Sunday, June 28, 2015

Why Eight is Especially Great

The birthday cowgirl!
Today we threw a Cowgirl Birthday Party to celebrate Julia's 8th birthday!  Yee-haw!

I feel like we've been going non-stop for about three days getting ready for this party - not to mention the four weeks of Pinterest pinning and planning I've been obsessing over. All the work paid off I believe because it was a fabulous day spent with friends and family celebrating our amazing Julia!!

Every birthday is worth celebrating in my book - every birthday is a gift we rejoice over and an opportunity to reflect on how thankful we are to have Julia here. But there is a very specific reason I wanted to celebrate big time for number eight. Beyond marking another year with our precious Jules, beyond celebrating all she has achieved and accomplished and overcome, eight has a special meaning in our story. Eight is significant.

The significance of Julia turning eight is traced back to a moment when Julia was just 9 weeks old and we met with a genetics counselor at Children's Hospital to discuss the findings of her chromosome testing. 

"She has a chromosomal abnormality," the counselor explained to us, "An unbalanced translocation of chromosomes 5 and 6. There are no other documented cases like hers, so Julia will just have to show us what this means for her.  But we have found one case with some similarities, a little girl in Wyoming who developed epilepsy as an infant and leukemia at age 7." 

So, there you go. Two lines in a medical text book - epilepsy and leukemia.  That was the extent of the prognosis they could give us for our precious 9 week old baby girl. That was all the detail available to equip us as we faced the rest of our lives. 

I left that appointment and tried to tell myself Julia was not the little girl in the book, that their differences were as significant as their similarities and the information in this medical text book did not sentence Julia to follow her same path. I tried to tell myself this, but then Julia developed epilepsy as an infant and it became a little harder to believe that "Leukemia at seven" would not be our story as well.

We've done our best in the past eight years to live life fully - growing and developing and at many times blossoming right along side our girl. Learning from her about how to take life one moment at a time and to love each moment for what it is, not what it could or should have been. We've let go of expectations and focused on celebrating the lives we've been given. Julia has taught us this. Julia lives without fear. And I think we have done a pretty good job at this living and loving thing - and we've worked very hard not to let fear cloud our joy. 

But if I am totally honest, "Leukemia at seven" never left my memory. It lingered in the back of my mind, poking my peace and fanning unwanted fears, especially as seven grew near. I would google leukemia symptoms anytime Julia seemed a little off. I'd read up on all the warning signs, especially the rare ones. I'd ask doctors to run tests - just to make sure I didn't miss it's arrival.  One doctor asked me "Why the concern about Leukemia?"  I looked at her as if the answer was so obvious, "Because it was in the book!" As if she knew which book I was talking about. You, know, THE book. The book that told me this could happen to Julia - it's in that book - so can you just do that blood test please?


And now, here we are, and eight has arrived! And it feels significant, like we've made it to something big or past something big. And even though I know that nothing has actually changed over night, that Julia hasn't magically become safer than she was when she was seven, it still feels big. Nothing changed for Julia, but something changed for me - my narrative has shifted, some burdens have lifted -  and that makes this one day pretty darn powerful. That makes this one day worth a big celebration!

Yay for eight! 

Eight is great!

Yee-haw!!!!
















.


Friday, June 26, 2015

Guest Post: Macey's 3rd Day

June is always a contemplative month for me. Julia's birthday and the due dates of our other two girls, Joy and Pearl, all fall within June, and I always find myself reflecting on the significance of small moments and single days that fundamentally shift the course of our lives.

Days that make us and break us and make us again.

I imagine that at the end of our lives if we are given the time to reflect, our reflections will consist of a handful of days which built the framework for the rest of our lives to exist within.

It was during this time of reflection that I was reminded me of a beautiful essay my dear friend Arlene wrote several years ago about her daughter Macey and one of these significant days. I asked Arlene if I could share her essay here and she graciously said yes.

I'm so honored to share my dear friend's writing. I met Arlene Thomas 10 years ago in grad school, where we were both studying to become marriage and family therapists. She is one of my dearest friends and someone I have looked to often over the years as a model of how to live beautifully with pain.

This is for all of you who can appreciate the restorative power of one single day. Thank you Arlene, you are one of my heroes and I love you!

~~~

            On the third day of my daughter Macey’s life, I was reborn.  For many new mothers, the third day of their baby’s life might pass in a blur.  Those first days blend into one another under the fog of sleeplessness and awe.  For me, Macey’s third day stands out as one which fostered a renewed sense of hope.  It was a day I was scared to dream about yet anxiously awaited.  With so many days full of enormous emotional meaning, it is difficult to pinpoint the most important day of my life.  But in many ways, the third day of Macey’s life was a day of rebirth for me. 

Macey was not our first child.   Her big brother, Micah, was born two years prior.  When my husband, Ben, and I got married we had a master plan for our lives.  We knew we wanted kids, two to be exact.  We both wanted to complete graduate school and be married for five years before starting a family.  After we checked these milestones off our list of things to do, we expected to get pregnant in a timely manner and live happily ever after. 

Right on target, I finished graduate school, and we celebrated our fifth anniversary while I was pregnant with Micah.  We imagined the countless ways he would be integrated into our family.  I thought about what outfits he would wear when I took him on his first outings. I envisioned taking him to his first baseball game.  I dreamed about family gatherings where we could show off our beautiful little man.  After a smooth pregnancy and birth, we welcomed a healthy little boy into our family.  We were elated with our son and were so excited about carrying out our new roles as parents. 

Tragically all the hopes we had for our future with Micah were shattered in an instant.  Micah passed away unexpectedly in his sleep the morning he turned three days old.  We later found that he had died as a result of Sudden Infant Death Syndrome, a mysterious phenomenon that remains a medical mystery.    

As the initial shock wore off, the pain I felt in losing Micah seemed to touch every aspect of my life.  Eventually, all the clothes we had bought, washed, and sorted for him had to be packed up along with his completely furnished and decorated room.  Unused supplies were either returned or stored. 

During this time, I also slowly began to recognize the innumerable ways in which Micah’s life had impacted mine.  In this, I began to see how much Micah had taught me about unconditional love.  Although he was no longer physically with us, our love for him only continued to grow, showing me how powerful love can be.  Having given my love to Micah so freely, my heart was broken beyond description.  After his death, I was unsure if I would emotionally ever be able have another child or to love another as much as I loved him.  However, the time Ben and I were able to share with Micah made me realize how terrifying it can be to love so deeply and yet how much we wanted the chance to have another baby and be parents in the “normal” sense of the word. 

Six months after losing Micah, we started “trying” again.  With this decision, we knew there was the possibility of experiencing great joy and a renewed sense of hope, but there was also the chance for tremendous hurt.  A few months later, we were cautiously elated to learn we were pregnant again.  Although at first I was afraid of connecting with this new baby, I also felt like Micah’s little sister or brother deserved that same unconditional love we gave him.  I also wanted to appreciate every second I had with our new baby, realizing each moment was a gift.

Nearing the end of the first trimester, we went in for a regularly scheduled doctor’s appointment.  After weighing in, having my blood pressure taken, and getting measurements of my uterus, everything looked great.  However, minutes later our doctor was unable to find a heartbeat.  At that moment, it felt like our hearts stopped beating as well.  We had lost another baby.  Through testing, we were able to find out that we had a little girl, who we decided to name Morgan.  My mending heart was once again crushed. 

            Despite all the grief we endured, our desire to have a baby continued to grow.

           Three months after losing Morgan, I was pregnant again, this time with Macey.  From the beginning, I was both wrought with fear and overjoyed with every moment we had with her.  Every time I threw up, every bout of heartburn, every pound I gained reminded me this was exactly where I wanted to be. Every heartbeat I heard and every kick I felt was life affirming. 

          During Macey’s pregnancy, I literally took life one day at a time.   I never knew how to answer those who asked how I was going to decorate the nursery, what method of childbirth I was planning, or where I had registered for gifts.  Those aspects of pregnancy and parenting seemed so inconsequential in light of the truth I knew: I wasn’t promised a future with this baby.  What I did have was the present and that is what I focused on.  

As days turned into weeks and weeks turned into months, I was forced to start planning for my baby’s future.  I had to pre-register with the hospital for my delivery.  I had to research insurance plans.  I had to choose her future pediatrician.  With every plan I made, I feared having to go back to undo each of them if we lost her. 

One week before I delivered, we hadn’t even bought any supplies or clothes for our little girl.  We finally decided to buy only the absolute essentials.  It amazed me how buying a five pack of onesies felt like a new level of commitment to believing in Macey’s future.

The day I gave birth I had such mixed emotions.  Between missing Micah, wondering what it would have been like to have Morgan, and anxiously anticipating the birth of Macey, I couldn’t help but wonder if my faith in hope could be renewed.  When at last I saw and held Macey for the first time, I was in awe.  She was here.  She was healthy.  She was beautiful.  There was relief in finally being able to see her, along with continued fears that at any moment something could go wrong.  There was a nagging realization that we would never truly feel like we were out of the woods. 

Knowing that many of our friends and family never got the chance to see Micah, there was a sense of urgency in our desire to have those closest to us meet Macey.  I started to memorize all of her features and yearned to get to know her as much as possible.  Every hour seemed like a lifetime of opportunity to spend with her.  My husband’s family had come into town for the birth and planned on staying through the following week.  The only way Ben and I were going to get any reprieve from our fear was through knowing that someone would be holding and watching Macey around the clock. 

Somehow we made it through Macey’s first two days of life.  But there was also a sense of foreboding as her third day came near.  At the time, it was too scary to acknowledge our fears out loud, but we all felt the day’s brooding approach.  Knowing that I desperately needed to get some sleep, Ben’s parents offered to stay up with Macey during the night shift that would lead into the ominous third day.  That night, as I tried to force myself to sleep, I kept my mind occupied with anything other than the fear that loomed just below the surface.  Somewhere in between distracting myself with thoughts of paint colors for our bathroom and what I wanted to eat the next day, I was able to fall asleep.  Amazingly, I slept soundly until Ben’s mom woke me up for Macey’s next feeding.  I looked at the clock and it was 4 am.  It was the next day.  It was Macey’s third day.  She made it through the night!  We made it! 

That morning, as I joyously fed Macey, I thought of Micah and the heartbreak which began on what should have been his third day.  I thought of the lessons on life, love, and gratitude that were instilled in us through his short life.  I looked down at my beautiful little girl, Micah’s little sister, and recognized seeds of restoration.  Restoration in acknowledging my own capability to be a parent.  Restoration in my hopes for the future.  Restoration in my ability to acknowledge my fear and pain while at the same time allowing those experiences to guide me to recognize the gift of life.   



My dear friend, I love you so!



Friday, May 1, 2015

Mommy, for Real: Born With a Possibility



I'm so excited to have an essay published on Mommy, for Real this week! Stephanie Sprenger is Julia's amazing music teacher and has become my friend over the years. I'm so grateful to Stephanie for the opportunity to share my thoughts on how parents can talk to their kids about kids like Julia!

Here's an excerpt:

"The point is, I don’t know what your kid understands. But you do! You are an awesome mom. You know how to cater a message to fit your child’s developmental stage. So I can give a few suggestions, I can tell you how I hope the world will talk about Julia, and then I’ll let you take it from there!"


Check out the entire post here
Tips for Parents- (1)

Sunday, March 22, 2015

8 Weeks on Weed

Tomorrow marks 8 weeks of Julia taking medical marijuana for epilepsy.

Julia Anne aka "Jules"
8 weeks on weed!

So far we feel she is doing awesome!

I've written previously about our decision to start medical marijuana - which was primarily driven by our concern for what seven years of pharmaceuticals were doing to Julia's little body. In the 8 weeks she's been taking Haleigh's Hope we were able to wean her off of all other medications. So, for about six weeks she's only been taking marijuana, nothing else, and while it is still pretty new and her dose is fairly low, we think we are seeing a really promising response.

(Side note: Some people have suggested to me that I not call it marijuana, that calling it something else would help people who are against it to be more supportive. But no, I'm not going to do that. I'm just going to call it marijuana. Partly because it's easier for me, but mostly because that's what it is and my whole point is that we shouldn't have to cover anything up or package it a certain way for the comfort of others. Reasonable people don't care if I call it marijuana, they don't care what I call it, they care that it is working, period!)

So, Julia has been doing really well overall!  In the past two weeks she had a few seizures - two were very clearly linked to her having the flu. She had a high fever and was throwing up all the medicine we were trying to give her to reduce her fever and so it made sense to us why she had the seizures and I honestly think she would have had them even if we had still been on Keppra.

She had another seizure last week in speech therapy which we actually believe may have been stress induced.  This is new for her and I think perhaps in the past Keppra might have been keeping this type of seizure at bay - I really don't know, I'm guessing. But bottom line, I don't necessarily view this as a negative because what we are seeing is a less doped version of Julia (ironic?) and perhaps as a result we are learning about some of her triggers we weren't aware of previously because the medication was dulling her response to life. So now we have a girl who is more in tune to her environment and we are, as a result, more aware of the risk that can come with her getting overly stressed. We may go up on marijuana at some point to increase the threshold of keeping this type of seizure away, but we can also do a lot on our own to try to minimize environmental stressors for her without just automatically going up, up, up on more and more meds.

At this point in our journey with epilepsy I feel like we have a healthy understanding of our situation. We know that because Julia was created with a uniquely formed brain she is always going to be at risk for seizures. There will never be a "cured from epilepsy" day for us this side of heaven. Even if the Lord blesses us with long stretches without seizures, like He has in the past, seizures will always be on our minds. It's not a lack of faith, it's a realistic understanding of our situation. And it is okay! We will keep trying our best to find that balance, that sweet spot, between enough medication to keep seizures away and as little medication as possible so that we can know Julia as best as possible! It's going to be our lifelong challenge.  And we are happy to do it because she is so very worth it!

And so for now we believe we are gaining some ground in our challenge! Since starting medical marijuana (and getting off of Keppra) Julia's agitation has decreased quite a bit. She has attempted some new communication strategies which have been exciting to experience, and she has been very attentive and in-tune to the people around her. For example, today we visited with friends who have a 1 year old. Several times I caught Julia stealing sideways glances at little Rosie. She shared her iPad (sort of) and when  Rose gently grabbed for Julia's hair Julia did not freak out at all, she just moved a little to the side and continued watching Veggie Tales! These are all really big developmental steps for Jules! Another example of this progress; last week we went to visit the four week old puppy we are getting for Julia and during our visit she let the puppy put his paw on her hand.  Seriously, the puppy put HIS PAW on HER HAND and she allowed it!!!!!  I cannot over emphasize the enormity of this type of development. The girl is getting the chance to be comfortable in her own skin and it is glorious to witness!
Julia and Macaroni aka "Mac"

In the past eight weeks our story has been shared and we have received so much support for which we are very grateful! (And some constructive feedback as mentioned above, but mostly support.) One supporter repeatedly encouraged us not to give up! Don't give up! Don't give up! I found this to be so sweet and I love the encouragement, but it was also a little confusing because we have absolutely no intention of giving up! We are thrilled by what we have seen so far and this is only the beginning. We have so much hope for what is ahead with Jules taking marijuana. If anything we are more determined than ever to spread the word about how this is working for our family in hopes that more families will get the chance to try it. More families, in their own home state or country, without having to disrupt their lives, leave their people and become medical refugees in Colorado, will be able to give their loved one this chance at life with fewer seizures - we can do this!

Please get involved, please spread the word, please help us legalize medical marijuana on the federal level so our friends can return home and we can go to the beach!  Thank you!

#legalize #cannabisismedicine #marijuanaismedicine #legalizemedicalmarijuana #haleighshope #illegallycured

Wednesday, March 4, 2015

If A=B and B=C

I'm not the first parent of a child with special needs to write about ending the R-word.

I've seen many beautiful, touching and vulnerable posts from parents and loved ones of a person with special needs appealing to the world to stop using such a hurtful word. Almost every one of these appeals brings me to tears because I love these people and I know the pain they are talking about, the pain this word causes.

The other thing that nearly brings me to tears is that undoubtedly there are people who continue to defend their use of this word even after hearing our pleas. People who don't care about the personal stories being shared, who refuse to hear that for some of us this word truly does bring pain, people who continue to defiantly use this word with pride. 

I've never experienced the type of attachment to a word these people apparently have for the R-word. It baffles me. It saddens me. It infuriates me.

So, because of people like that, I am NOT going to write a heart wrenching plea to the world about the R-word.  I am NOT going to tell you about my amazing daughter and how using the R-word perpetuates a negative stereotype about the most beautiful and vulnerable people among us.  Nope, I am NOT going to do it.

Instead, I am going to SHOW you how using the R-word is lousy using basic math. 
That's right, I'm not going to do anything, math is going to do the work for me.

The transitive property of equality (sounds fancy but it's not, I'm not that good at math) tells us that:

If: A=B and B=C, then A=C.   

There you go! That's it. Math just showed us why we should not use the R-word.

 Let me explain further in case you aren't following. 

For this particular equation:

A= A Person with Special Needs
B= the word Retarded
C= bad, stupid, dumb, messed up, mistake, undesirable, etc...

Soooo, according to the transitive property of equality (I like saying that, it makes me feel smart):

If:
(A) A person with special needs = (B) Retarded (I know some will argue this isn't used anymore, but the whole point of this equation is that this WAS at one time the meaning of this word)

And:
(B) Retarded =  (C) bad, stupid, mistake, undesirable, etc... (how it is most often used now days)

Then:
(A) A person with special needs = (C) bad, stupid, mistake, undesirable, etc.... 

Is this making sense?

Here is a picture for visual learners:





See how that works? See what math is saying to us?

It is not ME asking you not to use the R-word because it insults people with special needs, it is math showing you how using the R-word insults people with special needs. 

It doesn't really matter if you continue to think using the R-word is okay, because math is telling you it's not. Math is telling it is kind of a crummy thing to keep doing.

And it doesn't really matter if you claim you didn't "mean it" like that, because the transitive property of equality is math, it doesn't care about what you mean! 
It exists outside of intent.   

Math can be brutal right?!?!

A cool thing about this equation is it can be used for other terms as well, not just the R-word! I made this handy table to you show you what I mean, I'm helpful like that, I want math to make sense for all!

If A=B
And B=C
Then A=C
If a person with special needs =
Retarded
And if Retarded                         =
Bad, stupid, mistake, etc.
Then a person with special needs 
=
Bad, stupid, mistake, etc
If a person who is homosexual =
Gay
And if Gay                               
=
Bad, stupid, mistake, etc.
Then a person who is homosexual =
Bad, stupid, mistake, etc
If a person who cannot walk   =
Lame
And if Lame
 =
Bad, stupid, mistake, etc.
Then a person who cannot walk 
=
Bad, stupid, mistake, etc


I hope this is making sense now... I find examples and tables to be very helpful. 

So what have we learned from our math lesson today? 

Well, we've learned that if A=B and B=C then A=C 
and we've also learned that
If you keep using the R-word after reading this blog, then you are a douchebag!  

Plug that into the table above and see how it works out. Thank you!


#spreadthewordtoendtheword #rword #respect

Wednesday, February 25, 2015

She Doesn't Need Healing

We stopped going to church when Julia was a baby.

Not because we had lost faith, in fact, for me at least, this was a time of intense faith and closeness with God, but just not in a church building, and not surrounded by a lot of Christians.

It was the Christians we stopped going to church because of. Specifically the Christians who kept offering to pray for Julia to be healed.

We seemed to make them uncomfortable with this baby of ours who was different, this baby who wasn't perfectly healthy, wasn't just "fine."  They didn't seem to know what to do with us. Our presence was causing them to have to think about their God and their faith in a way they were not comfortable with - so instead they did the one thing they knew how to do, they offered to pray for healing.

"We are praying for her to be healed."
"We are praying God heals her."
"We have faith God will heal her."
 On and on and on, heal, heal, heal.

You would think these offers of healing prayer would have brought us comfort, but they did not. They brought pain and confusion - because it felt like rejection - like we were unacceptable "as is" - we needed to change, or she needed to be changed, before we could be embraced.

These offers also made me uncomfortable because somewhere deep inside my reeling, confused and sleep deprived newborn-mom brain, I knew Julia's healing was not what we needed.

You pray for healing when the diagnosis is a disease.

But Julia was not diagnosed with a disease.

Basically Julia was diagnosed with "this is just how she was made."

I didn't know exactly what you pray for when the diagnosis is "God made her this way," but  "healing" didn't feel right.

What would we be asking she be healed from?  The very blueprints God used to create her? Would we go before God and ask that he change her very being to make it easier on us? I cringe even now at the thought.  I didn't know much in those early days, but I knew I did not want her changed.

I also knew I needed more from my God then a "fix."

I needed a god who does more than just take away hard things, more than a "genie" god randomly granting wishes. I needed a god who would help me IN this hard thing and WITH this hard thing, not just out of it. If all you believe your god can do is take away pain then that isn't enough for me, that isn't my god. Because I found myself experiencing for the first time a pain I didn't want taken away. So how does that work? God has to be more than a fixer of pain or nothing makes sense - because I see a lot of pain in this world that hasn't been taken away. So what does that say then about God if your faith in him and his goodness depend solely on the removal of what we think is hard or wrong?

That's just too simple for this beautiful heartbreaking life.

I'm not a biblical scholar, but I KNOW my God did not promise us a cake walk in this life (John 16:33). So why is a cake walk exactly what we beg Him for the moment hard things appear for ourselves or others? It doesn't add up.

When Julia was about three years old we cautiously started going to church again thanks to the recommendation of friends and family who loved us and knew what we were wrestling with in regards to other Christians. We found a church where the motto is "Me too" - basically a general statement of acceptance for everyone - come as you are - you don't need to get better to be here - we are all the same - we all need grace.  It felt like the kind of place where they might say "Hey, Julia is pretty awesome!"  Rather than "Hey, Julia needs to be healed."  It's been a good home for us.

I remember one Sunday morning in particular, our pastor referenced a verse from Romans chapter 8 where Paul writes about being more than conquerors through Christ. That phrase "more than" - why did Paul write that? Why not just conquerors? Conquering seems pretty good to me. Because, our pastor explained, you are a conqueror when your challenges are gone, but you are MORE THAN a conqueror when you live victoriously with your challenges still present.

There it is!!!!!!!!
That is my verse!! (Romans 8:37)
And that is my God!!!!!!

That Sunday morning our pastor gave words to what I had been trying to figure out all of these years about how I understood God. That was why I was so uncomfortable with the "healing" stuff: I don't need (nor want) these challenges removed, I have a God who makes me victorious with my challenges, while I am still very much in the hard stuff.

So, this is what I have come to understand about Julia and healing over the past seven years:
It isn't Julia who needs healing. It is the rest of us.  Julia is a precious catalyst for God to heal some of our deep brokenness. The brokenness that causes us to fear and reject what is different and weak and vulnerable.

Please know that I am not against prayers for healing. I do it all the time. I've just learned that often we are too specific in what we are asking God to heal, too specific and usually off base.

Don't pray for her to change, pray for us to embrace her as she is.
Don't pray for her to change, pray for the community to shift how they view her.
Don't pray for her to change, pray for yourselves to change how you understand hard things.

Don't pray for her to be healed, pray for my healing and pray for your own:

Heal me from my selfishness.
Heal me from my insecurities.
Heal me from my need to control.
Heal me from my fear of hard things.
Heal me so that when hard things come I will stand firm, I will move towards, 
and I will be MORE THAN.


"In all these things we are MORE THAN CONQUERORS through him who loved us." - Romans 8:37



Tuesday, February 17, 2015

Is It Working?

Two weeks ago Julia went green and started medical marijuana (Haleigh's Hope to be exact) to treat her seizures.

First and foremost, we've received TONS of support - mountains, mountain ranges of support for this decision - and for that we are incredibly humbled and grateful and super boosted up! Thank you support!

In the past couple of days many of our mountains-of-support have been asking us the million dollar question: So, is it working????

And my answer, which, because I am a pleaser, I so desperately want to provide is... Ummm, I think so?

I hate being vague, but this is a tough question to answer at this point.

Tough for a few reasons:

1. Julia is non-verbal. The non-verbal issue doesn't get a ton of air time from me, sometimes I even forget she is non-verbal because she is so great at finding ways to communicate her needs. But in moments like this when I would so love to pick her brain and ask her "HOW DO YOU FEEL????" I am reminded (frustratingly) that we don't have this avenue of clear communication and understanding available to us. So we do our best to decipher and interpret her behavior to determine how she might be feeling.  For example: She seemed calm today. Oh that's great! Calm is great! Wait, unless she is calm because she is sick. Do you think she is sick, did she act sick?  Or was it a good calm like calm because the marijuana is working? What kind of calm are we talking about????
And well, it's an imperfect science to say the least.

2. It's only been two weeks and she is on a tiny, tiny dose.  I think we will need more time and possible tweaking of both the amount and CBD:THC ratio to land on the optimal dosage for Jules - and well, you can't do much to rush time, trust me, I've tried. So the plan is we will call her MMJ doc (I don't know if that's what this doctor wants to be referred as, but in our house she's the MMJ doc), we will call her on Monday, give her all of our impressions and observations, and see how she wants to proceed. (Side note: a few people have asked me how this whole thing works with our other doctors - and all I can say is that both our pediatrician and neurologist work for large health care companies and are not allowed to give much feedback on our MMJ journey - so we are just keeping them informed but not getting any sort of guidance from them - I hope one day that will change.)

3. Julia doesn't have a ton of seizures (thank you Jesus!). I wrote about this before, but Julia is a little different than most of the kids currently using medical marijuana for seizures in that she doesn't have uncontrollable seizures - nor does she have daily seizures, even off of medications. Basically she is prone to having seizures because of her unique brain and she has them frequently enough to need to be on something to try to prevent them. But she does not have them frequently enough that I can tell after two weeks whether or not there has been a decrease in seizure activity.  We have chosen to use medical marijuana as a treatment option because we don't like the side effects of other pharmaceutical anti-seizure medication she has been on for the past seven years AND because it is an option for us here in Colorado. We wish this was an option for every family in every state to decide upon.  Many families have packed up their lives and moved to Colorado to give their kiddos a chance on medical marijuana - mostly because nothing else has worked.  We hope that through our pursuit of this option and in sharing our story, we can play a tiny part in making this option available for ALL families to try - no matter what state they live in!!!

So those are the reason it is hard to say for sure if it is working or not. But here is one more thing I can say for sure: It isn't making things worse!

Last month when Julia had her scary seizure that landed us in the ER and started the chain of events that led us to Haleigh's Hope, we had to temporarily re-start her on Keppra. One day on a very low dose of Keppra and she was a wreck. She could no longer walk - she lost all of her balance and couldn't take two steps without crashing. And her agitation skyrocketed. She was hitting herself and pulling out her hair, acting like it was painful to be in her own skin. It was heartbreaking to watch.

Two weeks into Haleigh's Hope (with Keppra gone again - yay!) she is walking like a champ, balanced and confident! And her agitation seems to be down. Oh and no seizures (which like I said before, doesn't tell us a ton, but no seizures is a heck of a lot better than some or many).

So that is how we are getting to our answer right now about if this is working for her... We think it is working because we aren't seeing awful side effects. We think this is working because we are maybe even seeing some positive side effects. And we think this is working because she is off all her other medications and hasn't had a seizure!

We can't know what tomorrow will bring, but for today will take that as a victory my friends! Indeed we will!


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