Happy Birthday Junebug!

Today was the best. We had a birthday party for June and she was surrounded by so many people who love her. Last year we didn't throw a party because she was on ACTH to treat her seizures, which made her immuno-suppressed and very uncomfortable, so this was her big party.

I am happy we are making new, good memories of June’s birthday. Last year June’s birthday was difficult for me not just because June was on ACTH, but also because June’s birthday made me sad.  The night June arrived was so wonderful and then it was followed by the worst day of my life when June didn’t pass the newborn hearing screening. It was the first of many tests that would come back with bad news and more questions.  I left the hospital with our newborn baby girl terrified of what the test meant and no one could give me the reassurance I needed.  So in a way June’s birthday is almost a reminder of a dream that I lost the day after she was born.  But as life unfolds, I’m seeing things are shaping out to be far better than what I could have ever dreamed despite all the hardships we have endured.  We are exactly where we are supposed to be.

Sometimes I imagine talking to myself two years ago as a new mom riding in the backseat of our car sitting next to June as Matt drove us home for the first time. In this image in my mind, I'm whispering in my ear as I hold June's hand, "It will be okay. You will be okay."  That's what I wanted to hear then. I was looking to doctors and family members to tell me that it will be okay and no one could then.  But I can now. It will be okay because you will make it okay.

I could never have imagined the love we feel for June and each second we love her more than the last. I am blessed to be her mommy because she is my teacher on unconditional love, perseverance, and just being present. She is amazing. Here’s to June and new memories of such a wonderful day!!

Oh, and a huge thank you to my sister, Barbara Balossi, and brother-in-law, Matt Balossi, for hosting the get- together as our house is a huge mess since we are getting ready to move to Colorado!  I have so much to update about our trip to Colorado and I am planning to do that this week.

Little Lobbyist

On Tuesday, the Jessees went to Jefferson City, MO so that I could testify before the House General Laws Committee on a House Bill that was introduced last week by Representative Caleb Jones and is supported by Senator Eric Schmitt.  The bill would allow children and adults with intractable epilepsy to legally access high CBD oil, such as Charlotte’s Web. 

June on her way to Jeff City

We are so lucky to have two strong advocates in the House and Senate. Caleb and Matt have been friends for a long time and when he and his wife, Lindsey, found out we were moving to Colorado to access Charlotte’s Web he asked how he could help us and other families in Missouri going through our same struggles.  Matt and I became close with Eric and his wife, Jaime, after June was diagnosed with Infantile Spasms.  Their son also has intractable epilepsy and they have been so helpful to us on our special needs journey.

Below is the text of my testimony that I want to share with you all. I am pleased to report the bill passed the General Laws Committee by a vote of 11-0.  The next step is for it to go to the Rules Committee and then for a vote on the House Floor.

A few people have asked us if we will still move to Colorado if this legislation passes and we will.  We are not sure how long it will take for the law to be implemented and June needs this medicine now.  It will allow us to come back to Missouri though and that makes the move away from our family and friends a little easier. As always, thank you for your support!

Testimony on House Bill NO. 2238 - House General Laws Committee

April 8, 2014

Thank you Mr. Chairman and members of the committee. My name is Genny Jessee and I am the proud mother of June Jessee.  June is almost 2 years old and has intractable epilepsy which means medicine has not worked to control her seizures. We saw her have her first seizure when she was only 2 months old and ever since then we have fought tirelessly to make them stop. June is a sweet girl.  She smiles, laughs, and squeals, but she can’t do things other kids can even though she works very hard – harder than I’ve seen anyone. She can’t sit, crawl, walk, or talk. She spends most of her time in doctors' offices, the hospital, and therapy sessions and has been through much more in 2 years than some people endure in a lifetime.  In short, June is severely developmentally delayed because her daily seizures interrupt her brain from making the connections that come easily to you and me.  June is why I am here today to talk to you about cannabidiol oil, also know as CBD oil, which is made from a strain of medical marijuana that could save June’s life along with thousands of other children here in Missouri suffering from intractable epilepsy. I believe that CBD oil should be legally available to citizens in Missouri because of three important facts. First, it is showing to be safe and effective.  Second, we, and many other Missouri families, are out of legal medical options, and third, its use should be a choice left to a patient or caregiver, and his/her doctor without the interference of government.

CBD oil is a safe and effective option for children with difficult to control seizures. CBD oil comes from a hybrid strain of marijuana that is low in tetrahydrocannabinol also know as THC, which is the psychoactive ingredient in marijuana, but rich in CBD. Its medical potency is due to its high CBD content. High CBD plants have shown results in reducing and stopping seizures in children with intractable epilepsy with minimal side effects. The plant is made into an oil and given to children by mouth either via a syringe or in food. This plant and oil is not smokeable and has no recreational potential because it does not produce a “high.” Additionally, the plant is grown organically and the medicine is tested for dosing as well as molds, pesticides, and solvents.

Pre-clinical data indicates the side effects in CBD oil and related products are very limited or non-existent.  This factor alone is remarkable considering most seizure medications have horrific side effects that could include intense drowsiness, irritability, slowed thinking, dizziness, memory problems, trouble concentrating, problems with speech or balance, kidney stones, acidosis, weight loss, weight gain, sleeplessness, vision loss, irregular heartbeats, feeling like you might pass out, diarrhea, constipation, and even death. In fact, I remember very clearly sitting in June’s neurologist office as he recommended a drug called ACTH that could kill June.  He told us the risk of death was real and scary but he thought the potential benefits outweighed the risk of death.  When a doctor suggests a drug that could potentially be fatal, it puts other drug risks into perspective.  In addition to being safe, CBD oil is showing to be effective. The anecdotal evidence of patients and families is that CBD oil results in remarkable seizure control with improvements in quality of life.

In addition to being safe and effective, CBD oil is another tool for families living with this devastating diagnosis when they have run out of time and options. Children with intractable and catastrophic forms of epilepsy have already tried and failed all the medications available to them. We’ve tried and failed 11 different medications along with the ketogenic diet. As mentioned earlier these treatments come with horrific side effects. Despite the risks, we tried these treatments because the doctors told us the possible benefits outweighed the risks, even when the possibility of a drug or diet working was only 2 -3%.  In addition to these traditional therapies we have also seen a homeopathic doctor and we visit a chiropractor regularly.  Basically, we have tried everything we legally can.

After June’s neurologists suggested we retry medicine June has already tried and failed we decided we needed to move to Colorado to start June on the CBD oil, because we believe we should try something new rather than try a drug that we already know did not work well. Where is the science in that? It is unfortunate that we have to move to Colorado to get June this much-needed treatment but the state of Missouri legally prohibits us from accessing this medicine for June.

My final point I would like to make is the use of CBD oil should be choice left to a patient or caregiver, and his/her health care provider without the interference of government.  As I said earlier June and the thousands of other children here in Missouri do not have time to wait for this medicine to become FDA approved. Science doesn't always lead the way. Frequently there is a painstaking period while science takes a great deal of time to substantiate or rule out what may be fact. We don't have the luxury of that time. That's when factors such as anecdotal evidence and risk/benefit ratio need to be considered without government intrusion. The way we have already gone about treating June’s seizures is not science. There was no method behind which medicine or treatment we tried first. When diagnosed, June’s neurologist asked my husband and me which treatment we wanted to try first and subsequently the choice was always ours based on the information provided to us. I believe we have that same right in this instance as well.

Opponents may say, “Why not enroll June in a trial.” Well, it’s not that easy. The studies underway are too small because the Government holds harsh restrictions on the number of patients allowed in the study making it nearly impossible for children to get access to studied medication via a clinical trial.  

Opponents also may say to “stick with the medicines that are approved by the official process and we shouldn’t try to take short cuts.” To that I say, we’ve already tried what there is to offer, and imagine what you would do in our situation? If your answer is different than ours, then if you are faced with our circumstance, you have the right to refuse treatment. I choose to try everything we can to possibly save June’s life and I should have the right to make that choice with June’s health care provider without the interference of government and other public interest groups that have nothing to do with the issue we are discussing. The irony in this argument is pediatric neurologists and physicians routinely recommend substances to their patients that are not FDA-approved medications. ACTH was not FDA approved for Infantile Spasms until 2010, but it is the frontline medication for treating infantile spasms and neurologists have been using it as such for decades. Skeptics also may say we don’t know if CBD oil will work, but we didn’t know if the 11 medications June already tried would work. I understand that is a very real possibility, but I am hoping with every ounce of my being that it will offer some relief.  

Our children are counting on us to do the right thing for them. This is not a difficult decision.  CBD oil is safe and effective, it is giving families hope when they no longer have medical options, and finally, it is putting the treatment decisions in the hands of patients, caregivers, and doctors rather than in the hands of policy makers. Saying yes to this proposed bill would be saving June’s life. Thank you for saving June and thousands of children just like her.

Not Giving Up

Matt and I are overwhelmed by all the support we’ve received from you after my last post.  So many of you offered to connect us with people you know in Denver, advice on where to live, and asked the very important question, what can be done to change this so every child who needs it is able to access medical marijuana?  It’s an amazing feeling to have you all behind us. It affirms that we are doing the right thing for June.

Some of you have also asked what led us to this decision, and rightly so.  I haven’t written for a long time and then all of the sudden I post that we are moving to Colorado to treat June with medical marijuana. That’s a big jump!  Well, it’s been a long time coming and it was a series of several events that led us to this conclusion.

I started following medical marijuana to treat intractable epilepsy in children about a year ago when another family I know from St. Louis told us they were moving to Denver to start their daughter on Charlotte’s Web to treat her seizures that are similar to June’s.  Her daughter is several years older than June, and they have been so helpful to our family in navigating this new world we find ourselves in.  Around that time, a story in the Washington Post came out about how medical marijuana was helping a lot of children just like June.  This was also when June’s seizures had stopped temporarily, so I was paying attention, but I wasn’t jumping through hoops to get the medicine like I am now.

In August, June’s seizures came back so I started researching it more.  I talked to her doctors about it, but they dismissed the claims that it was a viable option.  What pushed us over the edge was what happened during a scary event in December.  I accidentally mixed June’s medicines up, and I gave her 4 times the amount of one medicine thinking it was another. I realized the mistake immediately and called 911.  June was okay, but it was a frightening experience. Matt and I began to feel fed up. At that time June was on six different medicines that we gave her two or three times a day and most of them weren’t doing anything.  It’s easy to get them mixed up, and I did.  I was so scared as I held June in the ambulance on my way to the ER just praying June wouldn’t die from an accidental overdose. That’s when we decided to look into moving.

Finally, we made our definitive decision after June’s neurologists suggested we retry medicine June has already tried and failed. ‘You’ve got to be kidding me,’ I thought, ‘why?! why would we do that?!”  I said I wanted to try something new that could stop her seizures, and they told me their goal was to make June as comfortable as possible but controlling her seizures was unlikely. I just don’t understand how they can say that when CBD is an option. Before we give up, shouldn’t we try everything?  And so we began the process of moving to Colorado to try a different treatment instead of one that did not work well.

I’ve learned that no one cares about your sick loved ones as much as you do.  I used to think when people got sick, a team of doctors sat in a room wracking their brain about the causes and not stopping until they were able to treat the patient. I just haven’t found that to be true. I think they did in the beginning, but I don’t get that sense anymore. At some point you have to choose the direction that is right for you and your family because just like June,

we aren’t giving up.

Colorado Here We Come!

After considerable thought, we have decided to move to Denver, Colorado later this year to start June on Charlotte’s Web, a strain of medical marijuana that is showing promising results in children who have failed all the FDA-approved pharmaceuticals available to treat epilepsy. It is unfortunate that we have to move our family all the way to Colorado to get June this much-needed medication, but the state of Missouri legally prohibits us from accessing this medicine so we have no choice.  

I believe strongly that this medication should be legal in every state for the thousands of children like June who are suffering from intractable epilepsy.  Skeptics may argue that we don’t know if this will work, but we didn’t know if the 10 different seizure medications and special diet that June has already tried in her short lifespan would work.  In fact, doctors recommended treating June with a drug that had a 3% chance of working and one of the side effects was death.  Skeptics also say that we should wait for the medication to become FDA approved because laws will change “eventually.” Doctors’ attitudes are already shifting and small FDA trials are underway, but June does not have time to wait for that to happen because her brain is developing now – not “eventually.”  Every day June has seizures delays her development so we cannot wait any longer.

Unfortunately, we cannot just start the medication tomorrow in Colorado because it is not that easy and many procedural steps are required.  Once we move to Denver we still have to get on the waiting list for the medication, so it will still be some time before June is able to try it, but we are hopeful and excited about this next step.

Thanks for all your thoughts and prayers.  I will update you all through the blog as we know more, but we wanted to let everyone know as soon as we made the decision.  So our journey with June continues…on to Colorado.

Here we go again: Tonic Seizures

Last week we took June to children's for an EEG because we thought she was having seizures again. It turns out she is having tonic seizures. These are different than infantile spasms. Doctors tell us they are not as catastrophic to development as infantile spasms, so we are taking that as the silver lining. But I'm still in the beginning stages of researching to learn what this seizure type means. The brain is so darn confusing! Right now, we are trying to get them under control with medication. Here we go on this crazy roller coaster again. Please send healing prayers/thoughts/vibes to June. She's already been through so much. She started a medication for her kidneys last week too and we are hoping that works as well.

Paging Dr. House

The Jessee family had a fantastic summer.  I can’t count how many times I said to Matt something along the lines of, “Can you believe that last year at this time we were in the hospital completely overwhelmed with fear and now we’re doing [insert some completely normal family activity here]?”  It was really wonderful.  We took June to the pool almost every week, we went on walks, we had play dates, and I even took her with me to run errands at the store. Life was good.  The highlight of our summer was our two-week road trip to DC, the Outer Banks of NC, and then Richmond, VA.  Matt and I met in DC, and we still have lots of friends living there, one of whom was getting married, so we decided to make a family vacation of it.  Before the wedding we saw some friends and after the wedding we went to the beach in North Carolina.  On our way home we stopped in Richmond for Matt’s grandfather’s memorial service.  It was so much fun.  June had a lot of first experiences.  First road trip, first taste of BBQ, first trip to the beach, first time touching the ocean with her itty bitty toes, she even got her first kiss from an adorable little boy named Baker (our friends’ son).  They were smitten. The best part was being together as a family without the constant reminder that something is wrong. While I am grateful for all the early intervention support June receives, it was nice to get away from the therapists and the doctors.

June with her first boyfriend, Baker

Pictures from DC

Outer Banks, NC

When we returned home, it was back to reality with appointments and therapy. While June is making many amazing developments and is so, so happy, she is now having some issues with her kidneys. The kidney problem came to our attention when June was weaning off ACTH.  While on ACTH her neurologists instructed me to check June’s urine for glucose several times a week, as spilling glucose into urine is a possible side effect.  The urine strips they gave me had other things to test for besides glucose including protein, microscopic blood, leukocytes, etc.  I, of course, tested for everything and noticed June had protein and microscopic blood in her urine that wasn’t there before. I didn’t know what that meant but I alerted her pediatrician, and he told me the sample was contaminated, and that I was doing something wrong.  I told him I didn’t know how I could continuously contaminate a sterile urine bag with protein or blood, but he assumed it was nothing to worry about. Finally, and I think only because I kept bothering him, he put me in touch with a pediatric nephrologist.  [As a side note, we’ve since switched pediatricians because I want to have a partner in June’s health care who trusts my judgment. This is the second doctor that has disregarded my concerns and turned out to be wrong. I find that disconcerting. Why are these doctors assuming I’m just an anxious mom? And even if I was, isn’t it better to investigate further to be certain? I keep asking questions until I understand, but what if I hadn’t? It makes me angry that I had to do so much for the doctors to take me seriously, but I digress.]

After meeting with the nephrologist we learned that June has proteinuria, which means she has excess protein in her urine.  Nephrologists quantify the amount of protein in a urine sample through a protein/creatine ratio. The normal amount of protein/creatinine ratio in our urine is less than .2.  June’s was 11. Yeah, that is high. We’ve monitored it every two weeks over the course of the summer and it has since gone down, but it remains very high signifying a serious problem with her kidneys. 

Our kidneys have many functions, but one of them is to serve as a filter or a sort of pasta strainer, if you will.  When kidneys function properly, they keep the nutrients in that our body needs (the pasta, or the protein, in June’s case) and they filter out the waste (the water, or substances we do not need).  At this point in time, going back to the pasta strainer analogy, it appears that June’s holes in her pasta strainer (kidneys) are too large and pasta (protein) is falling through the holes with the waste. Over time this can cause lots of problems to other areas of June’s body because she will loose valuable nutrients that her cells need to work properly.  The next step is to biopsy June’s kidneys to hopefully figure out why they aren’t working correctly.  This is challenging to do on a baby, but modern techniques generally allow doctors to perform the biopsy safely and effectively.  Unfortunately, though, a biopsy may not provide an exact answer to the question of what is causing the proteinuria, in which case, I am not sure what we will do.

What does this all mean and how does it relate to June’s overall health?  No one knows.  Is this a coincidence that June has hearing loss, brain issues, and now kidney disease? Probably not.  What is linking the three and are there other organs in her body that are affected? No one can say for certain. These are the types of questions Matt and I ask all of June’s doctors and no one — not a single doctor, can answer them.  One possible answer to all of June’s symptoms is something called mitochondrial disorder, which means there is some error in June's mitochondrial DNA (mtDNA) or within the mitochondria in the nuclear DNA (nDNA) that probably took place right after conception.  To put it simply, the "bad" DNA likely replicated and is in various cells in her body causing problems in different organs.  Doctors start to look to mitochondrial disease once someone has 3 or more organs with unexplained problems. This is not an easy condition to diagnose because we can’t test every cell in June’s body. For example, if we biopsy one cell in June’s kidney, it may be fine but the cell next to it that we didn’t biopsy may have problems.  It’s like searching for a needle in a haystack. In short, we can get a positive result, but we could never get a negative one.  I suppose it doesn’t matter though because unfortunately there is no cure for this condition and we can only treat the symptoms as they come assuming the symptoms are treatable.  We don't know for sure that she has this, but it is a scary possibility.  I’m hoping there is another answer to all of her health issues, one that is solved easily.

In other health updates, June’s brain is processing sound since her spasms stopped.  Before, noise wasn’t getting past the 8^th nerve in her brain and now it is.  She does have moderate hearing loss in her right ear and mild in her left.  It’s possible June could still have some processing problems in conjunction with the hearing loss, meaning she hears loud sounds, but she isn’t quite sure what to do with all of it or some of it.  I like to think of it as someone speaking to me in another language.  I hear the person talking, but I don’t understand what he is saying and talking louder isn’t going to make me understand.  So we have to help June learn to interpret what she hears. We are also using hearing aids and they appear to help her, but we are keeping a close eye on it at the same time.  In terms of her vision, the speed at which images go from her eyes to her brain is now within the normal range.  When June had IS, it was not.  However, the image is reduced. I am not sure what that means functionally and we are waiting on an explanation from the doctor, but I imagine he is going to tell me “I don’t know.”

I usually like to end my posts with something positive or some kind of encouragement for myself to hold onto, but I’m having a difficult time doing that right now. The truth is I’m tired.  I’m tired of hearing “we don’t know” from doctors. I’m tired of all the appointments.  I’m tired of all the tests and procedures.  I’m just plain exhausted in every sense of the word.  In my last post I said anything from here on out we can handle, and I know we can. I just don’t want to.  I want to go back to those two weeks on vacation where Matt, June, and I were a “normal” family, doing “normal” family things, without weekly trips to the children’s hospital. At the same time, I want someone to tell me what is causing all of June’s problems. I want a medicine or a procedure that will make her organs work properly. At the very least it would be nice to have a diagnosis that could tell us what the prognosis is.  I want Dr. House and his team of doctors to sit around a whiteboard, crossing ideas off and eventually diagnosing and curing our Juney, but I can't find him.  He only exists on TV and that just stinks.  The main thing that keeps me going is June’s smile and her sweet giggles.  At this point she isn’t in pain and I just hope and pray that June’s kidney problem is something that can be treated.  Thanks for reading.  Getting my thoughts out on this blog helps me process all the moving parts in a way that I can understand and it helps having your support. As always, we will write an update when we know more. 

You Are A Gift From The Heavens

“I don’t see anything that looks like spasms,” Dr. Thio said to me with excitement. Randomly, I ran into June’s neurologist on my way to the restroom during June’s EEG appointment.  I told him June was in the EEG room if he wanted to say hi.  In the back of my head I was hoping he would take a peek at her EEG and give us a real-time reading. And he did.  He said he needed to take a look at the whole report, but from what he saw on the screen, June’s EEG looked good.  Thank God I ran into him, I thought.  I wouldn’t want to wait to hear that fabulous news!

After further review of that EEG and an additional 24-hour EEG study, Dr. Thio has confirmed that June is no longer having infantile spasms or any other seizure activity.  I’ve dreamed of writing those words for the last year, and I am never going to stop cherishing them.  It is a miracle we found a medication that worked after so many others had failed.  So what did it, you ask? We think our miracle drug was Topamax, a seizure medication also used to treat migraines in adults, but it could have been a combination of treatments.  Here is a little bit of the back-story.  

My last post was right before June started ACTH.  I didn’t write while she was on it because there wasn’t much to report besides all of the nasty side effects of ACTH.  I also wanted to see how it all unfolded before writing an update.  Things seemed to change on a daily basis, so I didn’t want to write one update then write something completely opposite the next week.  That confuses me and makes me realize how up and down our lives are.  Needless to say, it was a bit of a roller coaster ride and sometimes you only have energy to sit back and just go with it.  Only when you get away from it, can you understand what you’ve been through. 

On ACTH, June gained 6 lbs. in a month, which was a third of her bodyweight.  It was like living with the Very Hungry Caterpillar.  The drug also made her irritable and uncomfortable.  Towards the end of the treatment, she slept most of the day and night because it was difficult for her to do anything else.  Even her breathing became labored while resting.  It was not fun, and it was difficult to watch, but it wasn’t as bad as I had anticipated.  When I look back at it though, I wonder how we got through it, but we did.  Thankfully, we had a lot of help from family and friends, and we also had home health nurses to check on June a few times a week. Other side effects of ACTH include high blood pressure and suppression of the immune system, so the nurses kept an eye on those issues as well as June’s overall health.  

After two weeks of the ACTH treatment, June had an EEG, and it showed she was still having spasms. I was not surprised because we were still seeing seizures, but there was a dramatic reduction in the amount she had daily.  I knew that didn’t mean much though.  As I’ve mentioned in other posts, with IS you have to stop the spasms completely; it’s not about reducing seizures.  Most of my life I’ve struggled to combat all or nothing thinking, and now I’m dealing with an illness that is really all or nothing.  There are no “shades of gray” with IS, how is that for irony? 

When the spasms hadn’t stopped, we decided to keep June on the high dose of ACTH for another two weeks to make sure we gave the drug enough time to work.  Two weeks later, the EEG still showed spasms.  This time I was really disappointed.  We stopped seeing seizures at this point, and I was sure that ACTH had worked. But all that matters is what the EEG says, and spasms can be so brief that it is difficult to see them.  It was time to move on to something else. The ACTH wean would take a little over a month, so we decided to start Topamax concurrently.  

When I left the hospital that day, I felt defeated.  June had already tried 8 medications, and we were now moving toward medications that statistically weren’t as successful as the ones we had already tried.  I was happy that there were still options, and I was hopeful it would work, but realistically I didn’t think it would.  “Stay optimistic,” I said to myself, “but it’s time to accept that June will likely have seizures for the rest of her life.”

About a week later, we still didn’t see seizures.  We thought she was still having them, but we were unable to notice them like Dr. Thio had explained.  Something different started to happen though.  June was alert, responding to noise consistently, and she was really looking at us.  We could calm her by holding her when she was upset, which was totally new for us.  She just seemed like she was seeing the world for the first time.  I’ve talked about her big personality fighting to come out of her small body, and it really was.  Whereas before we saw bits and pieces of her come out for short periods of time, now we see her all day long.  I imagine her saying, “Mommy, I know it’s been you all this time. I know you’ve been reading, singing, and talking to me.  Even though it seemed like I didn’t realize it, I did.  I knew your mommy hugs and daddy’s kisses. I knew.” 

So a month after starting Topamax, we had another EEG and that’s when we got the good news that June wasn’t having spasms.  I didn’t cry tears of joy when the doctor told me.  One would think that I would, but I didn’t.  I do cry when I see June do new things though.  When she started opening her hands and hitting the toys in her gym, I cried.  When I went to Target and first bought her a toy at 14 months that I knew she could play with, I cried.  When she gives me a smile that I now know is meant just for me, I cry.  When I reflect on all we’ve been through this last year, I cry.  When I think of the babies and families I’ve met through support groups or in the halls of Children’s Hospital, I cry.  Most importantly, when I think about the outpouring of support from family, friends, therapists, doctors, nurses, EEG technicians, and people we’ve never even met, I cry. Those things mean so much more to me than what the EEG says. 

I do realize the clean EEG is the reason June is making big strides, but I’m deciding to not let the EEG run our life.  I also know it is easier for me to make that comment on this side of things.  If someone had said that to me a few months ago I would be saying all sorts of curse words about him or her in my head :).  But, it is an important concept for me to emulate because the spasms could come back, and June is at risk of developing other seizure types. I can’t live my life scared of the next EEG.  And believe me, if left to my own devices, I could wrack my brain with fears and anxieties that would debilitate most moms.  So I don’t. I choose to let it go, and the funny thing is, I actually do.  The person I was before June would never have been able to let things go like I do now.  I stop as soon as I spiral.  I tell myself to enjoy these moments and if June’s seizures come back, we’ll handle it.  I’ve already been through something I never thought I’d be able to do.  Anything else from here on out, I can handle.

What an amazing teacher June has been to us all.  In closing, I want to share a poem that another mother shared with me. I think it sums up June and our journey over the last year. 

 I believe that God sent you into my life 

to give me something to fight for, 

to show me there is love in this world, 

to give me hope and to bring me joy, 

all the proof in God I need is in you, 

you are a gift from the heavens.

We know we are not in the clear, and we still have a long road ahead of us, but we took a huge step in the right direction.  Thank you so much for your continued prayers and support.