points of view. There is no defending them. And if your message has been unclear this week you are the person in control of your words.

And on that tone, I put it as my status today but I fully believe this... no president, there is no upstanding people who joins an alt right march, maybe they could claim that before the joined into the mob but once they willingly joined that mob they could not claim to have clean hands about the situation. That is not something you accidentally join. You don't accidentally chant racist things. And if for some random reason you ended up in that mob and upstanding person would have gotten the crap out of joining it.

And lets also stop whitewashing history... the civil war started because states wanted to have rights about if they could have slaves... if you say the war was only about states rights you are whitewashing history far worse then what you are clamming is happening with monuments coming down.  I very carefully read a lot of information this weekend while at the civil war museum. My preschooler who had never heard about slavery before understood withing a few minutes of being there that it is wrong and she only got the preschool level version of the history lesson.

This also is not the media's fault. As someone who has taken several media classes I will admit the shortcomings of the media (on both sides) about many things, but I am sorry you can't blame the media for people being angry about other people marching down the streets chanting racists things. While I say to not blindly trust any source, we fact check fact checks at our house, if you have become admit that the current president is the only person with wisdom and the press is out to get him then please look at some other sources for a while. If you are blaming this weekend on the media then you are saying that what the alt right did is not bad, you are shifting blame.

I have stated before I went to a mainly white elementary school and while learning about America's history I thought we were past all of this and while that was a child idea I hope that maybe when my kids are my age they can look at the world around them and not have people chanting racist things in the streets. I hope we are a country that finally comes together because ever since white men landed here we have been messing so much up and have hurt so many people and I hope that someday we are closer to treating all people better then we are right now because I have felt like as this week has gone on the more people have backslid. 

Because right now as a mom of two kids who are in a group of people who are considered less then by this aweful hate group, I have had fears go through my head that I can't write. And while I am sure in most cases they are rather irrational, there is also a family who this time last week didn't think their family member was going to be plowed down and killed by a member of the alt right.

But I am trying to channel all of this to help my vision of us getting back on the track of loving others. We made it a point to talk to our kids about loving others this week. We sat down and read books about diversity together. Because this starts in our home. But now we are trying to figure out how to continue to branch it out past there. We are already involved with Tubie Friends, supporting our local children's hospital and Ronald McDonald House, building a playground in our community for all people but we are always look at who else can we love. I don't currently teach in a diverse community like I have in the past so I am not involved that way, but I am sure there is more we can do, because my heart can't keep at this rate of breaking that is has been for the past several months, and this is only going to get better if people continue to stand up for what is right and love others.

Current events

I did an update about the girls HERE but I also felt like I couldn't sit silent about our world right now.

When I was 3 my grandpa bought my mom a book about how to raise a strong willed child. When I was in high school the only flight I got in was when someone started chucking books at me because I said that the sex trade is wrong and still very much happening today (I didn't to anything back but the whole situation became a mass). But mixed with that person is also a people pleaser who doesn't like to upset other people.

But this is a time where saying the right thing is not hard...

A lot of things going on around this country are just plain WRONG.

Racism is wrong

Marching through the streets with tiki torches chanting racist things is wrong

Running anyone over with your car is wrong

Claiming your ok with what happened this weekend because you like confederate statues is wrong

Politicians not standing up right away and saying white supremacists are evil is wrong

Politicians throwing fits on social media is wrong

Living a life in such a way that causes others to be unsure if you are part of a hate group is wrong

Our president tweeting crazy or mean things is wrong  


Lets remember a few things about this horrible group of people, they don't just dislike people who are not white, they dislike anyone who is not white male in perfect health. Newflash, they hate kids like mine too. Many many people with disabilities were killed during the holocaust. They have already turned on the woman killed at the event because she was over 30 and not married and without kids. If you don't fit into their perfect little mold they hate you and that hate too often turns into horrible actions...

And guess what, you either have two choices... you either denounce them and say you are not a part of them and actively stand up and and use actions of love towards the people they  hate... or you are with them... there is no inbetween. There are few black and white things in this world but this is one of them. And if you choose not to speak you are with them. Your lack of telling them what they are doing is wrong just emboldens them. If you are a person who posts things daily on facebook and choose to post nothing about this but have posted things about every terror attach done by people from the middle east, your silence is deafening and speaks volumes. If you decided to post things this weekend making excuses for them or some reason saying that because you are a republican you can't speak out against it because they are on "your side" then your words spoke loud and clear. You don't have to be marching in the streets holding torches to empower them. If you are conservative you need to be standing up and saying that this group does not represent limited government and spending and if this is the direction the party is headed then maybe it is time to make a new party that actually represents conservatism. Because this is not the party of Lincoln...

And lets not forget that many of those people marching are doing it in the name of Christianity and that makes it even more important for the church to stand up and say this is wrong because guess what, there may be people in your church that aline with that group as well and if your church is not actively saying no then you are helping it to continue. What they are saying is not Biblical. I would much rather have no one say Merry Christmas to me in a store again then to sit quietly about this, this is a much bigger deal....

And on the topic of Merry Christmas in stores... I am about to make some people mad... I don't give a crap if any store clerk tells me Merry Christmas... my celebration of my faith has nothing to do with a retail employee. And honestly I think this whole situation is messed up, we were a country founded on religious freedoms... because our founding fathers didn't want anyone telling anyone else how they had to practice their religion... I don't want someone telling me that I have to participate in every holiday from every people group because that is not freedom of religion just as well as I don't think we should be expecting anyone who is not Christian to participate in Christian holidays. Because I don't want those tables turned. Lets focus more on loving others and leading by love and showing people why we follow God instead of worrying about being so offended when non Christians don't do Christian things. Just like I don't feel anyone should be forced to pray in public school. I was a public school teacher, I prayed so many times in my head, not a problem but I couldn't ask my students to join and you know what, that is ok because we would have people burning down schools if a teacher asked their students to pray to Allah with them... see we don't like it when the tables are turned. If we are a nation of religious freedom then we need to be free to all and Christians need to do the hard work of showing others why what we believe is different, stop asking the government to try to do that. For some strange reason it seams to be the "side" that claims they want limited government that like to use Christianity at every opportunity. Enough! Stop expecting non Christians to act like Christians, they were not called to do that, you as a Christian were. You were also not called to play the victim... how many times was Paul thrown in prison and he didn't act like the victim. Learn about what is happening in India right now and that reminds me how much I don't want the government to have any say in religion. Christians lets move on to bigger and better things, things that really change people's hearts and stop all this show everytime a news story comes on about all of this the song "Instead of a Show" by Jon Foreman plays in my head.

Also I was in a few conversations with people this weekend that claimed what happened this weekend was the same as the woman's day march or the Black Live Matter movement and you need to stop. First, that tried to dumb down what happened this weekend and try to point the finger elsewhere and that is not ok. Next I know many woman who marched in the womans day march and each of them have their own reason. I know many Christian women who marched that day for upstanding things we should all be able to get behind (disability rights, wage gap, education, moral integrity, more women in leadership...) so before you go and tell me again that is was thousands of women marching to murder babies please talk to people who were there are get off of far right winged news media. I know that some people involved said they were pro choice however there were thousands that marched that day and it is disrespectful to them to lump them all together. There however is no respectable reason for someone to march in a white supremacist march. Now I have struggled with the BLM movement at times, I really struggled with what happened in Milwaukee after having student taught in that area. That area has a different place in my heart because I know the kids and parents. I only understood that area though has much as a white girl who drove into a fenced parking lot in the morning and drove back out of the area when I was done with work to my modern apartment in an area with a low crime rate. But it hurt me to see the violence that went on there, however I see and understand why the BLM movement started and do not lump everyone involved with the actions of a few people to destroy and burn things. Many people in the BLM movement had real concerns and are working to help others. They were marching for racial issues in our country that I as a white girl will never fully understand. They also were not out looking to kill everyone who did not look like them.  Do I wish that none of those protests became violent, of course but I also understand the systematic things that have happened over generations in this country that led up to that, although that is not an excuse to become violent. You can not group these other things with the group of tiki torch screaming raciest people this weekend. I am so sick of this administration and their way of saying "oh yea here is an issue but look over there." Its old and it never solves anything and it is teaching a ton of Americans to do the same thing.While we have freedom of speech in this country that says you can say what you want but it doesn't say that you wont be held responsible for what you say. 

So yes, I have used some strong words here. Yes I feel passionately about all of these things. Yup I still feel just as uncomfortable about making people mad but sometimes you need to stand up for what is right. Romans 12:9 in the Amplified version rang so loudly to me yesterday and for me it is a "life verse." Love others when it is hard. Love others when you are tired. Love others when others don't agree. But be willing to say when something is wrong.

PS, if you want to know how I feel the president handled this all go watch this Seth Meyers clip because I feel he said a lot of what I am feeling

Girls update

I am going to write two blog ports today... one about medical updates and info on the girls (this post) and another one about current events (you can click HERE to see that post)... I just can't sit quietly, it might not look like it to everyone else but I restrain myself a lot on posting political things but today I can't sit quite but that is for another post.


So lets go back a week.

Weekend: Last week Jilli and Caroline had zoo class together. They had a great time. On Sunday I helped Holly find a couch for their living room.

Monday: We decided it was best to not do PT on Monday to not stress Jilli's body before surgery. The girls and I headed out late morning to run a few errands and then head to RMH. In the afternoon Nate and Kirk came over to see us and the girls and have dinner with us. My parents stopped by after dinner to see us and we all went to music therapy. During music Jilli started to look very sleepy so we said goodbye to our guests and gave the girls baths and then headed to bed. Jilli always has a hard time falling asleep our first night at RMH but we got her to sleep around 11:30.

Tuesday: Lydia's pump hated us during the night and Lydia felt similarly. We got very little sleep. Around 5:30 I got up to do Jilli's morning meds since her pump needed to be turned off at 6:30 and she needed all of her meds first and for the pump to run long enough after giving them to make sure they came out the j part in her body. Jilli woke up while I was do that and very excited for the day. She was telling us that her monkey was nervous but that she was happy to hear better. She put on her super hero cape and her Children's shirt and was ready to go to the hospital. We headed to the cafeteria first to get some breakfast... Jilli kept asking if she could go to surgery yet. We headed up to surgery and did the check in stuff. We gave her a choice if she wanted "sleepy medicine" to help her go back and she said yes. Jilli is so funny on that stuff! We always have her laying down when we give it to her and then for some reason once it kicks in she always sits straight up and then falls over and I end up having to hold her because she starts flopping all over the place and saying things that don't make any sense. They then took her back for the ear tube part first. I headed to the waiting room and Brent and Lydia ran back over to RMH to get Jilli's shoes and braces because somehow she got out of RMH without any on!? While the ENT was in doing her part the GI dr came in and talked to me. We actually talked more about Lydia then Jilli since she is having more issues with GI stuff right now. Then the GI headed back for her part and then ENT came to talk to me. She said the ear tubes went in well and that there was no infection at the moment so she didn't need to have the drops put in! then Brent and Lydia rejoined me. After a little while they came out to get me to see Jilli. They said it was a sudden wake up for her and when I walked into the room she was screaming and acting like she was about to vomit which was strange for her coming out of surgery. She typically complains about pain after surgery but the retching was the worst I have ever seen from her. The nurse gave me report and she said the j was clamped and the g was opened to drain. Since she said that my mind went to seeing what other things we could do to make Jilli more comfortable. Jilli doesn't like her oxygen line run in front, she likes it behind her head so I moved that. I put her pillow case on top of the pillow because that is a big deal to her but she just kept yelling and retching. The GI dr came in to talk to me and it was hard to hear each other over the screaming. She did say that Jilli's stomach looks better then it has in the past so what we are doing is working. Her hernia looks better and the stomach lining looks happy. This was all great to hear. This reminds us that her being NPO and the meds she is on right now is the correct thing for her. The dr headed out and then I went to move Jilli and noticed the problem... the g was clamped and the j was open to drain. This is a BIG problem! The j should NEVER be open to drain and she was retching so bad because she was refluxing the blood from the biopsy they took. I corrected it and then slowly she calmed down. They moved her her the next recovery room and Brent and Lydia joined us. She was still not happy but realized that the state fair was at the hospital that afternoon and she kept saying she wanted to go to that. Eventually we got her calmed down enough to fall asleep for a bit. Brent and Lydia ran down to get us more coffee. In the early afternoon Jilli woke up and was handling j feeds ok so they agreed to discharge her before the State Fair started. We went down to the girl shop to get her a mylar balloon and grabbed some lunch. At 2pm the State Fair at the hospital started. Nate and Kirk joined us and Jilli liked the games and that her music therapist was giving temporary tattoos. She was tired but so excited. Lydia hated the clown! We ran into Jilli's rehab NP who prescribed the wheelchair and did the peer to peer with our insurance company and talked about how crazy this all has been. She said the guy from our insurance company was rude and that there was no budging. She said she didn't understand why this was such and issue to get it approve and that to her Jilli needing a wheelchair is an open and shut case and should not be taking this long.  After the fair we headed back to our room and we all rested. We went up for dinner and then came back to the room and watched a movie as a family and then called it an early night.

Wednesday: Our team had all agreed that staying at RMH for 24hr after surgery was the best plan for Jilli. Wednesday morning Jilli work up and started having pulse ox crashes that would last several minutes while she was sitting still on oxygen. This is not typical for Jilli (she normally crashes when walking) and after several of these I called our team to ask what they wanted us to do. Lydia was also all over the place and wanted to get into everything. Nate and Holly came over so Nate could play with Lydia for a little bit. I heard back form special needs and they put a message to pulm to get their opinion. Pulm called back and said to do a neb and that they wanted Jilli to continue to stay close to the hospital and if anything else changed to go to the ER. Special Needs called RMH to let them know we needed to stay another night. We hung out mostly in the room but went to the art room for a little bit after dinner. Jilli continued to have pulse ox crashes, infact the neb made them worse for a little bit, but nothing else changed. She was in that stupid gray zone.

Thursday: We woke up and hung out around the house. Jilli did more art and only had one pulse ox crash in the morning. She was so excited to be there for gardening with Ann. Ann is so sweet and she and Jilli have a special relationship. Ann just had the garden path at RMH redone so that it is now more wheelchair accessible. Jilli loves gardening and was so happy. After gardening we worked on packing up and checked out of RMH and our plan was to head to Chili's to meet Nate's family for dinner. Well we got in the van and it would not start. We tried jumping it and that didn't help. After consulting with a few people we decided to have it towed. I called RMH to see if the girls and I could come wait inside and if they had a preferred tow truck. The managers were amazing. They sent me up to dinner and then told us since the car was needing to be towed that we could stay at the house until Friday so we could get things sorted out. They even helped me get all of our stuff back in the house. While I was talking to the managers Brent came up and said the tow truck company called and said that the car would need to be pushed out of the parking garage for the truck to be able to get it. The managers jumped right in and said they would help us and the van driver from RMH came down too. We worked together and pushed the car out of the garage. Then the girls and I headed to the art room since art therapy was going on. After that finished Nate's family came over and brought us food from Chili's. After eating food and them entertaining the girls so we could eat, they headed out and we went to bed.

Friday: In the morning my mom came up and we packed all of our things up again and loaded it all very tightly into her car and checked out of RMH. We headed over the the car place and they said it was the battery. Now we had jumped the car, all of the electronics worked just fine (ac, head lights, radio ect) and the tow truck tested the battery and it didn't look the battery was the issue but the guy said that with these newer vans they need a lot of battery to start and that he could take the battery that would not start my car out and put it in an older car and it would work for several years. The whole situation was frustrating but fixed and for not a ton of money. After we picked up my car we headed to Nate's house because it was his birthday and I told Holly I would help her with some cake decorating. We ran to the store and got supplies and Jilli and Nate made poop emoji cupcakes. We then needed to leave because it was also my dad's birthday and we were meeting my family for dinner. First we stopped at my house and unloaded mom's car of all of our stuff from RMH and then headed to a steak dinner. My dad and I share in common that we both love supper clubs and good steaks! The girls did well at dinner which is always nice. Lydia has hit the throw everything on the floor stage but she was not yelling or causing a seen so she was fine. We then headed home and got the kids to bed.

Saturday: I woke up and ran to Target to get some things that we needed for that day. Then I came home and we got the girls dressed and then we headed to Milwaukee for a wedding of someone I went to college with. It was a lot of fun to see college friends! Inbetween the wedding and reception we headed to the mall where the Sears is going out and found some good deals on clothes and hit the half price book store. We then headed to the reception and had a good time with friends and the girls did a great job at the reception.

Sunday: We got up and went to church and then met Nate's family at Olive Garden for lunch. We then headed to the Civil War museum. It was a very humbling place to be given the weekend our country just had. Jilli really struggled in the museum and just kept asking why so many people would make choices that were not of integrity. Holly and I talked as we walked through about how different the views of the war are growing up in two different places. After the museum we got on the street car and road it to the pop corn/ice cream shop and everyone got a snack and then we boarded the street car again and road it back to our cars. At this point Jilli's oxygen needed to charge and everyone we sleepy so we headed home. The girls played really nicely and Brent and I just sat tired on the couch. Our plan was to give the girls bathes but they were playing so nicely that it got late and we were frankly to exhausted from the week so we all headed to bed.

Monday: This morning the girls had PT. Lydia worked hard until she decided she was done and crawled over to her car seat and waved goodbye. Jilli worked hard too and had a good therapy session. We talked about plan for when our therapy location closes and for now we are going to make the drive solely because we love our therapists but we are changing our schedule and combining things. It is what it is. We ran to Target after PT to get a new planner for me, I just need to write plans out. Then we came home and my mom came over so I could work on cleaning some. Thank you to Annette who came over while we were at RMH and brought our mail in, took our garbage out and picked up Lydia's toys. Brent came home from work and said that the letter came about the wheelchair and the thinks it says it was denied. I literally felt like the air was knocked out of me and I asked for the letter as I read a lot more insurance paperwork then he does.  As I read it I realized that they said we could not get one accessory for the chair but had to go with something that costs less money but that the wheelchair and smart drive were approved. I need to call the wheelchair place tomorrow to make sure they got the same info and then order the chair! This is amazing! At first it looked like they changed the wheel spoke covers but then when I looked at things closer (of course it just comes as a list of things that say accessory x amount of dollars instead of just telling you what each line is talking about) it looks based on pricing that it is the parent handle that they want us to switch to the cheaper since handle instead of the double handle and while I prefer the single handle it does not work for hanging the oxygen on the wheelchair and we need the double handle so we will likely be paying the difference but that is fine because it is only a couple hundred dollar price difference and in comparison to everything else that is being cover it is a very small amount. We are so excited. This is huge. I think the state also got that we were not going down easy. With their questions this last time we included a letter from her neuromuscular doctor stating that her mobility needs are life long and a multiple page letter from the Children's rehab team explaining why Jilli needs a wheelchair in great detail as well as the PT writing up a letter answering all of their questions. I think they got that we were not going to back down and that I was prepared to get more people to back us. Thank you to everyone who has been praying for this!  This journey has been really stressful and it is not over yet until the wheelchair is in our house but I feel like today we won a huge battle.

So it has been a busy week here. The girl's PT told me today she was prescribing me a nap as I struggled to stay awake. Hopefully Lydia sleeps tonight because man that child makes her sister look like a good sleeper and its almost 11pm and Jilli is still up.

I am in love with Lydia's new dress

Helping Holly and I shop for a couch

We got room 110 at RMH which is my favorite because it has this awesome desk which made it easier to put things up away from Lydia giving her more freedom

Jilli in music therapy

Jilli watching an Q&A that her ENT did a few months ago about ear tube surgeries, she said her monkey felt better after watching it

Using photo paper making leaf prints

Our rocks in the garden

Jilli on the new wheelchair path

This made Brent and I cringe, as we were walking into the book store the music store next door was in the process of moving so they just loaded up a cart full of guitars without cases and smashed them together and wheeled them across a bumpy parking lot...