Whew! Oh my goodness….did I really get to type that title? 2 months! We have made it 2 months without a seizure! Relief is an understatement. It has been so nice to allow him some independence and feel a bit of freedom ourselves. I don’t feel like I have to drop whatever I am doing if he wants to go play in another room. I can finish up the whatever I am doing and let him go play.
We are so relieved that the seizures are at bay for now, but there is still a long way to go. He is not eating as much as he should, side effect of medication. He sleeps way too much and on very strange schedules. He can literally sleep through a noisy preschool classroom because he is so exhausted.

We talked to his doctor and for now Gabriel’s weight is fine, so we will talk with the dieticians for some ideas and stay the course. The wait and see portions of the doose journey are some of the hardest. It has proven fruitful in the past and at other times we have kicked ourselves for waiting too long to act. Please pray for discernment for us as we negotiate these new waters, pray also that Gabriel will eat. When he does eat and have energy he is doing so well. Especially interacting and having conversations. He runs shorts distances from one spot to another again. It is so hard to see my 4 year running with the motor control of a young toddler but then I remember…he’s running again and smiling the whole way.

My biggest joy right now is through all of this he is happy, he knows he is loved and he is closely attached to his Daddy and I. At the end of the day that is good news….and 2 months without seizures makes it even better. Hoping that I get to write a 3 month post in a few weeks.

(Insert deep male movie trailer voice)
In a world where Bar B Q causes real danger…….

Last night we met family at a local BBQ restaurant. My cousin and her husband were in town and it was a great time to catch up. We rarely go out to eat as a family, so this was a real treat. I was a little concerned about how Gabriel would behave. This was his first time in a sit down and order restaurant in over a year. He did remarkably well considering all of the amazing foods being passed back and forth. He made a salt, pepper and seasoning concoction on this plate, dipped his pizza and chocolate hearts in it (EEEWWW!) and chomped them down. At one point I caught his arm reaching across the table to dip his pizza in the BBQ sauce. Thankfully I caught it and told him that wasn’t safe for his body and took the pizza away…but that moment was scary. The instant of oh no! what if we mess this seizure free streak up.

It is so nice not being on edge all the time, but the last few days he has not been eating enough and doesn’t have enough energy. He has tripped over things and fallen down several times because his reflexes are so slow. His sleeping patterns are bonkers. He is still sleeping a lot during the day but then is awake in the evening and into the night. It seems like we are constantly adjusting to his changing physical, mental and emotional needs. Logically I don’t want my 4 year old awake and playing at 11:00 p.m. at night but if his body has not let him be a kid that day, I try to sit down with him, and enjoy the moment.

A friend shared this amazing song about parenting special needs kids and I had to pass it along!
https://www.youtube.com/watch?v=B9RZ4V34WhY

Sometimes someone else just says it perfectly! I am excited to share this post by fellow doose Mom, Laurie
http://ourjourneywithdoose.blogspot.com

We passed the year mark of beginning the ketogenic diet! I can hardly believe we’ve made it through a whole year! What a year it has been.

Gabriel has been a super star through the entire process! We literally yanked every food he had ever known and liked from his life and replaced it with tiny amounts of strange stuff.

This is one of my favorite photos from very early in the diet but it makes me sad too. He knew how much we wanted him to be happy and like his food, so he would smile big for pictures.  He loved getting to eat his strawberries and “Gabriel’s Special Candy” when we were on 3:1 ratio.  I miss those bright eyes!

Looking back over the last year is crazy. Those first few weeks were pure hell, he hated the food, wouldn’t drink the cream, he wasn’t getting enough calories, so he had no energy and he was still having tons of seizures.   We have stuck to the diet with a tenacity I didn’t know I had.  We could not have had the success we have had without hours of help from our parents, pizza angels and cooking night friends!

Here is a shot of the latest cooking night rock stars, showing off a small portion of our measuring bounty!

Gabriel has handled the limitations of the diet like a total hero. At first, we were very careful not to eat anything in front of him that he couldn’t have.  Now we eat almost anything. I don’t keep chips in the house because he really eye balls them.  Several times since Christmas he has exhibited a desire for me to eat food he can’t have.   He lives vicariously through me. Most recently he insists that I eat a snack bag of fish cookies at his physical therapists office.  Every week he grabs a bag and brings it over for me to eat, then pulls them the cookies out of the bag one at a time and feeds them to me. What a sweet boy!

I am trying to find ways to involve him in the cooking. He wants to help so bad. I have always enjoying cooking, especially baking and imagined how much fun it would be to involve my kids in the cooking process.  The exact nature of keto makes that so hard.  Earlier this week he was happy with his own scale, a bottle of cream and salt and pepper shakers. He created his own “dip” for his pancakes.

We are still at 0 seizures for over a month! YIPPEE!  We wish we knew what was keeping them away…it is the new meds alone? or the meds and diet combo?  Chuck and I have both had several moments wondering if the diet is still necessary, however it did lower the number of  gran mal seizures greatly and eliminated the drop seizures…so will keep calm and carry on, delighted in every day our boy gets a chance to learn, grow and experience life seizure free.

We have some big news in our little world. Gabriel is beginning to willingly take his medicine! After over a year of having to fight him 3 times a day, literally having to wrap him up in blankets and force him mouth open, he is coming around. Now he will sit on our lap or occasionally even stand up to take his medicine. We still have to pry his mouth open most of the time but once it is open, he will say Ahhh and finish the medicine.Medicine time when I was home alone was especially traumatizing for Gabriel and I. I am so unbelieveably proud of our little guy for this milestone!
This is HUGE HUGE HUGE wonderful news!

He continues to be doing very well in all areas of life right now. Still 0 seizures! He is interacting more and more. His coordination and motor strengths are slowly but surely coming back. He is regaining skills we took for granted a year ago….like carrying a plate with food on it and not letting all the food slide off the plate. He is asking “Why” questions again. 🙂 Many of the developmental milestones he was hitting a year ago before the seizures started are coming back from hiatus! We had his IEP (individualized education plan) meeting a couple weeks ago and I got a little teared up looking around at the team of amazing people working with him. He is currently getting speech,physically and occupational therapies. All of them are helping our boy live into his full self. Beautiful and amazing to see!

Our whole family got to go to St. Louis this weekend 🙂 First time in over a year!
The majority of my relatives on both sides of my family live there and 4 or more visit per year have been the norm for my entire life.

The big adventure of the trip was the minivan having transmission problems 1 1/2 hours into the 4 hour drive. Thankfully, my sister and her family where traveling the same road and came to rescue us. 6 people, 2 giant carseats and all the luggage crammed into a CRV made for some interesting seating arrangements 🙂 —The kids were quite comfortable at least.

It was great to see family and watch Gabriel playing with my cousins kids.Brought back lots of memories of my cousins and I playing in the same houses, with some of the same toys 😉  It was kind of a bummer that Gabriel spent most of the time sleeping and didn’t spend as much time getting to play with the little kid cousins on Sunday. The pneumonia seems to be taking a good amount of time to get over. Hopefully we continue on our good health path and get to visit again soon when he has normal kid energy.

We took him in for blood tests yesterday because of the fevers and the extreme sleepiness (he missed school Monday and Tuesday). The lab tech drawing his blood kept double checking that we were really running as many tests as she had listed……we were running our standing order along with 3 or 4 other things…double checking everything. Got a call back today that everything was “NORMAL”. Happy Sigh! “NORMAL” is a beautiful, beautiful word in our world!

and even better than normal……still 0 seizures….over a month! HAPPY DANCE! HAPPY DANCE! (yes readers…I expect you to stand up and do the happy dance)

“And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us” Romans 5:5 This has long been one of my favorite bible verses. It is one that I memorized years ago and often pops into my head at the exact right moment.

I have not had the same affinity for the preceding verses: ” Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope.” Suffering and perseverance have not been things I look forward to, much less want to rejoice in!

The last year has brought about a change in my heart, mind and soul about suffering. While I do not look forward to future sufferings, I know that through them God blesses, strengthens, and encourages me. Without a doubt my character has been transformed; I am more grateful, patient, in the moment, and less worried than I ever have been before.

The disease we are fighting has required us to be marathon runners with no training. Yet, I feel we are winning the race. The encouragement we get from the people in our lives, the perfect song on the radio; Gabriel suddenly deciding to eat a new food; all spur us on to our unknown finish line.

Things are going VERY well in our RACE right now! It is so exciting to me to announce on EASTER Sunday….the day that HOPE truly born……..

GABRIEL had 0 seizures all month!

HOPE personified for me. We are pretty sure the new medication we added is giving us the relief we have been looking for! I think the longest stretch we had before this was over the summer and we made it 10ish days?  The last couple weeks have been tough on his body ,as he fought pneumonia and adjustment his new medication, but his energy levels are on the rise and he is very interactive!

I’ve been a little reluctant to openly share how many days we haven’t had seizures because it seems everytime we start getting excited and sharing days that the next day or 2—WHAM! They are back. While, I know that is still possible I am HOPEful that the seizures will remain under control.

Giving us added HOPE for Gabriel’s future, is the blog of another Doose child, who was able to come off the diet recently and remain seizure free! YIPPEE! We are so excited for this family and their openness and honesty in sharing their story. We hope that our story will be an inspiration to others too.

Happy Easter! May God bless you with His Promises of HOPE for Eternity!

It has been a crazy few days at our house. I feel a little more road tested in life’s bumps than I did a week ago, but we are still standing 🙂 Most importantly we are still in double digit days of 0 seizures!

On Saturday evening, we noticed water on the floor in front of our kitchen sink…..fast forward to Sunday…the disposal had to be replaced, the hardwood kitchen floors literally have waves from the disposal water that leaked under them, the prodry guy said the damage was so bad it wasn’t worth drying out. SIGH! Thankfully, insurance is going to cover the repair costs. We met with a contractor this morning and things are moving forward. I am the most thankful that it wasn’t a situation where they had to rip up the floor and immediately start working. We have at least a few days to prepare for the work to come.

The same evening we took Gabriel to Afterhours Urgent care because he was spiking a fever for the 3rd night in a row, coughing a lot and had slept all day. After, a very careful and thorough exam, as well as, xrays it was determined he may or may not have pneumonia. We promised to follow up with our primary care doctor the next day and avoided antibiotics! The next day G was officially diagnosed with viral pneumonia. No antiobiotics 🙂 We are currently letting it run it’s course. Gabriel is tough beyond tough, but the last couple days have been hard on him. He is saying things like “I’m hurting”, “I don’t feel good” and “I’m sick “. Yesterday he was awake and playing for a couple hours 🙂

Needless to say it was a couple of very stressful days. I always said I would NEVER do a kitchen remodel. HA..Jokes on me. While not a remodel, I will be living through having a torn up, non functioning kitchen. Hopefully it will go quickly. The couple days we were waiting to hear if insurance would cover the costs were particularly overwhelming to me. The thought of construction going on in the house, keep up on the keto diet without a kitchen and the possible extra financial burden felt suffocating. I am usually fairly calm in the crisis and can redirect my thinking to optimistic thoughts (after YEARS and YEARS of intentional practice!), Not this time!

So I was especially thankful for 2 huge things God sent my way! (I am including these in hopes they might encourage someone else or spur someone reading to encourage someone they know in a personal way)

1. An amazing and encouraging phone call from a dear friend from high school! She had some great ideas and was such an encouragement to me. Thank you friend for taking the time to reach out!

2. The Song “Praise You in the Storm” by Casting Crowns. A friend posted this song on my facebook wall months ago and it has become one of my favorites when the storms come. It was particularly meaningful this go round because I really didn’t know IF the pneumonia was going to need an antibiotic or WHAT the kitchen fix would or would not entail. I hope it gives encouragement, hope or peace to someone else.

Gabriel turned 4 last week 🙂 I remember joking “we managed keep him alive” at his first and second birthdays. Last year, he spent his 3rd birthday in the hospital, the first of the 4 stays that will forever mark BEFORE and AFTER in our lives. This year, I feel like we can truly celebrate not only keeping him alive for a year but, fighting for every good moment and the highest quality of life.

Part of fight has included the recent addition of yet another medication. So far it is controlling seizures. We are officially in the double digits of days without seizures. 🙂 His energy levels are pretty low, lots of sleeping, but he is having lots of good moments too 😉 This is the first time we’ve hit double digits since last April, when we thought we had beat them with a 3rd med and would not have to do the ketogenic diet.

Today, we had his birthday party. We kept is just family this year. He got tons of fun new things to play with. The winning present this year was his scooter. He rode it all over the house, he used it transport all of his others presents as well 🙂

He may be on the ketogenic diet but Nonna was determined that he would still have a birthday cake and took on the task.

Thank you Pinterest for the construction site idea 🙂

Gabriel had a grand time just playing with his cake. As far as he was concerned he needed to “work” on his construction site!

Great birthday. Going to bed with smiles, as well as hopes and prayers for an amazing 4th Year!

I was hoping to have Chuck write this blog because he is better at all the technical stuff but the man is BUSY! So here goes from my perspective!
First, it was a very good visit. Everything ran on time and the staff did not seem frenzied or rushed like they have in the past 🙂

Gabriel has gained almost 4 pounds since his hospital stay in January, which would have been a concern expect he had lost a couple pounds while sick before entering the hospital and he has grown 1 1/2 inches since late Dec. (explains why all of his shoes and pants suddenly didn’t fit!)

Everytime we go to a visit I have a secret hope that “THE” treatment will have been discovered and that we will leave with definative answers. While that did not happen, we do have a plan moving forward. Sometime next week we will be adding one more medication. It is one that we asked about after reading other families having success with it. When we asked about it this summer, we had got a solid NO. Several months later and still having seizures the doctor said he was willing to write a prescription for it. This particular drug can react badly with one of the other drugs Gabriel is on, so we will be doing additional blood tests every 2 weeks to make sure all of organs and other body systems are doing well with both. The chances of this additional drug giving long term help are tiny like .5% but we are planning on moving at with it. The hope is it will give us a few good weeks while we prepare for Gabriel to recieve something called a vagus nerve stimulator (VNS).

The VNS is a small device, sometimes called “pacemaker for the brain”, that is surgical implanted in the chest, with a wire that runs to the vagal nerve (in the neck). It is then programed to send very low impulses to the brain. (There is a lot more involved but I am still learning and don’t want to get the wrong information out there). The VNS comes with a magnet that can be used to slow down or stop seizures once they start. Our hope is the VNS will help especially with the periods of stacked small seizures that we keep seeing every month. The Doctor said the ketogenic diet and the vns have been shown to work well together.

It is pretty crazy and amazing stuff. I was very skeptical and nervous about possible surgery before the visit but not so much now. The Doctor gave us a thorough pros and cons list then gave us the choice to move forward or not. The doctor also said just because we start the process of consults and scheduling the surgery doesn’t mean we can’t put it on hold if we decide.

Hope this makes sense….didn’t get much sleep last night so my brain is a little more fried than usual.

How you can be praying for us:
1. Rest…it is a busy time of the semester for Chuck and Gabriel has had several middle of the night seizures this week.
2. Discernment in decision making , specifically in regards to surgery