Again, it has been so long since we have taken the time to write a real update on Chloe. It has, as always, been a busy time for us and we are constantly adjusting to Chloe’s routine. We do not have much information to offer other than it’s a day by day process when it comes to understanding Chloe and her needs. It is hard to answer your question when you ask, “How is she?” Our blanket answer is that she has good days and bad days. This is not in anyway a means to avoid the answer, it is the simplest truth that we can offer.
I can’t sugarcoat much anymore because I wear the stress on my face and in my body so the truth is that the last two or so months have been difficult adjusting to Chloe’s cochlear implant and staying in step with her therapy regimen. Chloe begins her day at 8:15am and has her last session at 4pm most days. Yes, of course, we have breaks in between but she does not have much rest (nor do we). By the end of the day, we are mostly tired, somewhat broken and frustrated but we try to find the good points of the day and celebrate our accomplishments.
Since her cochlear activation, Chloe has not been able to keep the hearing aid on consistently. Because of her lack of head control, the slightest movement of her head knocks off the outer piece of the cochlear that is a magnet that sticks to the back side of her head. We’ve tried and tried to troubleshoot but we have not found any solutions yet. We’ve gone up one magnet strength but to go any higher may cause irritation or breakdown of her skin. Headbands are only made so wide for little girls. Next attempt will be trying to sew a headband with a pocket. Those of you who know me well I’m sure are laughing since I do not sew but I’ll try anything for my little girl.
Adjusting to having a hearing aid and the constant placing and replacing of the magnet has troubled Chloe. At first, she will let me put it on and will wear her piece for awhile as she sits next to me in her chair but once she moves and I start to fuss with the piece and constantly poke at her head, she becomes inconsolable. I’m sad to say that she has been sad most days and cries most nights and we have not seen her smile or laugh since before the surgery. We’ve made so many excuses – she’s still getting used to it, she still has some pain, it’s another adjustment, and on and on – but now we are just longing for her little smile to return. We had it back for a brief month or so and are so so sad to not see it. At times, we find that she has a very calm facial expression when she looks at us and we have accepted this as her way of telling us that she is happy but I can’t lie – it’s devastating to not see her smile even once a day or even every other.
Another new update that is not terribly positive is that Chloe has been having seizures again. A few weeks back, Reth and I noticed a peculiar behavior that Chloe began to show when she woke up from naps. She would impulsively shoot out her arms and legs and roll her head and eyes as if she were completely startled. At first I thought she may be hearing a new noise and was experiencing being scared but then we noticed that these bursts happened more and more often. Soon, we realized they were not a controlled movement as they would scare Chloe so much that she would frown, pout and cry after each movement. After speaking with her neurologist, we thought it would be best to have a video EEG done to watch her brain activity and look for seizures. This past Monday, Chloe was admitted to NY Presbyterian for an overnight study. Within 10 minutes of the leads being placed, Chloe began to do this behavior and I quickly ran out to find the doctor. Shortly after, our neurologist confirmed that she has been experiencing different types of seizures and dips of activity. Over the 24 hour study, they pointed out three different ways that Chloe was displaying seizure activity along with subclinical ones. Whether she was in a long daze or stare, wincing her eye or jerking (very slightly) her head, or having a startling burst, they were all forms of seizures. There is a higher occurrence at night but they do happen during the day as well. Her seizures are very short in duration so they are not damaging and we have started her on a second anti-seizure medicine. We hope that her body will adjust positively as the next aggressive step would be to give her steroid shots in her leg which we obviously want to avoid. The medicine should also help with her irritability, the doctors say. It has been clear that Chloe has become much more agitated at night and that these bursts or seizures upset her so we are very hopeful that this medicine will ease her.
It continues to be a long, stressful road for us and we are trying very hard to keep things together and be there for Chloe. We continue her therapy as always during the week and try to enjoy our weekends as a family while we give her a slight break. It has not been easy and we are thankful for all your support as always.
Much love,
Michelle, Reth, Olivia and Chloe
