Gabriel has had 2 really and I mean really good days! He had his first Occupational and Physical Therapy appointments on Friday (which were in and of themselves wonderful…but I will save that for another day). I think he said more words in his 1 hour occupational therapy session than he has said all year at preschool. Chuck and I kept looking at each in shock over how much the kid was yammering on about EVERYTHING….well except was he was supposed to be focusing on. We don’t think he has any seizures in 2 days (a couple possible episode but not clear)! He has been more active and daring….always a good sign. At the park today he would lay on his belly on the swing and push off with his feet then swing. Believe it or not this takes a lot of balance and strength, so it is not something we have seen in a long time. So nice to have some good things after almost a week of tough times.

I am continually amazed at how exhausted I feel all the time. Even when I get a good break and feel rested, there are more pizzas to make, more meds to prepare, more data to record and more seizures to deal with. I imagine it is how most of us feel with whatever our every day life entails.
I think I have said at least 100 times and I can easily say it 100 more times without it loosing any truth or significance in my life….we, as a family are standing because of the prayers of the saints and the support and care coming from so many sources I cannot even begin to count.

I often think of Moses in Exodus 17:11-12
11 As long as Moses held up his hands, the Israelites were winning, but whenever he lowered his hands, the Amalekites were winning. 12 When Moses’ hands grew tired, they took a stone and put it under him and he sat on it. Aaron and Hur held his hands up—one on one side, one on the other—so that his hands remained steady till sunset.

Doose is a batttle that Gabriel, Chuck and I have to fight. As determined as I am to win this battle my arms are weary. Thank you holding up our hands, through gifts to help us with our trip to Maryland, cooking g’s food, playing with our boy so we can get things done, praying for us, sending us encouraging words.

We survived our first Keto Halloween!

We filled goody bags with little treats for Gabriel. Then wrote a little note to the neighbors explaning his needs, what his costume would be and asking them to give him the bag.  We had a great response!  Every house we had delivered the goody bags to was ready for us! A couple families even got Gabriel extra little goodies 🙂

We filled goody bags with candy for the kids coming to our house to Trick-Or-Treat.  I wanted Gabriel to be able to help in passing out the treats but not have to look at and handle candy he couldn’t have.  He carried a purple pumpkin because purple is official epilepsy awareness color.  🙂  We also had a bag of hot wheel cars ready  him to trade candy for hot wheels. (He  got 2 pieces of candy  because he got so excited about a house that was further then we had delivered goody bags)

He was very excited about his safety glow sticks 🙂

He loved passing out the goody bags. He practiced saying “Happy Halloween” to every kid who came by.

he got especially excited about the houses that went the extra mile decorating. I was trying to get a picture showing his boots with the costume.

He was very happy with all of his loot! The glow sticks were by far his favorite! He had lots of fun playing with Nonna and Papa (my parents) who came over to celebrate with us, while Daddy was in class.

Unfortunately, G has had lots of seizures this weekend ;( We are seeing the same kind that sent us to the emergency room last month. He has a drop seizures, then trembles and ticks like a full traditional seizure but he is conscious and tries to move, play, whatever. I hate this kind because they clearly upset him.  Sometimes he cries during them and sometimes he is clearly scared and looking at like “Help!”.

I came across 2 different piece of media that really impacted me this week. Each reminded me to be present emotionally, not just physically and to cherish each moment and find the beauty around me.

The first was a beautiful video in a blog post a friend shared on facebook

www.seeingtheeveryday.com

Second, was an interview on the Katie Couric show about a family, who had tragically lost their  4 year old to brain cancer.  I had the show on while I was sitting on the floor holding Gabriel, who had just finished having a seizure. It was heart wrenching to hear this amazing families story.  A solid reminder that even though things seemed to be turning for the bad, I still had my baby alive in my arms.

www.theronanthompsonfoundation.com/about/ronan

I couldn’t find a link to the interview, but I posted the website for the family above, Taylor Swift wrote a song in tribute to this boy called “Ronan”.

The combination of these 2 things have effected a subtle, yet important change in me. On Saturday, Chuck said he had to go Lawrence to pick up somethings he needed for the weekend. I didn’t get frustrated that I would be left alone with a kid having seizures. I just said “we’ll come with you” and we had a few great hours together as a family. We just chatted and sang in the car.  We ended our time together with a trip to the local grocery store to pick up pumpkins.  We told G it was the pumpkin patch and had him fully participate in the fun. 🙂  Chuck is very busy and getting to have 2 1/2 hours of uninterrupted family time is very uncommon. My heart smiles just remembering our simple time together.  Not sure I would have appreciated it without to 2 stories above.

I hope everyone reading this blog is able to “see the everyday” in their own beautiful ways today.

Kind of at a loss as to how to start and write the blog tonight. Chuck’s parents have been in town for a few weeks to help including helping with bedtime. Since I usually blog when I sitting with Gabriel after he goes to sleep I feel behind on the stuff of “blog world”.  I’ll start with the latest on seizure activity and health.

Gabriel had 3 seizures today. 2 of them were drop seizures followed by what I call the 1/2 tonic clonic. Tonic clonic are what you think of when you hear seizure.  The 2 seizures today including the tumors and rhythmic jerking but he is somewhat aware and tries to move but can’t totally control his movements. Frankly, they just stink! We haven’t seen these for several weeks. G was having tons of these right before Chuck’s parents came to help.  Until today G had been having 1 tonic, clonic during sleep at night usually between 4 and 6 a.m.  I was excited when he didn’t have one last night….I need to learn not to be excited about this….the last 2 times he didn’t have one at night the next day the 1/2 things started.  Hoping today is the only time we see them.

In the meantime, we are moving forward in our preparations for our trip to John’s Hopkins in Baltimore.  We are supposed to get all of Gabriel’s medical records and bring them with us. The doctor will look at them while we are meeting with him.  From what I understand at this point, Gabriel won’t have any tests, blood work, etc done while we are there.  I wish I were more excited about the trip. I am nervous about any changes that might be made because most changes bring about tough times before they get better.  I am glad we are going…figure the more eyes we have an Gabriel’s case the better.

We have made it 2 days without any seizures! Yippee!

This is the first time we have been able to say this since early September, possibly late August.  Gabriel’s doctors added an extra snack to his day.  He is now eating 7 times a day (4 meals of 238 calories and 3 snacks of 100 snacks for a total of 1250 calories per day give or take a few calories). We think the extra calories, which are intentionally higher in oil, right before bed are helping a lot.

He is being a typical 3 year old and showing a stubborn streak with eating lately. We have several snacks that he will eat but meals are a different story. Over the last couple months he had stopped eating his egg meals, his pancakes, his waffles and his “cheeseburgers”. Seems like every couple weeks there is something else he refuses to eat.  There have been several days in the last couple weeks, in which he has only eaten pizza for all 4 meals! UGH! I asked our nutritionist about it and she said while it wasn’t ideal, it is ok,  the most important thing is that he is eating. She also said he will probably get sick of it quickly and want something else. HA!!!! Clearly she has not had a picky eater living in her own home yet 🙂  Adding the snack and the insistence on tons of pizza has led to me spending a lot more time in the kitchen. Thank God for our pizza angels and Grandma in town!  I tried a new version of pancakes with macadamia nuts tonight and he ate 1/2 of them….not perfect by far but hopeful none the less.

While his stubbornness on eating is ramping up to all time highs with eating,  the medicine is FINALLY (after over 6 months) getting better. He is still not taking it willingly but he will at least open his own mouth now for us to syringe the medicine in. HUGE HUGE HUGE step! Having Grandma in town to hold his hands while I give him medicine has also been wonderful!

I keep hoping to write an entire blog about how totally blown away and thankful we are for all of the continued support…….it is just amazing to walk into work and have a gift bag sitting on the table to bless my family, or an envelope with a gift card handed to me in passing, or going to the mailbox and finding real mail or a package or a yummy meal to feed the growns up, especially Grandma and Grandpa Russell,  who have taken weeks out of their lives to come help us. THANK YOU!! THANK YOU!! THANK YOU saints!

Gabriel had a really great, energy packed, pushing all the boundaries day.  We got to say ‘no’ and ‘stop’ tons of time because he was doing normal 3 year old things, throwing blocks,  trying to stand on a toy truck, hanging on mommies leg as she tried to cook. He has had 3 good days in a row now. He is running, wanting to play outside and even trying to pedal his big wheel! woo hoo!

I took him to one of his favorite places…a model train set up in a storefront at a mall near our house.  He has loved it since he was little.  there are several trains running throughout the store.  he always ran right in and would run from one set up to the next.  when his epilepsy started he used to go and sit by one display in the corner and watched the trains go round and round while having lots of little drop seizures. we were sad he wasn’t running around but glad that he still felt joy in one of his favorite places. When we went today Gabriel was back to running around looking at every train and didn’t even glance to the corner he used to sit in.

So… we are thankful for a good today.

I am writing at the end of a very good day for Gabriel! He was energetic, spunky, even a little naughty at times…pushing boundaries. But in our world…this is good because it means he is feeling good ( I don’t think our cat that got pounced on would agree…but at least she got an apology). The highlight of my day was when Chuck got home from work  and he, Gabriel and I all laid on the floor wrestling and laughing.

Gabriel made it all 3 days of preschool this week! First time since the first week of school! Yippee! He got to be the first person in his class to bring something for the “Mystery Bag”.  His teachers encourage non toy items and the child makes up clues for their classmates to guess. Gabriel chose to take purple earbud headphones. His clues were 1. they plug in. 2. you use them to listen to music 3. they are long

Grandma Gaye snuck in and took a picture for me. I love that he is smiling  and alert. Grandma said he even answered his classmates guesses with yes or no. I laughed at the irony of the headphone shirt I had chosen for him to wear (totally by accident).

He has had 2 days with only 1 seizure…yippee! WHAT? Am I really excited about a day with a seizure? well, I guess so, because it is much better than double digits and we are headed in the right direction. We have added some extra calories at the end of the day and that seems to be helping.  We are now testing his ketones with a blood meter (like diabetics use). It is incredibly helpful in getting realtime readings on his ketones. These numbers helped us communicate with the doctors that led us to deciding more calories is what he needed.

We are so blessed by a fellow doose family who shared some extra testing strips they had. At this point our doctors will not prescribe them and they are $5 per strip. UGH! Hoping the doctors at John’s Hopkins will be more open to listening to us on this. It is confusing to us why our team won’t prescribe when it is clear from the various reputable sources and parent boards that many, many keto kids have the blood meters.  Oh well.

In other non medical news, we have had a wonderful week recouping, catching up and even relaxing a bit with Chuck’s parents in town.

Gabriel has loved helping Grandma Gaye in the kitchen.

He has played a lot with Grandpa Frank, including some very important gardening.

He even helped Mommy and Grandma build a cabinet for Daddy to store his school stuff in. (I have to admit I did teach him to say “Girl Power” after the ladies of house completed the task.)

The big song in my mind this week has been:

On Christ the solid rock I stand, all other ground is shifting sand.

The last few days have been exhausting at best. We are now in 10 day of seizures. Boo! On Sunday, Monday and Tuesday he had over 20 each day. We went to the ER Tuesday for 6 hours and left with no answers or resolutions.  The ER was super busy and we could not get the doctors to listen and look at his chart. After 4 of sitting in the room with no medical professionals coming to see us at all. A nurse came in and said they were going to prep him for an IV and a catheter. At this point Chuck insisted on seeing a doctor and asking why.

A new doctor had come on shift and thank God for that! He FINALLY looked at Gabriels notes from his doctor and…honestly I am still so mad about how everything was handled up to this point I can’t type it out without loosing my religion.

yesterday was better, but still not good. He only had 5 or 6 seizures . We got a message from Gabriels doctor that some of the blood tests from Saturday and Monday (yep 2 of them…hospital messed up 1/2 of them on sat so we had to go back on Monday) showed that g was probably out of ketosis (what the diet does, that slows down his brain) at some point and he body just needs to get back in a steady groove of ketosis.  they think the strep followed by the antibiotic probably caused this.   in the meantime gabriel is very irratible 1/2 the time and will only eat his snacks and pizza.  The pizzas are precious, precious because they are time consuming to make and we have amazing friends who help us with them.    I can’t be like a normal mommy who feels frustrated that her kid won’t eat what i make because he has to eat. so we are blowing through pizzas like crazy. My only choice is to syringe oil, butter or cream.

Needless to say it has been a tough go, the last several days. we have had A LOT of extra help from my parents and amazing friends offer to help in anyway. I am getting better at knowing what to ask for an accept it.  Chucks parents are currently on the road drive up from Texas to be reinforcements.  So glad help is on the way.  I realized on Tuesday, that the hardest days for me are when he is having lots of seizures and won’t let me comfort him.  I spent hours this week hovering over a child who was unstable on his feet but determined to move and play.