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

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

Birthday Weekend - Chloe turns 1!

Chloe celebrated her 1st birthday today! We celebrated her birthday at a nice restaurant on Long Island not too far from Michelle's parents house. Chloe was surrounded by family and close friends. My parents and godmother flew in from Canada and one of my aunt's flew in from St. Louis to join in the festivities. They were all very surprised and pleased to see how far she has progressed. My mother last visited when Chloe first took ill. So for my mother to see her progress from being intubated to now sitting upright in her wheelchair wide awake is a true miracle.

While I write this blog Chloe sits in front of me. Looking at her beautiful face I think back to how difficult and trying this past year has been for her and for our family. She's one now and while I am overjoyed to celebrate this miraculous day, at the same time I remain a little sad. She brings in her first year of life unlike anything Michelle and I, or any parent for that matter could envision for their child. It was a year filled with very joyous moments such as her birth, her first smile and laugh, wonderful times spent with Olivia, many happy trips to Long Island spent with her grandparents, aunts and uncles. Then at almost 8 months old her life and ours took a very unexpected and difficult turn.

Four months have passed since that fateful day. And in that time we have experienced the whole gamut of emotions including sadness, anger and melancholy. Since returning home from her hospital stay, we have been given a second chance to experience many firsts again. We celebrated her first taste of food, trips out to to her grandparents and most recently her first smile. Since recovering from her meningitis, everything has returned to some extent, she now lifts her head little by little, she can almost turn herself over onto her tummy, her eyes are wide and bright again. But, her smile evaded us - or it was always there, just buried under the neurons constantly firing within her brain trying to sort themselves out and find some sense of direction. Chloe's smile and laugh were intoxicating, she could easily make everyone stop and take notice. Her smile had a way of making everything better. For the longest time we waited to see her smile again. Of all things, not seeing her smile was among the worst of feelings we had to endure. So to see her smile again has been the most wonderful sight to see. It's sort of a cross between a smirk and sneer. I've never seen anything so beautiful.

Much love and thanks,

Rethier, Michelle, Olivia & Chloe

Difficult results

Last Tuesday, Chloe and I went to Blythedale to have her hearing test. She was sedated for the test so that the doctor could monitor her brain activity and really see how her ears were functioning and processing sounds at different frequencies.

Chloe’s hearing has been a mystery to us as sometimes we have thought that she has responded to sounds while other times when a loud or startling noise would be presented, she would not stir. I have always heard that when a person loses one sense, the other senses are almost hypersensitive. So when we walk into Chloe’s room and we think she wakes because she hears us, is it really that she hears our steps or that she smells our scent?

Well (deep breath), the test results came back quite abnormal. It showed that Chloe has profound loss in her left ear and mild loss in her right ear. Unfortunately, this loss is presented at a very high frequency. From what I understood from the words and charts presented, Chloe can somewhat hear an airplane or the telephone ring but at a sound that would almost present as a whisper to a normal hearing person.

We have made a second appointment with another doctor, an ENT who works through Cornell. He will be able to give Chloe a second test that will look further and check for damage to her cochlea. If these tests also show abnormalities in her ears, then we will have to move forward accordingly. Our tentative plan for now will be to have Chloe fitted for hearing aids for both ears to amplify sounds and see if this will help her to make sense of her world.

Hard news which deep down I sort of knew but kept quiet about. Almost as if I didn’t think it too much or say it out loud, then it wouldn’t come true. We move forward and Reth and I have already asked our speech therapist to begin teaching us what signs she knows and we will look into a sign language class she had suggested. Signs worked for Olivia before she could speak so we are hopeful that Chloe will be able to engage with us through this form of communication. We just need to work and find out more on her vision abilities to make sure this will make sense for her.

We will let you know as we find out more from this second test.

Much love,

Michelle, Rethier, Olivia and Chloe

IFSP meeting

It was a long weekend thinking about the meeting that took place this morning. Up until now, we have been getting services for Chloe through an interim plan. Today we sat down with a city official, our service coordinator, and an advocate from the agency we have been using and worked out a new plan for more services.

It was hard to gear myself up again to retell Chloe's journey - to talk about what life was like before and how it is now. I cried last night as I set out old pictures of Chloe before she got sick. It's so hard to create a picture of how beautiful and full of life she is so we have always displayed a series of pictures taken just weeks before her hospitalization. It's still difficult to look closely at those pictures but at the same time you find inspiration as well. I typed out highlights of her therapy so far and our goals as a family both short and long term. When I woke up, I was exhausted from tossing and turning. I worried that I wouldn't pull myself together, that I wouldn't fight as hard as I should. How could I really make them listen and hear what I am asking for - to bring Chloe back to those moments before she became sick.

I woke Chloe a little earlier this morning so I could spend some time with her before the meeting. I became so wrapped up in our play that I forgot about last minute prepping for the meeting. I only had time to gather some paperwork together.

In the end, my playtime with Chloe reminded me of what really needed to be done - I needed to be mommy and speak from my heart. I decided not to put Chloe down for a nap. I wanted her by my side during her meeting. I wanted her support. I wanted her energy. I wanted this team to see who she was, how far she has come, and how much more can be done to help her along.

The meeting was painless. The city official who came was the same one we had for our interim meeting so she already knew Chloe's story. What made this even more pleasant was that she knew what my goals have been from the beginning and I could talk to her about the progress Chloe has made in just a few weeks. She was happy to hear that therapies have made a difference and she granted our services to continue. So, we begin a new plan in the next week or so. Chloe and I will now have a routine that will include 3 PT, 2 OT, 3 Speech with feeding, 2 Vision and 2 Special Instruction sessions. We have also been given a social worker to meet with me once a week for an hour to help me get through paperwork and have a support for me as a parent. Our service coordinator has also arranged for an evaluation to be done for adaptive equipment - stroller, chair, bath chair, stander, splints, etc. We have also begun filing an application for respite services so that I can take a break once in awhile.

We are so thankful for the services that have been offered. We will meet our new team over the next few days and pray that we all form solid relationships with them.

Thank you everyone for all your comments, messages, and emails of support.

Much love,

Michelle, Reth, Olivia and Chloe

Therapy updates

Interim services for Chloe have been going really well. It has been so nice to have another team of therapists in place to help us along. Chloe has done well forming relationships with her new friends. They all come to the house so we are not asked to drive all over town for her services.

Speech and feeding come three times a week and Chloe has gotten along well with her therapist, Anastasia. She allows her to touch around her face, particularly her lips and mouth, without too much fuss. We have learned more oral stimulation exercises for Chloe and have found some success. Chloe lets us play much more with different spoons and textured toothbrushes to help wake up her mouth muscles. As a result, Chloe continues to do well with tasting some rice cereal, applesauce and applejuice. She did not regain her sucking reflex but her swallow seems to be fine and she is able to clear her mouth when we give her tiny tastes of food. Also, Chloe has been making tons of new noises and coos. She has been able to express herself with nice oohs and aahs and we are learning her new cries to let us know if she’s hungry or tired. Chloe is definitely much more playful in moving around her tongue and making different curls of her lip.

PT and OT come twice a week and they too have done great work with Chloe. Over the past couple weeks since interim services have begun we have seen Chloe’s strength continue to build. Chloe shows preference now to sitting up rather than lying on her back. We think this is also because she is able to see more and she is showing interest in her environment again. Chloe works very hard to keep her head up while we hold her trunk tightly. She does not need as much head support to keep her head from snapping forward and back; she is able to hold herself for longer periods of time. Tummy time has definitely seen much improvement. Though she still whines and cries, Chloe is able to do much more. She lifts her head up for more than a few seconds and continues to show that she can move her head from side to side so that she clears her airway. During an OT session last week, Chloe was able to hold her head up on her own and put some pressure on her elbows and hands for about a minute. While her OT held her in place, I sat in front of Chloe, cheering her on and when she looked up her eyes were so wide when she saw my face – it was so exciting! When I held up a mirror so that she could see herself, her eyes grew even wider and she seemed to calm a bit more.

Chloe also endures her sidelying position a bit more. She has started to tolerate more naps on her right and left side. Now that she shows more mobility of her head, we see that she is able to bring her head and neck up and back as if to roll over. With little nudges she is able to give herself from her left side she is able to bring about half her body over to go for a roll. Her legs sometimes lack the strength to bring themselves over but with a little help she can bring herself over and roll onto her belly. Her right arm is still a bit stiff so she has trouble moving it out from under her but we’ll get there.

Early Intervention, for those who are not familiar, is a program for infants and toddlers with disabilities and their families. Because Chloe has many needs and shows many developmental delays at this time she qualifies for different services of the state. Right now, our interim only gives us speech with feeding, PT, and OT. Our official IFSP (Individual Family Service Plan) will take place on Monday. For the past month, we have been working with different people to gather evaluations of Chloe’s delays and with their written recommendations and with my story about Chloe, we will ask that state to grant our family more services and with higher frequencies. Our hope right now it to continue speech, PT, OT and add vision therapy and special instruction. We are also hoping for respite to be granted so that I will have even a couple hours a week to myself to run errands or simply just sit and take a moment. Chloe needs all the help we can give her so that she can have the best chances of recovery so let’s hope that our city official will listen to our needs and give us the most of this program.

Keep you posted.

Much love,

Michelle, Rethier, Olivia and Chloe

A month at home

A month has passed and it has felt wonderful to be home. I’ve always loved waking up to the sounds of the girls calling for us to get them out of bed and having our home filled with their chatter, laughs, and cries before bedtime. You take it for granted, we take everything for granted. And then you realize when it’s been taken from you just how much you adored it and how much you miss it. Now that we’re all home and back together again, I love those sounds of home that much more. Reth and I always enjoyed our time together and with the girls and always knew how precious they both are to our lives but after something like this, well, words can’t express just how much love we have for each other and for these two little ones.

It has been a treat to sit down together for dinner and talk about our day. Olivia usually leads the conversation and we are blown away at how much she has grown. She tells us about her day and shares stories about her friends. Chloe is usually awake and sits near us in her chair. She, too, is ‘chatting,’ making noises and having her own conversation or at least trying to get our attention. Nighttime at our house was always, and still is, a race to get everything done – dinner, play, bath, bed – but it’s different now, a bit more fun, somewhat more relaxed. Olivia loves that her sister is home and sits near her almost every chance she gets. Chloe is the first person she looks for when she gets home from school and every night she wants part of her bedtime routine to be lying next to Chloe and reading her a book. Big sister Olivia takes great care of Chloe – she makes sure her blanket is set out on the floor for her playtime, she hugs and kisses her without being asked, she pats her arm or her hair when she’s upset, and she doesn’t let others play with Chloe’s special box of toys (though she does help herself every once in awhile). Olivia has truly and proudly taken on the role of ‘big sister’ and has been very fair about understanding that Chloe has many more needs these days. Though we have had some moments when Olivia has demanded our attention, she has impressed us with her patience and love. It is amazing to witness their sisterly bond. They certainly have a way with one another. Chloe always seems to know and senses when her sister is close by – she calms almost immediately – and when she finally has Olivia in her sight, her eyes grow even bigger and you can see the excitement and love that she has for her big sister. Chloe has not yet shared her smile with us but I can almost bet that it will be big sister Olivia to get her to open up and work her muscles to help her smile shine through.

Chloe has been showing us that her eyes have been getting stronger and she is able to visually process more and more. Her initial tests showed that her optic nerve has been intact but that she is not yet figuring out a way for her brain to really open up her eyes and understand what’s going on around her. In the past few weeks though, Chloe has been looking around left to right, up and down. Her tracking of objects is not completely smooth but her focus is sustained a bit longer than when we first came home and she seems much more attentive. Her vision is one of many things we worry about and it has made us so happy that her eyes have begun to really open. Chloe used to kick her feet to let us know she’s awake, now she gives a little cough and a big sigh. As I approach her crib, I see her big eyes and these past few weeks I’ve seen her really focus on my face. When she really sees me, I hear the most precious sound of a coo and I melt. I know I have a long day ahead of me but with that sound I am filled with so much awe and pride for this little girl that I feel like I can conquer anything.

Chloe and I start our day slowly since most of her therapies start in the late morning or afternoon. We have established a routine of massage, stretching, and playtime on the playmat while we listen to music. Chloe is so awake and alert these days. She is sleeping through most of the night and only takes maybe one nap a day. Though she still grimaces at being moved around and being pushed to her limit, she tolerates much more and we see her growing stronger each day.

We did not have the best start in terms of getting the services that we wanted for Chloe when we first returned home. The agency we had planned to work with did not come nearly as much as we were anticipating. At Blythedale, Chloe had PT, OT, speech and infant stimulation 5 times per week. The first few weeks at home, we were lucky to get 2 visits from the agency’s PT. I panicked, I cried, I even thought about bringing Chloe back to the hospital but we knew this was yet another test. I was home, I was the only one to take care of Chloe and I HAD to advocate for her. So, I painstakingly made phone call after phone call to everyone to make sure we could move towards another plan. I was on the phone the whole first week and felt defeated. It was painful to recount over and over and over again the tragedy of bacterial meningitis and what Chloe has been through. Every person who came to evaluate and every person we had to speak with needed her story of what she was like before, what she endured, and what her limited abilities are currently. It has never been easy to walk through this story but it was even harder to speak about it as a whole. The second and third week, I took a deep breath and waited to hear back some answers from all the complaints I placed. And as I waited, I sat with Chloe and muddled through the exercises we learned at the hospital. Chloe and I pushed each other to get things done and though some moments of our day were hard to push through, Chloe’s accomplishments were far greater than any defeat that may have arisen. Reth would come home and see a different Chloe, friends and family would stop by and notice her progress. I am with Chloe every second of the day and it is hard for me to see how far she has come so it has been nice to see other’s reactions when they visit her. And at the end of a month, I’m proud to say that we have all seen a different and stronger Chloe.

And all those phone calls and complaints have paid off. We were assigned to a great service coordinator for Early Intervention and upon hearing our troubles of therapies and home nursing, she was able to initiate an interim plan until our official Family Plan meeting takes place. So, Chloe and I now have our own routine as well as 3 visits of speech and feeding, 2 visits of PT and 2 visits of OT.

It’s been a crazy month but one of much joy and happy surprises. We are finding out a lot about Chloe and ourselves. There is a lot more to tell as we are in the middle of many evaluations and testing but we will update as we hear the news.

Oh, and one more nod to Olivia – She’s all potty trained!! And she is moving up to the Bumblebee Class (a preschool class in her daycare) Yeah, we are very proud of her.

Much love,

Michelle, Reth, Olivia and Chloe

Mixed emotions

It’s been a long time since I’ve sat and written on the blog. It’s been difficult for me to get my thoughts together and talk about what Chloe has been enduring and what we’ve been going through physically and emotionally as parents, as a sibling, as a family.

“It was supposed to be her first cold.” I kept saying as I rocked back and forth above Chloe in the ER when the reality hit that this was all more than just a high fever and lethargy. It’s still hard to digest all that has happened these past three months. We’ll always remember the events that led up to this, where we were, what we were doing, the last things before everything came crashing down. We did all we could and it was all just a ‘fluke illness’ people tell us. We still have no idea how Chloe got meningitis. We will never know. It really was her first cold and first real temperature and we took her to the doctor twice that week finding no indication of what was to come.

I remember saying to my friend at work seconds before I left that last day, “I just want to see her smile.” That was all I’ve wanted since that day. It hurts when your child is sick and you watch helplessly. I know I’ve written about my heartache before and though Chloe is ten times better and she is finally home, we still suffer from heartache and continue to heal as we pray and hope that she continues to regain her strength. Oh, but how a real, true smile would wash away so much hurt and pain right now. I must say, Chloe had the best gummiest smile that could light up anyone’s day. Her whole body was put into that smile and she just lit up the room. I cry and sob just thinking about how much I miss it.

Reth and I still beat ourselves up over where we could have taken a misstep. Should we have taken her to the ER when her temp first spiked, why didn’t I take off just one more day to be home with her, was buying the pumpkin with Olivia necessary that day delaying our return home, did I take too much time playing with Olivia on the bus and in the taxi that kept me from getting to Chloe in time? I know this was no one’s fault but it’s hard, very hard, to simply accept the fact that this was just an unfortunate accident of an illness and series of complications.

Three months have passed. We missed the fall and part of the winter. Chloe outgrew all her new clothes I had just set up in her drawers before getting sick and completely surpassed a whole size. It seems like we moved through the holidays because there was no excitement of all the preparations that we would normally do. But we are home, we are all home together under one roof.

It still surprises Olivia to see all of us at home. She has become used to her routine of daddy being with her most days and nights and getting her dressed in the morning that she almost looks surprised to see me (happily surprised I think, I hope). She is so proud of her sister! I remember telling her that Chloe was coming home for good, not just for a home visit, and explaining that she wasn’t sick anymore but that she still had to grow stronger. Olivia looked at me with her big eyes and said, “Mama, now I can be proud of my sister!” and she smiled and raised her hands up high. Olivia doesn’t understand that Chloe can’t go back to school just yet, she asks almost every day if Chloe will be in the infant room today. Last night, though, she made a comment that Chloe is getting stronger so we know that she is making some sense of the changes around her. The girls now spend lots of time on our bed so that Chloe can be propped up comfortably and we can bring her toys to her and Olivia can once again read books and sing songs next to her sister like she used to. It really is one of the best sights I’ve seen in awhile and truly touches my heart each and every time! Olivia has been amazing. I don’t know how I could have made it through this ordeal without her. In a three year old, I find endless amounts of hope and faith and love…and energy. She has inspired me and given me the strength to push through my hardest moments. Thank you Olivia for saving me! Since we’ve been home, Olivia acts as though life has not skipped a beat and she accepts our changes as the norm. Surely, we know this will be a big transition and Olivia will have to relearn the idea of sharing mommy and daddy even more than before but she is taking it all in stride. She knows that Chloe has a ‘boo boo band aid’ on her belly that helps her get her milk. She has familiarized herself with the loud noise from the suction pump that we need to bring out to help clear Chloe’s airway when she is congested. She watches us prepare and give her medications through her G tube throughout the day. I wish I had Olivia’s enthusiasm and optimism. She looks at all these things as if nothing was different and carries this attitude that all that we are doing is simply helping her sister. I wish I could be so carefree when I do all this but…

In the back of my head, I sometimes think about what would have been and how our life was supposed to be so different. I know we’re not supposed to compare siblings but at this age, Olivia was starting to take her first steps, making a mess pulling books and toys from everywhere, and exploring the world around her. We know that Chloe will do these same things someday but being patient for these things to happen becomes harder and harder as we realize that she is at a newborn stage right now at 11 months of age. It’s hard to be home again because it’s a reminder of the abilities Chloe had beforehand. Her exersaucer she loved to jump in now sits in the corner, the Bumbo she loved to devour her food in now sits in the storage pile. Her jars of food remain uneaten and untouched in the kitchen. Even her favorite toys need to be kept aside for now because she’s not ready to use them. I cried the other day passing the long mirror in our room where Chloe and I would spend so much time laughing as she played peek-a-boo with herself. It was her favorite game! And the chair and ottoman where she would stretch in my arms as I held her every morning where she would drink her first bottle of the day before we all left for school and work is now unused and covered with pillows, blankets and miscellaneous things that need to be put away.

I am so thankful that my baby girl is home and is for the most part as healthy as she can be. I just never imagined her start to life to be so hard. No parent ever thinks of such things. We all think we are invincible and just like that...

So, now I try to pick up the pieces and find new light. Little by little, I unpack our boxes and bins of clothes, toys, and blankets from the hospital, we clumsily sift through the boxes of medical supplies – syringes, feeding tubes and bags, dressings, etc - and try to organize Chloe’s things. Slowly, we are going through our pile of mail, emails and phone calls. It feels good to be among our things again. Chloe has responded well to being home. She has fallen into a better sleeping pattern now that she is back in her crib. We can hold her whenever we want for as long as we want. It’s funny the first day we were home on our own, Reth called to check in and wanted to make sure I wasn’t exercising Chloe the whole time and left some time to just hold her. Little did he know that I held her for a majority of that day and have not really let go ever since.

Chloe looks amazing and has come a very long way. She is so much more alert and awake and is trying so hard to just soak everything in. We are still unsure of her vision and hearing but you can see in her eyes when she is calm that she is looking everywhere and she coos to let us know that she likes something. Her temperament is still a bit fussy because she doesn’t have many ways to communicate with us what she really wants or needs but we continually try to figure things out together and make her as comfortable as we can. Our wonderful therapists gave us so many ideas and ways to soothe Chloe that we are able to manage and maneuver through our day a little easier. More and more, we see so much of Chloe waking up and keep hoping for more and more everyday. It’s a long day - we are exhausted - but at the end of the day as I sit on the couch or lie in bed after checking on Olivia sleeping amongst her many stuffed animals and looking over Chloe curled up in her crib, Reth and I are at peace and, most of all, happy that we have been blessed with our family.

The long journey continues… Since we’ve been home, there hasn’t been much time to just settle in. Chloe and I have been very busy trying to stay on top of her exercise regimen and also try to get her services in order. We have applied for Early Intervention but it will take awhile for services to begin. Unfortunately, our interim services of nursing care and therapies have not been scheduled as we were expecting so we are still trying to figure things out. In the meantime, Reth and I have tried to encourage Chloe to play and move and strengthen her muscles as much as we can as they taught us at the hospital.

It feels good to watch over Chloe at our own pace and in the quiet of our home. I sit here now with her while she sleeps next to me all bundled up. She looks great and so peaceful. The hum of her feeding pump still upsets me because I miss feeding her the bottle and spoon feeding her but when she wakes I will prepare a taste of some rice cereal for her and hope for successful results.

We hope that our services will begin sooner than later. As our therapies resume and Chloe continues to make progress, we will update the blog as much as we can. We hope you will continue to follow Chloe. We still need your support to help our baby along her way.

Lastly, we want to say thank you again to all of you. We would not have come so far if it had not been for our family and friends, both old and new. Each of you has played a special part in Chloe’s life whether through your letters, phone calls, visits, smiles, tears or hugs. There are too many moments to point out that really made a difference in Chloe’s life and in our lives over the past few months. I could write them down but all your acts of kindness to our baby girl and to our family are endless and we are forever thankful.

Much love and many thanks,

Michelle, Rethier, Olivia and Chloe

YouTube address for Chloe's video

Hi All,

If you are have difficulty watching the video through my Facebook link, I also posted it on YouTube. Please follow this link:

http://www.youtube.com/watch?v=VFav-W8Z6yw

Rethier