Friday, January 30, 2009

Date Night

Tom and I got out this evening for a date. There was a 'parent's night out' sponsored by the day care. The kids can stay until later and the girls who run it feed the kids dinner, play with them and let them watch a movie. The kids to an art project also. Both Rita and Grace love to get to stay when they have one of these nights. We haven't taken advantage of one for months. It was a joy for Mom and Dad to get out tonight. Rita loved getting to go back to her old school and see her favorite teacher, who was one of the people running the event tonight. One of the teachers from Gracie's classroom was also there so there was someone familiar with her new diet and how it works!

We are often nervous leaving the girls for the parent's night out. Grace has a bad track record of having seizures during these nights. Twice we have been called from a restaurant that Grace was having a seizure and the ambulance was on the way. We were thrilled to have a 'normal' end ot our eveing and no ambulance runs! We arrived to hear that Grace was running around and reeking havoc like all healthy three year olds! The teachers were a bit amazed at how well she was running and playing.

The downside was that Grace did not eat very well for everyone today. She had an incomplete breakfast and then she didn't finish all of her lunch or dinner. It's tough to ask others to force feed her. If she is at home and doeasn't eat, we convert her exchanges into something liquid and use a sryinge to basically force feed her. When she refused to eat, we give her whole milk, heavy cream and melted butter or oil on the side. She doesn't really like it but it gets some much needed calories into her! I am hoping that today was just one of her not-eating days!

All the best!
Marie, Tom, Rita and Gracie

Thursday, January 29, 2009

Check-up Time

Today was Grace's first out-patient check-up with the 'keto team'. Everything is fine. She has managed to put on a little bit of weight (about one pound) so everyone was happy with that. She has passed the one-month mark since her last seizure. It has been a long time since Grace went a month without a seizure. Needless to say, everyone is quite pleased with her progress thus far.

Grace is quickly getting tired of the food - especially the heavy cream which is a staple of every meal and snack! Last night I got out some food coloring and added a drop to her heavy cream pudding. Rita also had to have a pudding last night too. So, the girls sat together and devoured their colored puddings! Of course, the nutritionist saw one of the colored puddings today and asked what it was. Apparently food coloring has sugar alcohol so Grace is not supposed to have it. The nutritionist did recommend using some sugar-free Jello gelatin mix to add some color and flavor. They are deemed safe. We will try them out this weekend and see if Grace will eat it.

There were three other children all starting the diet the same time that Grace did. The parents all attended the classes together at the hospital and got to know each other a bit. Today at Grace's check-up, we met up with one of the other families. Their little girl is a beautiful child about to turn 4 in February. She has a smile that lights up a room. This sweet little girl was walking and talking until her seizures started at age two. When we met her in the hospital, she was unable to walk or talk. Her mother shared the incredible news with us that yesterday her daughter took three steps on her own. Talk about diet success stories! And this was not just a fluke. Today she took a single step on her own to show off for her grandmother! We are all cheering for continued success for this little girl!

This is week three of the diet and already the children are doing so much better! The diet is not without it's challenges. However, these results make it worth the battle! I think we were all pleasantly surprised at how well the children are doing with the diet.

Thanks for all of the love, support and prayers!
Marie, Tom, Rita and Gracie

Sunday, January 25, 2009

The spice of life

My Father always said, 'Variety is the spice of life.' I guess Grace has needed some spice in her life! We were so happy that we found meals that worked for her that we just kept repeating them over and over. We are not sure if her drop in appetite has to do with the lack of variety or just that she has always had a few good eating days followed by some not so good eating days. Whatever the cause, she is eating again today!!

We tried the recipe for keto-pizza today. It is slices of pepperoni with some mainara sauce and some mozzarella cheese all cooked together in the oven. Grace got 4 slices of pepperone with a dab of sauce and a drop of cheese. I made some her some and sepearated them from the rest. We all had the same lunch. Tom said they made great appetizers! Grace really liked them though so it worked.

Yesterday she started to eat macadamia nuts again. She liked them before the diet started but she stopped eating them in the hospital. They are great on the diet because she gets a lot of them per serving and they take away some of the stand-alone fat she needs to eat.

For her snacks we have been making her puddings - heavy cream and jello sugar free instant pudding mix. Grace gets one gram of the pudding mix and a little more than half an ounce of the heavy cream. We have been giving her them for every snack. I think that is more because the vanilla pudding tasts like cake batter and the chocolate is divine!

Grace just reminded us in her own way that we need to keep trying new things and not get into a rut with what worked before. Grace stopped losing weight and actually managed to put on a few ounces. We are thankful for every ounce she gains back.

We continue to be encouraged by the results we are seeing. Before Grace went into the hospital, she wanted to be carried everywhere. She was forever coming underfoot and asking someone to pick her up. I have been at partied with her where I have refused and told her to stand or walk, etc and she would go up to anyone else with arms outstretched asking them to pick her up. The past few days we have noticed that she is doing that a LOT less. She only seems to want to be picked up now when she is tired.
Happy Chinese New Year! Our family friend Angel called today to wish us a Happy New Year. I am glad that she reminded me as I was so wrapped up in the diet preparations that I totally forgot! Gung Hoy Fat Choy - I think that is the right way to say Happy New Year in Chinese!
Marie, Tom, Rita and Gracie

Thursday, January 22, 2009

What's Cooking?

Tom got a brand new wok for Christmas and sad to say, the girls sitting in it is the only action the wok has gotten so far! We also got a new set of pots and pans that have yet to be christened.
The food Grace needs to eat is in very small containers and gets cooked or heated in very small pots and pans. We end up having to cook Grace's meals singly so that things get weighed out correctly. Then we tend to do the same thing for everyone else so that Grace does not feel she is being treated differently. At the moment, we are very much focused on fostering Grace's acceptance of the diet. She is aware that she is eating different food and she wants the same.
The keto team at CHOP keeps telling us that 'keto kids are kids first'. So I guess what we are dealing with is a normal three year old who wants to be fed the same thing she sees everyone else eating. As much as this is a challenge, it is a blessing. Grace continues to be a normal child on an abnormal diet. We are extremely grateful for that. We will learn to deal with the abnormal diet. The adjustments needed are so worth the outcome - or as my high school history teacher used to say - the ends justify the means!
Thank you for all of the prayers and good wishes. We firmly believe that they are doing Grace a world of good.
Thank you!
Marie, Tom, Rita and Grace

Wednesday, January 21, 2009

Positive Signs

We are amazed that there is such a positive difference in Grace already from this diet. Her speech is much more articulate than it was even a week ago. Actually, she was not talking much in the hospital to anyone so this seems even more remarkable! In addition, Grace has much better balance and much of her usual shakiness seems to be gone.

We are checking with the keto team to see if she can increase her food intake. She is waking up early and asking for her breakfast. She is eating her full meal and asking for more. They said that they will increase her caloric intake if this happens so we are checking. Grace continue to drop weight - a few more ounces each day.
Hope all are well!
Marie, Tom, Rita and Gracie

P.S. the time is showing up on the blog as a different timezone - I am not waking up in the middle of the night to blog - as some people think (TOM!!)

Tuesday, January 20, 2009

More 'Mokies!

I may have mentioned Gracie's love of hot dogs. We have transferred this over to Lil'Smokies. These are great food for her as she gets a bit of a bigger portion and they are high enough in fat content that they take away some of the stand-alone fats that she needs to eat. Gracie is now starting to get hungry and she wants more to eat at times. This morning we heard mantras of 'More Mokies' over and over.

Gracie has 'returned' to her funny, clever, silly little self. Yesterday, she saw me preparing her medicines and she ran away to hide. Usually, she 'hides' in bed under the covers. Instead, Gracie hid right outside the doorway to the kitchen. She ducked down and covered her eyes. I walked past her twice - once on the way to check the bed and the second time to ask Rita if she saw Gracie. Rita said, she is right there - right behind you! The girls both had a good laugh at that. (I have included some photos of her hiding spot!)

Gracie is doing a bit better at eating. She is actually starting to feed herself again. For a while she had no interest in foor whatsoever. Now she seems to have some interest in parts of her meals. We also found that she will drink more if we put the drinks in the little bathroom dixie cups. I think she likes asking for more and actually getting it!! We have been mixing her heavy cream with instant pudding mix (sugar free - of course!) and Gracie seems to like it. She loves the idea of getting dessert! The last picture is one of her with her 'pudding' on her face. Feeding time is getting a bit better!
Hope all are well!
Marie, Tom, Rita and Gracie

Sunday, January 18, 2009

Things are getting a little bit better

Gracie did a bit better today with eating. She managed to eat at least 75% of each meal. She is still at only half of her fluid intake levels but we are trying new things to get her to drink. Gracie was not a soda drinker so diet soda is a novelty to her. She drank about 6 ounces of diet grape soda today. She is allowed up to 12 ounces a day. She drank her decaf green tea with sweetner and she drank some water. She is looking for her cup more today.

The hard part about the eating and drinking is that Grace actually gags on the food. We have been forcing her to eat and we don't let her get away with saying she doesn't like a food. For the fluids and heavy cream, we have been using a syringe to get it into her. Our stopping point has been when she starts to gag. Sometimes she gags on even water. If she spits something out, we weigh it and give her another bit of whatever was expelled. We are trying to teach her that spitting out her food will not make it go away.

We weighed Grace again this morning and she lost more weight. She looks very thin and tiny right now. Her skin is getting a bit better. She had a bath last night with bath oils in tub so that may have helped (along with forcing fluids). The dry look to her skin is gone and most of the peeling skin has cleared up.

We are still struggling to let Rita eat what she needs /wants to eat while Gracie is in the room. For lunch today, we had chicken salad. (The picture today is of her lunch - chicken salad, two slices of mandarin orange and a soda bottle cap in orange to give a perspective on the size!) This is great for Gracie as we can blend a lot of mayo in with the chicken. However, Rita wanted crackers with hers. If we gave Gracie a Ritz cracker, her portion of it would be about 1/3 of a single cracker as her carb exchange. It just doesn't seem worth 'blowing' her carb exchange on something with so little bulk. Instead, we used her carb exchange to have mandarin orange slices. Gracie got 2 slices for her lunch. However, when Rita was given crackers with hers, Gracie cried and gave us all looks like we were evil. All afternoon Gracie kept reminding us that we did not let her have any crackers!

Tom and I wonder if we are just imagining this or if not hearing her talk much in the hospital threw us off but we think that Gracie is speaking a bit clearer today. We all (Tom, Marie and Rita) seem to understand her a bit better. We are hopeful that this is a small improvement due to the diet. Gracie is still very tired and sleeps more than usual. However, when she is awake, she is totally normal. Each day, she seems to be awake more and more so this is good also. The pictures today are of the girls playing with makeup Rita got for Christmas. Gracie sat to let Rita be the make up artist!

We know that this diet will not be easy. However, we are hopeful that the benefits will far outweight the negatives. Thank you again for your support and for all of the positive thoughts and encouragement!
Marie, Tom, Rita and Gracie

Saturday, January 17, 2009

Fighting to Eat

This is a lot harder at home than in the hospital. At the hospital, they brought in a tray of prepared food that we had to measure out and serve. At home, we have to cook the meals and try to measure them out. The diet consists of a LOT of fat. The trick is to try to incorporate a good bit of the fat into other foods. This leaves less fat for Gracie to eat stand-alone but it also makes it very important that she eats the food with the fat mixed into it!
(The pictures today are prior pictures - however, they are some of my favorites.)

This morning we tried scrambled eggs with mayo and oil mixed into it. I think there was too much mayo and oil for the amount of egg that Gracie was allowed. She took a few bites because it was a food she liked in the past - however, today it just didn't taste right! Before the hospital she was eating butter on it's own, no longer. We now need to melt the butter and mix it with the heavy cream. Of course, she isn't drinking that either so we need to put it in a syringe and force feed her. Tom has gotten quite good at mixing in some flavor extracts to make it better. Gracie puts up a fight until the syringe gets into her mouth and then she stops fighting - thankfully!

It seems like meals are consuming all of our day. We got up and started preparing breakfast and medications. By the time that was done, Gracie was worn out and took a nap. While she was sleeping, I ran to the grocery store with Rita. We came home, played for a bit and then started in with lunch preparations! The girls are currently taking a bath and we are trying to figure out what to make for dinner! I'm glad we have a few days to work this out before everyone is back to school and work.

Grace has now lost over 3 pounds. It may not sound like much but this is a drop of over 10% of her body weight in just a few days. She was walking around this morning is a pair of jeans and they kept dropping off her butt! Gracie thought it was rather funny that her pants would not stay up. Her skin is starting to sag off of her body in spots.

We have been fighting with Grace to drink as well. She is not a big fan of her keto fluids. The only thing I can get her to willingly drink is decaf green tea with the liquid saccharine. She liked hot tea with sugar before so this seems the same to her. She keeps begging for juice and hot chocolate - definately not on her diet. She started to drink diet soda - she is allowed up to 12 ounces of diet soda a day. She laughed yesterday that the bubbles kept going up her nose. The effect of her not drinking are showing up as her skin dried out and is peeling!
Gracie is returning to herself more now at home than she was at the hospital. Her energy level is still much lower than normal but when she gets burst of energy, our same spirited little-girl pops out. We have seen many hands on the hips today and lots of silliness. Gracie is thrilled to have Rita to play with (and vice-versa). Gracie is singing and talking a lot. She did not do much talking in the hospital and her normal self emerged only for very brief periods so this is a great improvement!

Rita is having her own set of troubles with the diet - namely, we were not letting her eat things in front of Gracie that she can not have. Rita protested and it reminded us that Gracie will need to deal with kids eating things in front of her that she can not have. Predictably, Gracie wanted to have whatever she saw Rita eating. We had to tell her no and she cried. However, she will face this every day soon enough when she returns to day care! Rita was happier when she got to eat her own meal.

Thank you to everyone who is following along and sending their prayers and good wishes for Gracie.
Marie, Tom, Rita and Gracie

Friday, January 16, 2009

Homeward Bound

Well Grace is doing well enough to get sprung. (This is an older picture but it reflects her mood - and a heavy cream mustache!)

She is on medicine to help with the acidosis. She likes it - at least she did last night! She will stay on this for a while to make sure that she doesn't have any problems.

Grace had IV fluids last night and this morning. However, we forgot to include some of the liquid foods as fluid so she is doing better than it seemed! It is very important that she stay hydrated on this diet. We need to keep pushing fluids with her.

Grace fell in love with the wagon they have here. She has taken to sleeping in it. We were discussing with her doctor this morning about how to hitch it to the back of the car to take home :-) When Grace wakes up, she likes getting pulled around the hospital in 'her' wagon!

The hospital has child life specialists here who are wonderful. There is an activity for each day and a playroom. One day Gracie painted pictures to music, another day, they colored, another day there was music therapy and so on. It has been a godsend for us as these activities keep her occupied while we are off to our classes. Today, the woman in charge of the program came around with little gifts for the kids going home. Grace was given a TY seal and a coloring packet.

I think Grace will be happy to head home today. When I walked in this morning she told me she wanted to see Rita. I had just dropped Rita off at school and had a similar conversation with her! I think the girls will be happy to be home together tonight!

Happy Friday!!


Thursday, January 15, 2009

I finally managed to get some pictures uploaded again today. There is one of the poster that Grace's day care class made to help decorate her room. Everyone who stops by is quite impressed!!
The other photos are of Grace trying to eat and one of her sleeping in the wagon. She has not been eating or drinking well so she is very, very tired. Grace did not eat her dinner last night nor the suppliments she was supposed to drink. She ate breakfast but not lunch. She is not drinking enough either. We have tried a lot of different things but she is not interested very much in 'keto fluids'. Grace wants hot chocolate or orange juice! These are definately not keto fluids!!
Grace had a low blood sugar this morning so she was given some apple juice - about as much juice as she would get if she was taking a syringe of tylenol or motrin!
They are getting ready to run a second IV to give her some fluids. She has one IV in that they are using for all of her blood draws. So that nothing happens to that, they are running another one for the fluids!
Grace also has too high a level of acid in her blood - acidosis I believe they called it. She is about to be given sodium bicarbonate to help neutralize the acids.
We are still scheduled to be discharged tomorrow but it is not a given. Grace needs to eat more and drink a lot more!!
Tom was getting clever with the heavy cream. He mixed orange extract, vanilla extract and liquid saccarine with the heavy cream and gave it a really good shake! It was like an orange creamsicle. Gracie didn't eat it today but she may enjoy it in the coming days and weeks!
All the best,
Marie, Tom and Gracie

The Birthday Pillow

Pillow Pattern

Gracie's cousin Allison made her a blanket and matching pillow for her birthday. The pillow is such a hit and several folks wanted to know how to make the pillow. Here are instructions to make one yourself.

What you need:

(These amounts should yield two pillows. For the first pillow, use one fabric as fabric A and for the second pillow use the second fabric as fabric A.)

Fabric A - 1/2 yard of fleece fabric

Fabric B - 1/2 yard of fleece fabric

Cut from Fabric A:

one patch 16 inches by 29 inches

two patches 9 inches by 16 inches

Cut from Fabric B:

three patches 9 inches by 16 inches

Place cuts about every inch that are two inches deep on all patches. This will form the tags that get tied together to form the pillow.


Tie the small patches together - alternating B-A-B-A-B patches. This will form the top patch.

Tie the assembled top patch to the large, remaining patch. Leave a section untied.

Stuff the pillow with quilt batting or polyfill. (Leftover quilt batting pieces are great for this.)

Tie the remaining open section.

Happy Pillow Making.

Thank you Allison

Wednesday, January 14, 2009

Slow and steady - we are making the transition

Gracie finally ate a full meal at lunch time today. This was good news. Because she missed so many of her meals the last few days, she will start a supplement after dinner tonight to help her make up some calories - with the right ratios.

We started to find ways to make things work for her and we are learning how to calculate exchanges so we are starting to get comfortable adjusting her meal plan. Grace is now up to the 4:1 ration, which is the goal, so she is getting a lot of fat with each meal. We found that she will tolerate the heavy cream mixed with oil. She doesn't like it as much as the straight heavy cream so we give her some straight heavy cream and some mixed with oil. Tom has had to give her this via a medicine syringe - but she gets it all in. She ate peanut butter mixed with butter and tomatos mixed with mayo and macademia nuts - after we added salt and pepper! The goal is to find ways to mix the fat in with other foods. Before she went into the hospital she was eating butter by itself. For whatever reason, she will not eat the butter stand-alone in the hospital. Maybe because we want her to eat it!!

Gracie's energy level is very low. This is an expected side effect of the diet initiation. It is expected that her energy level will bounce back in about two weeks. Right now she is very lethargic. She gets a burst of energy after eating but it quickly dissipates. She is happiest just snuggling up in Mom or Dad's lap. Usually she wants to be carried but it is even more extreme right now. She has foudn that wuite a few of the nurses are happy to pick her up and carry her. She is very light and she just snuggles in so they seem quite happy to lug her around. Tom and I came back from classes twice today to find her snuggled up with a nurse!

If you have had any experience with CHOP - Children's Hospital fo Philadelphia, you already know how wonderful all of the people are that you encounter there. The ketogenic diet team is good. They get great support from the team of nurses, nurses assistants and child life specialists who are also wonderful. The people who come into contact with us - patient and family - are really supportive and helpful. We are very grateful to have such an excellent facility so close to home. One of the families in the program with us has travelled 5 hours from Virginia to be there. Every time we stay at CHOP, we meet families who have travelled quite a bit to be there.

My plan with Rita for tonight is to bake some cookies. We will not be doing this once Grace is back home. It would be really mean to torment her with the smell of fresh baked cookies and then not let her eat any. We are trying to find ways that Rita does not have to be deprived of sweets and such while not teasing or taunting Grace with things she can not have. Before Grace comes home, we need to get rid of all of the 'junk food' from her reach. Grace likes to help herself so we need to break her of that happen for now.

I left the camera at the hospital and I am home now so no photos for tonight.

All the best!

Tuesday, January 13, 2009

We are in Ketosis

Grace hit ketosis today - crashed into it would be a better description! Grace barely ate her breakfast and lunch and was creating ketones like mad by her afternoon blood draw.
Here are pictures of her allowed meals today. For breakfast she had bacon, scrambled eggs, bread with butter, a side of butter, rice krispies and a little cup of heavy cream. For lunch she had ham and cheese, ritz crackers, a piece of a banana (eaten prior to the photo :-) ) and a little cup of heavy cream. For dinner, she had hamburger with cheese, rice, green beans, macadamia nuts, butter and more heavy cream!
Grace slept most of the day - partly due to her lack of sleep last night and the fact that she hit ketosis. She was awake a bit this evening. She was able to play in the playroom for a short while this afternoon and again this evening when Rita came to visit. Grace wanted to show Rita the playroom!
I think I hit the max for photos in this post. I will try to add the other photos I want to add as another post. UPDATE: I wasn't able to add more photos. I'll try again tomorrow!

Starting Slowly

We had some technical difficulties at the hospital and could not log on from there. We are trying to get that worked out.

We got Grace unpacked and decorated her room! She loves the poster her day care class made for her. Everyone who comes in comments on it! We also read the book that Ms. Nicole made for her with pictures of her school and class.

Grace had her 'last supper' of non-keto food last night. Top on her wish list - french fries. I thought for sure she was going to ask for a hot dog. To make sure she got good french fries, Tom went and got her McDonald's french fries! If you aren't going to have them for a few years, it makes sense to have the best!

Our check-in/admission went very smoothly. Almost too smoothly. They said that it could wait until Tuesday morning to start the IV and do the first blood draws. However, there was some confusion and about 10:30 last night - just after Grace settled in for the night, they came to start the IV. Then since she had the IV, they started her on the schedule - blood draws at 2:00 AM, 6:00 AM, noon, 6:00 PM and 10:00 PM. Needless to say, Grace did not get a good night's sleep - neither did Daddy!

Grace met the team yesterday. I forgot that she has not met the ketogenic diet team before. She was charming with everyone yesterday afternoon. I'm not sure how long that will last today given her lack of sleep last night! Yesterday she was giving hugs to everyone. She even gave out her Tigger and Winnie the Pooh stickers. I'm afraid today will be all rasberries and sass!

I hope to have pictures to share later!

Monday, January 12, 2009

And we are off

Grace seemed to pick up on the nervous energy that Mom and Dad both had. She slept about an hour and then woke up. She then played until about 1:30 AM. Grace woke up this morning to say goodbye to Rita and see her off to school. We keep telling them that they will not see each other for a few days. I guess it sunk in. For the most part, the two girls are quite close and play well together. Here is a photo of them at Christmas sharing Grace's new toy.

We are all set to go today. We got the call from the hospital that Grace is not scheduled to 'check-in' until 3:00 PM. She will get processed through admissions and then brought up to her room. We will then have training classes this afternoon to learn how to take her blood glucose levels and to check for ketones in the urine. We thought we would actually do more today.

This schedule may work out well. Grace has such trouble when they need to draw blood or insert an IV. We have all day to pump her full of fluids and hope that the IV insertion will go well this afternoon. It is so difficult to stand by and watch the doctors or nurses try to find a good vein for a blood draw or IV. Grace is this tiny little child with amazing strength. She has astounded several medical teams that she can buck off several adults trying to hold her down for this process! When she had pneumonia last month, it took 5 doctors and nurses to hold her down to try to get a blood draw. Grace still weighs under 30 pounds but when she is motivated, she has the strenght of a grown man!

I mentioned the skirt that plays the Chicken Dance. There is a picture of Grace with her skirt. Shew is wearing it as a cape rather than a skirt! If anyone is interested in more information on the musical skirts, the company is Acting Out and their website is .

We have everything ready to go. It feels like we are packing for a vacation. We have clothes for Tom and Gracie. We have entertainment for both! And then we have all of the things we need to bring for the diet - food scales, liquid sacchain, non-carb flavor extracts, non-carb toothpaste, urine sticks, blood glucose monitoring and supplies, keto-koolaid stuff (the kool-aid packets that you would normally add sugar to and a gallon jug), special cups to encourage her to drink. Tom jokingly asked me how mnay suitcases I was planning to bring. I am only planning to bring one suitcase! It does seem like a lot though!
The diet starts tonight after dinner. Grace will have a 'normal' dinner and then after that she is only allowed to have keto fluids for the rest of the night. Keto fluids and non-caffeine, no carb beverages. She will start having blood draws around the clock - 5 times a day. She will be weighted at admission and then every morning from that point on. The goal is to maintain her body weight and not lose weight.

Hoping for the best....
Marie, Tom, Rita and Grace

Sunday, January 11, 2009

The Journey Begins

We are all set to embark on the ketogenic diet journey. Grace goes inpatient on Monday, January 12th to start the process.

The Ketogenic diet is a special medical diet that has been shown to help with seizure control for people with hard to control epilepsy. We looked into the diet last summer and decided that this was not for Grace at that point. Along with Grace's medical team, we all felt that the burdens on the diet were too much for Grace for the anticipated benefit to her from being on the diet. Things changed in recent months as we found out that Grace needed a medication change. We decided that this is the best time to try her on the diet.

The Ketogenic diet is a high-fat, low carb calorie-restricted diet. The diet is measured in ratios. The most common ratio is 4:1. In a 4:1 diet, fats are consumed for 90% of the calories, protein is 7% of the calories and carbs are 3% of the calories. The goal of the diet is to put the patient into ketosis. When the body is in ketosis, it releases chemicals that have great anti-seizure properties. The goal is to be able to reduce the amount of anti-epileptic drugs that Grace is currently taking.

The biggest challenge with this diet is that Grace loves food. We have always said that she has eating days and non-eating days. On her eating days, Grace astounds people with what she can eat. Grace loves traditional healthy food as well like fruits and vegetables. She has been a good, well-balanced eater. Grace's favorite food at the moment is a hot dog. It is also her favorite saying! On a recent skills evalutation, she was asked to say if she is a boy or girl. She replied, 'I a hotdog' - consistently! Of course she laughed when she said it just to show you she wasn't going to give the answer we wanted to hear!

The next biggest challenge is keeping the food from Grace that she is not going to be able to eat. Grace is very mobile and has no problems getting into the cabinets and fridge on her own. Grace thinks nothing of taking food from the plastes of anyone at the table. She also is very good at enlisting the help of others to feed her. We have been talking to her for weeks, trying to prepare her that she can only eat food that we give her. The true test will be how she does as the diet kicks off.

Grace has been eating butter and loving it so we are not worried about that. She also likes to drink the little containers of half-and-half so we think she is ready for the heavy cream that will become a stape of her diet. We think that she will like the foods she can eat. We only worry that she will miss the foods that she can not eat. My biggest fear is how we will react when she begs for things she can not have.

We are getting ready for the entertainment we will need to have an otherwise healthy child in the hospital for several days. We are lining up the crayons, coloring books, movies, books, dolls, temporary tattoos, and of course her favorite musical toys. Grace loves the Christmas tree that lights up and plays Jingle Bell Rock so that will be going with her. Her new favorite though is a skirt that plays the Chicken Dance music. Her favorite part of the Chicken Danceis getting everyone to join in! I anticipate that we will hear that song many, many times over the next few days (as we have since she got the skirt last week for her birthday!) Grace's daycare class made some posters to decorate her room and they gave her a special book all about her and her special diet.

Ready, Set, Here we go.....