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.