Our normal has become so skewed lately, that I almost started this post with”Today was a good day”. Which it has been a good day because he has not had any seizures! I think I am going to classify today as a good, “bad day”.  Meaning he is not totally himself yet.   He pretty wobbly-falling down a lot and tripping , speech is slow to come and difficult to understand as if he were really drunk, and he is very emotional. Poor Kid. I hate that he is sad and I can’t fix it.

The good part is he has had LOTS of play time today. He played with his little people train track, spent over an hour outside “mowing” and played pizza party with me. His play on days like these is very interesting. He spent almost 4 straight hours repeating the same actions of lining the trains up off the tracks, driving them around the track and lining them back up again.  It seems that repetitive tasks like this calm him when he isn’t fully functioning. He seems compelled to do them….I guess kind of like a pregnant woman nesting. He did similar play at the hospital a few weeks ago.  His behavior today has been almost identical to the end of our stay at the hospital last time. It has been easier for me this time for a couple reasons.  1. I know he comes back to himself. 2.He does not have the added frustration of wires hooked to him.  It has been much easier and more comfortable to manage at home. So I guess that upside is “If” this happens again I know we can handle it at home. The downside is the reality of our lives that “If” should really be when.

Whew..what a day. We are very glad to be home. He has had 1 small seizure since we got home but other than that has been fine. My parents came over and played with him so Chuck and I could get a small break. G had an awesome time playing with his lawnmower outside and playing with his train track inside.
His abiltty to communicate and talk is hindered by all the medication. He can talk but it takes a long to form sentences and his speech is slurred. He is very easily frustrated in this state…which I totally understand. I would be frustrated too. So he is very emotional and tired but totally wired on meds. We are 2 hours past his regular bedtime and he shows no signs of stopping anytime soon. The doctors upped the dose of one of the medications we think gives him extra energy as well. I keep reminding myself…deep breaths, deep breaths.
As I was typing he finally stopped crying 🙂 Hopefully sleep is coming soon to our sweet boy.

Gabriel got to ride to the hospital in the ambulance, once again. He had several small (under 2 minutes) seizures at home today. We loaded in the car and started toward the hospital. After a phone disucssion with our new doctor we decided to try and manage it at home. He said that if Gabriel had another seizure over 5 minutes to call 911 and come on in. We stopped at QuikTrip to get a drink on the way home. G had a 7 minute seizure in the parking lot. So we called 9-1-1 again. This time Chuck road in the ambulance with Gabriel and I ran home to get a couple things we thought we might need. It is so strange to be living a life that includes sending my child off in an ambulance and not being totally freaked out and nervous.

We aren’t entirely sure how many seizures he had today…around 10. 3 over 5 minutes. They are finishing loading him with some good drugs and said we can go home. Again, I find it crazy that I want to go home, instead of staying at the hospital.

The nurse just came with the discharge papers.

G has had 2 seizures this morning. The first was short. The second was over 5 minutes so we had to give him the super strong stuff.  He was restless for a few minutes but now he is sleeping. I am praying that we are done with seizures for the day.

Natalie Grant’s song…Better Hands Now popped in my head this morning right after his first seizure.I am sure there is an easier way to share this song but since I am new blogging…..Here is a link to a youtube with the lyrics….

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.

“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.

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!)