Our once cute nursery now looks like a physical therapy center! The first day Kendall got her "little room" (the white thing with the resonance board...its supposed to give her a place to play where she can feel her movements and discover toys....she doesn't love it as much as I thought she would) Justin said "most little girls have a dollhouse...Kendall gets a science experiment."
We have accumulated a lot of things from our wonderful VI and Orientation and Mobility teachers through the school district! ECI has recently dropped off a big Special Tomato chair, that Kendall is starting to get used to. But her favorite toys continue to be her baby doll that sneezes, cries, says momma, and wears Kendall's old glasses (pictured to the right) as well as Rody. The donkey looking thing that I ordered from a Special Needs catalog and paid way too much for. This thing is amazing. It serves as a riding toy, encourages tummy time, and Kendall loves to grab his ears. I also think we've bought pretty much every toy that lights up and makes noise. (Kamden thinks the closer you put something to her face, the more likely she is to notice it!)
So while her room doesn't exactly look like it would fit in a Pottery Barn catalog, it serves its purpose. We often have all four of us, and the dogs, in there watching Kendall and laughing on the floor together. Kamden loves to get down on the mat and read to Kendall too. Nonna works in there with her every single day for at least 45 minutes listening to the CD we made her on her Hello Kitty CD player! Grandad is pictured above filling in while Nonna's out!
Who would have thought this would end up being my favorite room in the house?
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 :)