Well...this is how my morning went:
(an excerpt from my Facebook post this morning)
3 kids took showers...3 loads of clothes washed, a kid staying home (crying) because her eczema is really bad and covering her face, arms and legs. Two going in late because of Kenny's neurology appt. (and Gina didn't want to go to school alone). My eye is swollen for some strange reason...and oh...mine and my daughter Morgan's glasses are held together by tape and super glue (must get new ones). ...and we're supposed to be driving right now so they all wont be late for school...and here I sit, on my computer, because they are STILL NOT READY!
Fast forward to now:
It hasn't gotten any better...I repeat, the day has NOT gotten any better! I vowed to think positive, do positive and start with a clean slate for everything...today has just deflated my positive perception on life!
We took Kenny in to his neurologist, showed him the video (seen below)
...because I wasn't sure he got my e-mail the day after it happened with the video included. He never sent me an email or even a phone call back, so I wanted to follow up with him and to get his opinion on what is going on and if there is anything else we need to do to be proactive in his treatments.
The response we got was something I could have gotten from my neighbor! "Eh...I'm not totally convinced it even WAS a seizure he had".
Ummmm...then...wtf was it then? Why does he do this several times a year, and its happening more and more frequently? Why is his head all the way to the right with his eyes darting back and forth and going way off into the right side of his head? If this is not a focal seizure, then what the eff is going on with my son? He cant communicate during these, he looks through people not at them and he is tired after these "episodes"! I want to know what is going on!!!
He did up his dose of his seizure meds, because..you know...these really aren't seizures, so lets just give him more meds...because, he DIDNT have a seizure! Sure, that's something I want to do. I want to give my kid more meds for something that he isn't having...wow.
Keep in mind, this doctor has been his neurologist since he was 2.5. He didnt remember that he has a feeding tube, that he doesnt say too many words
(ma, da, bus, more, backpack...and a few more words...)
So, when I asked him what is going on with him then? He tell me...he's just kenny. WTF!!!!!
I think need a new doc for him...what do you think? If there is anyone out there that has any recommendations for a good pediatric neurologist, please email me or send me a comment. We are in the Cleveland area.
He was supposed to have an MRI a few years ago to check his brain. When I asked about one, they said they're not giving him one just yet. Why? is it because...well, "he is who he is and has what he has"? I dont know about any other special needs parent, but I am not going to sit around and wait for my son to die without doing everything I can and know exactly what is going on!!!!
I am feeling defeated today. I felt like it was a waste of time. A place that used to really care for my son gets him in and out of there so fast...he was supposed to get his flu shot today...and well, they hurried us out of there that now, I have to take him tomorrow morning for it.
To top off my day...I had the school call me and tell me that Kenny's G-tube was pulled on by another student. Honestly...its fine. if it came out, which it didn't...whatever. This is why I keep an extra one there at school! Kids are kids, I'm surprised it didn't happen sooner. Anyhow, they didn't quite know what to do. It wasn't out, but it was much more lose than it was before. I asked if she knew how to see if the balloon inside was still full of water or popped...and she didn't know how to check!!! OMG!!! So, without further instructions that I knew I'd get frustrated in trying to tell her how to do it...I just told her to use the gauze and tape, and tape it to his tummy so it wont come out...and I'll check it when he comes home!
(and this is what he came home looking like)...and now...I am writing this blog getting ready to take my Kayleigh to the doc for her extreme eczema that is covering her...after waiting on hold with her peds for over 30 minutes!
My I superglued my glasses together...which will look just lovely at my Nephews wedding on Saturday...eh...it will just go with my dark circles under my eyes (along with the swelling of them for no known reason, my teeth that are taking over my face (the Gibbs have nothing on me), pre-menopausal weight gain and my brown and grey hair...
#ShootMeNow #NeedMoreZoloft #NotAgingVeryGracefully #TryingToLetGoAndLetGodButHeBlockedMeOnFBToo!
Happy Monday to you all!!!