G had a seizure this morning 🙁 Super Bummer. It was a little one. We are hoping it was due to the lack a sleep from a couple nights ago when he was wide awake and playing most of the night. OR that since he spit of the medicine out last night. (Both could be logical reasons or just grasping at straws).
My prayer is that it is just 1. Ever since the last episode where we had 20 in one day and ended up in the hospital for 4 days has made us worry about would happen when/if the next seizure came.
Super Bummed about this one this morning for a variety of reasons. We were starting to feel kind of normal again….or new normal.

Today I allowed and/or encouraged Gabriel to eat plain chocolate syrup, butter and diet pepsi. Figuring out the medicine and eating stuff feels like a whole new universe. Our doctor said do whatever it takes to get the medicine in him and suggested spoons full of chocolate syrup and soda. A nurse at the hospital taught us the straw trick. Put the medication in a straw, the kid sucks the medication down before they know it. This method works for me about 50% of the time with 1 of the 2 pills G has to take 3 times a day. Not today though…everyday the pill hit his lips he pulled it out of his mouth and said “I don’t want this”. Sigh. 3 times a day everyday…I ask him if wants to take his medicine like a big boy or if he wants Mommy and Daddy to give it to him. WHY? does he keep picking the hard way!!
I was super excited when G said he wanted chocolate syrup tonight! He had 1 spoonful of chocolate syrup with medicine sprinkles and said “im done now”. Grrrr!
I am letting him eat plain butter now because it is one of the things on the ketogentic diet. While we are thankfully not on the diet yet, I am trying to allow him to have any foods on it that he likes. So weird to be feeding my child slices of butter like they are a food…even weirder…he loves it.

I am hoping we all have a good nights sleep tonight. Since Gabriel has starting having seizures we have been sleeping like the parents of a newborn. He is the bedroom with us. Every sound he makes, every twitch, every breath has our attention.

We have had double digit days without seizures now and are starting to get back to the details of everyday life. Chuck has been working late into the night catching up on both work and school. I am exhausted from keeping up with all of the energy that our miracle medications give our little boy (Maybe another post about that coming soon). Both of us could fall asleep at the drop of the hat.

We are trying to get Gabriel to sleep in his own bed again at night. We love him very much but I am over being kicked and kneed  in the face 30 times a night by flailing 3 year old limbs.  We decided that he might be more willing to stay in his own room, if Daddy put him down, instead of Mommy. So while Chuck put him to bed I snuck downstairs to work on filing and other quiet things.  When I peeked in Gabriel’s room, an hour later, neither of them were there. I walked across the hall and found both my boys snuggled up  together in our big king sized bed sound asleep. What a beautiful sight! I wanted to take a picture but figured the flash would ruin the experience for all of us.

So…even though I will probably get whacked a few times while sleeping tonight…I am hoping tonight is the first night all the members of my family get a full nights sleep. Tomorrow is Easter morning………a time to celebrate all God has done to redeem the world. I am so thankful as He daily guides, strengthens and redeems my family.

“Can I hold your hand mama?” Gabriel asked, as he wrapped his little hand around my thumb as he laid down for naptime. Ummmm…..YES! Yes! Yes! Music to my ears! Son….you can always hold my hand. I know there will be a day, sooner than I will be ready, when he will not want to hold my hand. Plus just a couple weeks ago when he gripped my hand this same way in his hospital bed he couldn’t use his words to ask .

One of the many things that has changed recently in our home in naptime. Gabriel has never been a willing napper. He screamed everytime I put him down for over 2 years.  His transition to his toddler bed a few months ago went very smoothly and we were sailing into naptime peacefully for the first time ever.

Not anymore…the reason our new motion monitor. I have a love/hate relationship with the EMFIT (the monitor) that fits over his mattress and alerts us if he leaves the bed or moves in certain ways.. I love it because it gives us added peace of mind that if he has a seizure at night we will be alerted. I do NOT like it because it goes off everytime I do laundry (which I used to do during naptime) and if he gets out of bed. Which he usually does at least once at naptime. So for now I am happy to lay down next him and hold his hand while he falls asleep.

We are going early tomorrow morning for a 2nd EEG. It is to check and make sure the medications are working and that he isn’t having any seizures during sleep or any that are unseen. (at least that is how I understand it).
It hard to believe the first EEG was less than a month ago. The preparation for the EEG is worse than the procedure. We have to keep Gabriel up until midnight then wake him up at 4 a.m.and have to keep him awake until the EEG. This is quite an experience..especially in the 45 minute car ride to the hospital. The medical professionals need him so tired that he will naturally fall asleep and wake during the test. Then they use this super stinking glue to stick 26 electrodes with long wires all over his head. This is the one time his hair is not admired 🙂
The last time we did had the EEG he had 2 big seizures that landed us in the hospital for the first of our 3 visits. We are hoping and praying that the lack of sleep does not result in seizures tomorrow morning. It has been wonderful to be seizure free for over 10 days now!
I am also realizing as I type that had Chuck not really advocated for our little boy we would not have even had the EEG yet,as the original date was April 11th. (I imagine after all the rounds of several in a day we would have…but we got it done sooner because his daddy was on top of it). Just a good reminder to be informed and work with your medical professionals instead of waiting passively.

We met with Gabriel’s new Neurologist Dr. Abdelmoity.  He is the medical director of the Comprehensive Epilepsy center at Children’s Mercy and he is an epileptologist (neurologist who specializes in epilepsy).  On a side note Dr. Abdelmoity played on the 1992 Egyptian National Basketball team.  Anyway he was awesome, both realistic and optimistic and we continue to feel that we are in very good hands.

The great news is that since we were in the hospital and started Depakot, Gabriel has not had any noticeable seizures.  As a result Dr. A suggested that we wait to start the ketogenic diet.  If the third drug works, we wouldn’t have to do the diet and given the nature  of it and the way it changes everything about your life (from an average of 2 hours of day in preparation, to the way that you celebrate holidays, etc), that is a good thing.

The grain of salt is this.  45 percent of all epilepsies are “refractory” to drugs.  Meaning that drugs alone do not eliminate the seizures.  Gabriel has Doose Syndrome, which is a rare form of epilepsy – Dr. A said out of 5,000 cases he has managed, he has about 35 Doose kids.  Actually from what I hear 35 is a lot, so he has good experience with Doose kids – which is encouraging.  Doose is more often resistant to drug interventions, and thus is very often a candidate for Keto.  Also he said that only about 5% of kids who initiate a third drug see seizure freedom.  Depakote was Gabriel’s 3rd after 2 failed to control them.  He also said that ultimately about 80 percent of folks with Doose end up on Keto.  The good news is that Keto tends to work very well for Doose kids, so if we have to do it, there is hope beyond pharmacology :).

What was most encouraging is that he seemed to imply that Gabriel is likely to be on the better end of the Doose spectrum as it pertains to outcomes.  Of course he didn’t come out and say that he would – the truth is its way to early to know for sure, but he was encouraged by his activity and general level of energy and engagement.

So here is the plan.  We keep going day by day hoping that Depakot was the answer and that Gabriel doesn’t see a return to multiple seizures a week/day etc.  If that happens – we would not ever go on the diet I assume.  If however we do see breakthrough seizures and a return to where we have been, then the next Monday we would start Keto.  In the mean time we will also be getting another EEG to see how the Drugs have helped.

P.S.  Children’s Mercy has the second largest Ketogenic Diet program  in the country with more than 125 kids currently on the diet.  It is also one of only a handful of level IV epilepsy centers in the United States. 

So we are moving forward with Faith, Hope, Love, and a plan.

Several weeks ago the pastor at our church preached that included the story of Jesus calming the storm.  It was very timely in my life as we had completed our first  hospital days before.  The familiar bible story tells of Jesus asleep in boat when a huge storm hits. His terrified disciples wake him and plead for help.  Jesus rebukes the storm and all is calm.

I’ve heard this story more times than I can count. Always focusing on the amazing feat of Jesus controlling the weather to save the day.  It has reminded me that God is with me through the storm and has the power to calm the greatest chaos.   The sermon took me one step forward as pastor emphasizes that Jesus was IN the boat with the disciples during the storm.  I realized that Jesus was not just an observer of the storm but that he experienced it all first hand with his disciples

During our prayer time I pictured my own boat and storm of epilespy and the destruction with which is threatened our perfect little lives.  An amazing peace and calm came over me as I pictured Jesus right with me weathering the storm. At the time I felt the biggest part of the storm was taming the “what if” worries.

3 weeks later many of the “what if worries” have become realities. “What if this medicine doesn’t work?” “what if we can’t stop the seizures at home?” “what if he looses some of his abilities?”  Praise God we have weathered storms I never imagined we could. Jesus has been with us! I have often called to mind the reminder that is he in the boat with me. God loves my baby more than I do (which I cannot begin to comprehend). It has not been easy, but I know we are still standing because of God and his people hearing His voice and caring for us.

Thank you to everyone for being His earthly hands and feet during this time.

We’ve been home for 1 days. At 2 a.m. it will be 5 days seizure free.  That will be the longest stretch we have had in weeks.  The plan right now is for Chuck, Gabriel and I go to Children’s Mercy South on Saturday and meet with an Epileptologist (an neurologist who specialized in seizures disorders that are hard to treat). It will be to learn about an extremely regimented diet called the ketogentic diet and then check into the hospital for several days to begin the diet.  http://www.epilepsy.com/epilepsy/treatment_Ketogenic_diet

Chuck had a gut instinct that this would the treatment Gabriel needed weeks ago. I was in denial and hopeful we could find something else for several reasons. 1. The diet will literally be life altering for all of us in many ways. 2. It doesn’t always work 3. If we had to do this diet it meant my baby was really sick with something super bad.  But seems like here we are. I am totally willing to do whatever my kid needs. I NEVER want to see him how he was last week…it was awful.  If the diet works for us it could mean Gabriel could be medicine free in a couple years.

I don’t know what the decision will be if the medicine he is on right now keeps working through Saturday. Today was great. He had plenty of energy (got sleepy around 11:30 instead of 1:00). His speech was understandable all day. He had a fun night hanging out with all of grandparents while I got to hit a consignment sale. We are hoping both of us get to go to school tomorrow 🙂

(Oops new blogger didn’t actually post this after I wrote it on Monday!)

I woke up this morning to hear Gabriel giggling with Grandma Gaye (who had the spent the night with us in the hospital). He is a solid 85% this morning. Speaking in sentences and tearing around the hospital like his own personal play ground. 🙂

He has not had a seizure since 2 a.m. Thursday morning. That means 3 days. Our pattern so far has been…new medicine 2, 3, or 4 good days and then seizures.  We are cautiously optimistic….but on high alert for seizures. It is a challenge to be fully present and enjoy the good moments.

G just woke up from a good long nap and he has a lot of his balance back, and is starting to talk more…. the light is beginning to come back into his eyes too… he walked down to the play room on his own and we played basketball (I hold him up and he slam dunks it) for like 20 minutes.  Good signs….

Chuck