Wednesday, March 26, 2014

Adrayn Love

Did you know today (3.26.14) is Epilepsy Awareness Day?

Here I am... Trying to holistically work with and hopefully heal my sons epilepsy. I would be more than open to medical marijuana, but it isn't legal here in MN... yet.

I am typically strong in dealing with this, but today something new happened. 
Adrayn had his first seizure while I was driving him and his sister to the grocery store. I was on the freeway when I saw (more so, heard) him start to go into one, and with no exits in sight, I was forced to watch in my rear view. Finally, I couldn't wait any longer as it is crucial for someone in a seizure to be on their side. I then pulled onto a median, ran back to the back seat, and turned him... embraced him... helplessly. My mind was racing... the freeway traffic zipped by... I was all alone... helpless.
Then again... for the first time, he had another seizure in the same day (9:45pm). I am so tired... So sad. I cannot see him like this anymore.



Honestly, My husband or I really don't want him to do the prescribed drugs.... they aren't guaranteed, and if you change your mind (like seizures don't stop, or get worse), you cannot easily take patients off, then they add MORE medications... and ALL of these prescriptions have major side effects... Some worse than others, but all no doubt hard on a little one's growing body. Not a great option. He is our baby, we want the best. Like any parent would. I am getting desperate at this point. 

I was truly hoping that Governor Mark Dayton would approve the bill (HF-1818) by now... It's a hot topic that is severely needed in MN, for not only my son, but many other kids and cancer patients. 

I am getting angry that this choice is up to a man (whom I hopefully don't regret voting for) that doesn't have to see his own child go through this... You are lucky Mr. Dayton... But don't  turn a blind eye on your people.

Please show your support of this bill (HF-1818) by passing this blog along to your friends. 
We can make this happen... It must happen... for Adrayn.... my son. 
I will always fight. Please join me.

Please send Gov. Mark Dayton an email regarding medical marijuana directly, here's the link.


Mucho Love,

Mama Dray

Friday, January 17, 2014

In the name of love.

The day to pass is here and gone... I sat through 4 weeks with a heavy heart... and I still wait, but I know that this day (now three days ago), at 2pm my son did NOT have a seizure... this means they are not getting closer... (which many told me would happen). So... GOOD news... I hope! If he has one tomorrow, or next week, month... I will know that he went longer than he previously did... and hopefully that will give me some comfort.

I need to remind myself that it is hard to be in that moment... utterly helpless while your child is having a seizure... I would easily take his pain, and his ailments... if I was given the option... but I am not. I must watch him have a seizure... helplessly on the sidelines... wishing that it would be over... now... now... NOW! His little body twitches as his eyes roll back... his little fingers are stiff and flexed... his little lips turn purple and the breaths seem to struggle to make way into his tiny lungs...  I must watch, and wait... hoping the whole while that every choice my husband and I make is the one that will be the best one for our son... the one that will lead him to be his optimal self.

After that emotional roller-coaster is complete come the hugs & overbearing love. After a few days to a week of that comes the strict diet (which he IS on), is updated, tweaked... revised. Lastly, some form of acceptance and hope that this will pass takes over... Well, I am to the last phase, and will continue to be there for many weeks, and months, years and (hopefully) FOREVER.


In the meantime, my husband and I did our research and went with our gut... we're trying the all natural approach... What are we doing in this all-natural seizure treatment you ask?

While Adrayn previously ate quite healthy, we are now on a strict gluten-free, dairy-free diet (very Paleo-like). With foods including: bone broth, grass-fed/organic meats, many RAW veggies and limited fruit with a teeny, weeny exception here and there for some processed items like, liverwurst (his favorite) and grass-fed hot dogs. I am getting much better at finding his "likes".... such as: gluten-free crab cakes, cucumber boats with tuna salad, carrots with cashew butter... it's taking time, but there are some *gems* in there.
He is also taking Epsom baths 2-3x a week, a drinkable magnesium supplement and a children's vitamin every morning, that seems to be pretty potent as it has turned his urine BRIGHT yellow! Beyond that he has met with a Homeopathic doctor (Cilla), and she has him taking some homeopathic remedies daily, we are also seeing our child-friendly, chiropractor, Dr. Joessa on a weekly basis, and to button this all up his Massage Therapist mama is doing her best to keep him in balance and relaxed using a calming lavender balm for nightly massages!

We are also "sitting" on a few different options that many wonderful friends and groups have shared... we just didn't want to overwhelm him with too much. First we'll see how this regimen works.




Adrayn has two Neurological visits coming up on 2/21/14 (HCMC), and the day before his 4th Birthday 3/13/14 (Children's Hospital). I am really hoping to report NO news to either of them, and show them that this is all based on his diet... hopefully it will be a testament for ALL Doctors to look into food nutrition as an initial therapy - rather than phoning in a prescription (which only invokes fear to clueless parents). In our experiences Doctor's don't consider diet and/or supplements prior to giving them prescription drugs (which are reported to damage their little livers and kidneys). It's just a sad reality. Don't get me wrong... I am not saying that I wouldn't give my son these medications IF he needed them, I am just saying that ALL options should be looked at, and the Medical institution is good at... Well, medicine. Adrayn is VERY fortunate to have some amazing parents that are willing to do the work!

I have learned SOOOOO much from groups, peers, friends... THANK YOU ALL! It is an ever-lasting knowledge that I may use someday to help other parents that are thrust into this fearful situation. 

Just breathe and know that you have options. 




Thank you all for your support, it has helped me to be stronger for my little guy... truly.
I will try to keep up with documenting Adrayn's condition, and hopefully only positive news to come.

Lastly, we really must LEGALIZE MEDICAL CANNABIS!

MUCHO LOVE!

Monday, December 30, 2013

Sloane Bologna

Sloane,

Wow... I cannot believe that you are heading towards 11 months old!
With so much going on one can easily become lost and overwhelmed... but, you bring be back from the insanity... always.
You have begun to go from a "few" steps, to full blown walking in days... Your little baby jeans move so adorably with each step.


You always amaze me.
I am one truly blessed mama to have you in my life.

I remember when I had my tarot cards read for my 35th Birthday, the reader stated that you would be an amazing person.. actually the word she used was Buddha. She also stated that your brother Adrayn would be a Healer... and I can see that happening with all of his experiences with Doctors and Hospitals.

Back to you... my beautiful Sloane. So patient with me as I tend to your brother's needs. You have the most genuine and gentle soul I have ever come into contact with. Full of hugs and kisses... following your big brother around so curiously.
You love ANY food that is placed in front of you. You are not picky whatsoever like Adrayn was. One area that you could stand improvement in would be the car... you despise being in the car... anything over 10 minutes and we hear the ear piercing wail that could easily render one deaf.

You love to co-sleep with us, and feel your mama nice and close... you nuzzle your way right in towards my warm breath.

I love you so much. I couldn't have been more blessed to have you in my life.
xo,
Mama

Wednesday, December 18, 2013

My Tiny Tim

Our son, Adrayn, had his second seizure today... well, as far as I know it's his second. This was also the day that my Mother-in-law had purchased tickets for Jeremy, myself and my two amazing step kids to see "A Christmas Carol" at the Guthrie. After plenty of rest and cuddles, Adrayn did get back to his old ways, so we made the call to keep with our plans and see the play that was so generously gifted to us (with a cell phone in my sweaty hand the whole while), and left the wee ones in my Mother-in-law's very capable hands.

I have seen this movie, and smaller production of this play before... however, this time it resonated with me more than ever. My little Tiny Tim... my little Adrayn. I watched Tiny Tim at the dinner table with his family... he was such a positive soul , creating smiles all around. Then, again later as they carried his miniature casket through the town with sullen looks... and lastly, when Scrooge snapped out if his greedy, lonesome trance and they said Tiny Tim would live and grow to do many wonderful things... and I cried... no, I balled... my little Tiny Tim... my Adrayn.

Being a parent isn't an easy task... if I could go back in time and re-do it all, of course I would... but before doing so I would breathe the air deeply... the air, free of heartache... that only being a parent, no... only that loving someone with all that you are, can bring...
Yes, being a parent brings much joy, but the heartache is almost unbearable at times.... times like these.

Please love your little ones... let them know you love them endlessly... say it daily, hourly... I will never breathe air again like I once did, and that is okay, but if you can... please take a big breath for me.

We have an EEG on January 2nd... we hope for some answers. In the meantime we'll be trying the Ketogenic diet (supposed to work well with child seizures), and chiropractic visits. Also, it never hurts to ask... please keep Adrayn in your thoughts and prayers.



Mucho Love.

Tuesday, November 5, 2013

Reminder

Thank you universe!!!
I was feeling a bit down in the dumps due to lack of sleep and finances... but life has a subtle way of reminding us that we are awesome... right when we need it most.

Thank you to my wonderful client for the kind words... your timing was perfect, and I literally got a re-boot after a sleepless night with my little teething babe.

Lastly, but never least... thank you to my husband for reminding me of how awesome we are together. I was reminded all over again how much you love me as you sang along to "lady" with all sincerity in your beautifully tone-deaf octave's.

I adore you my cheese-ball.
I am, and will always be... your lady.



Look for your reminder today. It is there, you just need to be open to receiving it.

Mucho Love!

Sunday, October 27, 2013

Baby girl...

 Sloane Bologna (Boppa's nickname for you),


Wow... where has the time gone?!
You are nearing 9 months old already!


I fall more in love with you more each day. From your smiling face in the morning... to your warm breaths as you sleep. My little Sloane.


I must admit that I was a tad fearful of having you... a little girl. I was raised around boys, and felt more at ease around boys... I knew that you would change me, as your sister has... for the better.


I hope to have the mother/daughter relationship where you look up to me as a guide, trust me like a dear friend, and laugh with me like a carefree child.
I wish us a beautiful relationship, but also a beautiful individuality. I don't want to change you, but assist you in blossoming into Sloane.


You are now eating avocados, bananas, all baby foods, and wafer crackers. You are currently still being breastfed and take formula when I'm away at work. I would say that your first word was Mama... but that's up for conjecture as it always seems to be unintentional (doo da MAMA sssss dooo)... but hey, we'll stick with that for now. :)


Papa likes to set you on the toilet at 10:30am every morning so you can "expel waste", and it is actually working... well, 50% of the time. The other 50% we still get you to the toilet, but just not as timely. You seem to love it, and I think you will be quick to pick that up.
You sure are a quick little learner! You are constantly pulling yourself up to tables, couches, and even a leg! You have dared to stand on your own (by 8 months!), but seem to not be in a rush toward walking freely.


Take your time little one... I have all the time in the world to watch you grow.


I am so blessed to have you in my life little one. Thank you for choosing me as your mother.
You are amazing.
I look forward to all that you have yet to show me as I have already learned so much from you.


Mucho Love,
xo-Mama


Friday, October 4, 2013

Turn, turn, turn.

Another year of life is looming in the coming week... I'll be turning the big 3-5.

This year (more than any other) I am taking the time to reflect. To really soak in my current position in life.

I am reflecting with questions like:
What do I give?
What do I take?
Who do I choose to surround myself with? Is this a beneficial relationship?
What I have I failed at, and in turn, learned?
What can I do to better my situation?
Do I pause enough?
What do I want? Where do I want to be?

This particular year I have taken on quite a bit more than any other. I've had a lot to tackle from my daughter's pregnancy and birth, my son's many ER visits, my step kids schedules, my teeth, my business, my home, and my extended family... the list goes on and on... and not minor issues at that.

Here I am, reflecting... I look with these unbiased eyes (well, as unbiased as I can be) and see... with clarity. I see that we are all lost... trying to figure this whole thing out.
Still...
Always...

The only thing that will separate you from me in this world is how we react, and what we take from our lessons and reflections (if we choose to pause and reflect). Their aren't any right or wrong answers, but maybe... more thoughtful and reflected upon ones... and, that's what I want for myself. To be honest, thorough, and genuine.

In the end, I hope that I am reacting the best way... the way that creates the least harm and the most love (for others as well as myself). The way that inspires and makes hearts beat with joy...
This is the kind of year I want for myself. That is the kind of year that, in reflection, I deserve.

For my Birthday in the coming week I will take all of your love and well wishes... roll them up in a big ball and smash it with a loud bear hug... for I am 35, and this is my year!




Like the song says, "To Everything There is a Season", and this will be my season of blooming joy! 



Mucho Love!