Luke update

I haven’t given a Luke update in a while, and after this picture on the left popped up in my time hop I thought today was fitting. The picture on the left was taken in the waiting room of a pre-op appointment. Luke was scheduled to have probably the scariest surgery he has had the next day. We were finally physically and mentally prepared for it (as much as we could be). It was a Monday. For whatever reason, the Friday before Luke randomly had a fever. It went away on its own and he didn’t have any other symptoms. Because of that, at this appointment they said his surgery would have to be postponed because of the risk of being sick and under anesthesia. I was devastated. I just wanted to get it over with and move on. In my mind, this surgery was “the end” of the most difficult times. I know now that was not the case at all, but I was frustrated and sad and all kinds of emotions. That is pretty much how I have felt every time we’ve gone/left the hospital the countless times over the last few years. Just being there, the smell of the soap in the bathrooms, the beeping of machines, walking past the ER or PICU...just the whole atmosphere could almost immediately send me into a panic attack. Obviously not every time we went was to that extent, but it was almost never pleasant.

Fast forward to the picture on the right. Now. We don’t make many unplanned trips to the hospital. We go at least every 3 months for follow ups, testing, etc. Sometimes more, but not the frequency it has been in the past. I’m just rambling now...you get the idea.

Last week I took Luke to the hospital for one of his regular 3 month neurology and keto check ups. For the first time, I left the hospital not feeling defeated, sad, and overwhelmed. (Just throwing this out there - this almost never had anything to do with the doctors or other care providers...they have all been amazing and we are so incredibly thankful for each of them.) I was optimistic and just overall happy with how things are going with him. This could be a combination of accepting our reality (which I’m not sure ever really fully happens) and actually just being happy how things are.

October 1 marked one year since Luke had been hospitalized to start the keto diet for seizures. To be honest I was not very optimistic about this, but we decided to give it a try before going through another surgery. It was a hard week. Luke was sick, I was overwhelmed, it was just hard. During that time he had an extended EEG. I think it ended up being about 36 hours by the time he completely ripped off all the leads. That EEG showed he was having about 6-9 clusters of seizures a day and it was all over his brain. Not just one side or one spot, his entire brain.

About 3 months ago (close to a year of following a very strict and precise keto diet) Luke had another EEG done. The seizure activity/spikes where there is a higher chance of seizures or where your brain just isn’t working correctly was predominantly on the right side. (If you’re in the medical field and I’m using the wrong terminology - sorry lol. This is how I understand it) The left side of his brain had almost no abnormal activity 🤯!! The right side of his brain was significantly better as well with fewer spikes. His brain waves were overall more organized. If you didn’t read all that or I’m not making any sense, just know that is a freakin miracle. My baby went from not being able to sit or roll or communicate with us to where he’s at now. Also did I mention he hasn’t had a seizure since December 31 of last year?!! (With the exception of some weird “episodes” I will call them while weaning off of a seizure medication) We are coming up on a YEAR of no seizures. PRAISE THE LORD!

He’s had an amazing week at therapy. He’s using his left hand more and more each day. Hes starting to imitate sounds and has been adding more words to his vocabulary. He can tell us when he’s hungry or thirsty or wants more. He’s getting so strong and working on standing and bearing weight through both his arms and his legs. He is rolling all over the place getting into all kinds of things he isn’t supposed to be in. I am constantly reminding myself that it is a blessing and a miracle that he is doing all this. Especially when I’m taking away shoes that he has somehow gotten ahold of and chewed on, or retrieving tiny pieces of paper from his mouth and all over the floor lol.

Last week I was watching a video of a mom who is currently going through a heartbreaking situation with her child. She talked about “the middle” and how it just plain sucks. It does. It got me thinking about how long I’ve felt like we’ve been in the middle, waiting to come out on the other side, wondering if I ever would. Our pastor did a sermon this past year about “the middle” and how God is working in the middle. In the hardest parts, when you feel like giving up, like nothing is ever going to be okay again, God is working! You may not feel it, you might even resist it but He’s there and He’s working. For me, it is almost impossible to see the miracles and good things happening until I’m past “the middle”.

For the first time in almost 3 years I don’t feel like I’m in the middle. I am hopeful. I am thankful. I feel like I can breathe. (Even though I’m kiiiiinda just waiting for the next thing to happen) I heard a song recently that says “So I'm thankful for the scars, 'Cause without them I wouldn't know Your heart And I know they'll always tell of who You are So forever I am thankful for the scars” I am thankful for the trials and the hard times we’ve been through. I hate that my son has had to endure what he has had to endure. I hate watching him struggle to learn simple things. I hate the guilt and feelings my husband has had to work so hard through and overcome (More on that in his upcoming book ;) ). I hate that I know so much “medical” stuff like it’s a normal thing. But it has made me a stronger mom, wife, and person in general. It has made our little family even closer. It has made us cherish the time we have together more than we did before this. Did I feel that way when everything was happening? Nope. Definitely not. Sometimes I still have days I don’t. But I can look back now and see all the different ways God has worked through Luke and his story to bring us where we are today. I continue to pray that Luke’s story will give hope to others.

I think I was just going to update you all that have prayed for Luke and followed his story on his EEG and seizures. But it turned into this and I’m not even sure if it makes any sense at all. Basically my point is we have all come a long way. Especially this guy. My steroid puffy cheeked baby to my super energetic, smart, curious, strong, almost toddler. It’s only been two years but it feels like so much longer. I am so proud of him and I know I will continue having positive and exciting Luke updates for you all as we continue on this journey.