Sass and sleep

 Go figure...it's bright and early on Saturday morning, the Sasshole is sleeping and I'm wide awake and have been for hours already.  We woke to her feeding pump beeping away at 5:3.0 am and once it was turned off, meds given, diaper changed and Doc McStuffin playing on the TV she went right back to sleep and momma's wide awake now.  I tried to go back to sleep but the smell of fresh brewed coffee and a million thoughts rolling around in my brain kept the sleep at bay.  It's weird to have a quiet morning... mornings where we/I are awake before Madilyn.  Thankfully they are becoming more normal than not.

We finally consented in June to have bone marrow testing done after much soul searching and  hours upon hours of conversations.  So many pros and cons... so many questions..... so much hope for answers and fear of none.  When the results came in after weeks of waiting our Hematology Doctor called me and said "I have great news! Madilyn's bone marrow testing came back normal! But wait, I also have really bad news.  Madilyn's bone marrow testing came back normal!"  Great news considering she fully expected to find Multiple Myeloma cancer and really bad news because we have blood issues and zero source.  Now we are left to possibly try treatments for symptoms and it's nothing but a guessing game....as always.

We've had massive issues that started last October after Madilyn was sick and they've just escalated since.  They landed us inpatient in early March because Madilyn was so escalated that I couldn't bring her down.  We've added Palliative care, Neurology and Pain Managment to our already extensive list of care providers just trying to make life more livable.  We've tried Reiki and have added to our extensive list of medications trying to bring a little calm to our crazy life.  We've done blood test after blood test and scan after scan trying to figure out what was going on.  We've had our physical therapist note increased shakiness and muscle weakness, OT and Speech have both noted her increasing lack of ability to visually track and we've seen a definite decrease in her ability to focus on anything.  The child that could sit for 30 minutes or more watching silly YouTube videos couldn't even focus long enough to get the foot rest up on the chair much less accomplish any task.  She was on the never ending path of destruction, sleeplessness and so angry that I didn't even know what to do anymore.  My mental health was hanging on by a thread.  She's been caught in vicious migraine cycles, they diagnosed seizure like activity, Polycythemia, Disruptive Behavior Disorder, Anxiety, Insomnia and Anxiety to her already mile long list of diagnosis since March.  Oh and don't forget the vomiting... it's ridiculous to say the least.  

Through all of this I have said over and over and over... You are missing something.. I've said it to all of our new docs and old.  I've said it to our Care Team a million times over.. I've cried, yelled and very calmly said.. you are missing something.  Some of the roads it has taken us down have left me absolutely terrified that she was going to die... when my sister came in March she saw a very quickly declining child.  My heart was so broken and my nerves completely fried.  I was honestly afraid to be alone with Madilyn because she has to strength of a full grown man in her little tiny body and doesn't hesitate to let me know how angry she is.  My friends have all been on-call to come running to the rescue.  

Several weeks ago I was at my breaking point thinking about my husband getting ready to go back to work (he's a teacher) and I had this nagging gut feeling that I have given voice to multiple times.  I reached out directly to our Endocrine doctor and asked the question... again..... could it be Madilyn's steroids causing the problem?  I've experienced the rage that comes with high dose steroids multiple times when dealing with my Degenerative Disc Disease and what we were seeing from her always brought roid rage to mind.  I've questioned it on numerous occasions and there has always been a million other things that had to be dealt with.  A million other reasons that "could be the source of her issues".  With a child like Madilyn providers more often than not have overlooked the simplest things due to her complexity.  It's not the first time we've seen it and I'm sure it won't be the last.  In the end we discovered that Madilyn's very necessary daily steroids were almost double the amount they should/could be.   

As soon as our Endocrine doctor told me that I immediately started to wean her doses.  It can/has to be a very slow process.  Her adrenal glands do not produce much needed cortisol and the steroids replace that and keep her alive.  Adrenal crisis can be fatal.  Sometimes symptoms can mimic the symptoms that led to needing the high doses to start with.  It's a tricky, complicated line we are walking and once again I am left to trusting my gut.  I'm happy to say we saw immediate results.  She's sleeping way better than momma is... she's no longer going in a million angry circles around the house slamming doors, drawers and anything else she can slam.  Her focus is coming back and our PT noted zero.... yes, ZERO shakiness or muscle weakness this past week and the absolute best for me was the day my friend was over for an afternoon in the pool and she actually heard Madilyn giggling.  We are seeing increasing glimpses of the happy, giggly little girl that we missed so incredibly much.  Don't get me wrong, she's still an opinionated Sasshole and definitely wants her way BUT it's in a "typical child" sass kind of way instead of an angry, abusive old person kind of way.....I'm sure that analogy will offend someone but oh well, it is what it is...  We are just over half way to our goal and we are very excited to see what life will be like once we get there! 

Even with all of the continuing medical stuff with the Sasshole we have had the best summer ever.  Thanks to some friends giving us a swimming pool and M receiving a HUGE playset from Make-a-Wish Wisconsin our back yard is turning into the oasis I wished for when we bought this house.  All that's missing is the hot tub.  We've had lots of pool days and lots of time with friends.  It's all been much needed therapy for my soul.  We may be playing in a blow up kiddie pool in the basement in January though because Madilyn thinks the pool should be part of every day life and it brings much needed calm to crazy days.  My original plan was to put a hot tub in the basement but when you look at what the reality is of doing that it's definitely not in our budget... I have however already figured out where one will go in the backyard and I'm saving my pennies to pay for it... someday.....

In the middle of everything else we added a new GI doctor.... I was so sad to have to switch doctor's in the beginning but have quickly learned that sometimes fresh eyes are what we needed.  We are super happy with M's weight and feed tolerance.... the GI doctor is happy with those too BUT she feels we shouldn't have to live with the volume of vomiting that has become our norm over the years.  Uncontrolled, behavioral, stress induced... all of the above...  We are going inpatient in mid-September to get a new feeding tube.  She currently had a combined G/J tube.  Part of it accesses her stomach and then there's a really long tube that goes through her stomach, into her intestines and down to her jejunum where she is fed.  Our GI doc feels we'd see great improvement without that long tube.  She feels that the majority of our vomiting is because that tube keep her pylorus (the opening from the stomach into her intestines) open and mostly blocked.  The tube going through her stomach causes constant irritation so her body is constantly producing vomit and trying to reject the tube.  So we are going in for a separate J-tube.  She'll have 2 buttons on her stomach instead of one and after the initial hell of the surgery hopefully we'll see some much needed relief.  I'd be a liar if I didn't say how hopeful and scared I am at the same time.  Hopeful for relief and terrified of not getting any.   Hopeful that the reward is bigger than the risk... only time will tell.  We are also attempting to schedule the EEG to check for seizures that they wanted to us to attempt at home for while we are inpatient instead.  I've gotten pretty good at the two procedures at once thing over the years so hopefully it works out and seizures are able to be ruled out. 

In the meantime we are just living life and going shopping for the Sasshole... because every girl needs a million pairs of pink fucking shoes...🩰  

Our new reality

Everywhere you look or listen right now is Covid 19.. corona virus.. social distancing.. wash your hands wash your hands wash your hands... stay home if you're sick...just stay home...

It's really nothing new for us.. it's been taken to drastic measures but it's how we live our life.  Everyone at our doctor's offices and Children's hospital love Madilyn's "bubble" when we go there.  For several years now we have used her weather cover for her stroller as her germ bubble when we are in places like that to protect her.  It's now her comfort zone... it's our reality.

Since New Year's we've been inpatient twice and to more doctor's and lab appointments than I can count at the moment.  We've had scans and more lab tests than ever searching for answers...  Hematology recently did 2 genetic tests searching for an answer to her blood problems.  The JAK2 Gene Mutation and the JAK2 Exon 12 Gene Mutation.... the nurse called me yesterday and said that both are negative... the next step they want to do is bone marrow testing.  We don't want to put Madilyn through bone marrow testing... at this point it's irrelevant because with all of the virus stuff going on our hospital is basically shut down other than emergencies.  None of our clinics are seeing patients like Madilyn because it's not an emergency.  Even if it was an emergency Madilyn would probably not be seen because we have Advanced Directives in place already.  They are doing everything they can to help us manage symptoms remotely and are in constant contact with us so that's a plus.

We've made some recent med changes and it's helping with sleep for now and we're working our way through a list of options to deal with her headaches until we can finally see Pain Management in June (hopefully).  We were referred to Neurology and with the current situation I'm not sure when that will happen.  We've also started using CBD ointment to help with the pain in her feet, back and legs and it's helping.   The good news is that with these things in place and with all the help home with us the abuse is greatly reduced and I always have someone here for immediate intervention so it's very livable right now.  The Sasshole is super excited to have everyone home too... constant entertainment for her... and relief for me.  Now if it would just be warm enough to get out in the stroller or on the deck that would be amazing!

Regardless of other people's opinions of the virus and steps being taken... it's how we would be living either way so I just scroll right on by... we need to remember to be kind to one another.. reach out to our loved ones and practice social distancing and great personal hygiene.. I went to the grocery store yesterday and as I was spraying my cart with my hand sanitizer I noticed a woman that was trying to figure out what to do because they were out of the wipes so I kept my distance from her but sprayed her cart too.. it's the little things....  I was not so kind to the woman in the produce department shopping that was visibly sick and not covering her mouth to cough though.. or the guy that was with her that wasn't any nicer.(I won't even get into the conversation they were very loudly having) complete disregard for anyone else..I told them how ignorant I thought they were (from a safe distance) and that she could at least use some common sense and cough into her elbow and cover her fucking mouth... she didn't care.. she thought it was funny... people like her are why shit like this goes on...  use some common sense people... please....

Life for most people is drastically changing right now and we have very little control over it... my only suggestion is to learn to live peacefully... pick one project per day and tackle it... move your body, there's tons of free videos out there and I shared some on my Facebook page).. drink your water...eat healthy (grocery stores are NOT closing)... don't hoard toilet paper or food.... and breathe... play a game with your family.. read a book... life will be back to chaos quicker than shit so just live in the moment.

I had an appointment scheduled for almost 2 months prior to all the virus stuff and contemplated not keeping it but I'm happy I did... I was one of his last appointments before the state shut them down for social distancing... I'm so thankful I kept it... it's Madilyn's very first pair of pink fucking shoes......

The Ugly Truth

We have been through so many tough times with Madilyn.... so many things we thought we'd never make it through but we have.  I've shared so much and at the same time so very little of what our life is really like at times.  Since Madilyn got sick in early October we've been on a super fast downhill slide.  It's going so fast that we often feel like we're going crazy and question our own perspective on what's really happening.
As the sleep issues escalated so do the behaviors.  It made us all feel incredibly insane.... and broken.  Dealing with all of the new health issues combined with all of the behavior issues just became too much for me.  First I need to state that we have some super amazing and supportive people in our lives.  We have a tribe of some of the best people we've ever had in our lives.... but there was an aspect of our lives that I did not let them in on.  I would make comments sometimes and try to make light of the situation at home... but I was never truly honest with them.  There's a fear that comes with that kind of honesty... a fear that people with think badly of you, or judge you... the biggest fear of all is that it will be too much for them and they will walk away. 
This past Friday after 2 months of never sleeping more than 3 or 4 hours max at a time... months of broken sleep and heartbreaking medical issues.. I snapped.. and so did Madilyn.  There's an abuse problem.  It made me feel just as ashamed and broken as the abuse in my first marriage did.  I desperately tried to hide it.  I wear long sleeves to cover bruises and scratches and I don't really talk about it.  There are very few people who ever get to actually witness it. 
Madilyn was so escalated by Friday morning... days and days of not sleeping at all... her aggression was through the roof.  Her screams make you wish you were deaf and her unbelievable strength when she's that escalated makes me feel like I'm being beaten by a full grown man instead of the tiny little being that she is.  There's no stopping her, there's no ability to reason with her.  All she knows is she's hurting and I'm her person and I'm not fixing it.
After about 5 hours of repeated beating and screaming I called our care team sobbing and begged for help.  She could hear Madilyn in the background and said we needed to come to the ER to be admitted.  She made me promise I would call someone for help as soon as I hung up.... I've never done that... my people were not here.. I had no other choice.
I called my friend to get my work shifts covered and to tell her what was going on.. Madilyn was screaming and I fell apart... I could not stop sobbing.. she immediately sent another friend over and she got my shifts covered at work... My friend came in and simply ran interference between Madilyn and me.  She let me cry.. she let me walk away and did everything she could to distract her.  Madilyn came at me and was kicking the shit out of me and hitting me and she told me that if I needed to go in the garage and smoke a cigarette she was fine with it.... I think I apologized a million times for how awkward she must feel in the middle of this situation.... she simply reassured me it was fine.  Another friend showed up and just held me while I cried and together we put a plan in place for when these things happen.  Like it or not, this is our life.
All 3 of my friends have repeatedly checked on me and reassured me how much they love me and that they are right there for anything we need. 
Friday was the first time I've ever put Madilyn in the playpen begging her to stop because I was afraid I would hurt her.  I walked away with her blood curling screaming and took a shower... and sobbed my heart out and prayed like crazy to a God I'm not sure I believe in.... right after that is when I called for help.
People read in the media about a special needs parent that snapped and hurt their child and they judge them.  They find out about a parent that walked away and they judge them and say nasty shit about them.... on Friday... I completely understood both.  I reached out.. not everyone has that option.  The life we live is very isolating.  People walk out of our life on a regular basis.. or tell us they'll be there and they're not.  We hear all the time... just ask, we'll help.... not understanding how hard it is for us to ask.
My husband has heard more times in the past two months that I can't do this anymore... he has heard a million times while I'm sobbing that I feel so broken it hurts... what a failure I feel like because I wasn't able to help her... nothing can take away that feeling.. all the reassurance in the world doesn't take away the pain...
We spent 3 nights in the hospital... by Saturday at noon time after only sleeping 2 of the last 24 plus hours Madilyn stopped.. it was like someone flipped a switch and she became pretty non responsive and just had a glassed over look and was vomiting.. just opening her mouth and letting it pour out... she stayed that way for about 30 hours.. it scared the hell out of me.  We ended up determining that we thought Madilyn was caught in a migraine cycle.  One that finally shut her right down.
We've always questioned if she lived with daily pain.  Our care team always said they didn't think so.  With all of the new blood issues coming to light they now say that she definitely does.  We've been referred to the Pain Management team at Children's to determine the base level of daily pain she lives with and to determine if it is migraines she is dealing with. 
We had extensive talks about bone marrow testing vs pet scans..... we had an honest and open conversation about what Hematology is looking for... they think she has cancer that is not yet showing in her blood.... we had conversations about the Advance Directives that were put into place prior to her lung procedure last month... we've been having incredible hard conversations that no parent should ever have to have.
We also had a very honest conversation that our team does not think Madilyn's health situation will improve... it will continue to decline... BUT we are taking steps to make it more livable and to bring her more comfort.  We are hopeful to have more happy times and to hear more giggles than screaming and crying.
We are grateful that the new med has brought some sleep even if it's only for a short time.  We are grateful for the happy giggles that started our morning today.  We are going to remind ourselves to live in each moment.... find the positive in every situation... and remind ourselves to breathe...
I'm no longer looking at Friday as the worst moment of my life.... I'm looking at the positive that came from it.... I'm thankful and so beyond grateful for our tribe... I'm thankful our "secrets" are out... and I'm hopeful that being honest about it can maybe help one other person that is living a life that involves any type of abuse....
We have a big meeting with Madilyn's team on Thursday to discuss the next steps on our road.... until then I'll focus on finding some new pink fucking shoes...

Rollercoaster Ride

Dad post time here.... (I hacked mom's account) I don't usually say to much when it comes to our personal life and life with little miss, but I think I just need to vent.

We get all this news on what's happening with Madilyn and we try to wrap our heads around it the best we can, but that isn't always easy. At times, it isn't always possible. I try desperately to stay positive and not to dwell too much on the dreaded "what ifs", but every once in a while it sneaks in and takes hold. Now is one of those times.

We knew full well going into this that we were living on borrowed time with Madilyn and one day she won't be with us. We knew this... doesn't help. The thought of not having her around scares the hell out of me. We've watched her grow when we were told she wouldn't. We watched her learn when we were told she couldn't. She proved them all wrong and beat the odds. I need her to defy those odds again. One. More. Time.

I see the toll all of this takes on Kathy. The sleepless nights, the balls to the walls days. That woman is a saint. She is by far the strongest woman I know. I do know, however, that strong doesn't last forever. You can go full throttle or you can go for longevity... not both. At least not for long. "Slow and steady wins the race" doesn't seem reachable. She's tired. She hurts. She cries. Yet she gets up every single day and does it again and she perseveres. I worry about the breaking point... for both of them. When is it all too much? They both amaze me every single day. I'm not sure if this is someone's way of telling her she needed work on her patience or not, but she has honed that skill to a fine edge. Her mommy gut has been spot on even when the specialist thought she was cracked. Her mission has been very clear. She pressed the issues when the doctors wouldn't listen to the point that we thought they would call CPS or the authorities on her. Thankfully they listened to her before it came to that.

I'm not really sure where I was going with this, so it kinda rambled. Sorry about that... I do know that I love that little girl more than I every thought humanly possible. We always hear, "Oh... she is so lucky to have you both in her life", when in reality,  we are the lucky ones. We have learned more from her than she will ever know. She has taught us to appreciate the things we all too often take for granted. When it's good, it's a good like no other. The giggles, squeals, and squeezes. Oh, the squeezes! Man, I love the squeezes.  On the flip side of that, when it goes downhill, it goes quickly. It's all one big rollercoaster ride. So we hang on through the twists and turns and highs and lows and go where it takes us.

If you've read this far, thank you. Thank you for listening. I don't own any pink fucking shoes, but I will. That's a promise. I'm thinking that's my next tattoo... If you have pink shoes, wear them once in a while and smile... because you know it's all about them.

Our broken hearts

I'm not even sure how to really say where we are on our road right now..  our hearts are hurting, we are trying desperately to process everything.
Madilyn had a sedated CT scan a few weeks ago to look for erythropoietin secreting tumors.  The whole experience was terrifying.  We went in expecting a simple sedated scan with contrast and apparently the contrast is different than the one used for MRI's or her feeding tube changes and she had a severe allergic reaction to it.  A, she couldn't breathe and covered in rash and hives, kind of reaction to it.  When she came out of the scan and was through the roof agitated they said they only brought her out because they needed me to help calm her down.  Her heart rate at this point was around 200, which even for her is crazy high.....  in the process of trying to soothe her they filled me in on her allergic reaction and the fact that on the CT scan it showed that her lungs are full of something... there's a spot in her right lung that they were unable to clearly determine if it is a nodule or mass of some type....her bronchial tubes are significantly smaller on one side... and her right lung is partially collapsed.... yes, epic mommy sobbing meltdown ensued following this news and many many times since.
We are scheduled now for a bronchoscopy for our pulmonary doctor to go in and get a really good look at what's going on in her lungs.... then they are going to flush her lungs with saline (aspirate her) and catch the backwash to be sent to the lab for testing.  They need to know if it's mucous, bacteria, whatever it is... then they are going to clean out her lungs via suctioning.  Yes, the whole thing is as horrible as it sounds and her recovery has the potential to be incredibly rough.... we are terrified... we have to know what is going on because her body is signaling via her blood that it is not getting enough oxygen to support it. 
We are experiencing episodes of extreme agitation and times where she literally stops what she's doing and puts her little hand on her chest and lets out this little noise that sounds like she's saying "ooh"... she will also take my hand and place it on her chest and scream at me... she's trying to tell me how much pain she's in and it's heartbreaking.
In the process of trying to absorb all of the reality with the lung issues her hematologist informed me of where we are at now..... papers are being submitted to insurance for approval for a specific genetic test.. it's the JAK2 Gene Mutation test.  Since there are no tumors emitting the high hormone levels there's one of two things driving it...  it's either the gene mutation or it's a problem with her bone marrow... neither one is a good option and the only treatments that we are aware of are not an option.  The only treatment is chemo and a stem-cell transplant which she would not survive and we will not put her through.  We do however have to determine the source in order to know timelines, comfort measures and therapeutic treatments. 
Madilyn's at triple the normal risk currently for heart attack, stroke and blood clots and that's before any of the lung issues are even figured out or included in that risk factor.
This is sooooo overwhelming for us to try and process.  We always knew that every day with Madilyn was a gift and that her life expectancy wasn't very long but to have come this far and now actually have a Doctor start talking comfort measures sucks the wind right out of your sails.  We may get several more years, the truth is we don't know.  What we do know is that her little body is under extreme stress and we are trying to figure out what to do to help her.
I'd love to end this with some catchy little upbeat phrase about those pink fucking shoes but at this moment in time all I've got is a broken heart and those pink fucking shoes....

Choices

It's bright and early Monday morning and I'm laying here thinking and drinking coffee.
This is a lifestyle, not a diet or a fad.
It's not a moment in time and it's not about being perfect all of the time.
It's about being able to do the things I want to do without feeling like shit all of the time.
It's about my knees and my back not hurting and having the energy to keep up with the Sasshole and all that life with her entails.
It's about not wanting to explode over the top of my jeans and about feeling good in a swimsuit.
It's about taking the time to put my mental and physical health FIRST!
It's about learning to make better choices.
It's about learning what fuels my body and what doesn't.
It's about wading through your own bullshit and excuses to get to where you want to be.

It's about choosing to deal with the feeling no matter how hard.

It's about choosing what's going to fuel my body rather than what's going to taste good in the moment.

It's about choosing to move my body daily.

It's about choosing to eat the fucking salad.

It's about choosing to drink the fucking water.

Anyone who knows me knows that my first choice to avoid feelings was alcohol.  I kept all the things locked inside and I drank instead.  I was the life of the party.  I was also so emotionally broken I didn't know what else to do.  Dealing with the actual feelings was "too hard" so I drank instead.  When the time came around that I couldn't use the alcohol to make me feel better I turned to food.

I would literally eat until I was so stuffed I thought I would vomit if I had to burp.  I couldn't have sex with my husband because I was so stuffed I would puke.  I loved my husband and children beyond measure but hated my life so much I didn't even know what to do with it... so I ate.

I think I'm so obsessed with My 600 lb Life because that's the path I was on.  I was watching it the other night and Dr. Now was talking to a patient that blamed everything on food addiction, they claimed to have no control (I've been there) and he said "Food addiction is just like any other addiction, it's a choice.. it may get out of control but ultimately it's a choice and now you can choose to accept responsibility and walk the hard path of getting healthy or you can choose to die".

I'm a firm believer in that every single thing you do from the moment you wake up in the morning is a choice.  You can blame whatever you want, have any excuse you want, but it's a choice.  

You can choose to spend your life being a victim and crying oh poor me or you can step up and do the work and feel the super hard feelings and be a survivor... a warrior.  Life is not easy for anyone.. we all have baggage..

I have lived through rape, domestic violence, verbal abuse, depression, anxiety, physically debilitating illness.... I have also survived, sought counseling and learned to deal with the really hard things rather than eating or drinking them.  

I am not perfect by any measure.  I have learned to love my flaws... I look in the mirror every day and say something positive about myself rather than beating myself up and letting my inner mean girl out.  

We all go through different seasons in life.. sometimes it's great, other times it's good and sometimes it just sucks... I'm in a season of suck right now.. I started going back down the wrong path with some food choices and lack of consistency with working out... I feel it.  I feel like crap, I'm more tired than normal, my back hurts.... and so does my heart.  I'm scared of the path we are going down with Madilyn... but neglecting myself won't help that in any way..

I woke up this morning and this blog started as a post to my Fitfam girls to get them motivated and as it kept growing I realized it was just something that I needed to share for everyone to see... some things just need to be given life.  

I want you to know that you are worth it.

The impossible can be done.

You are beautiful.

Your life can be amazing.

You can do hard things.

You can overcome.

You can be happy.

You are worth loving.

You are a survivor.

You are a warrior.

Most importantly.... You are not alone.

Now pick yourself up and go buy some pink fucking shoes and move your ass!

those shoes.

We are ready for Tuesday and wherever the road may take us!!