New Adventures in Colorado

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 3^rd 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 6^th. 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.