I just want to simplify everything. I feel like my life is so cluttered and chaotic. I just want to simplify everything.
Including my blog. So bear with me...I'm determined to figure out the blog stuff on my own. Through lots of trial and error. (obviously)
I didn't just clean my office/playroom. I completely gutted it. It felt great throwing papers away and cleaning out files.
Justin thinks I'm going through some sort of "decorating crisis". I don't think its that. I'm just in this house ALL THE TIME. I'm sick of looking at the same things. I want a brighter, cleaner, uncluttered space. So that's what I'm going to do...if it takes me the rest of the year (which is extremely likely thanks to my highmaintenance dogs and children!).
Kendall's 24 hour EEG has been postponed. I was planning to cancel due to her being sick and me being exhausted, but instead the hospital called and said they were at capacity! There are lots of flu and respiratory things going on right now, so I'd just assume stay at home....and simplify some more :)
It's been 1 week and 4 days since Kendall first got sick. In that time, our nurse was sick, Kamden got sick again...and I got sick for the first time in over 3 years! (I blame no sleep, no running, and somebody drinking the rest of my orange juice).
It's rough taking care of sick kids on your own. Kendall's hives and breathing problems stress me out big. Justin was away in Montana on business, and things have been turned upside down in my house. I hate to complain...but this past week has been HELL. Thankfully, my parents are close and came to my rescue numerous times this week. I would be in big trouble without them. My dad is and always has been the best at helping out. He totes Kamden to school and karate, walks our crazy dogs, and runs to the pharmacy for me (a dreaded task in January!)
But we do have some good news:
1. Poppy and his dog Sadie are resting comfortably in their own home! He had a pace-maker placed on Monday morning, and they were able to pin-point the fall on his irregular heart beat. The skull fracture and bleeds were caused by his head hitting the ground. Yikes! But his headache is doing better and no other surgery was required.
2. Kendall is saying "Daddy" now. Maybe not completely correctly, but she has the same sound and inflection in her voice each time, so I'm certain it's daddy.
3. Our nursing hours have been resolved...so extra help is on the horizon!
4. Spending extra time at home and canceling therapies has given me time to get my office organized. The kitchen drawers are next.
5. Kendall's mobile base for her Squiggles Stander has been approved by insurance and will arrive in a week or so!
6. I have taken two quizzes amidst all this chaos and am averaging an A in school so far!
7. I switched pharmacies for Kendall AGAIN...I did this all over the phone and didn't yell once.
8. We've hit our family insurance deductible for the rest of the year!!!
This morning is hopefully the beginning of things getting back to normal around here. The last week has been an absolute whirlwind.
Last Saturday, Kamden was diagnosed with strep. And croup. And 10 year old attitude. He stayed home from school and that resulted in all of us in our pj's for a few days and a normal routine thrown out the window. He's much better now. I think in the past week, he's played at least 40 hours of video games and finished 5 long books. He tests for his Brown Belt in Karate next week and I swear the little boy that I've known is way too quickly turning into a young man. In good ways and challenging ones.
On Tuesday I received a call from Justin that his father (our beloved Poppy) was in the hospital. Apparently he collapsed at the dental office. When he fell he hit his head pretty badly, resulting in a fractured skull and two bleeds. They first took him by ambulance to a hospital in Denton, but then he was care flighted to a hospital in Plano. While in the ICU, they kept a close watch on him to make sure there wasn't any more bleeding. So far so good, but they are now trying to find out if the aneurysm caused the fall or the fall caused the bleeds. Either way, he's lucky he wasn't in the car, or at home by himself. There may be some issues with his heart, but they must resolve the brain stuff first. He's in a lot of pain, is very nauseous, but was up moving around yesterday. Please keep both him and Nonnie in your prayers. Hospital stays are exhausting and waiting for answers is unnerving.
Meanwhile...Justin had a trip to North Dakota, and within minutes of him returning home, Kendall woke up with a croupy cough. Justin stayed home and held down the fort with Kamden and the dogs (we are taking good care of Sadie, Nonnie and Poppy's dog until they return home) Thankfully, my dad went with us to the hospital. Kendall was swabbed for strep and flu. Both came back negative (but I'm pretty sure the culture will show strep by today.) Same old song and dance at the hospital. RacemicEpi treatments and steroids, and everybody freaking out about her insulin. (Ok, just me) The pump made it so much easier. I was able to increase her basal rate by 20% to cover the steroid for 24 hours with the touch of a button. It worked out really well. We're home now, and she sounds just as bad this morning as she did on Wednesday night. So....we may be heading back today. She's satting at 94%...but sounds REALLY miserable.
Things are settling down here. The dogs have only had one fight. Sadie (a Jack Russel) and Chloe (our lab) had a pretty good spat about food. Fur was shed and yelps were heard from miles away, but we successfully broke it up. While separating the two of them, I had to laugh when I returned to the kitchen to see Kendall smiling and Cooper who stayed out of the whole fight finishing the bowl of food! I swear we live in a zoo.
I've given up on sleep and am surviving on coffee and adrenaline this week...
We had a great New Year's eve with our friends, and a super New Year's day with our family. Justin has FINALLY :) gone back to work, Kamden's gone back to school, Christmas decorations are put away, and my house has resumed it's normal peacefulness between 12-1 when Kendall takes her nap. The only sound to be heard is my snoring dog. It is beautiful!
I've decided not to make any new year resolutions this year. I'm starting my classes in a week and that should keep me extremely busy. I'm sure I'll be treading water for a little bit as things fall into place, but I seem to do best under pressure. I decided to knock out Braille first (which has a reputation of being incredibly hard) along with a survey of exceptionalities (which shouldn't be too foreign thanks to all of my blogging friends!)
Kendall's doing really well. Her insulin pump has made life so much easier. We've only had a few unexpected blows of her needle placement, but other than that it's been smooth sailing. Both Justin and I have gotten quite good at replacing the site quickly. I don't have to read the instructions anymore...so that's a good thing. Kendall's button still looks pretty good. We have had the Mini One Non-balloon for about 8 months now, without any leaking or problems. She has a little granulation tissue developing I think because she's put on so much weight. So a replacement button might be in her near future. She has lots of Dr. appointments coming up, will be starting Therapeutic Riding soon, and continues to nod yes and no, wave hello and goodbye, knows her colors, body parts, gives kisses when asked, flip a light switch on and off when held up and asked, and my favorite...if you ask her to pretend like she's mad she fists her hands, holds them out in front of her, grits her teeth and shakes her head. She'll also do happy with a big smile and sad by putting her forehead on your shoulder. I love that little girl! She's so stinking cute!!
So, that's all for my new year's reap! Hopefully 2011 will be uneventful in my family!
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 :)