One year...

It has been one year. One year since we’ve seen her big smile. One year since we’ve heard her laugh, since we’ve seen her play and bounce and sit up. One year since she has looked at us with her sparkly eyes. One year since we’ve enjoyed a meal with her laughing and begging for more food. One year since she and Olivia played and rolled around together without fear. It’s been one year since we’ve held her in our arms and felt her arms wrap around and squeeze. One year since she's held her arms up high to reach out for us. It’s been one year since we’ve felt her lips move to kiss us back.

A year ago today, we held Chloe limp in our arms moaning in pain as we rushed her to the ER. A year ago, we watched a team of then strangers work till 3AM to stabilize our sweet little baby. We watched her gaze fall, we watched her get poked over and over again with no response to pain, we watched everyone move around the room, around her bed, hover above her trying to figure everything out. Our hearts broke and we cried, then we screamed. It’s been one long year of heartache and crying. We’ve cried everyday. It's been a long year of hospital stays, surgeries, blood draws, tubes and needles, doctor visits, tests, medicine, therapy. More heartache. She has never said mama or dada or sissy. She has never crawled or taken a step on her own.

She has suffered more than any of us ever will in our lifetime. To think of her future, it is hard to see past how she may struggle and think how cruel the world may be to her.

But…

My strong girl, you are here with us! You inspire us everyday. You are forever our hero and teach us everyday how to be a better person. We have doubted our parenting, our faith, our being but you have always brought us back. So many people say that we have been strong but it is you who has the strength. A sweet little baby who has gone through so much trauma, yet is still so perfect!

It is so hard and we don’t know what the future holds and we so wish that we could say that everything will be fine and we’ll get through it but we can’t. We follow your lead, Chloe, and vow that we will be here to hold you through anything and everything.

To all of you, our dear family and friends,

We know you cannot imagine what kind of heartache we go through and struggle with daily, so we hope that this blog has been a help to understanding our life. In each letter we write, we pour our candid thoughts to you because you are such a support to us and help us make it through.

Thank you for being here with us, for holding us up when we fall, for listening to us cry and scream, for being silent when there are no words to be said, for everything.

Today we celebrate Chloe and all she has overcome this past year. We give her strength to move forward from dark days. We give her strength as we enter more unknown. We give her strength always.

Much love and many thanks,

Reth, Michelle, Olivia and Chloe

Culture Shock

Since April we have been working with therapists at Clarke School, a school for children with hearing loss, to help provide Chloe with auditory/oral education and guide us in learning about her cochlear implant. Unfortunately, Chloe’s seizures became an issue soon after her implant was activated so her progress has been like much of her life, a roller coaster. We have seen a difference though with the cochlear on as opposed to it off. Chloe’s eyes tend to grow big when she is hearing, her legs kick out, and she seems much more engaged. There are times when she moves her eyes or opens her fingers if she hears a noise. She has not yet started to mimic sounds but she is able to produce different cries and sounds to get our attention.

It became obviously clear in the earlier days that we would have to look for a more specialized setting or school for Chloe when she turned two or three so I have begun looking into different programs for her. With the list of diagnoses and unknown prognosis that Chloe carries with her, finding a school that will fit her needs has not been easy. Some schools will not take a child so young, some schools will not take a child with her feeding needs, some schools do not have equipment or have the therapy she requires, or some schools will not take her in a wheelchair. I have offered to stay with her to help and be there for her transport but our options seems to be limited so far.

With the help of our EI team, we found the Lexington School in Queens. It is a school for the deaf. Yes, Chloe is a deaf child. As hard as it is for me to put that label on her, it is the truth and has been much harder to come to terms with than labeling her physical disabilities and neurological impairments. I could go off on a tangent and talk about how harmful and hurtful labels are to any person but in that one sentence alone of knowing that my once normal hearing child is now deaf, I hope you can understand our heartache. But, we are not alone in this group; there are many others who deal with deafness.

The Lexington School is different than Clarke School in that they concentrate more on total communication that is a mix of speech and sign language. Though I was prepared with this information in mind, I was not emotionally prepared to face the culture shock. I cannot say that I really know any deaf people in my life. I’ve worked along side a couple people and took a class with a deaf student. I learned and taught some signs in my classroom and taught them to both Olivia and Chloe. I’ve never really let deafness or sign into my life though. And when the time came for me to observe, absorb and welcome it, I was not prepared. I have not been prepared for much of what this past year has presented but I lost my balance with this one. I don’t share this story with you to display ignorance or insensitivity but more that I share with you an experience of overwhelming culture shock. It somewhat blew me over to enter into the school community and see the older students walking in between classes and signing and talking. Some had other physical disabilities that you could see but their one commonality was their deafness and the way they communicate. The group that was meeting me greeted me, with both speech and sign. I was thrown into a group of parents, some hearing and some deaf, who shared their stories of what type of device their child wears (if any) or raising children in a deaf community. Like I said, Chloe’s hearing loss has been difficult to digest and working through the implant and its activation has not been easy so finding my place in this community was extremely difficult. And again, what is most difficult for me to accept and share is that we are a family that had a normal, hearing child who went through something catastrophic. Emotions grow higher and become more complicated when I speak to any parent or group that has been going through any kind of difficulty from birth.

My heart sank as I sat in the group. I would never have thought I would be here with my child. It was comforting to know there was a community of teachers and parents who could support us but I was so overwhelmed in dealing with the idea that I was there with Chloe.

After the parent meeting, I sat with Chloe’s teacher to talk more about what the school can offer our family and am hopeful that her instruction will help us to communicate more effectively with Chloe and help us build a bridge between our hearing and deaf world. Chloe is the only deaf person that many of us know and as much as I need her to be a part of my world, I have to understand hers so I am hopeful that this program will help to find ways for us to work together and prepare Chloe for school and future.

Much love,

Reth, Michelle, Olivia and Chloe

Finding the right balance...

Two months have passed and we continue to work with Chloe’s team to gain control over her seizure disorder. It has been difficult to navigate through this process of trial and error of medications, as Chloe has not been reacting well to certain mixtures. For a few weeks, something was making Chloe so ill that she would vomit at least once a day. It was not simple; it was violent and scary. And though she looked relieved and comfortable afterwards, it exhausted her. It became so much of her daily routine that we sat her mostly in a comfortable chair so we would not disturb her equilibrium any more. She would sit with blankets and burp cloths on top of her pretty outfits so we wouldn’t have to change her completely and make her suffer through yet another change or bath. Her seizures seemed to be slightly better though. She did not have such big bursts. They were mainly mild but high in number; there would be a series of about 10-14 jerks. She maintained her therapy regimen and remained fairly calm. Her smile did somewhat return for this period but we soon learned that it was a precursor to her seizures. Some children cry (as we witnessed in the earlier stage), some yell, some giggle, some smile. Her doctor told us that sometimes children see an aura or feel a tickle. How great it felt to see Chloe smile and let out a tiny giggle but seconds later we would be holding her as she seized. It was bittersweet and in the end, we cried more than smiled along side her. A couple times though as we sat and waited for the seizure burst to come, they never surfaced and we sat and held her hand and enjoyed the moment!

We played with new medicine again and adjusted the amounts. We played with the amount of food and the volume of formula versus water she was being fed through her tube. She has not been receiving many calories in a day but thankfully she is still gaining weight. Some days we saw only dry gags and other days it was a mess. We decided last month to try one last medicine before changing her diet completely. It seems like we have been on this constant search for the miracle drug to be the cure all. Life is not that easy though – I ache for the days that a bandaid, a kiss, and maybe some Tylenol would wash away all the bad things in life.

The new medicine arrived a couple weeks ago but having Chloe on three very strong doses of anti-seizure medicine has made her very sleepy and lethargic. Her sleep cycle is even more crazed than before. We are slowly phasing out one medicine but everything together is too much for her. She has some trouble falling asleep at night but has not been waking until very late morning or early afternoon. I wake her, bring her out of the crib, change her, dress her, stretch and massage, move her around but she does not really stir. She is agitated but does not wake. Her eyes are so heavy; you feel her struggle and sense her pain as she attempts to open her eyes even the tiniest bit. You feel so pained for her that you just let her fall back to sleep. When she finally wakes, she is alert and willing to work through her therapy but it tires her out quickly. She is much more floppy these days because of her tiredness. She has slept through so many sessions that she has lost some strength again. Even though we try to move her as much as we can when she is awake, it is not enough to make up for the time she spends asleep. Her seizures are better. They are mild and less in number. Her lethargy scares us though. We continue to work on finding the balance in her medications so that she is more productive during the day.

In a couple weeks, she will return to NY Pres for another EEG. We hope that they will confirm the decrease in her seizure activity. And hopefully we will soon find the right dose of medicine so that we can enjoy Chloe more during the day.

Much love,

Reth, Michelle, Olivia and Chloe

Still looking for answers

Heading back to the hospital again…

After Chloe’s last video EEG, we were very hopeful that her new anti-seizure medicine would work. We had a great two week start. She was much more calm during the day and I was able to engage her, play and talk with her more than I have in awhile. We even got a big gummy smile a couple times. There was a change in her behavior that allowed us to work and play with her throughout the day. She also began to enjoy sitting up on her own bum in front of us with little assistance. One day she sat in front of my lap with just my hands lightly on her shoulders for about 20 minutes. It was exciting and we were seeing less of her seizures.

Unfortunately, things changed when she began to have seizures every hour. At first they were mild, but then they grew to the ones that scare her and cause her to cry. For two days, I watched as she would cry after each cluster and then cry herself to sleep to only wake again to more clusters and more tired sleep. Therapy and play time were not going well. As soon as she had a seizure, she was too difficult to calm down to continue. Back and forth with her neurology team over the phone, we decided to adjust her medicine to a higher dose. It calmed her a bit but her seizures are still there.

At this time, we have been asked to re admit Chloe later this afternoon for another video EEG study that will hopefully determine what other medicine we can try. During our initial meeting with her neurologist last week, we were given three options so far. We have ruled out the option for steroid injections as none of us have the heart to do that to Chloe and it would only be a temporary fix. The other options are to try another medicine called Depakote or to place Chloe on a special diet – Ketogenic Diet. Both have serious side effects to be considered so we are working closely with our team and Chloe will have to be monitored over the next few days to week depending on which route we choose.

Since the increase of her medicine at home, Chloe has calmed down a bit and has gone back to having her milder seizures but we need to get all of them under control as they have now begun to affect her sleep and her therapy. During the night, Reth and I will hear a sudden gasp followed by the thump of her arms or legs hitting the mattress and sometimes a short cry. The seizure is quick and most times she is able to fall back asleep after a few minutes but they are not easy for her to work through. We see the same behavior when she is about to nap or just waking up from a nap during the day. Again, it is very scary for her and upsets her whole system. It is not easy to watch as we sit helplessly next to her patting her chest and telling her it will be okay. It’s heartbreaking because I feel like we are telling her a lie since I have no idea what is happening in her body and we have given up on guessing what the next day, hour or even minute will bring.

We are still hopeful. We know the team of doctors and nurses is doing everything they possibly can. It is not easy to go back to the peds floor at the hospital and relive this nightmare but we’ll remain as strong as we can for Chloe and help push her through.

We will keep you posted as things unfold over the next few days. Thank you for all your support.

With love,

Michelle, Reth, Olivia and Chloe

Long road continues...

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

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