Last Tuesday G had 10 seizures, it was the 9th or 10th straight day of seizures and he had stitches in his chin.  Today we are enjoying a family vacation in Branson!

Gabriel is 5 days seizure free as I type and we are all enjoying our time away from home!  We are incredibly greatful for generous and kind family friends, who shared their time share points, enabling to take a vacation! My Mom and Dad got to come with us, so we are enjoying a combination of fun outings and rest time!

I am so glad we came. Last week was really tough and I kept thinking we were crazy trying to take a trip with Gabriel having drop seizures everyday. We figured, we would try the trip and could come home early if we needed to.  I literally thought, “Well at least if he has a drop seizure during the car ride he can’t fall and get hurt”

Our lodging is beautiful and huge! We have 2 adjoining units, each with a kitchen, 2 bathrooms, HUGE jacuzzi tubs and tons of space. Gabriel’s favorite thing is the corded phone.

He picks up the phone 10 -20 times a day…says “Hello, Hello”, “How you doing?” etc.  It really is the simple things!

We have not made him wear his helmet every day since he is doing so well. But we do bring it with us and hook it onto his backpack.  Apparently he was missing his helmet during mini golf… we turned around and he was wearing it, froggy backpack still connected. 🙂

We hope that everyone reading this gets to have joy in their hearts today!

Woo hoo! We finally made it whole day without a seizure! We are hoping for another day tomorrow.

Gabriel cried last night when Chuck told him we would be going to the hospital in the morning…..He cried because he didn’t want to wait til morning! He wanted to go right then! Good thing he doesn’t mind it too because he got to go twice today. Once to get his stitches taken out and once to reseal the wound after it split back open. Sigh. He does so well with all the poking and prodding it blows my mind. I can tell he gets a little scared but he just powers through.

Sunday morning began with a literal bang, as Gabriel split his chin open on the train table at 6 a.m. We were at the ER by 7 waiting for stitches.

Gabriel was a complete and total trooper. The doctor and nurses all commented multiple times on how good he was. Truly, he did not move an inch or cry the whole time his was being stitched up. He ended up with 6 stitches in his chin. I think he got a couple extra for good measure since he was so well behaved.

He has now gone to the hos-ti-bal (as he calls it) so many times that he pretty much rolls in asking for the train sets. As a matter of fact the only tears he shed this morning where when we told him the trains had to stay to help other kids get better. 🙂

The rest of the day was pretty good. He bounced back quickly, talked and played with trains, enjoyed time celebrating his Papa’s birthday and playing Yahtzee with the grown ups.

We now have 2 follow up appointments this week. One on Tuesday with his neuro pyschologist to find out the results and action plan from our last visit and one on Thursday to get his stitches removed.

We have reluctantly bumped one of his meds up a bit at the doctors advice. We were hoping the Carnitin would help stop the seizures but there has been no change after several days.

The last several days have been tough. We went from 6 to 7 to 8 seizure free days, and now we are 10 straight days of seizures in. We were hoping to begin reducing meds and get him out of the fog and instead we are adding more.

We know that a breakthough is coming and remind ourselves it could be much worse.

In the meantime we try to soak up the good moments.

It has been a tough week without a lot of answers on the epilepsy front (I will write another blog about that soon) . In the midst of the pain, this week has been filled with amazing blessings including friends bringing meals, trimming trees,offerings lots of love and family spending time with G so mommy and Daddy could get things done.

On Wednesday night I found my uttering many prayers of thanks. I sat in our church’s sanctuary at the National Worship Leaders Conference feeling God’s loving arms embracing me.

I was there with my dear friend Jamie. Jamie and I, along with several other amazing women have, been spiritual sisters for years. We have been through many of life’s ups and downs together. Two summers ago, Jamie and her family were struck by a tragic low, when her younger sister had complications after surgery and was without air for an extend period of time. Naomi was left in need of 24/7 care. Currently she is unable to communicate or do anything on her own.

Simply being able to spend time with Jamie was an amazing blessing. As I sat next her, I was thinking that she was the perfect person to be attending this concert with.

The music was amazing! We heard a group from Ireland called the Renfro collective (I think), then Paul Baloche (Amy Grant, Michael W Smith, etc have recorded his song…if you listen to Christian music you know his works even if you don’t know his name)……AMAZING!!!!

But for me at least the best part was between the sets. You know the time, when someone comes out, and talks a while so the stage can be reset? Normally, I would use this time to tune out, check my phone, or go to the bathroom. So glad I did not on Wednesday.

Our speaker recounted a story from a Christian event he had hosted years before. He was in the front row, next to a man and his teenage son. The son, who was in a wheelchair, had been injured in a football accident. He had lost his sight, his speech and almost all mobility, except for that in one arm.

Our speaker told of an entire crowd of men standing to sing “All Hail The Power of Jesus Name”. As the crowd sang, the father stood in front of his son, pulled him up into a hug and sang the words over his child. As he sang, the boy burst out in a huge smile and with much effort lifted his one working arm unto his father’s shoulder.

This story in and of it self was amazing! A picture of a fathers unconditional love, a child,who had survived tragedy, expressing joy in the presence of God. A picture of heaven when the boys body will longer limit him.

Then our conference speaker continued. He said the experience gave him a taste of heaven and reminded him of a bible verse. He opened his bible and began to read: Zephaniah 3:17
The Lord your God is with you,
the Mighty Warrior who saves.
He will take great delight in you;
He will quiet you with his love,
He will rejoice over you with singing.”

This is MY Favorite bible verse! It is one that Jamie and I (along with our other girls) had shared and prayed for each other for years! Needless to say, I was a great big sobbing baby.
I was thanking God for reminding me: 1. He loves me 2. He sees me. 3. HE is mighty to save 4. He delights in me (and my boy) and 5. He rejoices over me (and my boy) with singing!

My prayers for Naomi, remain unceasing, my hope is that she will be able to be complete again here on earth and that in meantime, in her healing process, that she will experience the JOY of the heavenly father singing over her.

My prayer for my own boy is that the seizures will cease and until, they do Chuck and I will embody God’s perfect love for him, as our family lives in God’s mighty power and grace.

We had a bit of a rough day today.  At least 8 seizures that we documented, I’m guessing we were probably at 10-12 all told.  Gabriel and I were watching some online worship music and jamming out and I had the camera running to catch him dancing.  I didn’t get much of the dancing but I did catch a Drop seizure on camera for the first time quite by accident. As you will note he starts off just watching the computer and playing with his truck then all the sudden his hands go up his head bobs down and he kind of crashes sideways to the ground.  This one was fairly mild.  He pops right back up, but then a few seconds later lays down and moves his head back and forth.  Basically these are generalized seizures, they kind of temporarily scramble his brain.  Usually (though he didn’t this time), he comes up crying and mad.  They all have a cumulative effect and the more we see, the less he can speak clearly which is the hardest part. I took the music out with some youtube wiz bang and dropped in a free version of one of his favorite songs about Jesus: Jesus Loves Me.  So appropriate given the line, “Little ones to him belong, they are weak, but he is strong”  Be strong Jesus, we want you to kick some doose syndrome butt!

Chuck

P.S.  One tip for watching – close any ad popups.  The seizure happens fast at the beginning of the clip, you might have to close the ads and then go back and start it again to see it.

If you know our typical pattern Tuesdays seem to be bad days..not so this week. Monday was really tough but today has been much better. Only 1 seizure and not until 8 o’clock tonight.

We talked to G’s doctors and they added caritine (another pill) …it is something that naturally occurs in the body and is necessary for fat to be metabolized for energy. The hope is for it grab every little fat Gabriel is ingesting and get it to his brain to stop the seizures!

I was able to use a ToysRus gift card, that mysteriously showed up in the mail a couple months ago, to surprise Gabriel with his own garbage truck! HE LOVES it! He played with it for hours today. Before bed he made a point of stating, “My new truck, not go bye bye”. We assured him it will be here to play with in the morning.

We are praising God for a better day today. Again, I find myself welling up with tears of thanksgiving for the amazing people in our lives who offer prayers, make phone calls, schedule playdates and just in general support our weary souls. God is using you to carry us through.

I was so excited that Gabriel didn’t have a big seizure in the middle of the night like he had the last 3 nights. Now I find myself wishing he had just had the 1 in the middle of the night instead of the craziness we had today. 🙁

I think we are ready to say that has has offically developed a new kind of seizure….. fan…freaking….tastic ;( He has 2 episodes that fit the description of complex absence seizures. 1 last night and 1 this morning. He also had 1 gran mal, a partial slow drop and a full backwards fall with head slam on hardwood floors drop today.

He has also learned to try and spit out whatever medicine remains in his mouth after we syringe it in him. Seriously….I hate it! We literally have to sit on top of him and force his mouth open just to get it in.

Days like today are hard when we are working so hard to manage the seizures and he still needs medicine and he still needs meals for tomorrow. My mom was able to come down and spend some time with me this afternoon since Chuck has school and or work late everynight this week.

Asking for prayer for strength and answers to get us back to days without seizures.

As of 11 p.m. Monday night Gabriel is 1 week with no seizures! Yippee!

The week was filled with family time and lots of fun. He went to his first neuro psychologist visit Monday morning. It was a lot of questions for Mommy and Daddy and some fun play type activities for Gabriel. Chuck and I will go back in a couple weeks to learn the ideas and purposed plan of action.

Chuck was working on hospital bills last night when he discovered that some very expensive genetic tests our doctors ordered were denied by insurance as unnecessary. Ugh! So today, we will start making calls and “figuring it out”. These tests could help better determine what type of doose we are dealing with…specifically if he has a chance to out grow this or not. Our understanding was that Gabriels treatment plan could vary based on these results.

We have been waiting on these results for months now and it was frustrating to find out that the test results are clearly available and we haven’t been notified. AND then on top of it the frustration and financial implications of possibly having to pay the bill are overwhelming. God has been with us and directed every step in his journey so far, and at this moment I am seeking to stay calm and trust it will all work.

I keep thinking of the 90’s pop song… I get knocked down, but I get up again, you’re never gonna keep me down. (Sorry to anyone who knows this song and now has it stuck in their head). We have learned another important lesson to get everything checked and run through insurance first. Annoying and time consuming but clearly necessary.

In the long run we really are O.K….truly in the grand scheme of things we are good. While in the waiting room yesterday I found myself remembering to be thankful for how well Gabriel is doing. My guess would be that a handful of parents waiting with me watched Gabriel playing and wished their child was able to play that well, speak that much, be that healthy.

Today we are asking for prayer for
1. Continued seizure freedom
2. A quick and complete resolution of this blood test bill.

I have been able to add a few new things to Gabriel’s food repertoire now that he is officially staying on the 4:1 ratio.  We have had Hits, Misses and Epic Fails along the way. I am still learning that he is not emotionally invested in my cooking experiments, nor is it his job to respond to the food I am presenting in a way to make me happy.

HIT:DONUTS!

We have added donuts. Right now he only likes then fresh. So he doesn’t get them a lot because when he is ready to eat, he wants to eat NOW! I like them because they look like real food, I can put flavor in them (chocolate, cherry, vanilla) and it looks like a lot of food.  Most of his meals barely fill a saucer.

MISS: Full cream “Ice cream”

We tried another full cream “ice cream” with splenda and vanilla. He took about 3 bites to make Papa happy but that was it. I am going to try another version with whole milk and cream. It will have to be a snack, instead a meal addition that allows him more “normal” food.  I have recipes for things like “grilled cheese” and “chicken nuggets” that I really want to try but I have to get him to eat the cream to make that possible. I keep reminding myself that I am the only one obsessed with getting him to eat cream and try to let it go.

EPIC FAIL: Cheese crackers (Try #1)

Doesn’t that look appetizing? These black blobs where butter, cheddar cheese, coconut flour and oil.  I found a 3.5:1 cheese cracker recipe on a blog and tried to tweak it to 4:1.  The worst part was that these 7 quarter sized blobs took almost 45 to create. SIGH!

COOKING SUCCESS:  Cheese crackers (Try #2)

Woo! Hoo! They are not burned blobs! They may not be totally beautiful. But in the land of Keto Cooking anything that stays together with 800 pounds of oil is a success.  After a little research I substituted 1/2 of the butter for mayo, removed the oil and cut the cooking time in 1/2. The recipe still needs some tweaking but they looked and smelled good. I took a bite of one crumb and they were good too..kind of buttery, sweet with a cheesy flavor! I could not wait for Gabriel to try them!

FAIL:Eating of cheese cracker

Not sure if you can tell from the picture but he has a  “what on earth are you trying to get me to eat” look on his face.   Hindsight is telling me I made several mistakes in presenting this new food.

1. I gave it to him first thing this morning. (He likes routine..breakfast is either eggs, waffle, or peanut butter and fruit)
2. I told him it was cheese crackers. I am pretty sure he thought I was going to give him his old favorite Cheez-its.
3. I tried to feed it to him instead of letting him hold it himself. They are very crumbly and I knew he would not like that.

Once I had tried to feed him it was all over. He started crying and flinging his arms. We ended up with lots of cracker pieces.  This caused him to cry harder and demand “Fix it! Fix it!” Sigh! The cracker pieces ended up on the kitchen table, we are going to try them again later.

SEIZURE UPDATE:

We continue to make progress on the seizure front. He is down to 1-3 grand mal seizures every 5 or 6 days. We are also getting a little heads up that they are coming. At least earlier this week, he had a really sleepy, out of it day before the seizure late that night.  The “big” goal in my mind right now in 0 seizures in 10 days. However, as I read back over my blog posts from the last months I am amazed at how far we have come on the new 4:1 ratio.

We haven’t seen the drop seizures, where he bobs his head or he just falls down in several weeks 🙂  Yippee! Chuck and I hate all of his seizures but the drop seizures are so unnerving because they are so quick, and he falls hard and fast with them. I don’t think we have had to wear his helmet in several weeks! We have been hitting the pool A LOT lately and I know that would not have been the case a month ago!

The bible verse speaking to me lately is from Zephaniah

“The Lord your God with you, He is mighty to save. He take great delight in you. He will rejoice over you with singing”