So I've been MIA for a while now. Justin's been traveling, my course load is out of control busy, and Kamden is keeping me busy being his usual 11 year old self. I'm not complaining...things are pretty good around here. We finally have some answers and a game plan with Botox for Kendall, Diabetes control, and her bladder issues, but I will post more on that when I have a clear head!
In the mean time, here's a video about Kendall's time-out situation at school. I wouldn't say she's defiant...but this past week at the hospital with our nurse, I watched her have a big ol' 4 year old fit. I got down on her level to reason with her and try to stop her angry behavior, but failed miserably! I've had tons of training in education and child development...but I've never been very good at it with my own kids. I'm a softy. And with Kendall, it's even worse. It's becoming more obvious to me that I'm an enabler, and that's not OK. It will only cause her problems in the long run. I've never been a spanker, but saw very positive responses in Kamden when he was put in time out. So, I mentioned it to her teacher yesterday afternoon and she explained to me their method at school. Later that night, I talked with Kendall about it, and here's how it went:
( I had to shut off the camera because I was laughing so hard....again...I suck at this with my own kids.)
Kendall and Daddy attended their first Daddy/Daughter dance on Friday night at Kendall's school. They had a great time fast dancing, slow dancing, and eating cookies. Kendall got a pretty rose, and she's all smiles when you bring up the evening.
They must have had a blast. And I can't wait to see the professional pictures! Apparently Kendall's teacher was able to do the "mommy" thing and get her to smile in pictures. I'm sure they're beautiful.
While Kendall and Justin were at their outing, Kamden attended his monthly SibShop hosted by our hospital. This month they went to an indoor water park and ate pizza. When I walked him in to the center, I was amazed at how many friends he has in that group. He calls them his "friends who get it." I'm so grateful he's developing relationships with other kids who endure similar situations at home with their siblings. And I'm thankful for the child life specialists who make the support group so fun.
Kendall did go to the ER for croup last Tuesday, and we cancelled our video EEG. We caught the croup early enough to avoid a racemic epi treatment and just give her a steroid. Her sugars were over 300 all day Wednesday, but she was back to herself by Thursday morning. Her little body is getting stronger.
My sweet boy did end up testing for his black belt on Saturday. It was five long hours of intense physical and mental challenges. Kamden impressed me so much by his will to keep going even though he was pushed to his limits.
When it came to the three on one sparring, the part we were most concerned about, he kicked some serious butt!
I have to admit, the sparring was a little more than I could handle. I'm not usually a yeller at sporting events, but when someone is attacking your baby, it brings out a side of you that you didn't know existed. My adrenaline was rushing too for the entire five hours.
Kamden broke his one inch pine boards like a champ. (see the video below!) And received his black belt that night at the Black Belt Extravaganza.
This was a day he will surely remember forever, and I will too!
Kendall was there to support her brother too, and did amazingly well at the assembly. She only started screaming in the middle when startled by some loud noises and clapping. She's making progress in that area for sure.
Her procedure went very well last week. The anesthesiologist was amazing. She didn't need a breathing tube, so we were out of there in less than four hours without much recovery time.
The news we got regarding the procedure itself was good. She doesn't have a neurogenic bladder or reflux, and her voiding was relatively normal. However; they did notice a lot of urine was stored in her bladder right off the bat. (I thought he said 1000cc's but Justin seems to think that's not possible) Anyway, our urologist called Friday to confirm that we are still not in the clear. She has UTI's from storing urine, and we will need to begin catheterizing her daily. Not every four hours, and we don't need to get a vesicostomy, but she will require catheterizing once a day. So, not the best news, but also not the worst. Justin and I will just add that skill to the long list of medical skills we never wanted to learn!
Thanks for all your comments and support last week. We made it through relatively unscathed....well, with the exception of my two fever blisters and stye in my eye. The kids are doing well!
BY THE WAY... my father just pointed out to me that Kamden is a lefty! He practiced each board break with his left foot, and forgot to tell them he needed to use his left foot! He did great with his right, but would have gotten it with his left the first time....just so ya know.
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 :)