Community- Happy Halloween!

Tonight is one of those nights where I was dragging my feet a bit but I am thankful I went anyhow...

Lets back this up...


Typically after Jilli has one of her crashes she is a bit emotional for a few days after we are out of the hospital. We typically blame it on the steroids.

This time because her lungs did not swell as much we chose now to do the steroids. There hs always been a few questions about what the steroids help and what things are caused by steroid side effects.

What we are finding this time is a much harder recovery.

While Jilli regained walking and talking quickish, it was other skills that others might not notice as quickly from the outside that were really impacted.

Her fine motor skills took about a year backslide which has impacted her coloring, drawing and writing.

She lost several of her letter sounds and sight words.

Her stamina is still really low.

Her verbal skills took a hit.

But the biggest thing is that it really impacted her emotional regulation and impulses.

Things that are normal to her are suddenly the end of the world. Things that use to be simple send her into tears. Part of it is that she is struggling with communicating her feelings. Talking about things and talking about feelings are different skills. She can normally tell us when she is upset or frustrated or scared, however right now she is expressing those things in behavior and impulsive choices.

This is causing a child who is very even tempered and easy to talk to to become a child who the slightest thing makes her cry.

Last night was a very hard night here. We have never seen our sweet girl make the choices she did last night and at one point her emotional regulation was so off that she started vomiting stomach bile because she could not calm down.

Having been a teacher I have a lot of tricks. I was using all I could think of an eventually she calmed her body but we had some scary moments before that.

It was very hard on Brent and I.

There are some moments right now that we feel like we brought a different child home. We see times where we have our sweet girl, but we are all on edge.

We were starting to think it was getting better before last night.


Today has been better. Today has been calmer, except for speech where she really struggled again.

She says her body just feels out of control, so we are doing our best to help her. We are trying to teach her strategies to help herself as well.

I think part of it is that she is frustrated and I would be too if suddenly I had to reteach my body a bunch of things.


So today for Halloween there was a part of me that just wanted to stay in. We have had a busy week with meetings with our new DME (they have been an answer to prayer!), a meeting with the waver for Lydia, and phone conversations with MAW (currently I am frustrated as they are being strange about letting her do her wish since she is on oxygen and they are struggling with asking questions and instead making assumptions, right now this is adding to my stress). We also have another waver meeting tomorrow and another meeting on Friday with our new DME since we did first set up but needed to do the individualized stuff. We also found out that the new DME can not do the pulse ox test for Jilli so we are waiting to see if our insurance needs it, so that is in limbo right now. Every part of me just wanted rest...

However...

Its Halloween. Now normally that means we only go over to one house. Our AMAZING friend Annette who is amazing at loving us, always does something safe for the girls for Halloween.

I posted on Facebook over a week ago about the Teal pumpkin project and how this was the first year Jilli felt a little bummed that Halloween is not a safe holiday for her. I was encouraging people to think about kids like Jilli (yes person on my feed who decided to post a meme about how kids these days are too complicated with all of their needs on Halloween... and no I did not find it funny at all... there is nothing funny about making fun of kids food allergies).  

So our plan tonight was to just run to one house that is close to ours...

But then my phone buzzed...

It was people texting me that they had safe trick or treat things for the girls and inviting us to their house to trick or treat...

I am seriously holding back tears as I type this.

Those were the most amazing text messages!!!

I watched community come around my girls and love them and include them! It is AMAZING!!!

So the girls put their costumes on and we drove around to the people who text us and went safe trick or treating. The girls thought it was amazing to be included. Jillian was SO happy.

Tonight was a night of healing for us after a very rough yesterday and I am so thankful for each person who played a roll in that. I can not even explain to you how much those texts meant to me. I can't tell you how much it meant to us for you to invite us to your house to trick or treat. You made an impact on our heart.



Continue to pray for us as we are working back towards baseline. I am speaking at a fundraiser this weekend and then we head into a week of appointments and a trip to IR for both kids for tube changes.

Tonight I am excited to go to bed in a much different mood then last night.

Jilli decided she wanted the strangest/weirdest/spookiest looking pumpkin so she chose a non orange one and drip painted it 

Also, I went and voted today... if I have time to vote, so do you... go do it!!!!!!

Worship

I come to this blog to type typically in one of three moods:

1. There is information that I need to share and this is an effective place to do it to a lot of people at once

2. I am journaling medical stuff that I want to remember later

3. My head is bursting with stuff and I need an outlet for things to flow out...


Today is a number 3 kind of day so buckle up...


This morning the girls and I made it to church for the first time in a few weeks. It was good to be there and my heart was filled up.

Our first song today was Great Are You Lord:

You give life, You are love
You bring light to the darkness
You give hope, You restore
Every heart that is broken
Great are You, Lord

It's Your breath in our lungs
So we pour out our praise
We pour out our praise
It's Your breath in our lungs
So we pour out our praise to You only

 

 

Its feels like we tend to sing this song around lung stuff going on in our life. We sang it the week after my cousin passed away last year after a lung transplant and a lot of the family cried as the song played. We sang it during the battles to get the girls on oxygen. We sang it after the girls went on oxygen. 

 

We sang it today after a hard lung appointment this week. It brings tears to my eyes to hear my girls sing this song. It is God's breath in our lungs... how often do we forget that? How often do we forget to be thankful the the air He created?

Our last song was called Beautiful Name by Hillsong... this is one of the songs that Lydia likes to sing to while standing on her chair and playing her guitar. When the song started to play she looked around like "why are all of these people singing my song here?" It was kind of funny. 

The sermon today hit me too. It was a realization about why a few things in life feel hard right now... I was able to put words around it. 

There have been a couple of line and a couple of things that I talk about in the book that I feel should be in there... however I know that not everyone will agree with my stance on everything and that some people might disagree and I am such a conflict avoider that I want to run away from saying anything that does not make everyone happy however, while I am called to speak in love always, the does not mean that I am called to speak in a way that everyone agrees with me always. That just is not possible and is harmful to the people around me. 

I am also finding myself shying away from talking about the book right now in real life... I have talked about it on here several times but rarely when I am face to face with someone. Part of it is because it is hard to tell someone that you are doing something out of obedience to God (and its not even like I am building an ark lol). I did not set out searching to write a book. I still do not view myself as a writer (even 602 blog posts later). This is something I did because God asked me to, however I fully understand how strange that sounds to someone who is not actively looking for God's will... I understand it even sounds weird to some people in church world. When you start telling people you did something because God asked you to they look at you like you have multiple heads. I'm not ashamed of my faith, and I do not mind telling people I am a Christian however that is socially acceptable... but to tell someone you did something because you felt like God asked you to feels very different. 

 

I also do not want my head to get to big in this. I do not want this book to become about me. I want this to be a God thing. There have been steps along the way that are uncomfortable but I keep praying that God uses the uncomfortable to make this into something that glorifies Him. I do not know how to do this well. This is something that could easily become all about me so I am shying away from talking about it a lot because I don't want to turn the spotlight away from God. I don't have this balance worked out... I'm super new to this! Literally with each step I am praying for guidance... who I told about this book when was all done with a lot of prayer. I so badly do not want to mess this up because I want to glorify God that maybe at times I am taking too cautious of steps but thats what I know how to do and overall this currently feels like a giant step of faith. I know I will mess up along the way... I just want to be careful, I know I will make miss steps along the way... I just want to be careful. 

 

Also, I am a person who sucks at waiting and writing a book is not a fast thing. I wrote the first draft in a month, but then added two more chapters. The editor just finished with the first draft and now it is back in my hands to work on the edits. I want it to be the best it can be to glorify Him so it needs to go through this sharpening process. But there is a part of me that so wants it done lol. There is also a part of me that is scared to let the world read it. 

 

What I am super thankful though is for my people who have stepped up when I have asked for help. Mikaley editing, Jess taking head shots and cover photos, Linda for buying a Tiara, Brent for cheering me on, Jamie and Yoomi for praying... while I have let very limited info out about this whole thing, I am so thankful for the people who have stepped up and helped. There will be more things I need help with along the way and I am thankful for the people who will step up then too... I can't do this without my people. 

 

 

Then on my way to church and on my way home I listened to The New Activist. This weeks episode was with Jennie Allen of If gathering. It was another podcast of what I needed to listen to at that moment. I can be a powerhorse... and I have had times where that has been tried to be taken out of me due to my gender and that episode was so freeing. I remember in high school when I was looking at jobs and looking at Christian colleges and a dad of a friend of mine said that if I perused full time ministry that his daughter could no longer be friends with me because women did not belong anywhere sharing the gospel except to children. I see how comments over the years have made me feel like being a powerhorse was not something I could use for the gospel and that I just needed to tone myself down... fit in... fall in line.... but what if that is not what God created me to do? What if He created me as a powerhorse for a reason. What if He has a plan for me that I am trying to soften to make other people feel better. Today's podcast really made me wrestle. It also gave me more of the boldness I need going forward with this book. I have a place in sharing the Gospel and it is my job to follow what God is calling me to do... even if it does not always make everyone comfortable... myself included.     

Jess taking a picture for the book

Jilli reading the American Girl catalog

Linda not only bought me a tiara (book reference that will make sense eventually, although I still have not shared the reference with Linda, she just knew it was for the book and lovingly helped me with it without needing all of the details) but also bought the girls tiaras

Jilli doing school

Jilli reading the American Girl catalog during the photo shoot

The girl's PT place had a Halloween party

Jilli's first port hospital stay Target trip... these are milestones in the journey for us

My parents took us to a pumpkin farm we have never been to before... it had a little train and carousel. It was a really fun day! Thanks mom and dad!!!

Swinging at the pumpkin farm

Jilli wanted the weirdest pumpkin lol

Lydia pushing Jilli around church this morning

We went to lunch with Brent's parents today

We needed to buy new winter hats for the girls... there was a new mouse that got in the house while Jilli was in the hospital... it pooped in the kitchen dish towels... chewed two of Jilli's shoes... ate winter gear and died on a shoe

All the hoops

We are HOME!!!

Yesterday was a little more gut punch.

Yesterday was the conversation we all know is true but no one was saying outloud... Jilli's lungs are getting worse as she is getting older and her body is taking bigger hits and since all we know is that it is muscle based but not a cause that there really is not much to do. Oxygen is what is needed... and maybe someday Bipap but our goal is to push that off as long as possible... we have oxygen settings we can go up before that.

We talked about Lydia's sleep and how the other choices of meds she can not use because of her muscle issues so if in a year she is still not sleeping though the night most nights (we typically get one to two good nights a week) then we can talk more about other meds when she is older.

And then we talked about something that makes me want to cry...

I need to back this story up a long ways...

When Jillian started with a feeding tube the hospital had a few outside preferred providers and they set us up with one. We have had them for over 5 years. We have had our ups and downs. Sometimes they do not deliver oxygen on the days they are suppose to... sometimes they deliver busted formula cans that leak all over the place... sometimes they leave oxygen on our front porch when we are not home and do not tell us.

And over the past few years they have cut what supplies we can have claiming that we are cutting into their profits. It is not that our insurance denied the supplies but that they have an odd contract with our insurance company where they get more money the less they provide for us.

While Jilli was in the hospital a few weeks ago they ask how things were going with our DME and we explained all of the issues we have had and they told us about a new DME that has partnered with the hospital. They asked if we would like them to see if this new company could supply everything we need... that has been part of the issue... no other local company could supply everything we need meaning were have been stuck with our first DME. I said sure. And the company came back and said they could do it... they can provide everything!!!

To switch things over though means that our doctor needs to write a new script for oxygen. Nothing is changing with how much oxygen the girls are on.

Our insurance company is now requiring that with a new script the girls need to re qualify for oxygen need. Jillian has been on oxygen since 2015! And her oxygen need has increased over the years.

To requalify for oxygen we need to do a home pulse ox test... and take the kids off of oxygen to do the test.

I'm going to be blunt....

THIS IS SHIT!

Why the ________ should my kids need to be deprived of the oxygen they NEED to prove to the insurance company that they need it. We know they need it. We have documented that they need it.

And pulse ox is not the only sign that they show they need it.

When they are not getting the oxygen they need they play less... they snore horribly... they work harder to compensate... they talk less... they stop growing.... they are less logical. It effects EVERYTHING!!!

BUT... insurance only care about the measurable test...

the problem is that some times they fail that test horribly... somedays their body works so hard and will do everything it can to compensate so they pass the test but then every other part of them suffers and the next day they really struggle. This is common with muscle kids. But our private insurance does not look at that.

I just want to cry.

I need my kids to fail this test and go through 12 sucky hours or insurance will pull the thing that is keeping them functioning.

My head is just dumbfounded.

Why?!?!

Does the insurance company really think that doctors are putting kids on oxygen for the fun of it?

I mean, we work hard to make oxygen fun but it is a lot of work. Work I happily do for my kids. but ugh! My eyes are getting puffy as I type.

This is the shit we go though all the time. It is not the medical stuff that makes me mad. It is not all the supplies that frustrates me. Honestly it is not even the hospital stays that get under my skin... it is the garbage of stuff like this. Of our first company cutting supplies to the point we feel the need to look elsewhere and then the hoops we have to jump though.


Oh and our first DME claims somehow we now unown the IV pole (read past posts about that saga) AND the feeding pump that we have had for 5 years that we previously owned... they claimed that we now unknown a pump that we have a letter saying we owned because when we switched insurance companies our new company did not know that the last company bought the pump so they started charging the new company for a pump rental so they moved our pump out of own status to rental so they could charge our new insurance for an already paid for pump!!!! My head!!!


Today was a hard day at PT again for Jilli... this bounce back is still slow. We are home now though. We have a crazy few days ahead with a meeting with the new DME, a photos for the book cover, a special needs halloween party, and a home meeting for the waver for Lydia because her name just got to the top of the list. But first there is so much unpacking and cleaning that needs to happen...

So off to do that.

Right now I feel weary...

But one foot in front of the other and we will get though this too... we always do

 

20 days

In the last 20 days we have spent 4 of them at home and out of that 4 one was spent in Chicago at Shriners Hospital meeting with that team for a normal visit.

The 20 days have been spent by our main hospital between appointments, therapy and an unexpected hospital stay.

Surprisingly we are still holding together alright but are tired.

Jilli had one of her crash events almost two weeks ago and spent several days in the hospital. It by far was one of our smoothest hospital stays yet. I called our Special Needs team on our way to the ER and they called the ER who was waiting for us when we got there. The ER did everything we needed them to and got us up to a room. The floor doctors were great and our team worked together really well!!!

Jilli threw us a few curve balls. Normally she has lung swelling during these events that cause her to need steroids and Xopenx however this time the swelling was not as bad (maybe from just having stopped steroids from the last crash) so we did not have to use those meds which is good. It also provided some answers to some things because we have always treated these events with steroids because we had to but this one we were able to ride out without so we were able to piece some things apart and figure out what is steroid side effects and what is part of these crashes. It helped to answer some questions.

This time instead of being tachycardia she alternated between tachycardia and bradycardia. She had an event in the ER that was particularity concerning. We already know that the bottom of her heart is thickening and I am sure extreme heart rate fluctuation does not help. Her blood pressure also ran low most of the hospital say.

Her dysautornomia symptums flared like normal during a crash.

We have to use medication to get her intestines moving again during these events because her gastroperisis becomes worse then normal (its bad on a good day) but this time our normal mix did not work and instead caused a rectal bleed. This was a first as we have done this same routine many times without a problem. Our floor doctors came up with a new plan that worked thankfully. IT was also very helpful that our GI doctor was on the floor that week and able to help bounce a few things around with us.


However while there were some aspects of this crash that were not as bad (she never completely lost her speech although she did not make a lot of sense on her first day in the hospital) the bounce back from this crash has been a lot harder... on all of us.

I am not sure if it is since she just had a small crash a few weeks ago or if it was us not using steroids this time but her energy this time has been so much lower after. She has been SO emotional and has had multiple melt downs which is not normal for her. Things that would normally not be a big deal to her send her into tears. We have needed to be more strategic about what we do while trying to build stamina.

One of the hard things after these crashes is that she forgets about safety and makes choices she normally would not. Its also hard to see her so emotional and so frustrated. It is also hard to parent when you know their choices are coming out of a physical problem however the choice they are making still is not ok.

Her heart rate at night has still also been running high for her which means that her body is still working hard.

Today though, thankfully, was the first day that I really saw a good turn which is interesting since she woke up at 4:45am! She was able to play with friends today and was much less emotional. I am hoping we have really turned a corner and are on the med.

We have tried to do a couple of fun things while here. We had already bought tickets to China Lights a while ago so we decided to use those the other night when it was a perfect fall night. We had also planned a while ago to go to a Halloween event at the zoo with Jilli's friend Grace on Saturday so we did that for a short time.


Tomorrow we see a few more doctors and have PT on Wednesday... and then HOME!!!






Thank you so much to everyone who has loved on us these few weeks. Its been a roller coaster and I have cried more then once, but I am so thankful for the people who have loved us!