Can I just tell you, I hate seizures? They really have to stop sometime soon. They were really bad today. Kendall has been sleeping better, but when she wakes up or is eating, she almost always has more. I can't handle it. They make me absolutely crazy. Seriously, it either makes or breaks my day. When they are mild, she does great. She eats, laughs, holds her head up, plays, looks around. When they are bad, it takes it all out of her. I mean completely wipes her out. We increase her Vigabatrin tomorrow for the last time. This is it. Please keep her in your prayers this week.
Our nutritionist was here today. Not surprising, Kendall has lost weight. We figured she would with the surgery. Fortunately she had gained weight a few weeks ago. She also grew a half an inch! Oh, and her head circumference grew too. We're now at 16.5 inches! Still making a curve...just waaaayyyy below normal... ( I don't know why, but I obsess over her head size, every time we get a new measurement I run home to plot it!)
Justin and I met with the attorney today to set up the Special Needs Trust and change our will. It is really difficult to think about how your kids will survive without you. Especially Kendall. We put a lot of thought into plans for her. But both of us feel like we can breathe a sigh of relief that we've taken care of it. It was definitely money well spent.
Justin's traveling this week again, so Kamden will be the man of the house. Good thing he knows Karate. (he asked me to write that)
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 :)