kmart-23-blog

[kmart-23-blog]

Letters to you

Already a million things to get done today that roll through my mind as I draw your meds. Yesterday was a fair day with your seizures, I think you only got sick once. Sometimes the days really blend together. 

Yesterday was a big day with the time change and daddy leaving. After much consideration with all your specialist, Daddy got his old job back and were moving back to Atlanta! We’ve gotten the pre approval for a house already and what appears to be one picked out. With any luck, by the end of the week, we’ll have an offer in. Dad will be home on the weekends, don’t worry, Bear.

I’ve been emailing the realtor this morning, feeding you, washing dishes, soaking our humidifiers and all that other random stuff to tidy up. After your first feed this morning, your monitor took a crap finally and thank goodness for Grammy who was able to order us one from Walmart with 1-day shipping. (P.S. Walmart has 1-day shipping right now for $1.99. Wow)

I can’t wait to get the Atlanta again. Switching all the doctors is going to be hard and we have to refile for Katie-Beckett, your Medicaid got denied twice because apparently your diagnosis causes our case to be different and harder. You’re last neurologist appointment almost two weeks ago gave us frustrating results. We like him as a neurologist but I think he is overwhelmed. We’ve had many of CT Scans, MRI’s, EEG’s both short, 24 hour, and video. We’ve been to geneticists, all the blood work, and we still don’t know why. Currently, you're taking 5 seizure medications and we are still having breakthrough seizures, anywhere for 1-10 visual ones a day. That’s not including ones we don’t notices. Throughout all Bennie’s diagnosis (There are quite a few), the seizures are the hardest thing. He is non-verbal, non-mobile, sometimes the high-tone from the Cerebral Palsy is overwhelming, but he is mostly low-toned. The list goes on, but when he has a bad seizure and is so upset with how it made him feel he gets sick, it breaks my heart. Why can’t this be me?

He has been diagnosed with Focal Seizures, Generalized Seizures, and Infantile Spasms. Not to mention all the other terms associated with those like absence seizure, tonic-clonic, atonic. 

You’re neurologist appointment in August was difficult for me. He was new, out of Macon this time (Insurance is such a pain). He had not seen your MRI’s or EEG’s yet but could tell it was not good. He talked to us about tonic-clonic and infantile spasms even though we had heard it before, hearing in again confirms it. Also, this time he tells us about SUDEP (Sudden Unexpected Death in Epilepsy). Great, we just stopped worrying about SIDS. What would I even do if this happened? I can’t think about this, we are still learning so much as we go.

We saw the neurologist again on 10/26 after an EEG. There are still things unclear that I am emailing him about. Any news you get in there can be enough to not make you think straight. He told us that you have very treatment resistant seizures because you are still having A LOT of little seizures. I knew you had ones we didn’t notice due to their nature, and I thought you were having good days (Good days to me are “generally” ones where he has fewer than 5 seizures and maybe doesn’t get sick). Anyways, we don’t know what A LOT is. Also, he told us there is not a lot happening in the back lower quadrants. My mind starts to race, We’ve had 5 EEG’s, why am I just now hearing this? Is this new? What area of the brain is that? What are those functions back there? I have to do more research. With all those questions racing through my head, I forgot to as what that means, which would have answered most of those. 

But, we were able to tell him about Dad’s new job and that we would be leaving. He immediately asks if we plan to go back to our original neurologist? I think he’s overwhelmed with you.

And, of course you’re going back to your old neurologist! She is amazing. And the neurologist debacle is a story for another time as well. We will be using all the same doctors we originally started this whole thing with. They hold such a special place in my heart because this has been an emotional rollercoaster. 

Let me know what you think? Where can I improve? I readers to want more. I want them to know my little bear’s story.  I plan on doing this every few days and I am doing a different take on these blogs over on my Facebook page. Just a little different take and view on things.