Merry Christmas! As redundant as it may seem, I'm going to share my Instagram pictures here on my blog. Believe it or not, there are a few people in my life that don't follow me on Insagram (AKA...my mother, and my mother and father in law!) My dad's a pretty hip 75 year old.
So here are a few of our-never-get-old-Christmas-tree-photo-ops over the past month!
Some of our festivities include: Kamden's winter recital (I'll post more on that later) Kamden's SibShops party at the hospital, and multiple lunches and dinners out where I forced my family to get in front of a tree!
We are enjoying a day of rest and being warm inside this Christmas Day while a Texas blizzard is happening outside! Our puppy dog Addie (now almost a year old) has been entertaining us as she chases snowflakes! And Cooper dog (almost 14 years old) couldn't be bothered.
We plan to continue this day of rest in preparation for the craziness of 8 appointments and a surgery for Kendall in the upcoming week...bleh!
About a year ago, I looked into Make-A-Wish for Kendall. Actually, I applied, then revoked my application because I really took issue in saying she had a life threatening illness. If you've read my blog for a while, you know I have a really big issue saying Kendall has a Mitochondrial Disease. I kind of buried my head in the sand with it. Anyway, after talking to family members and friends, I decided to apply again. Kendall was granted a wish...
Kendall's most favorite thing in the whole world is swimming. She feels free in the water, she gets to play with other kids, she gets a work out and it makes her muscles feel better. In Texas we have warm weather from May to October...but when it cools off, it really cools off. We never winterize our pool, but without a heater, it is definitely too cold to swim. So, Kendall's wish was for a hot tub to enjoy swimming when our pool is too cold.
Our Make-A-Wish team was incredible. They provided and installed the weekend after Thanksgiving (with crazy electrical work too) a beautiful Marquis Spa, pad, and cover. We have the Wish model. It fits five people comfortably. The temperature can be adjusted quickly and easily. It has two fountains and gives Kendall an entertaining light show when it's dark! We have it positioned right off our patio, and it really becoming part of our routine! In the evenings before bed, Kendall squeals when we talk about getting in the water.
Make-A-Wish also took it to another level! They came up with the idea to also provide us with a lift so we can get Kendall in the water and out as she gets bigger without any trouble. We haven't installed the lift yet, because we've talked about moving the hot tub closer to the pool so the lift can be used for both the pool and the hot tub.
I have loads of pictures on my desktop computer that I took with my good camera, but my poor desktop is in the shop, so these pictures on my phone are the only ones I have to share.
Clearly, Kendall loves it. And the rest of the family does too! We can make memories in our backyard together everyday!
So, a huge thank you to Make-A-Wish for such an amazing gift. We will surely get a lot of use out of it, and are forever grateful.
It has been a long time since I visited this blog.
A lot has happened.
Obviously work and daily responsibilities have taken over my free time to blog. We haven't had a free weekend in two months! Between Justin's travel, Kamden's extra curricular activities, and Kendall's health issues, my days have been packed! I'm not complaining. Things are good. But his morning at 5:15 (my usual time to get up) I walked out into the kitchen, made a cup of coffee, and turned on my computer. I'm elated that I have the next 16 days to relax, read, and enjoy my family.
I love having this blog to journal our daily happenings. I love reading other blogs too. I remember in our "early diagnosis days" watching blogs taper off when the kids were around four. For me, that's kind of when I stopped trying to find a reason for Kendall's disabilities and changed the way I think about things. Our family is at a point now where we look for ways to incorporate Kendall into the things we like to do, instead of making excuses why we can't do them. And for me, one of those things is work. I love working. I've always loved working. Yes, there is a lot of guilt involved some days when I leave and Kendall is sick, but when I merge onto the freeway, I get to be Jocalyn for the rest of the day instead of just Mom. And that has done wonders for me.
So, backing up to October....we finally took the plunge and remodeled our bathroom. Kendall weighs almost 40 pounds now. Her tone tends to kick in when I'm lifting her or carrying her. She thinks it's funny to kick her feet and wiggle. I don't think that's funny when she's wet. So we refinanced our house, and used that money to pay for our bathroom! Where there's a will, there's a way. Our Medically Dependent Children's Program money would have covered the bathroom previously, but they have had many, many cuts lately, and we just didn't want to mess with it.
We knocked out a linen closet to widen the doorway. We got rid of the tub, and added a new shower head with a handheld. To save money, we decided to do the bathroom in waves. We will replace the vanity when Kendall gets a little older. Right now, we help her brush her teeth and wash her hands and enjoy the storage below the sink! Instead of drilling down into our slab, we built the shower up a little bit and made an incline. Her shower seat is also a potty seat, and can easily be rolled back and forth. We are also able to roll her all the way to her room in the seat too, but haven't done that yet. Kendall enjoys having the warm water run on her while she's getting bathed with the handheld! I think it's working out lovely. Here are a few before and afters:
I'll stop there for now. I plan to update more throughout the break. I have a lot of time to make up!
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!
music together
more music please!
clearly before keto diet and diabetes
About Kendall...
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 :)