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