“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