After enjoying a weekend of sunshine and warm weather, we have been whisked back to reality. School was cancelled, so Kamden's home entertaining Kendall. We're all in our pj's and prepared to hunker down for about 3 days of freezing temperatures, sleet, and snow.
Texas pretty much shuts down when there's even a trace of ice on the bridges. Thankfully, Justin is in town and has set up his office from home today. He seems to think he's going to be able to get some work done...good luck.
Kendall is still fighting her cough and cold symptoms. Her croup finally resolved, but she still sounds pretty rattly. She's slowly but surely getting back into her normal routine.
We are working on Kendall's sensory processing issues. She has a very sensitive startle and will scream and yank her hair or pull off her glasses as soon as she feels uncomfortable. Up until last week, the vacuum and blender were completely off limits around her. (We seriously made smoothies in the bathroom with the door closed.) New environments,or places where young children are talking or crying, seem to be stressful for her too. We HAVE to get this under wraps for obvious reasons. I've recently learned if we talk to her about the noise or place before it catches her off guard, she is able to adapt. But it is definitely a work in progress and being addressed by all of our therapists.
Another recent concern is her puffy feet. We've always chalked it up to her not walking, but it has started looking a lot more like excess fluid. We already have a Nephrology appointment on Friday, due to some high blood pressure readings, so hopefully we can get some clear answers.
Always a guessing game around here. But today, I plan to enjoy the snow day with the same enthusiasm Kamden had when he woke up to a sea of white. Hot chocolate, Netflix, and a fire are in my near future. Life is good.
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 :)