Thursday, August 31, 2017

BIC Gelocity pens

I love to I was excited to try these new BIC...Gelocity.
Sure, gel pens are more for kids...when you think about it...with all the colors 
and such...well...I am here to tell you...they are for ADULTS! 
Holy cow...I love to write...I spent all evening writing out those medical forms
 and school forms for 5 of the 7 kids of mine...5 times...well, you get it...its 
a lot of paperwork. I am usually tired by the 3rd paper...not with these babies!
 I love the colors and how easy the flow on the paper...without any glopping mess!
 The thickness of them makes them a dream to hold without any hand cramps! OMG!!! 
A pen perfected! Now...If I can get my kids to do their homework using them!

Thursday, August 17, 2017

Prayers and thoughts for our Kenster

I've been trying to figure out just the right words to say as I type out this blog post.
...and between my anxiety and reality, I am lost...

Kenny has been amazing...simply A.MAZ.ING. He loved going to Camp Cheerful day camp this summer...he made tons of friends and was busy, busy, busy daily. Coming home was another issue. lol. He started up with meltdowns in the car as soon as we pulled out of the camp driveway. Not horrible ones, but ones that can drive a mom up a wall...I fluffed it off to being over stimulated all day at camp. His meltdowns are getting just a little bit more frequent. And as any parent knows, trying to stay calm, cool and collected is hard to do when your child is screaming like a crazy, hitting walls & windows, stripping down to nothing at times, and just inconsolable. We know he is on the spectrum, but we are in the process of getting the actual diagnosis...which takes forever...his appt is not until January...yes, the waiting list is forever.
We are also dealing with this lovely state of Ohio and how they have transitioned kids on straight medicaid (because of chronic illness and handicap) to a managed care plan. We are now struggling with having to change certain specialists, make sure he is able to get his meds (which they feel that generic brand is just as good...and it really isn't), tube supplies and diaper service. On top of having to go through many channels to be able to get approved for certain tests and procedures...where as straight medicaid, we and his doctors were able to order something and it happen. So...we now wait and hope that his waiver comes through...which is highly unlikely. He will age out before that happens. I have had many fights with many people about the health care and coverage of kids with medical issues...chronic.medical.issues...but this is a whole other post topic.
This brings me to the events leading up to today. Over the summer, Kenny went back to his audiologist for his yearly hearing testing and to put an order in for his new hearing aids...since he lost one and broke was time to replace them.It wasn't the audiologist that has been with him since birth, but one that was filling in for her. After the testing, she mentioned to me that his hearing is worse. That the left is far worse than previously and that she would let his audiologist know., maybe she tested him wrong. Maybe because she was a new person in his testing, that she didnt know him and the way he operated...I that point, I was hopeful...I mean...keeping positive is what I have reprogrammed my brain into thinking...I have to!

We then had his comprehensive care appt. a few days later. This is the doctor appt. where all of his specialists see him. It is about a 3 hour appointment...and it is well worth the time. Each doctor comes in and then they all work together to come up with a game plan. Well, his neurologist was his very upbeat, carefree self...doesn't make a whole lot of worry for anyone...which is wonderful for me as a mom....again...keeping up with a positive attitude is key. I wasn't too worried when he mentioned that he recommends PT/OT to start up again. That Kenny has tight and loose muscles. I mentioned to him that I was slightly concerned with his left side. His muscles tend to be a little tighter but yet weeker on that side. He tried to open his fingers on the left, and noticed that the thumb and forefinger was very tight, but the wrist was loose. His ability to follow moving directions were a little off...for instance, a jumping jack...yeah, he cant do those (Que in mommy guilt complex #1). He can input what someone wants from him but to actually do output, is very difficult...he also uses his tongue when he is very involved with a task, which is another big red flag.

Last week, his new hearing aids came in. He picked out fun colors...well...actually, his favorite colors of purple, orange and red. His audiologist wanted to retest him...for her own benefit...just to make sure the results from the last test was right.
Unfortunately...they were.
His left ear is almost at the profound loss level and his right ear is severe. This raises flags for us because his hearing loss has not changed since he was a few years old. My child went all summer without hearing aids...unable to hear. (Que in mommy guilt complex #2)! No wonder why he was such a crab. The audiologist voiced her concern to me about it and that she was going to let his doctors (more so, his neurologist) know. At this point, start panic mode...mommy style.
So, this is where we are at. Tomorrow...Friday the 18th. We will be seeing Kenny's Neurologist. There are concerns from everyone that 1)his muscle tone is off. 2)his eyes are crossing again. 3)his hearing is far worse. 4)he is more agitated than usual (a lot more meltdowns) 5)all of those breakthrough seizures which we attributed to the use of generic brands, might not be from that at all.
 ...all of this leads everyone to feel that his brain issues are starting to progress. This is what we did NOT WANT TO HAPPEN.

So please keep him in your thoughts and prayers. I could you a prayer or two myself...because...I cant fathom the thought of burying another child...I would rather die before doing that again...its.that.bad.