What’s going on…

I have sorely neglected this blog. Parents of special needs kids and all kids understand how time can get away from you. I had intentions of posting about our latest findings with occupational therapy, Henry’s great progress lately in his speech, his first merry go round ride (his OT would understand why this is such a huge deal:), his new school, and our emotional trip to the Kaufman Clinic a couple of weeks ago. But there seems to be always something stopping me from catching you up on all of this. Usually it’s pure mental and physical exhaustion, but lately we’ve had a few more wrenches thrown into the mix.

Henry started having seizures. One in Feb, one in March, and last Friday he had 4 within a couple of hours and was admitted to the Children’s Hospital. I will go back at some point and fill in the details of what happened because I feel like it could be relevant to other parents out there, but for right now I have to give the short story. Henry had an MRI last week and it came back abnormal. They aren’t sure (grrr) but it’s either a brain tumor or a cortical dysplasia on the left temporal lobe of his brain. They believe it’s the origin of his seizures. Interestingly enough, it’s also in the speech center of his brain but they can’t say his speech and sensory challenges are caused by this. We are reeling. I alternate between being numb and going through the motions, to complete fear and devastation with uncontrollable crying. I feel once we start to get a handle on one thing, something else is thrown in our lap. The ironic and awful tidbit in this huge pot of well, let’s be honest, total crap, is that the cortical dysplasia can lead to regression in language amongst other things. Speech is obviously not the main issue in this situation, but I have to admit that part hit me like a ton of bricks.

So I’m just hanging on…trying to educate myself about the newest elephant in the room and how we are going to beat this thing and not let it destroy us. I wish I felt stronger mentally and physically before meeting this challenge, but I need to find the strength somehow for Henry. I’m just… I’m still not sure I understand how this all happened and how it’s possible. We will figure it out. We will!  In the meantime, the blog will go to the back burner once again. But I do hope to catch up one day and fill in the blanks of the last six months.. because they were monumental in both good and bad ways. I appreciate you all reading, and I hope your little ones are doing well ~ Linda

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4 thoughts on “What’s going on…

  1. Tears for you … so sorry for this “other” thing to worry about now. I really can’t even imagine what you must be going through and thanks so much for sharing. I’m sure you’re just in survival mode these days, but try to keep us posted. Writing is so therapeutic. Hang in there! :)

  2. Linda, I have no idea how I missed this post of yours. I am so very sorry for everything you’re going through right now. I’m amazed by your strength. I will be praying for you and for Henry. I hope you’ll keep us updated as you learn more about what exactly is going on… I can imagine that the doctors not being sure is extremely tough. Not knowing is the worst. Hang in there. You are such a fantastic mom.

  3. Thanks ladies for the kind words and support… I’ll keep you posted on how everything progresses. Not feeling very strong these days, but trying :)

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