Where do I begin???

Where, with a child like Madilyn, do I even begin to explain to people how fragile her life is?  Where do I begin so they can understand that just because they "don't see that" that it doesn't make it not very real for us?  I see the look of shock and disbelief on people's faces when I say she has no cerebellum, it's just a fluid filled cyst. She shouldn't be able to breathe or move much less talk or walk or understand anything that she does.
How do I make them understand the fear that I'm constantly trying to keep under wraps that one day I will wake up and she'll no longer be with us.  Every time I read a post about a Dandy-walker child that went for a nap or to bed and was fine and never woke up my fear takes over.  It happens way too often and nobody talks about it.  It's devastating to watch other families we've met online say good-bye to their children with no rhyme, reason or warning.
How do I make someone understand how much extra effort and stress it takes Madilyn's little body to just function each and every day?  Add to that her Adrenal Insufficiency and complex X-chromosome abnormality and we are in completely unchartered waters. 
How do you make someone understand that there is not another person ever to have her complex X-chromosome abnormality and it is not compatible with life.... so how is she alive still at 6 years old?  Nobody knows...
We have genetics specialists around the world and 17 specialists here and they don't know, they don't understand how or why.... she's rewriting genetics history... she's disproving hundreds of years of genetics research.... how do you make people understand that when they just look at you like you're nuts when you try to explain it?
How do you make someone understand that something as simple as going to school in a very controlled and well thought out environment was killing her?  When their main worry is what did they do wrong and why can't she come just one day a week for the teacher time?  Why do I have to involve our medical team to attempt to make them understand that I'm not nuts... it truly is our life.  It really is too much and not just a parental wish to keep their child home.
How do you make someone understand how much work and time it takes just to be able to get her through the grocery store without being overwhelmed?  How do I get them to understand the devastation of finally reaching that point and then having it all taken away because we tried something new and pushed her little body too far??  How do I get them to understand the grieving process of having to start to learn those things all over again just so we aren't prisoners in our own home?
How do I get them to understand how upsetting it is to watch her struggle in an environment that previously was her happy place?  A place outside of our home that she was thriving in and now is struggling because we tried school?  How do we get them to understand that we're not making it up and we're not doing it to inconvenience them and it truly is detrimental to her health to be in that environment even when we/they are doing everything right?....it's simply too much for her....she doesn't fit in their tidy little box of diagnosis and "kids we've worked with" and never will.
How many times will I have to repeat myself over and over and in the end they don't understand anyway?
How do you get them to understand that when I say we have to pick and choose our battles it's not a simple choice?  Some days hair brushing and taking footie pj's off is the end of the world and a battle we don't choose.  Some days are full of non-stop playing but more often than not they are like today... she alternates laying in her playroom and the living room.... she sits and cries and yells at me while holding up the corner of the pink yoga mat that she has claimed as her own and she doesn't have the energy to drag it into the other room herself.... but it's a must have for her to lay on with her pillow and her minnie mouse blanket.... so I drag it from room to room and set it up and tuck her in and pick the right cartoon after a million tries and I wait for her to smile and ask me for kisses and then I hide in the other room and cry....
I cry because of the guilt of pushing her too far because I wanted something normal... I wanted her to go to school... I wanted an occasional break... I cry because sometimes no matter what I can't figure out what she wants or what she's trying to tell me.... I cry because I'm exhausted and I'm tired of trying to get other people to understand... I cry for all of the "normal" things that we will probably never do that I had previously taken for granted.  I cry.....
and then I move on...I get out the blocks and puzzles that she can do while laying on her precious yoga mat and I lay on the floor and I play with her and I love her and I send out a little wish that I have many many more opportunities repeat this struggle because it means she's here with us and whether people understand or not, her being here is the most important thing and I will protect her and advocate for her until my last breath...
I always thought it would get easier as she got older but that most definitely is NOT the case... the struggle is real.... and so are the little pink shoes that have kept us going for the past six years.. after all.... those little pink shoes are what life is all about and if they could simply understand that life would be a whole lot easier.

Can't we just be kind??

To the judgmental lady in Walmart today:
Do you know that my little girl, (the one you referred to as an ungodly brat) is a medical kiddo with severe sensory issues?  Do you know that we had just been to therapy and that being in Walmart (or any store/public place for that matter) is completely overwhelming to her?  Do you know that she doesn't have enough vocabulary to let me know that she's completely overwhelmed and can't handle the situation around her?  No, you don't.  Do you know that I pushed her too far by simply taking her in the store?  Do you care if she's okay or for that matter if I'm okay after you watched her slap me so hard it instantly brought me to tears in the checkout line?  Do you know that I am a mother to 7 children?  You know, me, the same woman you said should never have kids because my child slapped me.... I know you didn't say it directly to me but you definitely said it loud enough for me to hear that my child's behavior and my reaction to it were not acceptable to you.  I wish I had the patience to stand and explain why that even happened but today we are tired so I simply turned and through tears and told you to "Shut the fuck up and mind your own business"  I also told you that you shouldn't judge what you don't know and that I would give my life for this child and that if you had nothing nice to say than maybe you should simply keep your mouth shut.  I also should have told you that we have 17 doctors, 8 therapists, an EA and more nurses than I can count all trying to help with the situation otherwise known as our life and they are much more qualified than you to help so just shush.

It's not often that I encounter someone that loud or outright mean about Madilyn.  Typically I would just smile and move on but the past few weeks have been exhausting and I just couldn't today....

Please please please think twice before you openly be so harsh to someone... especially when you have no idea what they are dealing with... Kindness is completely free....

Changes changes changes

Boy life has been crazy here!  So many changes.. Since her adrenal insufficiency diagnosis Madilyn is doing pretty good. She's making HUGE progress at therapy in all areas and it's awesome awesome awesome to hear all of her little words coming back!  (even if some of them are sassy..)

We had our 3rd shunt malfunction in early April... they scare the sh*t out of me!  She recovered beautifully though without any complications.  The downside is that her risk of another malfunction is 20% higher for the next year because they've been in her head messing around with it... ugh.. our only other 2 malfunctions were 6 months apart in 2014.  I can't explain the overwhelming feeling of fear that takes over knowing that a doctor is messing around in your child's brain, it's not something I will ever be okay with.

Seasonal allergies are wreaking havoc on the Peanugga right now and causing feeding issues, (at least we hope that's all it is) that may land us inpatient briefly if we can't get her gut to cooperate... ugh

We've recently had a formula change to attempt to get more calories in her.  Last summer Madilyn was up to 36 pounds and right now she's only 31.  With being so sick prior to the adrenal diagnosis last fall she lost a bunch of weight and we are unable to get it back on her.  At least the problem now is because she's so active!  Her GI doc put her on a higher calorie formula so we actually get to decrease the volume but she gets more calories and hopefully some weight gain.

Now the fun stuff!  Madilyn has a new sidekick...:  Meet Goose!

Goose is a purebred standard poodle and is Madilyn's best friend and service dog in training.  We are currently almost done with our first obedience class and are working with a local training agency and the C.A.R.E Dog Coalition to do all of our training.  Goose has already started coming to her therapies with us and when we go to Children's for appointments on June 5th he will be coming with us.  Madilyn gets so stressed out with the medical stuff that Goose is already being trained in deep pressure therapy (he literally sits on/hugs her) and it's very calming for her.  She can go from crying an puking to giggling within a minute or two thanks to Goose!  The bond between these two is absolutely amazing to see.

I'm procrastinating as usual on the school thing... we need to tour a local special needs program and see how willing to work with us they are.  I wish transition wasn't so hard for her (and us)... I think we may both need some new little pink shoes for that one....

Adrenal Insufficiency sucks

AI would suck enough if you could talk and explain exactly what you feel to someone... AI in a child who can talk would suck more... AI in a non-verbal, cognitively impaired child is horrible.  It's one giant guessing game about how she feels.  Up dose a little to much and she's wound tight, under dose a little or try to wean and she's aggressive and the vomit reappears.   UGH!!

Her endocrine doctor wanted us to wean back a little on her daily dosing because it's technically at an adult dose but it's apparently what her little body needs right now.  One minuscule little decrease and the big circles around her eyes are back, the vomiting is back and she's sleeping horribly.  We'll up dose again for a while and try again.  I feel like the little engine that could sometimes, constantly chanting to myself "I think I can, I think I can".  It really sucks sometimes knowing that how she feels and is able to function is all dependent on me being able to read her needs since she is unable to tell me.  I know I have big shoulders but it's really heavy sometimes.... especially at 6 am when she's kicking my ass and being an aggressive little monster and I don't know how to help her.  This morning it consisted of her getting baby gated into the play room.  She clocked me in the face and I just needed to separate myself.  She was able to sit in there and throw her toys everywhere and yell (I'm pretty sure our neighbors think we are lunatics) for over an hour until her steroids peaked and she finally calmed down. *Note the completely trashed room below

We tried going back to school because Madilyn loves to be outside the house but it didn't work.  She gets so overwhelmed just pulling up there.  The school was willing to work with us this fall but with this attempt to go back they were "willing to work with us" but not really.  Not in any way that is appropriate for Madilyn or her disease. She scares them and they could no longer hide that.  I get it, she used to scare me too (hahaha)... she's not obligated to be in school until fall so we'll see then if it's in school or home based, either way I refuse to ever force another person (teacher or otherwise) to be responsible for my child when they are uncomfortable with her.  Her life depends on their ability to care for her.  In the meantime we are impatiently waiting for the call from the rehab facility to start outpatient therapies.  Physical, occupational, vision and speech... I think the regular weekly outings will be good for us.  They're working on aqua therapy too but we may have to travel to Milwaukee weekly for that one.  I think it would be worth it though so we'll see what they decide.

We are definitely enjoying that since our move we are able to get out in the stroller at this time of year for walks.  It's so peaceful to go down by the lake and being outside anywhere is Madilyn's favorite thing to do. Here's some pictures from yesterday's stroll:

Time for me to stop hiding since the lovable little miss has decided to finally surface.  It's time to build some puzzles and maybe shop for some new little pink shoes....

True Fears

I really have no words to explain what happened tonight.  We dropped Shyanne of at driver's education and barely made it around the corner and the vomit started...she was mad cause Shyanne got out of the car??  maybe??  she was upset cause it was dark outside and her DVD wasn't turned on??  carsick??  I don't have a clue but oh the vomit... the thick, choking vomit... she can't breathe, she can't get it out and I'm caught in traffic trying desperately to find a place to stop....

I stopped right in the middle of North Ave....half in traffic half out...it's snowing and slippery and there's so much traffic by the school it's chaos... I pulled over 3 times in less than 2 minutes...we came home and scared the daylights out of my hubby who's upstairs sick.. we were supposed to be gone to Walmart to pick up some crackers, 7 up and a few other things and instead we're back in the door 10 minutes after we left with Madilyn yelling her head off at me and me sobbing, yelling, begging her to stop puking.

Madilyn dying from choking to death while I'm driving and stuck in traffic is one of my biggest fears... I've watched her turn blue right in front of me when we were in the house...when the puking starts and I'm in the car alone with her panic ensues.... I try to keep my calm the best I can but tonight I lost it... I drove home the last few blocks sobbing, yelling and begging her to stop..... it makes me never want to leave the house alone with her again.... I will, because I have to but it leaves me with this pit of fear in my gut that makes me nauseous and I somewhat hold my breath just waiting....

I've always been a deal with it and move on kind of person...a don't dwell on it kind of person... I still don't dwell but the PTSD doesn't always let me move on either.....

The truth behind the new diagnosis

We've been quiet again... for a really long time...and here's why:  I don't know how to put into words that my heart and head have been telling me since last December that we were slowly watching Madilyn being taken from us.  Something was brewing and slowly taking over her little body and she was slowly fading away.  It's devastating and beyond any words that I had/have to explain what it's like to watch your child dying.  I gave only the little glimpses on Facebook of the good moments.  I didn't let new people in and shut out the others.  We moved to another state to be closer to her doctors in late July and progressively watched her deteriorate.  My child that LOVED people and shopping and busy places couldn't leave the house without major major anxiety attacks.  Walks in the stroller became our only out.  No loud noises, limited people and only outside or in our own home.  Even in our own home at times it was too much for her.  She became super aggressive and I started getting questioned by doctors and others about bruises and other marks on me, I would burst into tears any given moment and even went on antidepressants because it was so overwhelming.  She stopped sleeping, staying up for days at a time and when she did give in it was only for an hour or two... it was like living in hell.... a hell you don't want anyone else to know about simply because it's too hard to deal with the constant pity and questions.  You start to feel a little ridiculous constantly repeating "I don't know" when asked the reason for her decline.

In early September Madilyn ended up sick with croup... after that Decadron injection at the hospital it was a week or so of heaven.  She was sick but I could see Madilyn... my happy, non-aggressive, loving life child... which was weird because she was so sick.... fast forward 3 weeks and we end up inpatient.  Madilyn would have an anxiety attack at school or an outing and not tolerate her feeds, it would start vomiting and I couldn't transition her back.  It happened again the weekend before Halloween.   We had been struggling desperately to try to get back on track since she got sick in September and just couldn't do it.  I broke down to our Special Needs medical team that something was horribly wrong and that her doctor's were missing something.  It was the first time I spoke the words that no parent ever wants to speak.  I told them that my gut (and my mommy heart) told me that she was dying, slowly, painfully and all because they were missing something. (Not them directly but her entire medical team).  At this inpatient stay she was diagnosed with Cyclical Vomiting Syndrome.... I loudly disagreed with this diagnosis from the moment it was given... more meds were added and I argued that all they did was mask whatever the real problem was and they were wrong.... my shouts fell on deaf ears.... we were sent home.

After a day or two of being home Madilyn was the worst she's ever been and I posted pictures of her on Facebook... I gave the world a glimpse of just how sick she was and that glimpse saved her life.  A friend (and medical mom) messaged me and started asking questions... then I heard those words.. Adrenal Insufficiency.  I knew Madilyn was in a really really bad place and we had steroids here since we regularly use them for her respiratory issues.  Steroids are what is needed with adrenal insufficiency, I gave them to her.  Within hours it was like having a completely different child.  She went from completely lethargic and hazy to up and wanting attention, she gave us a glimpse of Madilyn.....the next morning I messaged our Care team demanding testing for Adrenal insufficiency... the day after that I messaged and calmly explained why I wanted it.... they contacted our Endocrine Dr. and the first test was scheduled.....when the Dr called with those results she said they were okay for a normal situation... then I explained that when the labs were drawn Madilyn was hysterical... to the point of vomiting everywhere hysterical... that's when she scheduled test #2, which Madilyn failed miserably.

The stim test that gave us our Adrenal Insufficiency diagnosis also pushed Madilyn's little body too far and we ended up inpatient.  It's amazing how quickly we could watch Madilyn reappear right before our eyes super quickly with the introduction of hydrocortisone on a routine basis.  Adrenal Insufficiency is the lack of the body's ability to produce cortisol, a steroid, that you cannot live without.  Every time you are sick, stressed, injured etc your cortisol production increases to combat whatever is going on.  Madilyn's body doesn't do that.  Her Endocrine very blatantly stated that Madilyn was only still alive because "for some reason or another some doctor has always thrown steroids at her when she's been sick and it's the only thing that has kept her alive".

Adrenal Insufficiency can be fatal and that's the first thing they repeat to you over and over... Madilyn now wears a medical ID bracelet and we carry an emergency injection with us everywhere we go.  She also receives oral steroids 3 times per day, every day and more when she's sick to compensate for what her body does not do naturally.

Adrenal Insufficiency actually gave us answers to every single unanswerable medical issue Madilyn has had since our very first med flight in February 2013.  It explains the vomit, feed intolerance, sleep issues, anxiety, aggression, her regression (it causes memory issues and brain fog), her hypoglycemia, the circles around her eyes...ABSOLUTELY EVERYTHING!  This diagnosis and proper treatment have given us our life back!  For the first time in years I feel like we can breathe... We have been out shopping... out to dinner at a super busy restaurant on a Friday evening and Madilyn has done awesome!  It shocks me how quickly steroid replacement therapy has given us our child back.



We have a lot to learn and when she gets sick we will need to be inpatient for IV help but that's ok, that's totally livable... for the first time in a long time we are starting to plan ahead a little... we are excited to return to school and to educated as we learn about Adrenal Insufficiency and how to live with it.  I'm thankful to my friend for reaching out to me and giving my child her life back.. I'm thankful that I can come back to the blog and keep you all updated on the sassy shenanigans of the Peanugga...  and I'm thankful that her medical ID bracelet is pink... just like her new pink shoes..:)