These past couple weeks have been very eventful, and again I find myself overwhelmed with all of the things I need to blog about!
Kendall turns three in 2 weeks. We are still waiting to schedule her first ARD. I received a draft of her FIE (Full and Individual Evaluation) on Friday. There was no mention of a nursing plan or a seizure plan. Those things are still being worked out. (We're not off to a very good start with nursing. The director of nursing with our school district didn't return two of my attempts to contact him...then apparently "has no record" of my attempts) The "nurse" they were hoping to have with Kendall is employed by the school district. She's not an LVN or an RN, she's a certified nursing assistant. That's not going to work with Kendall's severe CP, epilepsy, Type One Diabetes, and feeding and drinking challenges. They may be willing to take chances with her health, but I am not. A little aspiration or small seizure is a big deal to us, and an error with her insulin pump could result in death. Again, not a risk I'm willing to take. This has to be figured out before we agree to go any further.
I want Kendall in PPCD. I know she will benefit greatly from the social interaction. I know the teachers and therapists at the school can offer an expertise in areas that I can not. I have not changed my mind in the least about having her educated in our public school district.
I went through every last word in her FIE. There weren't any surprises. At first, I was a little upset about her Ophthalmologist's report. It was stated that "Kendall is legally blind, which indicates an acuity of 20/200 or worse in the better eye with correction." But as I read on, I also noticed that while she has number of eye issues, her functional vision is still promising.
In regards to the AT evaluation for augmentative communication, they say this " the District will introduce a variety of low tech and high tech devices in order to collect data as to the student's response to the augmentative communication devices. In an effort to work cooperatively with the parent (THAT WOULD BE ME!!) the District may choose to include the parent provided device that the child is currently using in these trials. However, the District reserves the right to determine whether the device will or will not be included in the evaluation process. Additionally, the District assumes no liability for the parent provided device." Fair Enough. I'll pick my battles.
No matter how you look at this, it hurts your heart a little. I'm realistic about where she is in her development, but reading on paper that your three year old's adaptive skills are at 10 months, cognitive at 12 months, physical at 3 months, communication at 19 months, and personal and social at 14 months, never gets easy.
Moving on...We had our second demo of a power chair on Friday. I'm sure this deserves it's own post, so I will just post a picture. Kendall gets it. She knows it will make her move. She watched her brother fly around in a power chair too. She went from an absolute fit about sitting in it, to calming down and allowing us to move it for her, to actually touching the joystick. This will surely be a work in progress, but we have such a creative team of people working with her, I'm sure we will eventually figure it all out. We are months and months away of this coming to fruition, but when it does, I will have to figure out a lot of things. (things that cost lots and lots of money...like widening doorways, and adapting our van.) So there's not a huge hurry just yet!
I want desperately for Kendall to have independent movement. I want her playing on the playground with other Kindergartner's. I want her chasing the dogs and running away from me at the grocery store. Above all else, I just want her to enjoy her life.
After a long eventful day on Friday, I laid her down for a nap. When I did, I went into the kitchen. While on the phone, I heard her scream. I ran into my room and she wasn't in the bed. She was on the floor. In the corner of the room. She had scootched feet first off the bed, hit the chair next to my bed, and then the hard wood floor. I was hysterical. I was screaming, Kamden was screaming, and thankfully my dad was here and kept a level head. She miraculously was OK, but I definitely learned my lesson about leaving her on a raised surface by herself without something to block her fall! I just have to add that this isn't the first time she's fallen. Justin was responsible for the first time, which was in the kitchen and resulted in a trip to the emergency room...but that's really not my story to share on a public blog! So, I won't. Just sayin'. Fortunately for me, he was way more understanding to this fall than I was when he let her fall! Either way...she won't be falling any more!!!
And finally, poor Kendall has had a lot of seizures. This past week she had 4 in one week. That's too many. We've increased her Keppra dose, and also have a VEEG scheduled for the 20th. Hopefully the increased Keppra will do the trick. Hopefully we won't have to go back on the Ketogenic Diet.
Her wean is going great. Tomorrow I will cut her tube feeds out and we will just give water and milk boluses and 3 oral feeds and 2 snacks. Wish us luck!
1 week ago