InstaChristmas!

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!

 

Make A Wish

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.

Exhale.

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! 

Our September

Has come and gone!  (and more than half of October!!)

I really can't believe how time has been flying by.  I realized tonight as I began to recap her latest eye exam, surgery, and botox under anesthesia that I haven't even touched on her power chair!

I've been busy with my new job.  I couldn't be happier with the people I work with, or the kids!  I'm in the groove of working and handling things at home, and so far so good!  Unfortunately even though I'm not in the same classroom everyday, I do go to 10 schools and have been subjected to all kinds of germs.  I feel like I've been sick for two weeks.  And I never get sick!





I think that we (finally) have a set schedule for Kendall's school, and a plan for her advancing with her communication device.  It took multiple meetings, e-mails, phone calls, and sleepless nights  to get things in line.  Sometimes people are resistant to change.  I get that.  But I'm not giving in.  Inclusion and a collaborative approach to her communication is best practice.  And I know Mansfield ISD wants that.  And I've recently come to find out parents like me are considered "political cases."  I'm OK with that also...though I do prefer "advocate" or "involved parent."  Bottom line, I'm OK to be in your face when I need to, and I'm not going anywhere. 

Moving on.

Kendall did get a new power chair the first week or so of school.  She rides the bus in it, and is beginning to move it in the hallways and outside on her own. She operates it with a joystick which is completely reasonable for her.  I believe it is a matter of will and not ability! My darling children tend to enjoy having things done for them. We haven't taken the steps toward a van conversion yet, but I'm sure it is in our near future. 









This past week, Kendall had eye muscle surgery.  She was already going under for a few other things, so we went ahead and had the surgery for the second time. It was a long morning as you can see from the picture of Justin!  Surgery waiting rooms are stressful, and when the anesthesiologist comes out to talk to you, it usually isn't a good sign!  (her sugars went super high and we had unplugged her insulin pump, but it scared me to death!)  Anyway,  she's still aphakic (without her biological lenses) and has esotropia, ambliopia, and apparently optic nerve atrophy.  Her pressures are down in both eyes, confirming the thought that she isn't developing glaucoma, and the elevated pressures (29 in her right and 21 in her left) are due to a thicker membrane in her corneas.  Her left eye is ready for an inocular lens implant and her right eye may or may not be....so before the end of the year, we are going to attempt to put it in her right eye first, and if it goes as planned, we will do the left eye the next week.  If it's still not ready, we wait another year.  So...she could have implants by January!  It's been a long time coming!  Her nystagmus has dampened a bit since the muscle surgery...so that's good.  She's still crying vampire tears though...








We also did Botox again.  She had great success with it the first time.  When it wore off we could really  notice her being more tight in her hips and shoulders.  Hopefully that combined with the new Theratog suit will improve her sitting even more.  She's getting so strong!





Kendall started her first season of t-ball through the Miracle League.  She doesn't love it, but the environment and people we get to interact with weekly is worth it!  Kamden and her daddy have been her buddies on the field.  She still gets spooked by the cheering and hates sitting still, but she's warming up to it.  We have all enjoyed the car ride together and lunch afterward.  Its kinda neat to have a weekend thing just for Kendall.  We will definitely be playing again.





We are in the throws of a bathroom remodel.  (one of the motivating factors for me to go back to work!)  My back can't lift Kendall Briggs in and out of that tub much longer!  We are super excited about the transformation. 

I'm sure there's more to cover that I'm forgetting...Maybe I will update again next month!  It feels good to get it out :)

The Big Picture...

The school year is off to a great start.  Initially, Kendall was on the bus for over an hour to school, and over an hour on the way home.  That really worried me with her blood sugars dropping in the afternoon.  Even though we have a nurse on the bus with her, they both have to remain seated, so checking sugars and giving emergency apple juice was a challenge.  Fortunately, with some help from our Diagnostician and our Endocrinologist writing a quick note, the transportation department went above and beyond to see that Kendall's bus ride was swift.  It now takes around 12 minutes for her short yellow bus to get her to and from school.

As far as the school year goes, it's only week two...but things seem to be going as planned.  You see, I have this vision for Kendall.  I've mentioned it before.  It would be easier if I could shake it, and not fight for it.  But I can't.  It's hard to explain, but when an idea is laid on my heart, I can't rest until it becomes reality.  For real.  I dream about it, think about it, and completely obsess over it.  I'm not going to apologize for that.

First and foremost, I want Kendall's health to be taken care of.  She's complicated.  Unexpected things come out of the blue.  There's a lot of i's to dot and t's to cross. Without proper care every hour, the long term effects could be deadly.  Spend money on her care now, save money on her care later.  Give her the quality of life she deserves.

Secondly, she's only four, but typically developing four year olds usually have good communication skills.  While Kendall is saying more, and expressing herself through obvious gestures and facial expressions, there's still a lot she can't tell me.  She can't say if she's sad, mistreated, jealous, frustrated.  She can't share how much she actually knows with everyone.  So a communication device is not a luxury.  It is a necessity.  It is not something I will ever waiver on.  She needs the training from skilled people.  People working with her need training from skilled people.  Technology is evolving so much...it is imperative the professionals are also on top of things.  I will not apologize for "strongly suggesting" that training take place.  Ever.  If I have to be a thorn in your side to make certain my child is getting the best...I will.  We live in a community and pay taxes in a community that prides themselves on great schools.  Not good.  Great.

Thirdly, I want Kendall to enjoy her life.  I fully expect her to build true friendships and have love in her life.  The main reason I want Kendall in a general education pre-school class is for the socialization.  I'm not naive. I know she requires extras.  Her academic goals can be met in a general education class, it just may look differently.  Her social goals may not be able to always be met in a self contained class.  And it's even bigger than that.  The kids in general ed who she is playing with on the playground love her.  Kids see obvious differences, but with a quick explanation they usually go on with playing.  I've witnessed it.  It's the adults that hold them back.  So the big picture is society's acceptance.  The girls and boys playing with Kendall very well may become nurses, doctors, teachers, advocates, law makers, and voters.  If they remember Kendall as the sweet girl on the playground, or from school, her future will benefit from that.  If they think of people with disabilities as the kids in the classroom down the hall with the door closed, their decisions will reflect that too. Inclusion is a win-win.  Oh, and by the way, a least restrictive environment is also the law.

Trust me, if I could put both my kids in a bubble and protect them from hurt, and the evils in the world.....I would.  But my job is to train them to be loving, compassionate, trust-worthy, independent, contributing members of their community.  So while it's not always easy, I have to let my baby girl (and boy) fly.

Progress!

Just wanted to give a quick update and share some pictures from our summer. I absolutely cannot believe it is almost over. 

Kamden and I took a quick trip to Sea World last week.  My sister had a work trip, so we tagged along.  It was good to have a few days to spend with my boy.  He's growing up so fast.  I wish I could freeze time.

Both the kids are ready to start school this year.  It is very exciting to think Kendall will be attending 5 days a week.  She has come so incredibly far this summer.  I can't wait to watch those skills continue.  She was learning a lot during summer school and really enjoying it.  Good things ahead!

I have also accepted a job with Dallas ISD as a teacher of students who are blind or visually impaired.  I'm excited, anxious, and so ready to begin my new career journey.  I never thought (after my 8 year break!)  that I would ever be back in the school district.  And Dallas Independent School District was never even an option!  But sometimes things just feel right, and Lord knows I've learned to go with my gut!  I'd be lying if I said I wasn't excited to be back on a teacher's schedule too!  Their calendar matches up perfectly with my kids'.  I could write a novel about my experiences in Early Childhood Intervention this past summer.  It wasn't the greatest for me.  I didn't realize how emotionally involved I was in that program.  The kids, families, and people I worked with were great.  But I truly fear for the future of ECI in our area.  Enough said.  I can't say I wasn't warned...but I tend to go into things with rose colored glasses.

And my mom.  She actually drove herself over to my house today!  Hearing her voice as she entered my front door was music to my ears.  She looks beautiful.  Her scars are healing nicely.  She has elected not to do the radiation the Dr.'s suggested.  And I can't say that I blame her.  She has been through enough. 

I'll leave you with this video clip of  Kendall eating independently.  I have watched it over and over about a hundred times.  Knowing that she can do this is a huge breakthrough for me.  It also shows that she is an ornery little four year old and only does things when she wants to!

A Hot Mess

Pretty much describes my life right now!  Lets go down the list, shall we?

-My mom's cancer is back and she had surgery yesterday with a less than desirable result...
-I had a car accident during work.
-My son has pneumonia.
-I dropped one graduate class and am treading water in the other.
-When I'm at work all I can think about is home.
-When I'm at home all I can think about is work.
-I haven't been to the gym in like a month or more!

I try to be positive...really I do.  Life could/and has been so much worse.  This too shall pass.  Eventually.  But I would really, really like to get out from under this black cloud sometime in the near future.

Enjoy the random picture montage:

I need a vacation. And a stiff drink.