A month of highs and lows

This past month has again been yet another emotional roller coaster.

We were overwhelmed by everyone's birthday wishes. It was a great day with our family gathering together for a lunch to celebrate Chloe's big milestone. Chloe sat at the head of her table, eyes wide open, taking everything in. She looked beautiful sitting up in her wheelchair and looking around at all her guests. She even took a taste of the frosting from her cake! A bit of a grimace but she liked the taste once we got it in her mouth. Olivia snuck a swipe of the icing as well and enjoyed!

Therapies have been going fairly well with Chloe. We continue to give her little tastes of food with her speech therapist. We have found that once again, she loves sweet potatoes! Chloe's ability to swallow has shown some improvement over these past weeks and she is able to swallow faster than before. She still does not enjoy the different tools touching her lips but we are slowly working with her to make her more comfortable. Chloe's OT has been working hard with improving her head and neck control. We have seen such great work from Chloe as she is able to tuck her chin and bring her head up with little assistance when we bring her from a lying down to sitting position. Chloe is also able to bear more weight on her arms while lifting her head. It is exciting to watch! It seems like she is also becoming more aware of what she is doing and her eyes light up when she is able to bring her head up and look around. Unfortunately, her other services have not yet been completely scheduled so we are still working towards finding the right people for her physical therapy, vision and sensory integration.

Another milestone that we have been waiting for is Chloe's smile. Early February, right before her birthday, Chloe began to smirk. It brought tears to our eyes and you could see she was trying so hard to bring out her true smile. These past few weeks have brought not just a curl of her lip but an upward lip smile and we have even caught glimpses of her open mouth gummy smile that we have so longed for. Even better, Chloe has been responding nicely to softer touches so we have heard a deep sounded chuckle as we give her little tickles.

This past month we also focused on getting to know and understand more about Chloe's ability to see. Since we've been home, she has been looking around much more and seems interested in her environment but we have been unsure of how much she is able to process. After consulting with a neuro-opthamologist and a pediatric opthamologist, we found that Chloe's optic nerve is intact and shows no damage. It is still difficult to test how much Chloe can see because she is so young but she is definitely able. One thing they did notice, however, is that her eyes sometimes drift off to the side. She tries very hard to focus midline and keep her eyes straight, but usually her right eye will go off to the side. For now, the doctors say that she is doing a lot of work on her own and trying very hard to keep both eyes straight so they do not want to interfere with her efforts. If we see that this condition worsens, we will consider patching her eyes to make them stronger.

The hardest part of this past month has been coping with more definitive findings regarding Chloe's hearing. Last week, we returned to Cornell to sedate Chloe for another round of tests, the ABR and OAE test. The initial test done at Blythedale showed such abnormalities that Cornell wanted to redo the test and make sure they had accurate levels for Chloe's hearing loss. It turned out that both ears showed severe, profound loss. As I stood by Chloe's bedside waiting for her to wake from her sedation, I was devastated. I was even more devastated to hear from her audiologist that hearing aids were most likely no longer an option. The ENT found me in the hallway to confirm this news and told me that an MRI needed to be ordered to really look at an image of her ears and see how much damage was done to her cochlea and if there were any other measures that we can now consider.

With this news, I called Reth and sobbed. We had hoped that there would be some hearing that we could work with along with learning sign language but the realization came that without any ability to amplify sounds and help her hearing loss, Chloe would not have the tools to give her normal speech development.

As I paced around Chloe's crib, there was one last possibility that the doctors brought to my attention - cochlear implants. We will have to see from the the MRI if there was any hardening of the cochlea. If in fact her cochlea is healthy or not too badly affected from the meningitis, we can consider putting in an implant that will restore some or most of her hearing. Again, we will need to sedate Chloe to go through this imaging test and hope that this will bring us an answer that will help her along. She has come so far and if we can just catch a break, if she could just be given this chance... Chloe has suffered from and endured every complication that this terrible illness could bring on and if we could just find some way to ease her, to help her along, well it would obviously mean the world to us.

Please keep us in your thoughts as we go through the next few days as we find out more information.

Much love and thanks,

Michelle, Rethier, Olivia and Chloe