Saturday, October 12, 2019

Update

I haven't been in here in what feels like forever.. I want everyone to know that Peanugga has been updated to Sasshole and is doing great!  She's keeping me and everyone else on their toes.  I have two blogs that I was trying to keep separate but then it leaves me doing neither so I'm combining everything into one.

Future updates on the daily shenanigans in our life can be followed at kathyantics.blogspot.com


Tuesday, May 15, 2018

Hello again....

It's been a really long winter... It's taken us the entire winter to get Madilyn back to a relatively stable place after attempting school again last fall.  I actually took her to the grocery store the other day to get a few things and it went really well and she was very proud of herself.  I never imagined that running to the grocery store would bring me to tears.. at least this time they were happy ones.

We never ever thought this is what life would be like raising Madilyn.  In some ways it is soooo much better than we ever expected and in other ways it's soooo much harder than anyone could ever comprehend.  I always thought it would just get easier and easier as she got older and let me be the first to confirm that thought is a totally not even close to true.

On the good side she learned how to walk on her own last fall/early winter and is cruising everywhere in the house on foot now.  That also means she's cleaning off tables and counters and she has this incredibly strange obsession with the window bench in our kitchen.  It's not allowed to have anything on it.  When she gets beyond the gate the first thing she does is throw everything off that bench.  Then she moves on to the shoe carpet and if the door is open she throws everything down the back porch steps, and she's not happy until absolutely everything she can reach is thrown out there.  Then it's onto the dog food dish... ugh, who needs a sensory bin when you've got a dish full of dog food?

I'm currently hiding in my dining room (on the other side of another gate) and she knows I'm in here and is mad.  She stands at the gate and gags herself until she vomits in hopes of getting her way.  The reality of it is I'm not even sure what she really wants.  I never thought that in my 40's I'd be playing a never ending game of can you guess what I want?  or how I feel?  or what's wrong?  Imagine spending you life with the never ending 1-3 year old.... right?  You are currently thinking you'd probably go insane.  Some days it feels like that is a distinct possibility and other days are wonderful.  Cognitively we believe she understands way more than she is able to communicate.  You can see the look of recognition when you tell her something but then you also get the absolute frustration, aggressiveness, anger and sometimes tears of sadness from both of us when I can't figure out what she wants or she can't figure out how to make me understand.

We are currently working on getting a distinct yes or no answer from her using green (yes) and red (no) bracelets.  Every new skill takes an eternity to master for us so it's a constant work in progress but the hope is that it will at least give her those 2 definitive choices and eliminate a little bit of confusion and hopefully a few meltdowns.

We are hopeful that we can start getting her back into some "normal" little routines like being able to run to the grocery store again or maybe even the dreaded Walmart.  She is back to doing very well at her outpatient therapies so now it's time to start trying to add back some everyday life things.  Our hopes are that over the summer we'll get back to where we were before attempting to start school last fall.  We are medical homebound for school next year so we'll hopefully be adding the teacher into our home once per week and eventually therapists.  We have to go at her pace though because we can't spend every winter attempting to undo the medical damage and regression that we have had the past two years.

I won't lie.. I've always longed for her to be able to go to school and for it to go very well. The fact that it does not is really quite the grieving process to go through.  We typically live in the moment with Madilyn, it's the only way to maintain our heads above water... but school was a huge dream for me and it's been shattered and the grieving process has been long and very difficult.  As always though, in the end we adjust our thinking, reassess our dreams and be thankful for how far we've come and what we have instead of what we don't.

It's getting nice again and I'd love to say we've got some new little pink shoes to show off but we don't ... not yet (truth is she's still wearing the same shoes from 3 years ago)... but soon because after all.... life is all about the little pink shoes.

Wednesday, October 25, 2017

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.


Friday, September 22, 2017

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....

Thursday, May 18, 2017

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....

Tuesday, February 7, 2017

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....

Monday, January 9, 2017

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.....