Brown and Pink Polka Dots : A bunch of life stuff

Our life has been... well our lives lately so there is a bunch of updates and honestly I am just too tired to write multiple posts so I am doing one:

-We are participating in a run/walk for one of the hospitals the kids go to. This is our 7th year participating. We have our team all set... but we are WAY behind on our fundraising goals. Our goal is to raise $3,000... currently we are at 14% of that goal with 2 weeks left to fund raise. If you are interested in donating to this great cause here is the link: http://www.chwevents.org/site/TR/RunampWalk/General?team_id=16553&pg=team&fr_id=1250&fbclid=IwAR3U-RsfGZK1C_DQUsaGhDhY0TstQTTeDJ2RS7tzzRu5hMztu3FSUwMzgH8

-Last week we met with a new doctor outpatient. We have seen him in the hospital before however the hospital just developed a new undiagnosed clinic and he is overseeing that. This clinic is new... it doesn't really even tell you online where the clinic is held. We went in a little unsure of what this meeting was about. We didn't ask to be moved into this clinic, when genetics cancelled our yearly appointment they said they were canceling it and wanted us to see this new clinic. I don't love going into an appointment where I don't know the goals and expectations of the appointment. However I think it went well. He sounded like he is interested in helping with overall diagnostics but is also respecting our current pause in medical testing. We expressed to him that we feel like we learned in our big meeting in July that maybe we don't communicate well enough all of the day to day things with our medical team. There are so many things that we just do and take care of. We call them when there are big problems but if we can solve the problem we don't call, but we get that sometimes us not calling makes it look like everything is going great when that isn't always the case either. He then followed that up with asking us what that looks like in our lives which I feel like no one really does. Maybe we are not great at bringing up information... maybe our team isn't always great asking questions... somewhere there is some breakdown here. It was a good meeting. I am not totally sure where it goes from here. We don't have a follow up set up. He is going to do some behind the scenes stuff. Two years ago I would have been jumping for joy getting into this clinic... now I am thankful yet cautious. When we were in that appointment Jilli was looking tired and her urine output was already trending down but she was still alright... we joked with the doctor though that we were hoping not to see him in the hospital anytime soon... and then...

-Jilli had an unplanned hospital stay this week. We knew her body was headed downhill and getting more and more tired. By Sunday she asked to use the stroller instead of her wheelchair for church. For several days we had been asking her how her body felt and she was saying fine but Sunday morning that changed and she said that she felt like her body was starting to crash and told us that we should think about packing our bags. She did ok on Sunday but Monday morning she woke up at 10am and said she was more exhausted and her urine smelled horrible. By noon she still had not gotten out of bed. I called our SN team and asked what they wanted us to do. It sucks sitting at home watching your kid get sicker and not have anything you can do about it. It had been several weeks of seeing some decine in therapy so we knew this was coming but now the wheels were falling off the wagon but they had not fallen all of the way off yet. Thankfully the team let us try coming in sooner this time. That meant that it didn't take as many tries to get an IV in or a urine sample. We were on a different floor then normal but Jilli was excited that child life came to her on the different floor which made her really happy. We were able to make it only be a 3 day stay instead of longer.
Her body is still really tired... it will take several weeks to get back to baseline. Thursday she had some more energy but Friday was slower for her. She had PT on Friday and her PT said that while her arms and legs lost less tone this time, her core is rough right now. Yesterday she spent most of the day resting. We ran to the store and she helped serve dinner at rmh but other then that she rested. We went to the playroom and she lasted less then 10min playing. This morning for church she asked to be in the stroller again and I held her for singing (it was family Sunday so they did kids songs) and she lasted a song and a half sitting on my hip before she melted and at lunch she ended up laying down part way through. We are grateful for less tone loss this time and that the stay did not need to be as long. We are also thankful that she did not loose her speech. There are still some hard parts here... when her body stops working how she wants she becomes a lot more impulsive. Her personality changes too, she argues a lot more, doesn't listen as well and cries a lot more. It will take weeks of PT to get back the tone she lost. The IV fluids do what we need to turn her in the right direction but there is still SO much work to be done once we are out of the hospital but it is hard because people see that she is out so they don't get that the whining and the very quick to tire out is a part of the recovery process and that the recovery process goes on for a long time.
Our neuromuscular doctor did come to see us in the hospital. We talked about some overall things (some things are still a mess from NIH!) and we talked about these crashes. At first some people thought they might be due to viruses but that hasn't worked out with labs in the long run. There is def a seasonal/weather pattern to it, and while we can't point to that as the cause, there is def a correlation there. He said that maybe we try to look at this as more of an abdominal migraine. Lydia has migraines but Jillian does not, however he said that episodes like this in young kids are often actually migraines that manifest differently in bodies before puberty, especially in dysautonimia kids. And weather and migraines play together. We meet with that doctor in a few weeks and there was some talk of migraine medication but we will see. He also talked about maybe proactive IV fluids to see if we can prevent these from getting this bad but there is a logistics portion of this that is looking like a challenge. The one thing for Jilli that doesn't completely add up with the body migraine is the tone loss that lasts for so long after, most kids with what he described get IV fluids and bounce back rather quickly... that is not the case for Jilli... her GI system is still running slow... she has still been sleeping with a bucket at night because her stomach is so uncomfortable... but there is not much we can do about that... she struggles to keep hydrated with 24hour tube feeds, so the discomfort right now is just a part of life because turning her feeds down will just make life worse by making her more dehydrated. She is happy though that she finally had a real bowl movement yesterday which caused her to avoid an enema. She had a small on last Sunday, and a small one Thursday but we are grateful for a real one. She still is having us leave her stomach open to drain too, which is a balancing act because we don't want to loose too much fluids that way but it helps with the discomfort. The holiday week is messing some with PT days this week so we will see, we would like 2 days of PT this week but it is hard when Monday is a holiday, we don't want PT to days in a row, her normal PT time is on Wednesday so it just makes logistics a bit different this week.
Child life also came in while we were in the ER and helped Jilli through the cath and IV which helped SO much! They gave her American Girl doll an IV too which really helped Jilli. Her American Girl goes with her all over the hospital and helps her to be brave. I am so thankful for it! Jilli and I are thinking of creative ways of how we can buy more American Girl dolls next year at the Wearhouse sale... if you have ideas we are open to hearing because we see how much this has helped Jillian and we want to keep passing that on to other kids in the hospital... and the Warehouse sale is the best way to do that (they had dolls as cheep as $30 each this year!)

-Yesterday some amazing people came to our house and helped more with yard work, staining, priming, painting and drywall work. I am beyond grateful for their help! I stink at asking for help for us, this is very humbling to me, but the reality is weeks like this week happen and that is part of why things just take a long time in our life. The reality is we need help! There was something I was thinking of last Sunday as someone was over helping us with a flooring project... someone we sit near every Sunday but have never really had a long conversation with... someone who we likely would not have had over that day if we were not working on a project... but I saw community happening... I listened to conversations that happen when you are in the same room with someone else working on a project together. I told my mom yesterday after I heard who was at my house yesterday how incredibly loved I felt by the fact that those people would give up their Saturday to come to our house. I am not trying to pass our projects off to other people, the hours we are trying to sqeeze in places working on all of this are a lot... but I also see how God is creating community around this project and that is not something that could have happened if Brent and I continued to let our pride stand in the way here... we needed help for a while... we were too proud to ask and that is why the yard looks like it did (plus add a few down trees to the mix!). God has been showing us that we can't do this on our own and while we are still working really hard, He is also humbling us which at times feels really hard (our culture says you are less then if you can not do it all yourself) but we are also seeing fruit He is growing here too. We did create a Google doc of the projects we have left to do. For the month of September we mainly are only working on the weekends because we have a lot of medical stuff going on this month, but let us know if something on the list is something you can help with: https://docs.google.com/spreadsheets/d/19e-x82m7UjvdTFXjF78MYpSWrT4ovj3C4-F1cAPV06A/edit?usp=sharing

-Yesterday I was also a little crazy! It is a holiday weekend which often means that there is less meals served at RMH because less people sign up to do meals around holidays. Well there is not dinner served on Friday nights, no one signed up to serve dinner Saturday, Sunday or Monday either. The house is paying to have dinner Sunday and Monday but that is expensive to have food catered in. So that left last night with no meal. Yesterday we also got the check from Kade's Klassic and Brent and I both try to live by the Biblical principle to give some away first of anything you earn or are gifted. We knew we would get a check and we had talked a little about how we would apply this way of thinking to this money... but the reality is that these two things collided... we were given a check and RMH needed dinner... so I talked to the manager and they said it was fine if we served dinner so we started trying to figure out how we could pull this off. We contacted a few restaurants and the prices they gave were crazy (like it cost less to feed people at our wedding then I was being quoted yesterday from everyday restaurants). My parents had just eaten at Arby's and saw that they now sell meat by the pound. We called and they gave us a great deal and threw in the buns because we were doing it for RMH. The kids and I ran to Meijer and bought side dishes, dessert and drinks. My parents and Brent were at our house working on the house so it was just me and the kids at RMH and I was prepared to pull this off the kids and I... trust me, my dad thought I was nuts... my mom said that she loves my giving heart but that sometimes it stresses her out... I reminded them both that this was just me being me. Here is the thing... I really didn't do anything crazy yesterday... I saw a need and asked what I could do to solve the problem. Was the logistics a bit crazy there for a bit... sure... but we can all look around and find things that need to be done and do them. I was prepared to do it alone but posted on Facebook asking for help and a couple of friends did just that. One of my friends drove from 2 hours away, she last her own medically complex kids and figured out childcare and drove down to help and brought her dad. My other friend came from an hour away... she had a night without kids... as a mom we know how rare alone time is... she saw my post and gave up her night to drive and come help me. My mom came up and picked up the meat and helped. I was blown away that these friends would see a Facebook post and jump in! The funny this is one of my friends thanked me for being the person who sees a need and jumps in... for me that is not the scary part... for me the scary part is the asking for help part... what if no one comes? I often say that I am a person who is just good at gathering people to fill a need I see, but the asking for the people to gather part is always the part that still overwhelms me. That part feels personal. That part feels vulnerable. I can figure out how to get food for 60 people in 8 hours... but I can't convince people to help. I can put out calls for help but its up to other people and that feels very out of my control and it feels like I am putting myself out there. But we need each other. We need community. I am glad we fed hungry people last night... thats great... I am even more glad I got to spend time with my friends who saw my crazy idea and said "I'm in!"

-The next few weeks we have some health stuff going on. Its just next steps forward on our journey... although part of the next steps we would not have to be taking this week if we actually had herd immunity... which is frustrating!

-Jilli started 1st grade a few weeks ago... which is an interesting story because I was planning to start it early because I know that September is going to be busy with medical stuff... I was not planning on starting it at my parents but thats what happened because a few weeks ago we had a bad storm at our house which caused lightening to hit a huge tree and take out tons of branches. We had to have someone out to take care of some of the tree but because of where the lightening hit and the storm damage on the ground only part of the tree could come down at first which led to a branch that could have gone through our house and of corse this happened while Brent was getting on a plane to fly out of the country for work. My cousins and a friend came over and helped me clean up storm damage but the kids and I ended up spending a few nights at my parents while we got everything safe at our house. Thankfully the house was not hurt... just a huge mess in the yard.

-We also took more friend time the past few weeks. I tried to be intentional this summer for friend time.

So thats whats up right now with us! Today we are taking a rest day which we all really need.

There are a ton of photos from life the last few weeks that I have not uploaded so this post feels like the right post... so here are the pics of the end of summer for us which involved lots of house work, friend time and time at RMH!

She is getting so big!

Jilli helping at church a few weeks ago

Dr Lydia

working on the Tiny Superhero mission for the month

Jilli loves card games!

Tree mess!

For Lydia's birthday our friends gave her a fun day together doing something she loved so we chose to go to a children's museum together to play which was perfect!

She loves her Wellies!

First day of school pics

Working on school while Lydia is in music therapy

Friends at the zoo

Some of my people!

See the sandhill crane?! yeah he is breaking the screens on the windows at our house

how many Mimis?

Pictures from my birthday party

This is Lydia's style lol

While we had people over working at our house last weekend Jilli yelled that Lydia was not connected to her pump any longer... apparently Lydia walked away without her backpack and instead of stoping she pulled and broke off her extension inside of her tube! As you can see the peice that broke off is flush with the tube making it hard to get out. Thankfully Brent and I worked together and got it out avoiding an ER trip... I often feel like I never get enough done but then I try to get things done and these are the things that happen

Lydia walked in the the magic room, pulled the stool over the the baby dolls and told the staff and I that she had to save the babies... we had to remind her that she can only pick one thing from the magic room... it was not that she wanted more then she was suppose to have, instead it was that she was so worried about all of the babies it broke her heart to see babi=y dolls down there not being loved... that is really her heart!