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

Well we thought we were going home today.  G is still very wobbly and not talking much but the docs had been telling us it was just a matter of time before he returned to normal, Neurologist was in just now and is concerned he hasn’t returned to baseline.  So were staying at least one more night.  Were bummed, and a little woried now that the neuro is worried.  Keep praying for G.

Chuck

Continued progress for little man. Gabriel has said several words this morning. 🙂 Yesterday he reminded me of my 1 year old sunday school babies in his speech. Occasional words, lots of sounds. Today is much better!

He is also more steady on his feet. Still wobbly and needing help staying steady but walking around and playing trains without huge barriers of pillows. Good progress.

He HATES the cherry flavor in one of the new medicines and will not drink it.  We have had wrapped him in a blanket and syringe it down. (This kid WILL NOT take meds without a HUGE fight).  Minor set back.

The plan is to go home today.

We have officially lost track of the days of the week….but today is Friday. The most important thing I have to say today….is THANK YOU! We are truly blown away by all the love and support coming our way.We have always been big believers in strong relationships and community but now we are convinced that we are functioning because of all the care coming our way.

Gabriel had an MRI this morning and we were told there was nothing of concern :). This is a big relief to us, especially since he hasn’t been talking. He did say “Choo Choo” yesterday and would say the letter sounds when asked. I never imagined how exciting it would be to hear my train obsessed chatterbox say  “Choo Choo”. However after many hours of no words at all…it was AWESOME!  When he woke up this morning Chuck said “What’s my name?” and Gabriel answered “Chuck”…Hee hee…not Daddy, Chuck.

Yesterday was a long day because he feels fine on the inside but his body is so drugged that he can’t talk or move independently.  He has had a total of 5 wires connected to him and they drive him crazy. We finally got to take 4 of the wires off about 4 p.m. so we could put him in a cart thing and get him out of the room. He calmed down immediately once he was in the cart and finally fell asleep for the first time in 18ish hours  (we think). After his nap we woke up played with a Thomas the train set nonstop for 4 hours.

I (Amy) got to take some time away from the hospital yesterday. My sister lives 10 minutes from the hospital so I got to go to her house. Her husband cooked a real meal and I got to play with my niece 15 month Lydia. It was a really nice respite.

We just got admitted to children’s mercy hospital for the 3rd time in as many weeks. Today as been a really tough day. It is 10:00 as I type and Gabriel has had 13 seizures today. Including one the car on the way to the hospital.  He was eating french fries at the time and we couldn’t tell if he was choking or not. So we called 911 and waited on the side of I-35 for the paramedics to come help.  By the time they arrived he was no longer seizing or choking.  The ambulance paramedic was the same woman who had taken care of Gabriel on his first visit to the E.R. on Super Bowl Sunday. She remembered us…because of his hair 🙂

The ambulance got us to the hospital and my mom and dad were able to meet us there and sit with us in the E.R. Gabriel has several more seizures in the E.R. and he has had 1 more since we have been admitted to the room. The plan at this second is to keep trying different drugs and see what controls them.

The worst part about today is that he has not totally recovered from a seizure since early afternoon. He is trying to verbalize but has not been able to talk. The doctors are clearly waiting til tomorrow to see if it is just the drugs because when we ask about it, they ask questions like “has he been walking today””does he know who you are?” “Can he understand?” Thankfully we have been able to answer “yes” to all of those. So we are thinking since are all connected that we will have to wait and see until tomorrow.  He has been using some of his baby sign for things like “More” to communicate…..which is good…..but it was tearing me up having my super verbal baby trying to talk and getting nothing out.

We are hoping and praying for a better tomorrow.

5:08 a.m. …. “SEIZURE!”  Chuck calls out this all too familiar word. Not the way we were hoping to wake up this morning.   Blank! Blank! Blankity! Blank!  At least we know the routine now. Call the neurologist, up his meds, wait and see.  The pattern right now seems to be…new dose, a couple good days (less days each time first time 4 days, then 3, now 2), seizure, call the doctor, up his meds, wait.  I am truly thankful for every moment of good times. I will take 2 days without seizures as a blessing, but we are really hoping for longer and longer periods of time between these episodes that shatter the day.