Day 1 at home....

Thursday night was quite the eventful night...I went grocery shopping with my mom and sister. WOW! It took us about and hour and a half to buy food only for Samantha for 10 days....All the label reading and double checking the ingredients is exhausting. I will be keeping a list of brands that she can have so that I don't have to label read every time. Thanks Laura for spending your birthday night with me! What a fun birthday!

Sleep was a much needed thing in our house. I think everyone slept until a little after 8:00. I thought I would be nice and try and make something for Sam for breakfast that didn't include scrambled eggs...thought she was probably tired of that. So after 20-25 minutes of weighing everything I was finally ready to prepare her pancakes...that consist of egg whites with the egg yokes and sour cream folded into them. I was so excited that they turned out...too bad Sam didn't even want to touch them! I had forgotten to give her the medicine that helps calm her tummy down..oops...so many things to remember...She did eat the strawberries and drink her cream during her HUGE melt down... This almost brought me to tears as I was thinking..."I have to do this for 2 years???". It's going to be a long road! Lunch went great and so did dinner....she was a champ. We did have distractions to help the process go a little more smoothly...during lunch we took pictures of her so she would get another bite. Dinner time she got to watch a Dora movie on the laptop...Hey, I say pick your battles and right now sitting at a table to eat is NOT the most important thing.
Grandma went home. I was sad to see her go....just something about your mom being there to support you in new endeavours. However, she had been gone from home for a week, so I totally understand her wanting to get home. She was a great help with Spencer and Sydney.
We topped our day off with a trip to the Royals game. It went well, but felt like we were always on our guard to make sure she didn't grab something from someone sitting around us. The Royals even won in the bottom of the 9th and we got to watch fireworks. So a lesson we learned....should have packed her snack in a cooler so we could have fed it to her on the way home. Oh the lessons we will learn on this journey... Overall, I think the day was ok, still room for improvement, but know that things will get better with time.

WE ARE HOME!!!!

Yeah! We finally arrived home around 2:30. We have all napped and recharged ourselves so we can go grocery shopping for Sam's new diet. The menus have been made, the list has been made...only now if we could snap our fingers and the groceries could be bought and weighed... New life here we come!

Day 4 and counting...

We are still here, but just waiting to see the doctor. We have our fingers and toes crossed we will be able to go home. Blood draw this morning went ok, still not her favorite thing. Her blood sugar was low....42...way low. Once she ate it came back up. We are battling meals here but I think it is mostly because we aren't in a familiar setting.

Thought I would include a link about the diet as I have had many questions. One of the questions I have had is about weight gain. The diet calculates only a portion(80% typically) of her normal calorie intake so she is burning the calories she eats. Another question has been about her cholesterol, while it is possible for it to increase, monthly labs will be draw, and again because she isn't eating all the normal calorie intake she burns much of what is eaten.

Here is the link. http://www.epilepsyfoundation.org/answerplace/medical/treatment/diet/

Day 3...SIGH.....

Had a 6:00a.m. wake up call this morning for blood, but so glad that it was taken out of the IV inserted yesterday, made things go a little smoother. Breakfast at 8:30, but before breakfast tried to give her one her seizure medicines in gel cap form...didn't go over so well..ok so it didn't go well at all. I got to hold throw up in my hands-YUM-not! So then we had to try and feed her breakfast, who wants to eat after you throw up?? Finally got it down her and then she was off to make crafts- a very cool hat and door hangar.

Lunch rolls around and well she wasn't very hungry because breakfast was later than normal so she didn't eat very much. However, she didn't have a problem eating her "ice cream" (cream with a little bit of diet root beer frozen in it). She was invited to a group music therapy..and she loved every minute of it...did I mention that the group consisted of her, and her alone? She has been napping so I am taking advantage of the quiet time. Grandma Marcia, Spencer, Sydney, and Aunt Laura are headed up to visit..oh how we love visitors! Will update later after we have dinner.
Dinner was a success! Yeah! Helped to have entertainment here for sure. After dinner Sam, Spencer and Sydney were invited down to "build a bear" workshop. Sam made a monkey...HUGE surprise...this is one of her favorite animals. The only disappointment tonight is that her IV didn't hold and they had to remove it, so that means another stick tomorrow to draw blood.(notice her arm in the top pick where they had to remove the IV-EWWWWWW) God is good...we truly are blessed!

Day 2..The Good, the bad and the ugly...

Ok so I can't blame Sam for having a bad day...I mean who would like to be woken up at 4:30 AM to have blood drawn, and to make matters worse...be stuck 3 times trying to find a vein that worked. Fixed her eggnog "shake" for breakfast, didn't settle very well and she ended up throwing up the first drink, the good side..HOUSEKEEPING! Took most of the day to get the rest of the drink down her. Since she was such a hard stick for blood and because she had an upset tummy and the were afraid of dehydration they called the vascular people to put in an IV...3 sticks later we have an IV...did I mention they used an ultra sound machine to find the vein? She looks like she has a broken arm because I made them wrap it up so she wouldn't pull it out...the best part..they can draw blood from there tomorrow! She inhaled her lunch..chicken dipped in mayo and strawberries, but more cream. This is becoming the issue...she wasn't much of a milk drinker before, so who would like to drink cream-whipping cream that is??? She got to go and paint using syringes..how fun is that. We also put together puzzles. One of the highlights of her day...a very dear friend from church that works here came and did music therapy with her. I think she could have done that for at least 3 hours. Thanks Kim! Another highlight, Aunt Laura, Grandma Marcia and Sydney came to visit. She had a blast playing hide and go seek in the room...yes in the hospital room, don't you know there are so many places to hide! I was just glad for the distraction...helped get her cream from dinner down. Sad Spencer wasn't here and was sad for me because he had his Championship baseball game...and I didn't get to go and cheer him on to victory! Very proud of him, he had an outstanding season! 1st place...has a nice ring to it! Way to go Spencer! Looking forward to tomorrow, if she keeps her breakfast down we should be released tomorrow afternoon...and breakfast is eggs, so we should be good to go. On a positive note, Sam went into ketosis quick. That means that she is now burning fats for energy and not carbs. Statistics show that kids who go into ketosis quickly tend to have a higher success rate for controlling seizures. YEAH! Steve and I had our "training" today, feeling a bit overwhelmed with the information, but know that things will work out great. Our pastor made it up today and prayed over Sam, what a blessing. Trust in the Lord with all your heart...and that I do...Thank you Lord for all the blessings in our lives!

Day 1....

We arrived at the hospital a little after 10:00 this morning. The first thing we had to do was have blood drawn-that was a joy! Why do some people not listen to the moms of small children??? I told her that she would need 2 people to draw her blood. I was told they were short staffed...guess what??? She had to push the emergency button to have someone come and help...GEE what a concept! Once we arrived in the room there was a parade of people..the resident neuro, the neuro's nurse, the dietian, the on call neuro and his flock of med students, the on call pastor, and the list goes on and on. Lunch time rolled around and what I thought was going to be a fasting day, turned out to be not a fasting day. Steve prepared her first ketogenic meal- an eggnog shake. Which is comprised of eggs, whipping cream, and pure vanilla-weighed and measured to a specific gram. So the test came, would she or would she not like this "drink". She sucked it down, every last drop and then asked for more. Grandma Marcia, Aunt Laura, Spencer and Sydney showed up to entertain for awhile-what a blessing. Next came pill time...you see we can no longer do her syrup medicine because of the sugar in it...Swallow a pill-are you kidding me? We poked it in some sugar free jello...pill one...gone, not a problem. Pill two..not such an easy task, she was on to me..she bit the pill, but still swallowed the jello. Dinner time rolled around, on the menu: hotdog, mayo to dip it in, broccoli with butter and cream to drink. Again...in a blink of an eye, gone. Bed time snack: another eggnog shake...it didn't go down as easy, I had to distract her and get sips in here and there, but alas it was gone! She is now sacked out. God is good, as I know that it is only by HIS grace that this day worked out as well as it did. Tomorrow we are told is the hardest day of our stay here because her body will make the switch to burning fats instead of carbs. She truly is an amazing little girl! God is so good....

Finally it's here...

Having a hard time sleeping, knowing that in a few short hours our lives are going to change dramatically. I am excited about all the possiblities, yet nervous about all the small, tiny details that this diet will have for our family. We had pasta today in honor of Sam, as this is one of her very favorite meals. It is hard knowing that we will have to deprive her of some of her favorites, but knowing that this could help stop the seizures makes the pain a little less. Had our pastor pray over Sam. As he said in her prayer, God is the almight physician...and this I truly believe. God is good and I know that He is with us and for us. Here's to a new beginning!

The day has been set....

July 26th we will check into Children's Mercy to begin the ketogenic diet with Sam. My mom is coming up to hang out with Spencer and Sydney- Yeah for mom! Not much other news, just reading and reading and reading to try and get some what of an understanding of what we are getting ready to encounter.