Friday, October 30, 2009

Halloween 2005

I know Halloween is  tomorrow but here are some pictures from Karissa's first Halloween. She was 7 months old.


 
Halloween Pj's!! Karissa with Grandma & Grandpa Booth
 

Karissa with her cousins Isaiah, Ella, Abbey & Sophia & Aunt Elissa

Thursday, October 29, 2009

Ok, I am just gonna say it...

It irritates the h*** out of me when people complain about their kids or their mundane daily routines involving their kids. I want to throw perspective in their faces. Think about it. What if, in an instant, it was all taken away from you? The mundane routines, the crying, the "mommy this and the mommy that", the loud obnoxious toys, the lack of sleep, ect. What if one morning, you realized that you had slept until 7:45, only to realize that the reason you had slept so late was because your child had died in the early morning hours. I don't expect anyone to have the same perspective as me, unless of course, you have also suffered the unfortunate loss of a loved one.

Wednesday, October 28, 2009

I really am not crazy, I promise...

Sometimes, I stand in her room just staring at her empty bed, hoping, she would be there. Can't I just stare her back into existence? Why won't that work? Sometimes, I open her closet door or a drawer to her dresser, just wishing I could chose her outfit for the day. Just hoping to turn around and see her standing there. Or, sometimes I will go in her room and push one of the buttons on one of her toys just to remember the sounds that used to fill her room when she was alive. I still look at the clock at specific times during the day: 7:30 am meds, 9:00 am short nap before school, 10:40 am leave for school, 1:40 pm pick her up from school, 2:15 pm another short nap or a walk to help her unwind, 7:30 pm meds and bedtime routine which always involved bath, stories and lots of snuggling. When I am driving, I still find myself looking in the backseat from time-to-time, wishing she was there but only to realize that she is not. And won't ever be because she in NEVER coming back. Almost 16 months later, it still can seem very surreal. Like it never happened. Like I am going to wake up from a VERY BAD dream. Like I am just going to walk in her room and see her sleeping in her bed or playing with her toys.

Wednesday, October 21, 2009

Tears for Two

Lately, the tears are flowing not only because I miss Karissa, but because my heart literally aches, ACHES, for another child. It hurts. I cannot even begin to explain. I know that having another child will never, ever replace Karissa. But, what I do know is that it will help me to heal and move forward.

A few weeks ago, Gaylin, a very close friend of mine, was here visiting some family. I was able to spend some time with her while she was here. We were upstairs standing right outside of Karissa's bedroom, still untouched, since July 8th, 2008. Although I do bring fresh flowers to her room almost on a daily basis, her room is exactly the same. I recall telling my friend that the day I will go through her room will be the day we have another child. I also imagine that will be the same time at which I will be able to return to Target.



Anyhow, two days after Karissa died, Mark and I took a short walk around the block. Actually, we would do this quite a lot right after she died. For the first month or so, there were always people at our house, morning, noon and night. While we welcomed the company and the distractions, sometimes we just wanted to be alone together for a while. So we would go for little short walks. During the walk we took 2 days after she died, I vividly remember saying to Mark "we need to have more kids. Karissa would want us to have more kids. If she were here she would tell us to have more kids. That would make her happy." Karissa not only loved people, she LOVED kids.

So, these days I am crying not only for the loss of my daughter, but for the anxiety of a future that is unknown to me. If someone were to come from the future and tell me that we would never have more children, I don't know what I would do. Although this is hard for me to write for the whole world to read, I feel that my life has stopped since Karissa died. Like my life is on hold. Like I am waiting for it to start up again. It is horrible. I hate being in this place. Mark says I need to live in the moment. True, but I don't know how to do that. I feel that having another child, or children, if we are lucky, will give me my life back. I loved being Karissa's momma. It gave me so much joy and happiness. I need to have that again.

Tuesday, October 20, 2009

"What? She has to eat that?" The Ketogenic Diet Part 4

Afterthoughts:

Towards the last few weeks of Karissa's life, her seizures had gotten pretty bad. At that point, we weren't sure what we were going to do. We had a plan to start weaning her off her medications, starting with the topamax. We knew the diet was working, but did we want to start decreasing her meds when her seizures were so bad? But, the plan was in place and we were going to start decreasing her medications the week she died. Unfortunately, we never got that opportunity.

I still struggle with whether or not we made the right decision putting Karissa on the diet. I will have days every so often where I will say to Mark "what if the diet is what killed her?" Or, "If she wasn't on that stupid diet (that is how I refer to it these days), would she still be alive and here with us today?" I even consider the possibility that she died from a low blood sugar or dehydration, both are which are possible side effects and totally preventable. But that is when I just have to stop and say to myself that maybe it was that 'stupid diet' that prolonged her life. Perhaps is was the diet that allowed us more time with her.

And then there are other days where I will start to cry just thinking about the foods that Karissa didn't get to eat or the foods that she had to eat like the heavy cream and MCT oil. I tried my best to make everything flavorful and fun but it still breaks my heart that she had to be on such a strict diet. I was so focused at the time on the goal that I didn't think about it. But now, it really does break my heart. From time to time, I will ask Mark if he thought she was starving all the time. Of course she wasn't because the diet actually suppresses the appetite. But, I hated when she would sign 'more' but I didn't have anymore food to give her. That is when I wanted to throw that plan out the window and quit the diet. But I didn't...I was determined to see my little girl get better and the hope of  her reaching her full potential is what kept me going.

I know we did what we thought was best for her at the time. I have no regrets about that.

Sunday, October 18, 2009

"What? She has to eat that?" The Ketogenic Diet Part 3

The meeting:

So, here we go...beginning of December 2007 we officially started the diet. We met with the dietitian and one of the first things she made us agree upon was that we would commit to at least 3 months on the diet. Of course we agreed. We didn't just decide to put our child on a such a restrictive diet for the fun of it...we wanted to see results! As long as there were no side effects, we were in this for the long haul.

She gave us a wonderful computer program for calculating Karissa's diet. I will spare you the details, but basically, you put in the grams of fat, carbs and protein for a food item and it tells you how many grams of a specific food is allowed based on the prescribed ratio. Nice! She was started at a 1:1 ratio of fat to carbs and fat to protein which was gradually changed to a 4:1 ratio. What this meant was 4 grams of fat to 1 gram of carb and 1 gram of protein. Fluid was also restricted. We even had to avoid certain shampoos, lotions and toothpaste because they contained a nominal amount of sugar that could break ketosis. We also had to order a funky, chalky tasting (yes, I tasted it) vitamin supplement to prevent certain deficiencies that may be caused by the diet. Karissa DID NOT like the taste of it...who could blame her? I wouldn't want to swallow a chalky tasting drink either! But as always, she was a trooper!

The results:

By the time March rolled around, we thought we would be able to start weaning her off the meds. If I remember correctly, Karissa had to remain seizure-free for 3 months before we could start the weaning process. Not only had she had a few seizures, we also stopped the diet for one week (I don't recommend doing this) because we were curious to see if it was actually working. I was also getting frustrated with the diet and I wanted so badly to quit. So we did, for a week. Actually, I think it was more like 5 days.

So, was the diet working? Yes, indeed it was!! Even though is was for a short period of time, we noticed an immense change in her behavior once the diet was stopped. Karissa had a very difficult time concentrating on tasks and staying still long enough for us to work on activities, all of which improved once she was on the diet. On the diet, she was much more 'calm' as we would say. Off the diet, her behavior was noticeably different. That was very encouraging to us since we hadn't even started weaning her meds. If her behavior was different as a result of the diet with no medication changes, we couldn't even imagine what she would be like once the meds were weaned. That was exciting to us.

The challenges:

So, back on the plan we go. Yes, we had to start from the beginning but seeing the improvement in Karissa's behavior was worth it. The next 3 months were a bit of a struggle. After turning 3, Karissa transitioned out of the Early Start Program and into the school district. She started going to school every day for 3 hours. It was a special day class, meaning, it was for children with special needs. She was there from 10:50-1:50. That meant Karissa would need to bring her lunch to school.

I can't begin to tell explain how stressful this was for me. Dealing with Karissa's teacher and the aides was a challenge I didn't need. I don't know how many times I had to reiterate the reasons for putting Karissa on the diet. The teacher made me feel like a horrible person for having placed my child on such a strict regimen. I expected her to be supportive, but instead was judged. She would say things like "Karissa seemed so hungry all day" or "cant' we give her more food?" I know for a fact, that they did sneak her food on a few occasions because of the change, although very brief, in Karissa's behavior and the decrease in ketones in her urine. I was livid!!

I couldn't believe her attitude. First, she had no place to judge me. Second, you would have thought she would have understood, since she works with kids with special needs and it is her job to help them learn and help them catch-up if at all possible. I had to tell her time and time again that we had her on this diet with the goal of getting her off her meds with the hope that her learning and development would improve. She never quite understood. I knew that in the fall I would probably be looking into another program for Karissa. But unfortunately, that never happened.

Another challenge we had was traveling while on the diet. In February, we flew to Utah with my parents for a ski trip. I wonder what TSA thought of the ketogenic ice cream that I had packed in my suitcase. Luckily, we stayed in a huge condo so I prepared everything there, except for the ice cream of course.

The week before Karissa died, we were on vacation. I remember planning out and preparing all her meals. She ate 5 times a day. We brought 2 mini coolers full of Karissa's meal for the trip and asked to have a microwave in the room. There was already a refrigerator and freezer in the room. We were set. Planning and preparing her meals was so easy for me. Of course, being a registered dietitian didn't hurt either. It became a way of life. It became routine. It was a lot of work but again, well worth it...

Friday, October 16, 2009

"What? She has to eat that?" The Ketogenic Diet Part 2

The diet and how it works:

The ketogenic diet is a mathematically calculated diet that is high in fat and and low in both carbohydrates and protein. It is a specific ratio of fat to carbs and fat to protein. Everything must be carefully weighed on a scale so as to ensure that the appropriate ratio is met. It also strictly limits both calories and fluid intake. It helps to control seizures and allows many children to become both seizure-free and drug-free. Because it is based on food, the ketogenic diet is considered by many to be an "alternative therapy." Through its demonstrated success, the ketogenic diet has become a part of the mainstream medical treatment for epilepsy.

The ketogenic diet uses fat as its main energy source, rather than glucose. When the body burns fat, ketones are produced. It appears that high levels of ketones are associated with better seizure control. Ketones that are produced as a result of the diet can have an anti-convulsant effect.

More than just a diet:

I say that it was more than just a diet because there were so many other things that were involved.

Ketosis seemed to be the main goal of the diet.If Karissa was in ketosis, we were good and the ratio of fat to carbs and protein was working. Most days I could smell Karissa's breath and know she was in ketosis. It was a sweet, but medicinal smell. How I miss that smell. :(( We actually had to check Karissa's urine every morning using a "keto-stix." This would then tell us to what degree of ketosis she was in.

But, it didn't stop there. Every 3 months or so, Karissa would have her blood drawn. There were many possible side effects to going on the diet: constipation, kidney stones, vitamin deficiency, dehydration, high cholesterol and triglyceride levels to name a few. She would have 17 different lab values checked every 3 months. Some of these included kidney and liver function tests, ammonia levesl, cholesterol and triglyceride levels.

Our journey:


We first considered putting Karissa on the ketogenic diet shortly after she turned 2 years old. That was around the same time we had changed Karissa's neurologist. It was the new neurologist that had encouraged us to consider trying the diet. She told us that we would need to meet with the Ketogenic Dietitian, a Registered Dietitian that specializes in the ketogenic diet, to discuss the meal plan that would be specifically tailored to Karissa.

Being a Registered Dietitian myself, I was vaguely familiar with the ketogenic diet. Although I had never actually instructed a patient on the diet, I knew that it involved eating large amounts of fat while restricting carbohydrate and protein intake. What I didn't realize was how mathematically intricate the diet was. I really thought it would be like an Atkins type diet. Just eat more foods that are high in fat and limit carbs. Unfortunately, I was wrong.

We, or maybe I should say that I, struggled for about 6 months with the decision to start Karissa on the diet. Initially, I was completely against putting her on such a restrictive diet. I mean, what kid wants to drink heavy cream mixed with MCT oil at every meal? Or how fun is it to only be allowed 4 bites of applesauce? I also knew it would be A LOT of work. How would we manage keeping her on the diet when she went to school? Even a bite of food that was not calculated into her meal plan could break ketosis and put us back to square one.

We talked about all the pros and cons. We had wonderful support from family. It wasn't until the end of November of 2007 that we decided to start the diet. Our decision to start the diet was driven by our intense desire to see Karissa reach her full potential. Not knowing all the side effects of the medications and how they were effecting Karissa's development was a factor in our decision. The biggest factor yet, however, was the possibility that the diet would allow Karissa to eventually become drug-free, thus providing her with increased alertness and mental clarity . This was beyond exciting for us! All we wanted was to see our daughter thrive and learn and if that meant going on a funky diet, then so be it! But, the excitement about working towards the ultimate goal of weaning Karissa off all her meds was met with many challenges and difficulties...

Wednesday, October 14, 2009

"What? She has to eat that?" The Ketogenic Diet Part 1

Mark and I did everything we could to help manage Karissa's Epilepsy. Starting at 2 weeks of age, Karissa was on phenobarbital, an anti-seizure medication that makes one act like a complete zombie. About 7 months after starting the phenobarbital, around November of 2005, she was weaned off. She remained seizure-free for about 9 months. After stopping the phenobarbital, she was an entirely different little girl, much more alert and bright-eyed.

I was so thankful that Karissa's seizures had stopped. Of course stopping the meds made me a bit nervous. I felt like I was always holding my breath. Always waiting for her to have a seizure. Anticipating it to happen. But, I kept trying to reassure myself that she had indeed grown out of it, just as her neurologist had said she would.

About 9 months later, towards the end of August 2006, Mark and I were awakened by Karissa around 4:30 in the morning. We weren't sure what was going on. We thought she was having a night terror. She was making weird shrieking sounds and we couldn't get her to stop. She didn't appear to be having a seizure though. It was frightening to say the least. I did everything in my power to comfort my little girl. Nothing worked. We ended up taking her to the ER. She was admitted and was started on 2  seizures meds, keppra and phenobarbitol. The neurologist had informed us that keppra could cause seizures. So why are we putting her on this med again? Anyways.

After a 4 day stay in the hospital, we returned home and everything seemed like it was back to normal. Things were going so well, Mark and I decided to still fly up to Napa, a trip that was planned before Karissa starting having seizures again. Mark's parents were going to watch Karissa while we were gone.

We get up to Napa, barely get into our room, and get a call that Karissa was taken by ambulance to the ER. Her seizures had started up again. Mark and I got the first plane back. Another 4 or 5 day stay in the hospital. The keppra was stopped and Depakene was added.

Karissa remained on anti-seizure meds for the rest of her life. She finally ended up on topamax and trileptal. We had always questioned the side effects of the meds. Did they decrease attention span, interfere with learning or have a negative impact on development? Was there an alternative to medications? These were all concerns that we brought to the attention of Karissa's neurologist. Oh, and I guess I should mention that we ended up changing Karissa's neurologist. We wanted the best. We wanted someone who would be aggressive. Anyhow, upon voicing our concerns to the neurologist, she suggested putting Karissa on the ketogenic diet. And that is where this post really begins...

Friday, October 9, 2009

Why did my sunshine have to go away?

You are my sunshine
My only sunshine
You make me happy
When skies are grey
You never know dear
How much I love you
So please don't take my sunshine away

Thursday, October 8, 2009

My disjointed thoughts...

I don't know what to say. Today my angel has been gone for 15 months. I miss her sweet smiling face. I am pretty sure that my smile died with her. At least that is what one of my close friends recently told me. She is right. I probably look pissed off and miserable most of the time. I am. I am mad at Karissa for dying. She is in heaven having a party while we are stuck here missing her. I am trying so hard to be happy but it is so difficult. I think it must be the time of year and the cooler weather. Who the heck knows. I sure don't. That's all.

Friday, October 2, 2009

Can I just forget?

I debated as to whether I should even post this. It is kinda sad. But this is what is running through my mind right now at this very moment. This is me being real. Today this is how I am grieving the loss of my little angel.

Today I just want to forget about Karissa. I closed the door to her room. I haven't done that in quite sometime. I want to get rid of everything, take down every picture and forget every memory I have of her. I know that sounds just awful and that I am being completely irrational in my thinking. Of course I am not going to get rid of anything. Of course I am going to hold on to every memory I have of her.

But sometimes, like today, I don't want to be reminded of all the good times I had with her. Because the good times spent with Karissa are gone. I won't ever have those again with her because she is gone. Karissa is DEAD. She DIED. She is NOT HERE with me anymore. I don't want to remember taking her to the park or going for long walks. I want to forget all the vacations and trips to Disneyland. Today it hurts to much to remember every good memory I have of her. It is a painful reminder of what life used to be like and of what life is like now.

I hope tomorrow is different. Maybe tomorrow I will be able to open the door to her room. Or smile on all the memories I have of my little angel. But not today.