Never Give Up

I found this quote the other day and it really resonated with me. It takes a lot of strength to take the jabs and punches of life and to keep going. My situation with Jameson is extreme but not unique. Everyone has something they're going through that can feel like it would just be easier to give up. The true strength within us all comes from what we do when life has knocked us down to our knees.

Little man has been home from the epilepsy unity at the hospital for about a week. He has not had a tonic - clonic seizure since the Saturday before we left. (Thank you God) We had a lot of anticipation for our trip to MN, and while I'll admit that we weren't completely happy with the answers we got, I also took on a new perspective. Jameson is a complex little boy and his medical issues are not black and white. He is the epitome of gray zones. He lives in a world of rare cases and the small percentage of patients that don't respond to treatments how they should. He has a severe and complicated form of epilepsy that is difficult to figure out or medicate. The best we all can do is put our faith in his team of doctors and let them guide us in this journey.

Seizures are terrifying, I won't lie. No one can ever get used to watching their child have a seizure and stop breathing....but you can learn to help them in whatever way you can. I have no control over Jameson's brain activity going haywire and into a seizure on a Saturday afternoon, but I can put him on his side and give him rescue medication so that the seizure stops. That is something I can control. And the rest will get easier with time. Just like when Jameson was a 7 lb, 5 week old little peanut and his feeding tube was surgically put into his stomach. I didn't know what a feeding tube was, let alone how I could handle taking care of it. Now, 2 years later, tube feedings are second nature. Same goes for his vesicostomy. When they told me he would need a hole in his bladder that goes straight through the skin and leaks out his abdomen, I cried. How could I do this? This isn't right and it's not fair. But like everything else, it becomes a part of life and no big deal. Seizures will be the next hurdle, and they too will become a part of life and we'll take it as it comes. I have faith that there is a plan for it all.

Thank you everyone for your continued prayers for Jameson and our whole family. While some days can be harder than others, we are always so grateful and proud to have such amazing friends and family that love and support little man in his journey. What a journey it is! :-)

One More Week

Oh how quickly the tides can change.

We have been enjoying nearly a month of happy and healthy little man. Very little daily twitching and more personality than we've seen in a long time. The last few days have been quite different. It's strange how quickly things can change. I wish I didn't have to write a blog like this, I hate being a downer. But if I'm honest, the last few days have pushed us further than we've ever been. Three major seizures since Thursday and two just in the last 24 hours.

One more week. One more week.

It's a mantra I keep repeating in my head. One more week until we go into the hospital in MN for Jameson's week long EEG. One more week to answers...treatments...hope. If we can just keep him stable for one more week, these doctors will figure it out. Give him what he needs. Give us a plan. A lifeboat.

I hope they're as good as we expect them to be. Putting your trust in a doctor you barely know to help improve your child's life in slightly terrifying. But what choice do we have? One more week.

Prayers for answers.

The Complexities of the Brain

I've been wanting to write a blog post about the complexities of Jameson's brain for a while but the timing was never quite right. I've recently been in touch with a new doctor at Johns Hopkins in Baltimore who is looking at little man's MRI scans to help diagnose him, and because of that I decided to dedicate a blog to helping people better understand the differences in Jameson's brain and why he is the way he is. (...or at least try)

Above are two MRI scans of the brain, one is a typical person's brain and one is Jameson. The largest section towards the top is the cerebeum, it is what people usually think of when they think of a brain. The area below that where the arrow is pointing is the cerebellum, it controls movement and coordination. The long thin section in the middle is the pons, it connects all the way down to the spinal cord. As you can see, the areas where the cerebellum and pons are for Jameson are much smaller than on the typical person's brain. The medical terminology for this is hypoplasia, meaning it never fully formed and is smaller than it should be. So because these structures are not fully formed and they are what helps the body coordinate movement, it explains a lot about why little man is still unable to control his body. Things like holding his head, sitting and walking are just going to be a lot more difficult for him since his brain will have to figure it out differently than a typical person would.

Why Jameson's brain formed this way is still a mystery. Most likely, it has to do with a larger genetic disorder that spontaneously happened when he was just a little tadpole. We may never know for sure, but the more scientists continue to research the complexities of the brain and how it works and grows, the closer we'll be to helping kids and adults with neurological disorders.

I hope that wasn't too much of a science lesson, feel free to ask questions if you ever have any. We appreciate everyone's love and support as we continue to learn about the many intricacies of little man. :-)