Neuro and Endocrine...

Kendall had two appointments at the hospital last week.  Wednesday we got caught up with our Epileptologist.  He's been with us since the beginning and has always done a great job listening to me, signing off on services and supplies, and making sure Kendall sees the Dr.'s that she needs to see when she needs to see them.  I have always liked the way he doesn't beat around the bush.  He tells it like it is, and I respect that.  (Actually our Neurologist in the Spasticity clinic  does the same thing!)  I truly think if we didn't start the Ketogenic Diet when we did, our outcome would have been much different.  So, we have him to thank for that!

I'm happy to say the appointment went well.  He's not terribly concerned with the startle seizures we see when Kendall wakes up or when she gets scared.  He asked us to  consider adding Clobazam to our Keppra routine...and I will consider it.  He didn't pressure me about getting in for another VEEG, which made me relieved.  We now see him every 6 months which also makes me happy!



On Thursday morning bright and early, we spent the morning in the Endocrine clinic.  Catching up with our Diabetic Educators, nurses, and dietitians in there is always fun.  They all dote on Kendall.  They have seen her come a long long way too!  Nobody can believe how big she is, and all comment on how amazingly she holds her head up and interacts with them.  She has come a long, long, long way since that dreadful week in the ICU. 

Our Endocrinologist crosses all his t's and dots all his i's.  He asks about Justin and Kamden, and we talk about her development.  He has always been on the Mitochondrial bandwagon, and this time he wanted to make sure I see our ophthalmologist to discuss the different ways Mito, not Diabetes, can affect her vision.  Whatever.  I got this buddy.  And I'm pretty sure our pediatric ophthalmologist does too.



About two weeks ago, Kendall started having low blood sugars in the mornings.  Like super low, 50's and 60's.  He is convinced it is the Mito starting to show it's ugly teeth and changing the way her body absorbs her food.  Of course, I silently worried about that all day.  That evening I went to make some changes to her pump.  After I did, I looked down and realized the AM and PM was reversed on it.  Totally my fault after changing her last battery (though I do remember getting a letter from Animus about a glitch after daylight savings time.)  Anyway, I then realized that instead of her having lows in the late afternoon, she was probably having those lows in the early hours of the morning....I shutter to think how low they dropped without food and while she was sleeping.  Close call for sure.

Anyway, her HA1C is a 7.1...and we go back in another 3 months which is standard for Diabetes.



Our appointments continue to spread out, and that's a good thing.  I'm grateful for great Dr.'s and a fun facility.  Our specialty clinic moved next door to the new Dodson Center at Cook Children's.  So our appointment days are becoming something to look forward to!  Kendall loves the Pirate's Cove because her wheelchair fits through it and the wheelchair friendly playground.  Mommy loves the handicap parking on the lower floor in the garage, and the Chic Fil A!

Choices...

Kendall is going through a stubborn phase.  This is definitely complicated by her lack of communication.  We have the PRC device at home now, but honestly, it isn't to the point were she can use it.  We aren't "permitted' to program it until she goes through the motions of demonstrating each skill independently.  I get that they don't want her to go too fast too soon, but "they" don't really spend enough time with my daughter to know what she's ready for...  And becuase of that, this is what a lot of our day looks like.  I originally took this video because I was so proud of her not giving up until she made her choice on her own.  She worked so incredibly hard to get this doll out of the drawer. I'm so thankful for the progress she's made.  But I do still get pretty pissed off that she has to wait for someone else to guess what she's thinking (and they'd better guess correctly) before she can have her choice.  And what if she wanted a choice not in the drawer?  Which is also a good possibility.  But that's just my guess.

Can't you just see the wheels turning in her head?

Spring Showcase and Talent Show...My Boy.

Although this blog tends to focus mostly on Kendall Ann...there is definitely another ray of sunshine in my life. My dear, sweet, eleven year old boy. I'm not going to lie...this 5th grade year has been full of not turning in homework, (even though he's completed it and it's in his back back!) unorganized binders, missing curfew, slamming doors, talking back, and lots of pre-pubescent zoning out! But he is one of the dearest children I have ever met and I wouldn't change a thing about him!

Last weekend he performed his original song "Being Eleven", written out of eleven year old angst, and he made me very proud. My sister took the video on her phone, so the image isn't the greatest, but the sound is the same :)  You may have to pause the blog music at the bottom if it comes on first!

 

And then last night, we attended the 5th and 6th grade talent show where he performed "Wagon Wheel" in front of his peers, teachers, and their families. Again, the video isn't great, but I was so proud of his confidence and talent!



Kendall was in attendance at both events, but her daddy patiently walked her around and got her through her fears. For a child with a vision impairment and multiple disabilities, dark places with lots of sudden sounds and applause can be very frightening. But we continue to try. She always loves to hear her brother play guitar.

Breathe

 

I have the word "breathe" above the door to my patio.  I often need the reminder...and the past few weeks I've needed it a lot.  Where to begin?

I finished up a pretty tough semester of school.  I had to take two trips to Austin and leave my family (and new puppy) in the hands of my husband.  He did remarkably well.  The house was a disaster, but everyone was alive and happy, so I shouldn't complain.  Going out of town twice in the last month really took its toll on me.  Just simple things like getting caught up on laundry, and helping Kamden finish up his science fair project seemed to take forever.  So, blah, blah, blah...I haven't had any time to blog.

Kendall's health is at a stand still right now.  That's a good thing.  We are still in a holding pattern with her bladder and hips.  I'm not naive.  I know there are some major things on the horizon, and as she gets older the  CP monster and whatever metabolic issues she does or doesn't have will affect her in a variety of negative ways.  But for now, we are living life day to day and enjoying the moment with her.

Last week I interviewed for a job.  It was something that just sort of came out of nowhere, and I really had peace about it.  I found out Monday that I did get the job, so I will be a working woman again in a few weeks.  (insert panic here.)  In retrospect, I should have agreed to start right away so I wouldn't have three weeks to talk myself out of it.  It's not the job, it's the guilt I'm already feeling about leaving Kendall during the day.  We still have a few nursing issues to work out for Fridays, but all in all I know she will be in good hands with our beloved nurse who's been with us forever and attends school with her, and my parents who will be filling in the gaps.  It won't be easy, but I can do it, and am looking forward to getting out into the world again.  My sweet Kamden will have an amazing summer too.  With some added income, he will be able to do some camps and activities I otherwise would have to say no to!  But everyone in our household's lives will be changing...and responsibilities will be added to all :)

The weather has been nice here lately.  Kendall got a new swing set which will soon include a platform swing and a bigger special needs swing with a pommel.  We have been spending a lot of time outside swinging, playing with our dogs, and swimming.  (all of Kendall's favorite things!)