Fighting For Our Little Fighter

[hope4nathaniel-blog]

Hoping for the Impossible

During almost every conversation I have with our neurologist about Nathaniel's seizure treatment she will say to me "because Nathaniel's seizures are extremely difficult to control, we aren't ever expecting him to be seizure free. We just trying to control his seizures as much as possible." Because I'm so used to hearing this from our neuro and because seizures have become such a normal part of our lives, I have pretty much stopped imagining what life might be like for Nathaniel if he were to ever be seizure free. I've come to accept that the doctors think that Nathaniel will never be seizure free, even with medication. But sometimes in the late hours of the night when I'm alone with my thoughts, I let my heart hope for the impossible. That's exactly what happened last night at around 3:30 a.m.. I was leaning on the hospital bed rubbing Nathaniel's back, listening to the beep of monitors while he transitioned back and forth between sleep and crying. In my exhaustion, I felt the spark of hope. The first small hope I had was "what if the Keto diet actually works?" Next came "What if, for once, he's one of the small percentage of kids that this treatment actually causes to be completely seizure free? How would that improve his development? Might he actually be crawling by Christmas? How would it improve his fine motor skills? Could he more easily learn to feed himself? What would his personality be like if he's not constantly interrupted by seizures all day? How would his vision improve?" Imagining Nathaniel seizure free with improved development was beautiful. Dreaming some new dreams for his future encouraged me, even just for a little while. It's hard to hope for the impossible, especially when all the experts keep telling you that it can't be done. Even though I know that nothing is impossible for God and that miracles happen every day, I also know that miracles don't happen to everyone. But for today, I'm going to choose hope. I'm going to believe that this treatment is going to work. I'm going to have faith. I decided to focus on this verse over the next couple of weeks as we go through the steps for brain surgery and as we continue with Keto: "I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit." - Romans 15:13 I don't always have the strength to keep hope, but I MUST keep fighting and hoping for Nathaniel. So instead of giving up (like I often feel like doing) I'm going to look to my true source of hope and I'm going to pray to be filled with peace and joy. I'm going to keeping fighting for our fighter.

[hope4nathaniel-blog]

Starting The Keto Diet

I'm so anxious about this week. Nathaniel is (hopefully) being admitted tomorrow to start the Ketogenic diet. I have such mixed feelings. I'm hopeful this will work, but at the same time, I also feel like we are wasting our time and this is going to be an epic fail like everything else we have tried. Let me start of by explaining where we are at with the treatment of Nathaniel's seizures. Currently, he still has 3 different types of seizures. His Myoclonic seizures are being controlled by a medication, his Infantile Spasm and focal seizures are less intense with two other medications he is taking but they are not completely controlled. In fact, his seizures have slowly intensified over the last few months. Right now our biggest fear is that his Infantile Spasms will remain untreatable and turn into Epileptic Spasms. That means he will continue to have 10 to 20 seizures a day for the rest of his life and there is nothing we can do about it. We are currently on our 4th medication. Each time you start a new epileptic medication your chances for it to be effective drop...and so does our hope of controlling Nathaniel's seizures. We have a 20% chance of the Keto diet controlling 40% of Nathaniel's seizures. That doesn't sound like very good odds, but ultimately, we don't have a choice because it just might work. If it does control 40% of his seizures he will go from having 10 to 15 seizures a day to 4 to 6 a day - which is a big improvement. The ketogenic diet is a special high-fat diet that is used for difficult to treat seizures. Heavy cream, butter and vegetable oils provide the necessary fat. The diet also completely eliminates sweets such as candy, cookies, and desserts. Other carbohydrate rich foods such as bread, potatoes, rice, cereals, and pasta are not allowed on the diet. All foods must be carefully prepared and weighed on a gram scale. Each meal must be eaten in its entirety for the diet to be most effective. Sounds like every toddler's dream, right? Nope. I didn't think so either. Nathaniel is going to be on a 4:1 ratio to start. That means that he has to eat 4xs as much fat as he does carbs or protein. You might be thinking, "how hard can this be? Lots of people don't let their kids eat sugar or bad food". But this is different. I have to weigh every single thing he eats. He has to eat every single this I feed him. If we mess up anything on this diet or he eats the wrong food, he can get sick and/or it won't work and he will continue to have seizures. That's ALOT of pressure on us as parents. The next stress I have is about side effects. Nathaniel has to be monitored closely in the hospital because many kids become dehydrated, develop kidney stones or have vomiting or diarrhea. Please pray that Nathaniel takes to the diet well and doesn't have any of these side effects. Please, please, please, keep us in your prayers this week. Being stuck living in a hospital for 4 days is never easy - especially when your kiddo is not really "sick". We are struggling with questioning if this is all worth it. Most importantly, please pray that this works, that Nathaniel doesn't have any reactions and that Scott and I get the hang of the diet pretty easily. After this we get a few days at home before we go back to DC on Sunday so that Nathaniel can have an MRI on Monday. This will be his 3rd MRI, but hopefully they will get a good clear shot. He is still being evaluated for brain surgery. I'll give more detail on that soon. Last but not least, I know that someone is going to read this and wonder if we have tried medical marijuana. The answer to that is no because it's not legal in VA for children. I have researched it tirelessly and it's not as easy as most people think to get for your child. Each state has different laws and finding a reliable doctor to prescribe and monitor its use is tough. Also, it will only have about a 20% chance of working which is similar to any other treatment we try. The media loves to make it sound like its a quick fix for seizures and I'm sure for some people it is, but they were most likely one of the 20% who it worked for. I'm going to do a separate blog on this subject later, but I thought I would mention this now since I usually get 2 or 3 questions about it after I do a Nathaniel update 😊 Thank you all for your prayers and support this week. It truly means so much to our little family. I'll keep everyone updated on how the week goes.