Moving forward

Thank you everyone for your thoughts and prayers. Receiving your emails and messages today while we sat in the family waiting room kept our minds busy and our thoughts positive. Believe us when we say that we draw strength from each and every one of you.

Chloe's surgery today for her left ear cochlear implant was a success!! She slept through the morning pre-op activities and did not make a fuss. She even slept in my arms as I carried her through the hall to the OR when we were called. She looked like an angel.

It has been difficult these past few weeks to digest the possibility that Chloe has not heard any sound or our voices for the past 5.5 months. We are not sure when she lost her hearing, if it was immediate on that first night we brought her in or if it was a gradual loss. It was always a question what she could hear or see. Either way, it saddens us to know that she has been 'in the dark' even for part of the time. We know she knew who we were and when we were near or holding her close. It's hard to explain unless you've been in this place. A baby always knows when her mother or father is near but when any of your senses suffers a loss, there are other ways that your body communicates. Deep in my heart, I know Chloe has heard us - all those precious moments when we sang to Chloe to keep her calm, prayers and nightly I love you whispers, Olivia singing her favorite lullabies and making kissing sounds over the speakerphone. She heard us, she felt us. Still, I think about how many times Olivia calls my name and how sweet that sound is and how calming one of our voices can be when she is upset and I think about how lost Chloe must have felt at times to be yelling out loud and feeling like no one was there to answer her. Maybe this is why her eyes have stayed strong so she can see where we are at all times. She is constantly looking around for us when we walk away.

Moving forward with this surgery is a big step for Chloe and for our family. Chloe was a champ, as she always has been in surgery. We are so thankful to her ENT for suggesting that we move quickly in our decision to go ahead with the implant. Like we said earlier, there is a chance of ossification of the cochlea. Most often, this happens within the first 6-12 mos after meningitis. As of two weeks ago, Chloe's cochlea was soft and clear but as the procedure moved forward, the doctor saw that the cochlea had indeed started to harden and it was a bit more complicated as he had first expected. He was able to find another area of the cochlea to properly implant, though slightly more difficult, and he is confident that all was a success. We will wait to see how Chloe does with the one implant. Her right ear, again, poses more difficulty in that her VP shunt will have to be moved and there are certain risk factors of infection involved but we will cross that bridge when the time comes.

For now, we are praying for a speedy recovery for Chloe. She has been in some pain today since waking from her anesthesia. Chloe has been fussy and tends to whine during difficult transitions or when she is tired from being worked so hard. Unfortunately, we have seen actual cries and big tears today. She is home, though, and resting in her own bed. The bandages will come off tomorrow and we will see her incision for the first time. It should heal over the next few weeks until it is time for her initial activation on April 20th.

We will keep you posted on any news. Until then, please keep her in your thoughts and prayers as she recovers and heals.

Much love and thanks,

Michelle, Reth, Olivia and Chloe

An answer of hope

Chloe’s MRI results came back and she is definitely a candidate for cochlear implants. We apologize for the delay in sharing this news but there were various teams that we had to consult before making a final decision and we only found out just days before we left for our family trip to Disney World.

Two weeks ago, Chloe had another MRI that would determine if her cochlea had ossified (hardened into bone) which would have resulted in permanent deafness. We met with the otorhinolaryngologist (ENT) immediately following the test and were told that Chloe’s cochlea were soft and clear, allowing optimal clearance for the implant. As we heard the news, tears began to roll down our faces and we took a moment to just breathe before listening to what everything meant. Throughout this whole illness, Chloe has suffered through every complication imaginable and we had yet to come up with an answer that would bring us some kind of hope. It has seemed like nothing has worked in her favor and she has been unable to catch a break. With the news that cochlear implants were a realistic possibility, we were given an answer that would bring us much hope for rebuilding.

Yes, there are some risks and complications that we have to consider but we have consulted all our medical teams to make the best decision for Chloe. With the approval from her neurosurgeon and neurologist, we have decided that it is best to move forward with the implant surgery on the left ear. If Chloe does well with this implant, we will then consider another surgery for the right ear. The right ear poses some complication in that we will need to have her neurosurgeon move her shunt since it is in the exact place of where her implant will need to be placed.

I know there is controversy over cochlear implants. There is a debate whether ‘normalization’ is the key to success for deaf children or if we should see deafness as a cultural identity and not a disability. In grad school, I talked about this subject everyday and believed that there was no such thing as ‘normal’ and that each individual was special and unique. I have followed this way of thinking in my own teaching style and truly believe that each child is different and has many ways of learning and finding success. I am in no way trying to find a quick fix for Chloe to make her ‘normal.’ I figure I’ve passed that point a few months back but what we do want is to give her every possible way of understanding the world she once knew. I may be selfish in wanting this or wanting to find an answer to the many obstacles we’ve faced but Chloe was a healthy, hearing child beforehand and was beginning to make sense out of her hearing world. I somehow wasn’t able to protect her from this illness so if I can find any answer to heal her or bring her back to the baby she was then I have to follow that path.

I have seen the ugly truth of this illness and I have been witness to some ugly looks and remarks towards people with disabilities and I do not want that for Chloe. As much as I can, I want to protect her even more and not have her grow up in a world that she feels like she has to explain herself to or that she feels like she is being looked down upon. I know that this is my adult perspective looking at this and maybe (hopefully) she will grow up in a society that is much more tolerable of differences but already in the past few months that she has been sick and recovering I have seen those looks and have heard those comments that make me sick… and it’s not fair.

Again, we must apologize for the late notice but tomorrow we are scheduled to take Chloe into Cornell at 7AM to have her left ear cochlear implant placed. We wanted to have this past week to enjoy the calm and celebrate all that our family has overcome. Before Chloe became sick, we planned a trip to Disney World for the girls and after everything we knew we had to stick to this plan. We all deserved a little fun and relaxation. The trip was an absolute success!! Chloe did well on the flight there and back. We managed with all her gear and feeding equipment. Both girls had a blast swimming in the pool, walking around Epcot, meeting the characters at Disney, and enjoying lots of family time. It wasn’t so much a restful vacation but every night as we tucked the girls into bed, Reth and I were so proud of them and so happy that we were able to do this for the girls. We’ll post some photos on the next blog entry.

We arrived back late last night and are now preparing ourselves for tomorrow. We hope and pray for a quick recovery. If all goes well, in three weeks Chloe’s audiologist and ENT will do the initial activation of the implant and Chloe will be able to hear. It will take 5 or 6 visits to the doctor to gradually bring up the volume of the implant. Cochlear implants will normally restore a person’s hearing back to normal. Chloe has suffered a series of complications that may alter this outcome but we are very optimistic that she will find success and that this implant will bring back most of her hearing and will allow her to have normal speech development. We ask for all your positive thoughts and prayers.

Much love and thanks,

Michelle, Rethier, Olivia and Chloe

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