Life has been crazy busy as usual around our house.
Last weekend we attended the Grand Opening for the Randol Mill No Barriers Playground. It was a beautiful morning for visiting with our friends, playing, swinging, merry-go-rounding, and see-sawing. We also cheered on our friend as he coached a Miracle League game. After that, Kendall spent the night with her Nonnie and Poppy and Justin, Kamden, and I had a wonderful afternoon sitting by the pool and going out to dinner. But, of course, it wasn't at all the same without Kendall :) Justin and I would have enjoyed a full night of sleep if it weren't for our Lab Chloe knocking over the smoker and carrying our brisket for Mother's Day lunch across the yard.
Kendall has had a great week at school so far. She loves going. Her afternoon naps are phasing out, and she is wiped out after dinner. I like that added benefit of school!
The latest broken record I'm hearing (or, rather, reading....on District Letterhead attached to an e-mail and cc'ing each and every decision maker in the District) is that our school District is required to provide Kendall a Free and Appropriate Public Education. (no freaking kidding?!?!) Somehow that translates to some people that the only option is to provide Kendall with traveling nurses and not use an agency the District is contracted with. Whatever. I know I heard (and others in our meeting heard) her say there was a District Policy that reads it isn't allowed. Through a lot of research, I am now armed with a plethora of examples and information that will be attached to my grievance. I spoke with 2 board members off the record who think this is worth looking into. Everyone is concerned with budgets right now. I'm not afraid to keep on until I have decent continuity of care for Kendall. IF the District could offer that, there wouldn't be a problem.
I learned from here on out, I WILL be bringing a tape recorder to meetings, since some people have selective memories. And apparently our District has a CYA mentality, so I guess I'll join in. Game on.
I also learned how frustrating it is to watch someone talk out of both sides of their mouths. If accepting private related services and equipment puts FAPE in jeopardy...how is it OK to do it for 45 days with our nurses, and bring the iPad we own for communication evaluations, and floor chairs so Kendall can participate, and her stander (which we haven't brought yet, but plan to) In an ideal world, we would not worry so much about the laws, and focus more on what is best for Kendall, her teachers, and the rest of the classroom. But I get that we don't live in an ideal world...and our District is way better than most.
I learned this week that when I get back into Education (like when the stars align with Kendall's life and I finish my Master's Program...hopefully in the next 3 years) I will not treat parents condescendingly. I will not use the "learned" dialogue. You know, where you repeat their concerns by saying "what I hear you saying is..." then turn it around and say something completely different. And I definitely won't comment on how young they look.
Ugh..sorry for another rant. I promise I'm finished going public with these things...
Today we went to the Neurologist. He went over her EEG again and said how good it looked. He said there is definitely much more "good" brain activity than there was before. He doesn't think we need to change any meds or get back on the Ketogenic Diet. Thank goodness. He was concerned about the increase in her UTI's, and since she was on the Ketogenic Diet for so long, has ordered another Renal Ultrasound. I'm sure everything will be fine.
So that's all. Still working on taking it one day at a time :)
We are very open about our journey with Kendall. We're happy to answer any questions, and welcome all your comments! The one thing we don't want is to be isolated from our friends and family. I've been that person who thinks it is easier to just ignore a child with special needs and their family. I've feared hearing their story. I've been guilty of looking through a child with special needs. I've also thought and said "how on earth do you deal everyday?" Although it certainly isn't easy, we are a normal family...celebrating all the milestones our daughter hits (and maybe cheering a little louder in the process!) Let me tell you...it's been a long road with many bumps but the love and support we receive daily is what keeps us truckin'! Click here for the full story on our precious baby girl Kendall Ann, or scroll down for the quick recap! Thanks for visiting!
more music please!
clearly before keto diet and diabetes
Kendall Ann has blessed our lives in so many ways. She is truly a gift from God and has proven herself to be a fighter from the beginning. She was born with many neurological and optical abnormalities, which we now know is due to a stroke in utero...probably due to her Factor V Leiden mutation and two copies of the MTHFR gene (1-14-09).Oh, and NOW she has Type 1 Diabetes (8-19-09) And NOW (12-16-10) she has problems with her Mitochondria ... and NOW (2-11-13) a neurogenic bladder resulting in a vesicostomy. Of course there is apossibility of a Mitochondrial Disorder, and a possibility CDLK5 caused all the problems and Mito secondary...but we will never know, because we've decided no more testing! When she was born she came right home...no NICU stay...and we had no idea anything was wrong! She has undergone numerous hospital stays and a number of surgeries, but through it all, she has maintained a smile that wins the hearts of everyone who meets her. Please join us in our journey of life with a special little girl full of spunk and personality who happens to have multiple disabilities.
I like to say I'm a party- girl-turned-career-girl-turned-stay-at-home-mom to a son who's gifted and talented, and a daughter with special needs. My hubby levels me out, and I'm a lucky girl to have found him.(I kissed a lot of frogs!)
I love my life and all it's chaos. My family and close knit group of friends help me get through every day! I'm getting better accepting that God's plan isn't always my plan...and alcohol sometimes helps :)