I turned 36 today.  I am sure this will be one of those birthdays that sticks in your mind for years to come. Hopefully many seizure free years from now it will be …”Oh yeah that was when Gabriel was first diagnosed and we were getting reading to start Keto”.

Today was wonderful in the simplest of ways.

1. I got to take a nap.

I am a girl who really appreciates a good nap. So much that I actually put napping on a list of my hobbies recently! (Little did I know it would be published in my mom’s groups address book).

 

2. Gabriel passed his developmental assessment with flying colors.

We took Gabriel to our school’s district Early Childhood center to baseline his development. Our hope is that he continues to develop well and want to stay on top of it. The social worker came out and told us he easily passed every area and is well ahead of what would be expected for his age. She seemed a little confused as to why we were there until we told her about our recent diagnosis. It is good to have possible resources in place before we need them.

 

3. Gabriel and I got to eat 2 of his favorite foods together today… Red Robin and Pizza.

4. Not 1 but 2 floral deliveries arrived for me.

5. Gabriel did not have any seizures!

(at least during waking hours…he had one at 3 a.m. but that seems to be part the routine right now).

I am typing the blog today as he takes his 3rd nap of the day.  He is taking LOTS of meds right now. While his body is adjusting,  his energy and sleep patterns remain crazy.

He had 3 seizures in the middle of the night last night. 2 short ones (under 1 minute) and one longer one (over 4). Needless to say this messed up all of over sleep for night. I woke up 10 minutes before my preschool class starts—YIKES!

I was glad I got to go to work today. I love teaching and have an especially loving class full of sweet kids.  They greet with me with lots of hugs, energy and stories. Being around my class reminds me to hope that Gabriel will be back and school having fun soon as well. It was great to see my school kids and get encouragement and support from the amazing women I work with.

He had a fun day playing with my parents today. They took him to Chick-Fil-A. They babysit on Thursdays while I work and one of their weekly traditions is to spoil him with some fast food. So this was the last time for that tradition…at least for the foreseeable future.  I think Gabriel and I will have several fast food meals this weekend before we go into to start the Ketogentic diet on Monday.

Thanks for following our story and helping me process our life events.

 

 

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.

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.