We Interrupt This Program

   I purchased a domain and am busy setting up a whole new blog look!  Okay... So Hubby is busy setting up my whole new blog look LOL....

I am hoping to launch it Monday! 

Childrens Hospital Day Two

 Forgive the slight delay. Life got a little crazy and sometimes I need to step away from blogging about things and gather my thoughts, and emotions. We learned about a new health issue while we were here, which sent me spiraling a bit. 

First things first. So after keeping her up all night, they came in to do these tests that can help trigger seizure activity.   

One is blowing this pinwheel.... 

Next is this strobe light.....

Unfortunately the test didn't work as good as it should because due to a series of errors, they didn't come do the tests until almost 2pm and she had been asleep for hours. 

( Yes, super frustrating ) 

Then after this its just sitting... lots of sitting. 

Thankfully she had some good moments. 

They have a thing where people can email messages and they print them out and bring them in. She was so excited to read all of the sweet messages.

She got a Hedgehog Beanie baby ( She LOVES Hedgehogs ) 

I took a break from the room for a few minutes to go eat lunch at the Parents room

A group of awesome boys came from Idaho with lunch ( there were a bunch of other sides too #stupiddiet lol ) . They also brought a ton of snacks and drinks , fresh fruit and other things from the wish list for one of the boys Eagle Scout Project   

One of her big sisters came to hang out with her :) 

Dad came and did some science with her using this cool snap circuit kit I found! 

The hospital plays games every day. For the kids that cannot leave their room, they broadcast it on the TV. She absolutely loved this! 

Then if you get BINGO you call and they bring you prizes! 

So overall for her it was a pretty good day!

For me.... thats another story... For tomorrow...

Day One Of Our Stay ....

    They got us to her room, then the nurses come in to do vitals. They get her set up in her bed , then EEG comes in to place the electrodes, and set up the camera and other equipment. 

   Then the Dr came in to discuss everything that they would be doing, and to see if we had any questions.  The plan was for sleep deprivation all night, then to do testing in the morning to see if they could trigger a seizure...

  Then there is just the waiting... and sitting... Thankfully hubby was here during this to help entertain her.  They watched a movie, then they did a craft.....

They brought in SLIME! It was really cool how they had it all separated and all she had to do was mix it. 

They brought in her room service menu LOL. For a kid with allergy restrictions this was a really awesome menu! They had a great selection included smoothies! She ate a lot of salmon and shrimp during the week! lol 

After we got her set up with dinner we went to the Ronald McDonald parents room to register to use it during the week.  They have a entire house off site for families that are from out of town to stay at, but at the hospital they have a beautiful place also. It has what looks like a beautiful family room with a fireplace, bookshelves,  there is a computer area , showers, washer and dryer, and a couple of bedrooms that you can use to nap in for up to 2 hours at a time.  They also have personal hygiene items and other supplies that they hand out.

We had got there at dinner time, and they have a program where people and business can sign up to bring in meals. ( We will be calling next week for a time to give back and bring in a meal ) 

A family had made chili and chips. It was an incredibly welcome sight as the fact that we were admitted to the children's hospital for the week set in, and emotions hit....

We went back to her room, her and Daddy played a video game ( every room has an xbox, and they have a movie and game library ) so I could nap before I set in for a long night of keeping her awake. 

Daddy left at 9pm, and our first night begin....

More tomorrow ...

Life in The Childrens Hospital

This week finds us in the Neuro Trauma Unit at the local children's hospital.  Hippy Kid has had seizures for many years ( possibly since birth ) and has a diagnosis of focal seizures as well as generalized tonic clonic.  She has damage to the gray and white matter of her brain from lack of oxygen at birth , so they believe that is what causes her epilepsy.

So after trying 4 different medication to control her seizures, the last giving her Steven Johnson's Syndrome ( picture's below ) we are trying to get approval for a medical marijuana card, so we can see if that will help control them. 

As you can see SJS is horrible :(  It created blisters all in her mouth so she couldn't eat. ) . It took months to clear up and we had several trips to the ER through it. 

So with that now comes an in patient stay to monitor her seizures. They are trying to find all the triggers, and also trigger seizures so they can capture them to submit to the state for approval for a MMJ card.... This is ridiculous honestly. But we don't want to have to move states and become what they call " medical refugees " just to be able to give our child the chance to try plant oil to see if we can control her seizures without the side effects of pharma meds.  

So here I sit in the Ronald McDonald house parents room, typing this... I am thankful for the quiet space to sit and take a breath away from the beeping of the monitors and the bustle of the neuro unit floor. 

I will do daily posts showing what life is like here for her, and for me as her mom. 

Much Love,

Rhythm, Holding the space, Inner work.... OH MY!!! ( Part Two )

Okay where was I ?..... yes! Holding the space!  Literally to me this this is the most important part of my day...errrrr.....life. Because even if our rhythm falls to heck, as long as I am holding the space, chaos seems to stay at bay.... Well Kelly, WHAT THE HECK IS HOLDING THE SPACE?! you ask?
Well.... for me, it means that I am setting the tone for our home, or playdate, or whatever space we are in.... During playdates, I am engaged with my children, and I am aware of what is going on.... Do I want to not pay attention and talk to the other Moms at the park for just a small taste of social interaction with another adult? HECK YES! Is me ignoring my children as they torment little Johnny or be tormented by little Jenny going to be beneficial to my children... HECK NO! lol ..... Please remember , this is a season of life. Before you know it, they will be running out the door to hop into little Johnnys car, or picking up little Jenny to go to the movies and you will not be there to hold the space... So be present NOW....

Does that mean we don't get frustrated, or angry? Nope. It just means that we as adults, be aware and be responsible of the energy we are bringing into the space, and curb our own tantrums, so that we can prevent theirs.

Melisa Neilson from WALDORF ESSENTIALS   has the most fabulous podcast on holding the space... You can listen to that free here.... PODCAST


When you are present and holding the space, it brings comfort to your children... It shows them you are present with them, and that you are keeping their space safe and secure.....

Rhythm, Holding the space, Inner work.... OH MY!!!

Rhythm,  Holding the space, Inner work.... OH MY!!!

These can be some of the scariest words known to a Waldorf Mom! I see so many Moms start to get nervous and try to tell me all the excuses of why they can not accomplish these things in their home...
I am here to not only promise you that you can, but I will give you some tips to show you how! 

First things first..... Today we will talk about ..... RHYTHM

As Waldorf homeschoolers we use THIS CHART  ... It helps me to keep to a daily rhythm , which keeps the flow of our day, and helps the kids know what to expect, in turn helps foster security I believe.  

Having a daily rhythm is not about being super structured and timers going off every 30 minutes. It's about having a general idea of what will happen each day and building off of that.  Rhythm is really about balance, finding ways to breathe through the day,finding ways to be calm and present and be attentively aware to our lives and those of our children. 

Let's start with the daily color.  This can be used in many ways to help our children connect to the day. I went to Hobby Lobby and bought their solid color t shirts, which is a huge help in stopping any clothing "battles" that perhaps you may have with your kids.  You can also dye or purchase cloth napkins with the colors. Kids are excited to get out that days color and help set the table! 

Next is grain of the day. We deal with food allergies, so my chart will look different from someone who uses wheat in their cooking.  You can set up a pinterest page, or make a notebook of different recipes to use through the week. I have often done batch cooking, and froze muffins, and breads, and prepped puddings and other items for the week, so it easy to grab as we go about our days. 

Last on ours is scent of the day. Not everyone has this. Hippie Kid is in LOVE with incense. So it is her job to light the matching scent to the day each morning.  I noticed that little man really notices this as I have heard him say " It smells like clove, it must be Tuesday! "  Scents have a strong memory base in our brain, and can bring us back to another time and place. I love thinking that one day, my children will be out somewhere as adults, and a scent will trigger them back to a peaceful time in our home. 

I have linked the printable chart I used to make ours up where it says " THIS CHART" ... Have fun with it! Make it yours! Mine is simply an example and is what works for my family. Waldorf is not about stressing yourself out over pretty Pinterest pictures and Mommy blogs.. ( Trust me I have done that lol )  Waldorf is finding beauty and joy in your life, about learning where your children are in their journey , and guiding them along.....

Life as a " Therapeutic Parent " Part Two

My journey continues with the diagnosis of Yaya, who is actually our 4th born child.  This shows how different autism presents in people.  We had been cruising along thinking everything was fabulous... Yaya  was the perfect baby. She slept over 12 hours a night starting at 5 weeks, she never cried. As a toddler she was sweet and kind. She started talking in full sentences ( like an adult ) at 18 months.  She had some quirky stuff that we just thought was funny. Like her obsession with pillow fuzz. She would work to make a hole and pull the stuffing out and rub it on her nose. Things like that....

 So one day one of Captian's support team people were over the house. Yaya was lining up her books on the floor. He noticed and asked when she was diagnosed. I was floored! I asked him " what are you talking about " in my most irritated Mom voice.  He waited until she walked back into her room for more books and then slightly moved one she had already laid out... She came back out and FREAKED.. I had not realized how much of a OCD issue she had until this moment.  We thought she was just tidy and organized... yes at 3.. lol

 So I set up an appointment with our developmental pediatrician , who sent us to a child psychologist , she then diagnosed her with Aspergers Syndrome...

  This is the part where I should mention that in-between these two getting diagnosed, my husband was also diagnosed on the spectrum.  This happened because as we are reading about autism he keeps saying " well thats not odd, I do that "  many , many times. He had been misdiagnosed his entire life. From ADHD, to OCD. He finally now has an answer. It didn't change who he is. But it was an HUGE help in helping him ( and me ) understand why he does some of the things that he does.

 So now we are two for two... Life is rolling along, we have a excellent support team and service in place... Then we find out that hippy kid will be joining our family.

 My pregnancy is cruising along well... and by well I mean I have morning sickness ( WHY do they call it that... It lasted all freaking day! )  anyhoo... I am so sick 24 hours a day.  We are looking forward to her due date of Nov 14th... June 25th is hubbys birthday so we go out for breakfast and I come home to nap... I am woken up by hubby to tell me something that will devastate me in ways I am still dealing with....  My Mom died....

  She was only 52. She had a heart arrhythmia they told us and she just died... Woke up, walked across her bedroom and died...  We lived in another state, so we packed the car and drove as fast as we could to be with my little sister ( who was 16 at the time ) and to take care of everything. We didn't plan on staying long, but a series of events lead us to decide to move to help care for my sister who was starting her senior year of high school.  Exactly one month after my Moms funeral, we took the kids to the Utah county fair to get our minds off everything.  We walked in, and purchased tickets for some rides... We ended up on the hay wagon ride first... to make a very long story short, something happened with the ride and we were forced to jump off at about 35 MPH. I ended up landing on my butt in the middle of the road while I held Captain who was 4 at the time. After being checked out at the hospital, I seemed pretty okay considering... Little did we realize

  So time continues to click by.  Hubby comments how I am not very big with this pregnancy. I have of course noticed that also. I am thinking, well thats actually awesome!  I go in for my 32 week check up... something is wrong.. very wrong... My blood pressure is 183/110... They admit me immediately.  They start doing some tests and we wait...  While I am sitting there, a crew of people come in and start rushing around.. The Dr explains that they cannot find a heartbeat and they believe hippy kid will be born asleep and need to do an emergency c section immediately as my BP is out of control... I don't even have time to process it. As they are rushing me into surgery, I apparently started to have seizures and have no memory of anything...

 I wake up and think I am dead.. I am confused because heaven doesnt look like I expected. Then I am super confused to see my husband and children there... Hubby explains that I am not dead, but I am on a whole lot of pain meds... He also tells me how they were able to revive hippy kid...

 Hippy kid was born totally blue and listless... almost 12 years later its still very hard to read her paperwork and the description of all of this... After a team of angels worked on her, she went from a 1 on the apgar to an 8 in fie minutes... She is truly our miracle baby... She was a whopping 2lbs 6oz at birth. She only did 6 weeks in the NICU and came home right at 4lbs... She is a fighter.. she is still a fighter....

  Its been a long road but each year gets better. The ER trips are less frequent, and the hospital stays are becoming a fuzzy memory... Hippy kids current diagnosis are ASD ( notice a trend. We are 3 for 3 ) ,  Epilepsy, and Hypertonia.  Her past diagnosis are many.. Like I said.. She is a fighter!

 The next part of this story... " Foster care, PICA, attachment disorders , oh my!"