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.