Back home...

Hi everyone

We wanted to let you all know that we are all back home. Chloe was discharged Saturday late afternoon. She was able to tolerate her feeds in the hospital and the team thought it was best to bring her home and continue to work on the Ketogenic Diet with an outpatient nutritionist. We worked out a feeding schedule that we thought would work with our busy day and keep her comfortable.

Unfortunately, the first feed she was given in the comforts of home was not tolerated well and Chloe was unable to keep any of it in her belly. Later that evening, we encountered issues with the thickness of the powder running through our home feeding pump and had to sit through the very annoying 'feed error' alarm that forever goes off until you fix it. Getting through the first night was difficult as we ran a continuous overnight feed - something we have not done since Blythedale. I laid awake anxious and awaiting the annoying beep of the feed error. Chloe actually tolerated the night feed well, waking quietly a couple times for a short bit. The alarm on the pump, though, decided 5am would be a great time to start going on and off. Thankfully Olivia slept through it (they share their room now).

Day two (Sunday) was the slightest bit better but not without headache and heartache. Chloe's first feed needed to be stopped as she began to gag and dry heave with a few ounces left. We were able to calm her down after a series of painful hiccups but she was not able to finish her milk. The rest of the day we gave her less milk than we should have and her pump continued to annoy us.

We have since worked out (we think) the issues of the chalky powder running through the pump but we continue to find a balance in Chloe's feedings that make her feel comfortable. Since we have been home, she has not yet received a full feeding. Not sure what this does for the Ketogenic Diet itself but Reth and I figure it's best to give her what we think she can handle and let that digest than to push her belly to the limit and make her sick. When we look at the numbers from her old diet to the new diet, she has been increased by 200+ calories and has almost doubled the volume of liquids that we are pumping into her belly. Somehow those numbers do not sit well with me but it's hard to argue with a diet that we are just learning about ourselves.

Chloe has been lying in bed most of her days as she is most comfortable there than in her chair it seems. She is alert and played with some toys yesterday in her wheelchair with family and friends who came by. For the most part, she is comfortable but does have episodes of discomfort and crying. Tonight, she screamed and cried and we think her belly is just too full. Also, the makeup of her diet just seems so...thick. As we posted earlier, it is a very high fat diet. It is actually a 4:1 ratio of fat to carbs and protein. All sugar has been taken out of her diet, including her medicine. So, basically think eating a piece of chicken only smothered in more than a few tablespoons of mayonnaise or a couple strawberries drowning in heavy cream. Sounds tempting but not really. As the nutritionist simply put it to me, "Sure she can continue taking her tastings of Gerber fruits or vegetables, just flush her tube with oil to make up for the fat content." For now, her tastings will stop until we get this diet going but it is heartbreaking to think we've worked so hard with her and she does enjoy taking what little she does by mouth and now those tastes will be so different.

As for her seizures which is the true reason of her diet change, well they are still hitting her fast and furious. She jolts throughout the day sometimes bigger than before. We asked if it is usual for things to get worse before they get better to which we were given the comment, "Let's just give this a chance and wait and see."

Tomorrow is a new day and a new start. We will continue to keep you posted as much as we can but this diet takes months to a year to really show its effectiveness so there's a lot of trial and error right now.

Longer hospital stay as we try something new

Quick update...

As you’ve read, Chloe’s seizures have been reaching quite a daunting number as we have looked at her EEG since last Wednesday. We have gone through a number of medications and they do not seem to work. At this point, Reth and I have agreed to change her diet to what is called the Ketogenic Diet. We decided against the steroid use as it would have only been a temporary solution and would have increased her irritability. Chloe has been calm and sweet over the past 6 months so to do this to her and administer a medicine that would make her even more upset than what we have seen this past month, would sadden us too much at this point. I do not have much information on the Ketogenic as we are still researching it and learning new things everyday. At the basic level, it is a diet that is very high in fat and low in carbohydrates. It makes the body burn fat for energy instead of glucose. It is a very strict diet, but is much easier for Chloe since she is fed by G Tube. Her feeding therapy will have to change as everything that is put into her mouth or tube needs to be calculated. We were also lucky to find that all her current medications contain no sugar to interfere with the diet.

Most likely, Chloe will remain in the hospital for the remainder of the week. She had been fasting since early last night and at 7pm tonight began her new formula. She is on a slow, continuous feed right now until we know she can tolerate the change of diet. Several tests (urine, glucose, blood) also need to be done every few hours to monitor how her body is coping. So far she seems to be doing well and is resting tonight with some food in her belly.

It has been a roller coaster on different medications. Hopefully this diet will give her some peace and her jolts will lessen. Our hope is that she will also find some increase in her activity if she does not seize as often. We have been hesitant to try this diet as it is another lifestyle change and we are unsure of the success rate and research we have done, but her doctors state that they have seen some success and we hope that our brave girl will find some peace with this.

We apologize for the delay in sharing the news about our longer stay. We had hoped to bring Chloe home briefly and be together for a few days and give ourselves a break but realized it was best to continue moving forward.

Much love,

Michelle, Reth, Olivia and Chloe

Staying a little longer...

Thank you everyone for your emails and posts. It means the world to us to have all your support. After a long year of ups and downs, this latest bump (or rather mountain) in the road has hit us very hard. To know that you are all reading along, planning visits, sending messages and love really makes the day a little easier.

To those who read this that are part of the NYP Cornell staff on either side of the 6th floor, well, you can see how I drag myself around these days and I thank you for pulling me aside and letting me cry and vent. Thank you for feeding me when I refused to leave the floor. Thank you for all your words, for pulling the curtains closed when I needed a minute, for bringing candy to Olivia and introducing her to her first gumball!! The doctors and nurses who read this who have seen us through every visit and kept up with us outside the hospital, you have become part of our family and I can't tell you how much that means to have your support as you have seen Chloe and our family at our worst and maybe even sometimes at our best.

An update:

After another day and night of video EEG, it is clear that Chloe has been having numerous seizures; more than we ever expected. At rest, she didn't seem to exhibit any activity, though I am unsure about last night. Currently, the plan is to keep things as is with a few tweaks in her medicine. We are stopping Clobozam, one of her three anti-seizure meds, but increasing her sleep medicine at night. Hopefully this will give her body some peace and will allow her to sleep through the night. Though she has been quiet the past couple nights, she is still waking around midnight and 3AM.

The doctors and staff have made observations and have heard from us how exhausting everything has become. After speaking with the social worker this morning, we have some leads on getting some help at home. Though Chloe has gained some strength over the year, she still needs absolute total care and it has taken a toll on us, especially since we have lost our services of respite nursing of 5hrs/wk. Yes it does seem like 5 hours was nothing if you think about everything that needs to be done, but it was still something. Hopefully our leads will point us in the right direction to bring some peace into our home.

As far as next steps, we are still unsure. We are here at Cornell through the weekend to further observe her patterns. The next idea as far as treatment will be much more aggressive and we will have to discuss what the best option would be and how to go about monitoring Chloe. We have been talking with the team about steroid use or change of diet. Both options have great potential of side effects of irritability, change in appetite, digestive issues, etc. With either treatment, she will have to be monitored closely until we can understand how her body is reacting. At this point, we are unsure that I will be able to handle all of this at home, especially without a home nurse. It is difficult as I have been able to do everything possible for the past year and I have never not been at her side. Right now though, Reth and I know that we will be better parents if we advocate for her and get the help that we desperately need at this point in order to keep our own sanity and provide a safe and healthy home for not only Chloe but Olivia as well.

We will let you know through the weekend how things progress and again appreciate your positive thoughts and prayers.

Much love,

Michelle, Reth, Olivia and Chloe

Back in hospital

Hi everyone

This is just a quick email to update all of you. This past month has been very difficult for Chloe in terms of her seizures and her sleep. She has become much more agitated and has had several crying episodes during the day and through the night. We have hit a wall in terms of figuring out how to keep her calm and organized and have felt at such a loss when we hear her painful cries late in the day and in the middle of the night.

After a very stressful two weeks in trying to overcome this mountain on our own, I broke down and contacted our entire team of doctors and specialists to find out what could be going on. Currently, we are back on the peds unit at NY Presbyterian Cornell. We were admitted yesterday afternoon and will stay for at least a few days so that her team can obtain a proper observation of her.

This has obviously been very difficult for us and we hope that you will keep us in your thoughts as we go through the days of sitting bedside in a hospital. Over a 12 hour period, Chloe already registered more than 80 mini seizures and everyone is grappling for guesses of what should be the next step. In my heart, I have felt that something was off these past few weeks but never would I have expected that her jolts were at this high number. It is beyond heartbreaking and we are all emotionally exhausted.

We will be in touch about the next step and any news. We have plenty of doctors and even two new teams of specialists to help us through this. Chloe is in good spirits; she has actually been behaving really well and has had no crying episodes yesterday or overnight (of course!) Why is it that when I need her to misbehave and show them her true self, her superstar persona comes out and she is an angel.

We will keep you posted over the next couple days.

Thank you everyone.

Much love,

Michelle, Reth, Olivia and Chloe

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