Surgery and More Surgery

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. 

I do love this little girl!!

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 :)