Day four- leaving 1600; Home

During the evening of day four at Strong hospital William and I were discharged. William proved to be a rock star and we were able to leave before Friday which is the typical discharge day for Ketogenic diet admissions. We had so many visitors Thursday that brought snacks, coffee, lunch, reading material ;-) and even presents for William. I can't say thank you enough to everyone who came to visit; it really was such an encouragement during a difficult time. Since coming home William has had terrible diarrhea, thrown up three meals, and still having tonic-clonic seizures; mommy has had just one full out sobbing episode. Fortunately for William we have two different ways of monitoring his health at home while on the diet via blood and urine. So I can tell if he is staying in ketosis and also staying hydrated. All day Friday I was having second thoughts about the diet. Our family views eating a variety of foods as one of life's simple pleasures and now I feel as though I am depriving William of that joy. William faces so many daily challenges yet always enjoys eating..... and now he makes faces when I feed him. Is it worth depriving him of that simple pleasure??? If the diet controls his seizures and he is alert more often... maybe it is worth it. If he is miserable; maybe not. I think for William it is a quality of life issue and I am trying to discover what William's definition of "quality of life" is versus mine and my expectations. Nevertheless; I am pushing myself to be strong and stick with the diet for at least -3-4 months unless it compromises his health. Soon I am going to write a post with pictures of helpful kitchen tools that I think are a must for the Ketogenic diet!!!

This past week two people in my family committed suicide; Wayne's brother and my uncle. I found out about my brother-in-law Tuesday night and received a phone call about my uncle on Wednesday morning. Not only is loss of life so shocking and permanent but suicide in and of itself is horrible. How awful that people feel that there is no other choice but to end their lives; whether they struggle with mental illness or not. How awful for surviving friends and family to wonder if they could have done something different, helped in some way.....

The last time I saw my brother in law was in November. My mom had the twins and Wayne, Dean and I went out for brunch together. I have a vision in my head.... Wayne and Dean in the mini van... me in dad's sports car trying to throw the stick into reverse forgetting to push the stick in and then down. I turned around and Dean was laughing at me... .. he seemed so happy; laughing and winking at me. It is unreal that he is gone. It is unreal that my Uncle is gone as well.... my thoughts are with my Aunt and her children.

My thoughts are heavy with life and loss...... could I have helped Dean more in some way?? I will never know. Wayne will never know..... we sit together in silence with this heavy weight pushing between us. Meanwhile Dean's dog Sheba is sprawled out on our family room floor with Porter..... it's been love at first sight for the dogs... they are inseparable and happy..

4-1600 day 2 & 3

First I have to say that William is doing exceptionally well these past few days in the hospital. He has been alert and even happy with grins and chattering. The eggnog shakes have been his only meals since Monday afternoon and he is handling this VERY well. I saw three tonic-clonic seizures Monday night and one this morning but none yesterday. Ella and Grandma came up to visit yesterday. Ella likes to pretend she is a doctor or nurse so she was thrilled to be visiting the hospital. Of course I always feel so thankful that she is only a visitor and can leave with Grandma to the comfort of her home. Thank goodness for Grandma; I just can't say it enough.

William and I had a few more special visitors last evening which was nice. After our friends left I called Wayne and received some very distressing news. Wayne just found out that his brother tragically passed away. We talked and finally decided that I will continue on with this keto plan and stay in the hospital until Friday. It is upsetting to be away from Wayne during this hard time but William has come so far and is almost completely initiated to the diet so neither one of us want to give that up. Wayne was at our home and on the phone with his father a lot last night so I was here with William calling many people to talk. It was hard being apart but Wayne had Ella for the night. Tonight Grandma has Ella and Wayne is coming up to be with William and I for a few hours. Please keep Wayne and his family in your thoughts. He will be driving five hours downstate to be with his other brother and father tomorrow. His mother passed away suddenly from a brain aneurism just before we were married 7 years ago. So I think its very important for Wayne to go be with his dad. Of course I am having a very difficult time with this sudden tragic loss of life as well; I was just getting to know Dean as he and wayne were working on our house. Thats really all I have the heart to write at this time. So awful....

For dinner tonight William can eat his first full keto meal!!! I will update with how that goes. Last night around 11 he threw up quite a bit so I am hoping he can keep this high fat meal down. I will update more on the meal tonight....

4-1600 Day 1....

Monday morning I woke up with great intentions to make a hearty breakfast for William and I. Scrambled eggs with pureed spinach, apple juice, and mashed bananas with cream. Starting the day off right!!.... well, not when William chokes on a piece of mashed egg and throws up the entire meal. Failed meal attempt followed by bath time. Of course William had a huge seizure in the bathtub which just reconfirmed that we are doing the right thing with this diet. Or hopefully the right thing because hopefully the diet will significantly reduce his seizures which will allow us to eliminate some of his meds. The end goal would be more alert time to grow, develop, and play.

At 12:oo noon yesterday we arrived at Strong hospital and met with the Ketogenic dietician. Kelly is a wonderful and very informed lady! For the first couple days in Strong Will is only allowed to drink specific (carb free sugar free) flavored waters and Ketogenic eggnogs for meals. The eggnog is made with egg substitute, cream, and vanilla flavoring. William drank it down with no problems. I was very concerned that he would get upset when not allowed to eat his regular meals.... he loves to eat!! So far though he has been wonderful.....such a trooper. I have been trying to keep him distracted. We took a long walk through the kids floor, down to get my favorite Jamacian-me-crazy coffee, and to the gift shop. I treated him to a bright colored and shaggy monkey toy that screams when hugged.

He had to have blood drawn last night and at 6am this morning; not the best way to wake up. The nurses here are wonderful but had to stick him several times and then dig the needle around for each blood draw. I am just about ready to go get my lady Mrs. L from our regular lab on Monroe Ave and insist that she do the dirty work. She never has to stick him more than once....she has skill; especially since William's veins are so tiny.

So after being stuck with needles at 6 am Will and I snuggled up and he fell right back to sleep. Mommy on the other hand can't sleep well with screaming babies in the background and bright lights. So, I am up jonesing for my coffee and Will is sound asleep. I plan to let him sleep as long as possible.

want to know more about the Ketogenic diet?? Follow this link...

The Charlie Foundation | Helping Cure Epilepsy Through The Ketogenic Diet

November mix

Wayne and I ready for a night out...

All things that sparkle and shine for visual play....





Our newest family member; Porter ....
Scooter and light box time combined...

Ella climbed into Will's crib to check on him...
Meditation Ella style..."ooommm"