Missing Me

Just when I thought we couldn’t get more bad news, we received the results from June’s Flash VEP (Visual Evoked Potential), which measures how the brain responds to flash stimulation or, in other words, light. The results showed that June has a recordable signal from her eyes to her brain, but the signal is reduced and it is slower than normal. If you are like me, you might be thinking, ‘okay, what does that mean?’ I asked that same question to the woman reading the results to me over the phone, but she kept repeating herself. She finally admitted that she didn’t know what that meant, and she would have to ask the doctor and get back to me. Why the doctor did not call me to discuss the results is beyond me. It is really unfortunate that they have someone call a mother with negative test results who can't answer any questions about them. But my aggravations with patient care and inefficiencies are for another post at another time.

While I still have not heard back from June’s ophthalmologist, the little I’ve researched about June’s VEP results sounds very similar to June’s ABR hearing test (auditory brainstem response) results. The ABR tests the brain’s response to sound. For those of you who do not know, June was initially diagnosed with Auditory Neuropathy, a hearing disorder in which sound enters the inner ear normally but the transmission of signals from the inner ear to the brain is impaired. This all leads us to believe that June may not have a hearing problem or even a vision problem, but a brain processing problem. In fact, June’s amazing audiologist at Moog sent an email about June and a brief summary of her health history to audiologists all over the world asking them to weigh in on her diagnosis. A world-renowned audiologist, Dr. Charles Berlin, has asked to review June’s health records to confirm if she even has auditory neuropathy.

So, we are still in the investigating stages and it seems that even previous diagnoses are now being questioned as we learn more about June. Every now and again, I have days where I feel sorry for my family and myself. I wonder why this is happening to June, and I fixate on how this happened. These days usually happen after we get bad news from one of the doctors, which seem to be occurring more and more. Yesterday was one of those days for me. I was desperately trying to make sense of it all and replaying days in my pregnancy wondering if it was something I did to cause all of this. I was so careful and yet this is all still happening and all I could focus on was "why June?, why us?"

Thankfully this morning, I was brought back to my senses. When I woke up I found Matt and June playing downstairs. June was smiling and laughing. That made me so happy. A little later, I turned on music and started to rock June to sleep. As she was looking into my eyes and smiling I heard Jack Johnson sing, “If you would only listen, you would realize what you’re missing, you’re missing me.” Never have words from a song spoke so well to me. It felt like June was saying that to me. Yes, I am sad about all of this, but I still have a beautiful baby girl, and I don’t want to miss a second of enjoying her. So, today I am going to step away from the doctors, the tests, and the worrying and focus on just loving Junebug.

Summer of June

June Corley Jessee was born on April 29, 2012 at 6:28pm.  She was 8 pounds 9 ounces and 21.25 inches of pure love.  As with any mother, June’s first few moments in this world will be forever imprinted in my brain.  I remember how June’s skin felt against mine when the doctor placed her on my stomach after delivery.  I remember the sound of her first cry, and I remember how proud and happy my husband was as he cut the cord, took June’s first pictures, and told me her weight and height.  I also remember how blessed we felt as we looked into her beautiful blue, almond shaped eyes.  It was by far the best day of my life. 

Today, I have even more love for June than I did on that rainy day in April, but it is a love that also comes with worry, fear, and desperation.  This summer, Matt and I have taken June from doctor to doctor, hospital to hospital, specialist to specialist.  At first she was diagnosed with "Auditory Neuropathy," a type of hearing loss associated with how the brain processes sound.  Then, when June was a little over two months, she started having Infantile Spasms "IS," a catastrophic form of epilepsy found in babies.  One of the biggest challenges with IS – and there are a lot – is that there are many, many possible underlying causes. This means there are many, many possible outcomes.  I'm told you will see families with children who are struggling greatly, as well as children who have made tremendous progress. Another mother warned me not to compare June to other children with IS and try not to get too hopeful OR too fearful from the stories I’ll read.  

Now, we are focused on figuring out why June is having Infantile Spasms.  She has already been through so much including an MRI, a spinal tap, many EEGs, eye exams, a VEP and several blood and urine tests.  So far all the tests for underlying causes have come back negative, but we are still waiting on the genetic test results (there are about 30 genetic disorders that can cause IS).  At the same time, we are treating the spasms aggressively. So far, we have tried six different medications and while June has stopped exhibiting outward signs of the spasms, the EEG shows that June is still having abnormal brain activity indicating spasms.  June’s neurologist told us that it can be difficult to tell when a baby is having spasms and often the only way to tell is through an EEG.  He also said that unfortunately it is an all or nothing proposition.  June could be having 1 spasm or 100 spasms a day and the concern would be the same. Unlike other forms of epilepsy where the goal is to control seizures through medication, the objective with infantile spasms is to stop them completely so that brain activity can return to normal.  Only when the EEG is normal, can a baby begin to develop normally.    

Next, we are taking June to Dr. Chugani at Children’s Hospital of Michigan who is the foremost authority on IS so that he can evaluate her for surgery.  In the meantime, we are trying different medicines and hoping we will find our miracle drug.

Please keep June, Matt and me in your thoughts and prayers.  I've been amazed at how brave June has been over these last five months through all the tests, doctors, and medicine.  Through all of this, she still smiles, laughs, and squeals.  She is a happy baby even after all that she’s been through, and we can all learn from her strength.  I know we will get through this, but we need your continued prayers and support to help us.

About This Blog

Matt and I decided to create this blog so we could update our family and friends on June’s progress.  June has Infantile Spasms, a catastrophic form of epilepsy found in babies. Feel free to subscribe via email and check back often for updates and pictures.  Thank you all for your support and prayers for June.