Oh goodness! I have so much to update since my last post on
April 26 about June’s birthday party! I write shorter updates more frequently
on June’s Facebook page,
so feel free to check that out if you are looking for more regular happenings
with June.
Two days after June’s birthday party we moved to
Colorado to start June on "Haleigh’s Hope", a high CBD strain of medical
marijuana, and she is doing fabulous! We started the oil on May 3rd and so far her
seizures have gone down by 50-60% and they are shorter and less intense. She is better than ever. June’s holding and controlling her head, interacting with toys, and just overall more alert and happier and calmer. Did I
also mention she’s sleeping?! She’s napping twice a day and sleeping most of
the night. Those are a few of the
highlights of the positive impact of the CBD oil. Everyday June seems to be
making new connections. Yesterday, I was reading her a book on jungle animals, and she laughed when I made a monkey sound! She’s never done that before. It’s
little things that make the most difference to us.
I really wish I could end my post here. Just leave you all
with the wonderful news and sign out until my next update telling you about
June’s new accomplishments and how she’s thriving, but that’s not all. The good always seems to come with some
bad news with us. In previous
posts, I’ve mentioned June’s other health issues. In addition to epilepsy, June
also has hearing loss, cortical visual impairment, and nephrotic syndrome. I’ve
always focused on the epilepsy because that is the most pressing issue, but
lately June’s kidney problems are trying to make their way to the number one
spot on our worries list.
As June is doing better on the CBD oil, I was starting to
think that maybe all of June’s health problems were neurological. I was rationalizing that maybe June’s
kidneys weren’t growing properly because her brain wasn’t telling them to grow.
That was a logical explanation that made sense to me. The brain controls
everything, right? And if that assumption was true then if we could stop June’s
seizures, she would be healthy and better and all her problems would go
away. See, as a parent of a child with complex medical issues, we want to be able to make sense of it all. At
least I do. Well, then I was sitting in June’s nephrologist’s office telling
her my theory and explaning that I thought in no time the protein in her urine
would go away now that June is on the oil and her brain is working better. June's doctor listened to me and when I stopped she calmly said, “It
doesn’t work that way. I don’t think that is going to happen in June’s case.”
I shot back, “What do you mean?! Doesn’t the brain control
everything? Her brain just needs to tell her kidneys to grow, that’s all! And
you guys don’t even know what is causing all of her problems so how can you
tell me that my theory is wrong?” I was so angry that I started to get teary.
The doctor explained to me that June’s biopsy results indicate a problem in her
kidneys that are more complicated than a neurological issue. Then I just
started to hear her voice but didn’t take in anything she was saying. All I
could think was this doctor didn’t know anything. I was mad and I left angry and
went to my car and called my friend and just started to cry. When I first
called, it was to tell her how much I hated June's new doctor and that I wanted a new
one. But then as Hannah listened
and I talked, I realized that I didn’t hate the doctor. I hated June’s health
problems, whatever it is. I finally let out a big cry and said, “I'm just so
tired...This isn’t the life I wanted to live.” I just imagined something so
different for Matt and me and our family. Sometimes, I see people at the park or
the pool and I think, they are living my life. And that’s just the truth. But
then you go on and you keep living because your life is what you make it. Life is better when you stop imaging the way things are supposed to be and you just live them the way that they are.
Well, a few days later we got June’s urine results back and
it turns out my theory was wrong and June’s kidney function is actually getting
worse, not better. I was still holding hope that my theory
was right and I was disappointed and shocked when the doctor told me how high the protein to creatinine ratio is in June's urine. So now they want to put June back on a
steroid to see if that helps her kidneys hold on to protein. The good news is, for now, June is
stable. Her blood protein levels are normal, but we’ve really got to get this
under control or eventually they won’t be and no one has told me what to expect
when that happens or when that could happen.
When I heard this news I was so upset. I said to Matt, “June
is doing so well and she is so happy. Can’t the universe just let me have a day
of pure happiness with June?” Matt said that June is still all those things and
the urinanalyis doesn’t take any of that away. I am so lucky to have Matt. He
is so strong and supportive, and he is my rock. I just hope I ground him like he
does me. So, June will likely start the steroid on the week of July 6th.
It is not going to be as strong as ACTH, so I hope the side effects will be
less intense. As always, thanks for your prayers and support.
