Ho Hum. Kendall had a great first day of school. I was told the second day was even better.
She didn't have a fit until music therapy at the very end of the day. This is somewhat surprising to me since she does love music. She did very, very well when we had one on one music therapy last year. However; in the past two months or so, she has developed a huge fear of the guitar. Kamden has to practice in his room with the door closed. Even then she can hear it and freaks out. She also doesn't like groups of people singing or loud instruments...one of the big reasons we haven't been to church!
It's hard to tell what is going to set her off. Somedays she's fine and surprises us, but other days a dog bark will send her into a downward spiral.
She had a runny nose on Tuesday but no fever, so we sent her to school. When I picked her up she had just had her fit, and had snot running down her poor little face. She cried the whole way to the car, but calmed down as we drove to pick up her brother.
Wednesday she woke up and her sugars were off the charts high, so we kept her home. I've been blaming the nose thing on allergies and praying it won't go to her chest. But the fact that her sugars were high made me think she could be fighting something.
Last night she woke up a bunch, and had a ginormous seizure this morning. It was different than normal. Lots of twitching from the right side and big jerks from the left. Very unnerving. I was too tired to video it, and just laid there holding her after her emergency meds until it subsided...45 minutes later. I HATE SEIZURES. Her last one was exactly one week ago.
She's back to herself this morning. I'm planning to follow her lead about school today. It is field day, so our plan was to just drop in for a little while and let her visit with her friends. (I really like the way that sounds!)
So, she's ruined her perfect attendance already! By the way, this is also another reason I think we should be able to use our nursing agency...that way when Kendall's out sick (which will likely be a lot) the district wouldn't have to pay someone to be there the whole week! Just saying.
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 :)