I had a wonderful trip with my friend. It was very relaxing and great to spend time together. We ate a ton of bad food and shopped til our feet hurt. We laughed as we reminisced of our crazy college days, and how drastically both of our lives have changed since then. Of course, I was anxious to get home. It was just another reminder how blessed I am to have such a beautiful and loving family to come home to. I've decided that I thrive on the craziness of my dogs, kids, and husband. My home is my place. My pj's are my favorite clothes. I like to eat marshmallow creme on saltine crackers standing over the sink while watching Kendall discover something new. I missed her smell. And Kamden's constant talking and loud guitar playing. I slept better last night with Kendall kicking me in the ribs and scootching around in my bed than I did all weekend. (yes, she still sleeps in our bed every night. that will be addressed in a later post!)
We recently received the mobile base for our Squiggles stander. When the tray is off, Kendall is beginning to roll the wheels on her own. She stands really well in the stander and enjoys being upright. Now, she can roll around the whole house, the front and back yard, and up and down the street if she wants to. With the tray on, we can push her or lock the wheels. With it off, she has the freedom to move. I think with enough practice she will get the hang of it in no time (while also getting the benefits of weight bearing in a great position).
This morning we had Kendall's Evaluation with the school district. Really, there were no surprises...just a lot of people in one room. We had PT, OT, Speech, Diagnostician, our ECI Coordinator, Nursing Director, our beloved Vision Team, my dad, Justin, Kendall, and me. Her IEP/ARD will be in about one month. There were a lot of things to sign, and a lot of questions to answer. I'm not certain why I had to gather all her medical files together, as they didn't look at them at all. My greatest concern is, and has always been, making sure Kendall's needs are met physically. We need qualified people administering medication, feeds, and insulin. In my opinion, that is a nurse (especially since Kendall is a non-verbal, insulin pump dependent Diabetic, with hard to recognize seizures.) A nurse who knows her. But I was encouraged to talk with the school nurse and not given any real answers. I called my nursing agency right after and they put my mind at ease that it will all work out. They even offered to attend Kendall's ARD with me, which I intend to take them up on.
We are still waiting for the Nephrology Nurse to call us with Kendall's echo results and latest lab results. I will post an update on those when they are received...
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 :)