Two days after Christmas we visited our Endocrine Clinic. Due to everything else going on in our lives, I was behind on her labs. They ordered another Hemoglobin A1C. I've been dreading this one, so I didn't hesitate tagging it on to Kendall's upcoming surgery.
On January 2 Kendall went in for her long awaited Intraocular Lens Implant (IOL) surgery in her left eye. The anestehesiologist was amazing. The best yet. Instead of intubating her completely, she did an LMA (a tube that doesn't go as far in to irritate the esophagus. Kendall tolerated the eye drops (and by tolerating, I mean she only screamed and arched the entire time.) They left her insulin pump in for the 2 hour surgery. (huge shock...since it isn't hospital approved....but I won't go in to that!) She had labs drawn, her lens implanted, an exam done on her right eye, and a new g-button placed. Because her airway wasn't irritated, they didn't have to giver her any steroids. Her sugar was great and we were on our way home 7 hours later. All in all it was an easy day.
When we got home she was cranky. Her sugars started to rise because of the stress of surgery, she ran small ketones, but we quickly whipped things back in to shape. We thought she would sleep. She didn't. She screamed all night. All night.
The next morning Kamden and I took Kendall in for her bladder ultrasound before her surgery follow up across town. She's finished her latest antibiotic for her UTI, and we already had this appointment scheduled. (Nothing like hitting your family deductible before the first week in January.) After the ultrasound, we headed down the hall to be worked in with our Urologist. They cathed her...and it just kept coming and coming. She filled two sample cups with urine. Clearly she has been retaining urine. The ultrasound showed the same. Her bladder was distended. There was a lot of debris in it, (likely bacteria) and her kidneys were also dilated. Her HA1C was higher than it's ever been. Not good. Long story short, we made the decision to proceed with the Vesicostomy surgery.
A year ago, this was my worst nightmare. Sometimes things get put into perspective for you though. UTI's are miserable. Cathing everyday is horrible too. Something has to happen. She deserves to not be in pain.
I've recently discovered that sometimes well-meaning teachers classify children and their cognitive abilities on whether or not they are potty trained. I've heard things like "well...this child is in junior high, and not even potty trained." Or believing they should work on life skills such as potty training before they have more academic goals...We recently ran into an issue where Kendall wasn't going to be allowed to attend a community activity because she isn't potty trained. (Obviously, I didn't let that go, and she was able to attend...despite the receptionist's attempt to quote "state law"...laughable) My point is, the vesicostomy will make it impossible for Kendall to ever be potty trained. She'll always have on a diaper and she'll always be trickling out urine. I have to be OK with that. And I will. It just may take some time.
Her surgery is scheduled for January 30, but there is a chance that it may have to be postponed until mid February. We are going to do her right eye and botox at the same time. Killing three birds with one stone. I have a few weeks to let it sink in.
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 :)