Kendall recovered from the traumatic experience. And the same procedure under anesthesia is scheduled for this Thursday. I'm actually sick about it. We have to do it the facility where the Dr.'s office is. He doesn't apparently have any privileges at any of the children's hospitals. Imagine that. Our ophthalmologist's office even got involved trying to schedule with them so she would only have to go under anesthesia once. He wasn't having it. I'm not surprised that he doesn't play well with others...
I'm going to put her in God's hands and go with the flow. But it sure does make me nervous not to have a pre-op or pediatric anesthesiologist. They have no idea what they're in for.
I may sound slightly calloused, but really what the hell am I supposed to do? This is our only option. Everyone I have talked to says the same thing. This guy is the worst with kids and parents, but world renowned. Whatever. I just can't wait for him to try and make my 6'5" husband upset. Justin's very slow to anger....but the one time I did see him angry, it was because somebody messed with his little girl.
In other news, Kendall has a video EEG scheduled next week, and an examination under anesthesia for her eyes the week after that.
And believe it or not, she's been sleeping with that darn wedge every night for at least six hours. Baby steps.
Kamden may or may not be testing for his black belt this weekend. He's worked his little butt off, but we won't know for sure until Friday night. He has to break boards in class on Thursday. I'm full of anxiety about all that too!
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 :)