Going out West where the wind blows tall....

As the last post suggested, we are starting to see the dawn....the problem is, that dawn is 1,000 miles away!!

As you might have seen on the news, we are going to be moving to Colorado to work with the Realm of Caring Foundation for medical cannabis therapy.  You might have heard about the Figi family, Matt and Paige and their daughter Charlotte, they have been featured on CNN and The Doctors...

The Figis were told, as countless others have been, that there is nothing they can do to help their daughter's deterioration.  Paige went online searching for ANY other options to help their daughter, there she came upon a case of severe epilepsy where CBD was administered and WORKED to control seizures.  Thus, a miracle was discovered!

Through repeated research, the simple FACT is the cannabidiol (CBD) that is in cannabis is drastically helping those dealing with a variety of issues, especially epileptic disorders.  Another SAD fact is it is still illegal in over half of the states in the United States.  We are working hard to change that for Tennessee but time is crucial when it comes to neurological disorders....time lost is hard to make up in development and LORD forbid the damage a seizure can cause on the brain.  

Millie in August when her kidneys shut down due to the ketogenic diet.

We thought we were on a good path, however Millie's last EEG is still chaotic.  What this means is that her brain is not communicating effectively in order to properly function.  Despite the horrific events this summer on the keto diet and the outrageously high amounts of Sabril daily, she is still not progressing.  

Millie seizing during her last EEG in Cincy

Girl got style......

PT is going VERY well, don't get me wrong...however there is only so much Millie can do until her brain allows her to use her muscles as they are designed to be used. We have heard many things from doctors and they have not been very positive.  My interpretation of what they are saying is they don't know WHY this miss-communication in the brain is happening and HOW it is going wrong and therefore they can not help Millie.  She is now having not only 20-50 spasms on a daily basis, but also 5-15 seizures which last a few seconds.

Mommy and Millie XOXOX

What we do know is that at 20 months, our beautiful Millie is still a newborn and aside from moving Heaven and Hell we will do EVERYTHING possible to make sure she has every chance available at the best possible quality of life.

So, in an effort to get Millie the help that could work, that is proving in numerous cases to work, we are moving to Colorado.  This was a scary and anxious decision as Millie will not be able to travel as long as cannabis is considered a Schedule 1 federally illegal substance.  We are leaving everyone who has helped, those that are familiar with Millie, to move across the country to a whole new region.  

We are extremely excited and hopeful though :) We are looking forward to the possibility of getting Millie off her seizure meds so she CAN wake up (as her meds sedate her so much) and we can play with her, learn what colors she likes and where her tickle spots are :) Our neuro team in Cincinnati is behind us in our decision, as are a few doctors at Vandy (believe it or not!), they have all been very supportive and encouraging regarding CBD therapy.  

CUTENESS!!!

We have had lots of people ask "How can we help?!" Write your representatives and tell them you know someone who is affected by this law!!  They work FOR YOU!  You tell them what to do, so DO IT!

We are also doing a fundraiser and every little bit helps.  We are in the process of trying to sell Penn's business but that by no means will allow us much.  The first leg will be flying out there with Millie to do all of the doctor appointments and the paper work in December, then just packing and waiting.....

We have truly been humbled by the outpouring of support from family and friends both new and old!!  My heart goes out to those who are in the same situation as we are, those trying to make the move and those who are already in Colorado.  The support from the Realm of Caring family has been incredible, they are such a wonderful group of compassionate and loving people!!  Thank you to Tennesseans for Compassionate Care and NORML TN for their help in making a huge effort to change the laws so that others in the future won't have to move.

Thank you all again SO MUCH for your love, positivity, prayers and support.  Penn and I firmly believe this is all part of our journey through life, we are so blessed to have each of you in it, especially Neal, Sam and Millie!!

Its Always Darkest before the Dawn.....

In the beginning of the last post I vowed to blog more....and it's the end of October....please join me in my laughter!!  It's because at that time I thought things were getting better, but its always darkest before the dawn, and there were darker times to come.

WARNING: This blog is not the best example of my literary genius...it is very rushed and with little detail, but hey, I am "putting" it out there and next post will be better, I promise!

July went about the same....there were hematology follow ups that lead to pediatrician follow ups that lead to ER visits where they would do tests and tell us to follow up with hematology on Monday.... We would and then they would call in the middle of the week say something is off and go do blood labs with our pediatrician...they would call and say things looked worse and to go to the ER....

Neal's BDay at Pancake Pantry, next to the hospital LOL!

We had a homeschool day at Nashville Shores...isn't she sweet?!?!

One of these times she was very swollen, we knew things were off, and the ER did as well but being it was a Friday evening there was nothing to do and we had a hematology follow up scheduled on Monday so they said let it ride...

Millie and Mom in the ER...you can see how swollen she is...

Let me explain that what we/they were watching was her creatinine levels...these show how well your kidneys are functioning...we were really struggling with metabolic acidosis, anemia and kidney function, it was a vicious cycle.

When we showed up at hematology on Monday (8/12), our doc (Dr. Snyder, LOVE her, she is fabulous!!!!) did NOT like what the labs were showing...

Millie was very swollen though her labs showed she was extremely dehydrated, her creatinine was extremely high, signifying kidney failure.  We also noticed at the dr office when we fed her there was blood in her stomach.  Another significant difference was she had gone from 1/4 liter of oxygen that morning to a whole liter of oxygen over the course of a few hours.  All of this into consideration Dr. Snyder sent us immediately to nephrology (kidneys) with a warning that they might admit us (DUH LOL!).

Dr. Jones (our nephrologist) really had no ideas other than the labs were critical, she wanted to get a urine sample but Millie hadn't peed in a little while.  We all decided to admit and take a deeper look at what was going on.

We went to ER and waited, Dr. Jones came by to check Millie's urine bag and there was a tiny bit, but there should have been MUCH more by that time.

We had a room, went upstairs, Mill was now on 2-2 1/2 liters of oxygen and more swollen (if that was possible!).  I went to feed her at 7P (she hadn't eaten since 11A) and there was a LOT of blood in her belly, we called the resident and she felt it was ok to feed so I did.  (my mistake!) 

Luckily, the head nurse that night was VERY familliar with Millie, we had had her several times :) I fed Millie and almost immediately her oxygen dropped, needing 3 liters to keep her numbers up.  (By this time she had not peed in nearly 8 hours aside from the tiny bit we collected.) I started gathering our things because I knew the situation would require PICU.  We tried to help her get comfy to improve numbers and then it went down hill.

I told the nurse that Millie suddenly looked very pale and bloated....and then her oxygen started going from 90 to 80 to 70 to 60 very quickly.  3 liters is the highest the regulators on the floor go so they started bagging her and called a "rapid" (which is basically 911 inside the hospital).

No one was coming....it took FOR. EVE. ER.  her oxygen was hanging in the 40's and so I picked up the phone and called again, the nurse said tell them the room number and tell them STAT.  About 5 seconds after I hung up the team came.  This is where it turned into something from TV.  

There were probably about 20-30 people in the room.  Millie was pale, bloated and lifeless as they were flopping her around on the bed trying to get an airway in her.  I just stood back and watched thinking "this is it."  

Finally after what felt like an eternity but was probably about 5 minutes they had her oxygen and pulse up and did not need to say anything to me, we all went to the elevator to go downstairs (to PICU).

They tried to get a blood sample, it was hard because she was so bloated.  When they finally did, her ph came back as incalculable, what this means is essentially her kidneys had stopped filtering and her blood was so acidic that the alkaline levels couldn't even be detected.  She needed a central line immediately to rectify the ph but in order to do that they had to put her on a ventilator.

A L O N G wait later, I was able to come back in the room.  IT looked nothing like sweet Millie there.  She was still so pale and bloated and had 6 different bags of stuff going in (which over the next 24 hours would take the swelling up), she had lines in and lines out and the breathing tube.

They said they were going to move us to the "red unit" so Millie could have her own team.  We got there and at this time it was 1:30 in the morning, I was drained and couldn't hold my eyes open so I passed out.  They woke me up briefly to get my signature for a blood transfusion (which at that point was her 5th, to be followed by 3 more during our month there).

I woke up in the morning, about 6 and asked how she was.  They said she had started peeing again (THANK GOD!!!) and she had stool, though the stool was extremely bloody.  This day, Tuesday, was critical.  They were monitoring her blood pressure closely, their goal at the time was 30-35.  Those numbers are very low, over the next few days the goal was raised to 40s, 50s all the way to 90s.  They put in an arterial line to keep a closer eye on the bp.  Along with the central line she had a picc line (and talks of a port).    

To be honest, there was SO MUCH going on I'm sure I'm leaving parts out. BUT (big but here, hehe!) each day she got better and better and the doctors were hopeful.  

I couldn't bring myself to take a picture of her because she was so swollen, I did not want that to be the last image I had of her.

It may not look like it but the swelling had gone down a great bit!!

There were discussions about her diet.  They asked if it was something I came up with on my own, I would tell them "No, it is from Cincinnati Children's Hospital and they have several patients on the natural keto diet."  There was talk of putting her back on the manufactured diet but the nutritionist at Cinci felt the manufactured diet didn't work (because her body wasn't accepting it) and the reason she was getting sick on the natural diet was because we pushed the ratio so high on the manufactured diet to get it to work that now that her body was accepting it (with natural foods) that it was too much.

SO, we decided to do a normal diet since her seizures had been well controlled.  THIS has made all the difference :)

Overall, 3 1/2 weeks in PICU (well, one night upstairs during that time but we were sent right back down!) and a week on the floor for monitoring and we are doing well!!  It was a very slow progression but her doc said he was very impressed with how well she recovered from where she had been!!  I don't have many pictures to show of just how swollen she was because I remember thinking "I will NOT let these be the last pictures I have of her!! THIS is not Millie!".

Millie's muscle tone has improved and she is very vocal.  She has grown a TREMENDOUS amount!! She went from 6-12 month clothing (what she wore when we went into the hospital) to a 12-18 month size and we are very close to needing 18-24 month!!  She went from 15-18 lbs in a month!!  She is now 21lbs!!  I knew the keto diet was not a healthy one but WOW!  

(The pictures below are in reverse order =/ so if you want to start from the bottom and scroll up, that will give a better idea of her progress!!)

PT Workout!

Home at LAST!!! Eating like a BIG GIRL!

Bath time Before and After :)

We are getting back into therapies and everyone from our home nurses to therapists are just amazed by how well she is doing :) We are really hopeful in making connections with a foundation in CO called the Realm of Caring Foundation...you may remember them from this story.  

As of today, Millie is doing great holding up her head, she has even been bouncing on a therapy ball and holding herself up!!! She has been pushing up with her arms and working VERY hard!!  She is such a fighter!  

One thing is her spasms have come back :( Thinking (PRAYING!) it is due to her issues with constipation, we go to Cinci Nov 14-15 for EEG and Neuro/Genetic follow up so while we may not get any new info but we can "check it off our list" and move on to other things.

Until then....Lot of LOVE!

XOXO Millie and Mom

A Quick Catch-Up

Haven't posted much, my apologies.  It gets busy and I want to enjoy the good days and speed through the bad ones...as you can imagine that doesn't leave much time for writing.  Or more so, I don't take much time to write.

So let me catch you up :) 

The diarrhea has stopped! Hallelujah!!! WHY? You might ask...we put Mills on a NATURAL form of the ketogenic diet!  Her daily smoothie now consists of chicken, avocado, spinach, carrots, coconut oil and butter...lots of butter LOL! BUT its organic butter...  I take about 3-5 hours one day a week and weight it all, cook it all, puree it all, measure it all and then freeze it.  A labor of love to be SURE, but what the hell, I'd be making her baby food anyway so its all good.  Not only is this food WONDERFUL for her little body, she has also gained a TON of weight :)  Drs were concluding that her slow weight gain was due to neurological issues...not to the fact that the stuff she was eating was making her shit her pants 2-3 times a day...that couldn't have anything to do with it HUH?!  So, once she got this yummy, holistic food in her belly she started waking up :) Her awareness increased, her muscle tone increased and she started vocalizing!  NOT to mention she gained 2 lbs in 2 months!!! NO MORE awful pooptastrophies!  GO MILLIE!!!

Sam made Mill a pretty bracelet, she LOVES it!

"I found my finger!!"

SUPER GIRL!!

"Hello Buggy, wanna play?!"

In addition to that, I guess May-June is worth mentioning....

So Mills went in on May 28th for a bone marrow biopsy for issues relating to her platelet count...

Sitting up like a BIG girl!!

She was such a good girl, did GREAT!  The results came back with low iron but no abnormalities in the marrow...good news!  She was given sedation and slept for the next few days.  We figured it was the anesthesia ..then a few days later, still sleeping so we figured it was because she had gained all that weight.  So we let her sleep.  This went on for about 2 weeks...

Then she started this dry, hacking coughing and needing more oxygen....a little off but not completely unusual for Mill.  Her feet had swollen a bit but I simply figured  this was because she hadn't been moving as much.  I noticed her feet on a Friday...Saturday was "EH", no difference but no improvement. Sunday morning, at 3:32, I woke up to her coughing.  I went to change her diaper and rolled her on her back and her face was COMPLETELY swollen!!!

Like Will Smith in "Hitch" swollen!

And I thought "OH SHIT!!! She's weezing and swollen!! She's having an ALLERGIC REACTION!!!"  So Penn and I rushed to the ER at 4 AM. (Luckily my dad and darling sis were in town so they stayed with the boys) The VERY short of that day was NOT an allergic reaction but EXTREMELY low electrolyte imbalance!!  Millie's sodium was CRITICALLY low...to give you an idea, normal is 130, Mill was 108!  It was the lowest any of the PICU docs had ever seen....

So they started several IVs with all different fluids....oh yeah, we were in PICU as well.  So that was Sunday and Monday...then Tuesday they dropped a bomb on us...Millie needed a blood transfusion!  Her red count was so low due to the imbalance that she could not continue producing blood...very scary to this mama and dad!!  The process was far less scary than on tv though LOL! And within 12 hours her red cell levels were doing well :)

Father's Day in the ICU

finally sleep very well :)

2 weeks in PICU and then we were moved upstairs to the general floor...we were using pill supplements by this time and didn't need the constant iv treatments any more....on Friday (2 weeks later) we were ready to go home!!!  They took out her pic line and we went home!!

Then that Saturday happened... Our long time fluffy companion Cortez "the Killer" passed away...we were heart broken.

We MISS you buddy!!

It was a yucky day so Penn and I decided to go to dinner.  My mom was watching the kids.  There was a storm that knocked out power to our neighborhood, Sam had to call me because he is very afraid of storms (not sure why?) but I talked him through it and all was well.

We continued on, talking with friends and went out on the patio; as I put my phone on the table, it lit up (it was on silent).  It looked like an automated number and I thought why would someone like that call this late (by now it was 9p), so I answered. 

PHONE: "Is this Nicole?"

ME: "It is?!"

PHONE: "This is Susan with EMT, Gwen wanted me to let you know that Millie is being transported to Vanderbilt Children's Hospital by ambulance....blah blah blah......" It all faded out by that time....

So I listened to what she said and called mom.  The EMTs were still working on Mill.  She said the power went out and she was having trouble keeping her oxygen up and she looked a little swollen and blue (given she was working with a flashlight in the dark, bless her!!).  The EMT said her oxygen was stable and they were about to load her up...we ended up beating them to the hospital by about 15 minutes... LONGEST. WAIT. EVER.

As the ambulance pulled up I could see her moving and I can not explain with words the amount of RELIEF I felt at that moment!!!

Waited and waited in the ER...she got there about 9:35P....finally about 2:30A I asked what the plan was (I sent Penn home at midnight) and they said they were going to release us....  I was not comfortable about this decision as her respiratory rate was in the 60s and 70s, her heart rate was also very high, 190s.  Now of course, the ER docs said they felt her heart rate was a neurological issue....in laments terms "Get used to it"...  I KNOW that was not true as she had a "normal" heart rate for a while.  I said I wanted her observed, that she just wasn't acting right and they admitted us at 4A...

The situation gradually worsened Sunday and buy that afternoon Millie's heart rate was 238 and her respiratory was so high she was hyperventilating...

SUPER SUPER long story:  She had a staph infection from the pic line removal.

I am just going to say I TOLD YOU SO!!!  I can only imagine what would have happened had I taken her home and the infection would have completely taken over...  THANK GOD I listened to my inner voice!!!

So, after another week at the hospital making sure that's under control, we went home on 7/1 with a pic line and iv antibiotics to finish.

Today: Millie is well :) She's cutting more teeth, poor baby! 

She went on like this for 45 minutes that night LOL!!

Not sure what is in store now...we took the summer of from therapies, may look to pick some of those up.  We now have a wonderful high chair for her to sit in (thanks to a swap from a high school friend!!) and a play saucer to sit in and look at all the fun things to play with :)  Muscle tone has really increased so we are excited about that!!  Still lots to pray for: we would love for her eyes to be open more, more alertness and movement, increased muscle tone...we are going to start working on reaching for toys and sucking/swallowing.  She is making great improvement on her own on the latter but I'm hoping with some OT she can maybe start taking her water from a bottle!!  Of course, that's like a 6-12 month goal....she'll get there :)

I also started a Facebook page for families in the Mid TN area (and elsewhere) who are looking to help heal the special needs child in their life with a holistic approach.  The page is called Holistic Healing for Special Needs.  I am hoping to meet parents on a similar journey for advice, ideas, support and community.  Please feel free to share.

XOXO Millie and Mom