Thanksgiving

I definitely dropped the ball on a heart-felt Thanksgiving post this year. We certainly do have a lot to be thankful for though!

These past few weeks have been super, crazy, busy. Without nursing, my head has been spinning trying to juggle my family, home, school, and my first APA style research paper.  Of course the usual holiday break in routine has thrown everything off.

We had a beautiful Thanksgiving at Kendall's Nonnie's house. The food and family company was awesome. Kendall's Uncle Josh (Justin's brother) had a successful move from Kansas to Dallas, with Aunt Val soon to follow. Kendall has really enjoyed all the people around and good food...especially the good food. And Kamden and I are over-the-top excited about our upcoming Christmas break from school! Kendall on the other hand has really missed school, so she may be bummed when there's another break.


Aunt Kristin getting love from Kendall


Kendall Ann catching up on current events with Poppy...or, um, truck shopping.


In other news, Justin's truck was never found. Big surprise. So, he's knee deep in shopping for a new truck. And pretty excited about it. Kendall and I are excited about shopping for a new car seat. I think we've decided on the Britax Marathon that goes up to 70 pounds. I think it is the same model as the special needs one they sell (just a little smaller and a fraction of the cost.)

We recently ordered a Sleep Safe Bed too. I'm sure it will take a little longer for insurance/Medicaid approval, but maybe 2012 will be the year Kendall starts sleeping in her own bed. Maybe!

Progress

Sometimes it's hard to see the progress Kendall's making when you're around her everyday.  People who don't see her often tell me how far she's come (or how much her hair has grown!)  I try very hard to appreciate every "inch" stone she makes.  I think as a family we do a pretty good job of that. 

I stopped asking to read her goals the therapists write, or the notes from their visits.  But I do remember not long ago talking to her OT about holding crayons and markers at school.  I really never thought I'd see that...I'm sure that sounds horrible....but I'm realistic.  When she mentioned working on better form with holding a writing utensil, I thought her goals were a little unrealistic.

But today I was able to snap a shot of what we've been seeing from Kendall since the beginning of school. 

Not only is she holding the pen...she's also using her left hand to stabilize the Glow Doodle.  And she concentrates really hard while doing so! 

I'm a proud momma today! 

Paying it Forward...

Kendall ended up having strep and starting another antibiotic she had an allergic reaction to.  Hopefully the one we switched to (from Omnicef to Clindamycin) will do the trick.  When you have a miserable, coughing, not sleeping, not eating child who ends up covered in hives, it makes for a long week. 

Oh, and while I'm complaining, I should also add my husband's truck was STOLEN out of our driveway early Tuesday morning.  Apparently there has been a large number of trucks stolen in our town.  They never turn back up.  We were told it's probably already been stripped and in Mexico somewhere by now.  They've put together a task force, but it doesn't seem to be working...Anyway, that resulted in a very bad day yesterday.

We did go to the Neurologist yesterday.  It was our very best visit yet.  He thinks Kendall is doing awesome, and isn't even sure if what we are seeing weekly are seizures.  They may just be myoclonic jerks that don't let up.  We plan to take another video and send it to him. Of course, based on her previous EEG's, we will never be in the clear when it comes to seizures. We get that, but definitely welcomed some good news.  She showed off pretty good in his office too, despite being covered in hives. 

I attended a meeting at Cook Children's Hospital last week for a Family Advisory Council that I may (or may not!) be a part of.  While there, a child life specialist I was talking to shared with me a few cool things I wish I had known about sooner.  Both are great resources for families of chronically ill, or disabled children.  They would be great for ECI, therapists, and teachers to forward to their patient families as well...

The first is offered at our hospital and Kamden is attending this weekend.  He's read about them before, in the book "Views From our Shoes" but we were unable to locate a local group.  I think this is new to the hospital, and we were very fortunate to have someone pass it on to us...

The second thing is Texas Parent to Parent.  They offer respite care and education to families in Texas.  The back story is pretty cool, and they offer a ton of parent support.  Check out the website if you're interested:

http://www.txp2p.org/parents/

Ok...that's all.  A little random, but that's kinda how my brain is working this week! 

Sick

Honestly, I can't be upset. She hasn't been sick since school started (and this is the end of the second six weeks.) That's over twelve weeks of not even a runny nose. Pretty good for a kid who may or may not have a mitochondrial disorder :) I'd say her immune system is holding up just fine!

Another thing to celebrate is that this is the first September/October IN HER LIFE that we haven't been admitted to the hospital! I'm thrilled with that!

Today though, her oxygen saturation has been in the low 90's, she's lethargic and irritable. We began breathing treatments to help her have a more productive cough. But when you don't move around a bunch and have low tone, that gunk tends to just sit around her lungs. Pneumonia is definitely  not our friend, so we'd like to nip that in the bud now. 

She hasn't had a fever, but is having a hard time sleeping.  That darn drainage and irritating cough keeps getting in the way. 

She'll be better soon.  I'm sure of it.

We go to our 3 month visit with our Epileptologist tomorrow.  I'm a little frightened he's going to suggest another medication since she's still averaging one seizure a week.  I don't want to add anything else that could take her personality away again.  It's such a juggling act.  Seizures do damage, but meds seem just as bad.  Yuck.  And I hate making the final decision on these things. 

We saw the ophthalmologist last week.  He wants to do another examination under anesthesia in February.  It seems like we just had that done, but I'll follow directions.  For  my class I've been looking at eye reports and interpreting them.  So, for kicks, I pulled out Kendall's state eye exam from her first ARD.  They couldn't test her acuity at the Dr.'s office, so he reported her as legally blind....and her only vision was BTL.  It took me all day before I figured out that means "blinks to light."  All I can say is WOW.  Just WOW.  We've come such a long way.

In other news, our sweet friend Holly took pictures of the kids at the park a few weeks ago.  I think this little series completely captures the strong bond my babies have.  I'm grateful Kamden is such a loving brother.  He would do anything for his sister.  She adores him in return.  Take a look :)

Um, Yeah...

More on Kendall's Communication...

The past few weeks, since Kendall's initial Augmentative and Alternative Communcation Evaluation, my mind has been racing.

Seriously, just ask her teaching team.

I wake up in the middle of the night and send e-mails. I think about it constantly. I can't help but feel so elated and hopeful for her future.

Let me back up... Kendall has been hugely frustrating to me lately. She says no to absolutely everything. Well, she says uh-uh and shakes her head.

We've initiated her low tech device at home. She's way past it. She looks at me and grits her teeth and sighs when I ask her to make a choice between two objects.

It is so very clear that she has something to say and gets seriously upset when we can't understand.

On Tuesday night, when she was awake for 3 hours in the middle of the night screaming, and shaking her head from side to side, I decided enough was enough. No more me being patient, no more me not wanting to step on toes. My job is to make sure my daughter gets what she needs when she needs it. My dream for my "special" child is no different from any other parent's. I want her to be happy, healthy, and her own person. For her to have original thought and stand strong in her convictions. And communication is the MOST IMPORTANT stepping stone toward that dream.

Our private SLP attended a seminar in PA. a few weeks ago. She invited Holly, Angie (Kendall's nurse) and I over for a movie night last Wednesday. The featured program was this documentary: (this is the trailer)

 

It couldn't have come at a more perfect time. After reading the book mentioned in the previous post, her AAC evaluation, and the newly initiated plan in her IEP, I finally had some clarity.  Kendall's life doesn't have to consist of a yes or no guessing game.  There is a possibility of her gaining independence, graduating from high school, going to college, and choosing a job that she wants to do. 

I'm sure some of you, especially those in education, may think I'm a little premature in this thinking. Three and a half is early for a high tech communication system.  At least it has been early.  But today kids are using cell phones, iPads, iTouches, etc... before they're two.  There wasn't any mention of the timeline for these people featured in the video.  But honestly, I don't want to know.  The truth is, we live in a time where technology is available and quite amazing.  Doors are opened for our kids that were closed before.

My goal is for Kendall to have an established communication system (after this documentary, PRC with MinSpeak is a front runner) before Kindergarten.  I know it will require a lot of work, but I know we can do it. 

Last week I went to a school district nearby to observe a Functional Vision and Learning Media Assesment.  I entered a Resouce classroom where the children were sitting at tables doing absolutely NOTHING.  Seriously, sitting there staring into space.  And this wasn't a Life Skills class.  This was a Resource class.  But either way, it was sickening.  Obviously, I wasn't in a position to judge or comment, but it really ressonated with me.  If nothing else, it made me decide that there is absolutely NO WAY IN HELL my daugher will be sitting in a classroom wasting away because some teacher doesn't think she understands or can express herself. 

Times are changing, and I fully intend on making sure Kendall benefits from those changes. 

The full documentary is actually on YouTube.  I've embedded it below.  It's a little over an hour, but so worth the time.  At 42:50, they mention that some would call these people "savants" but go on to say that the reality is that at some time, someone determined that they get a device that would enable them to be spontanious and interactive.  (something like that)  

My promise to my girl is that we find the device ASAP which will allow her to have a voice and continue her education fully mainstreamed (with support.) 

And by the way, I'm not afraid to step on any toes in the process.  Those who have the opportunity to get to know and talk to Kendall Ann will be better pople for it.  She's going to change lives.  Guaranteed.










 

A Must Read...and a Halloween Picture!

I wanted to share a book my mother in law sent over on Sunday.  A friend recommended it several months back, and I had to pass it on.  It should be a required read in all schools in my opinion.  Although it is fiction, the author certainly did her research!  I felt like I was reading about my sweet girl from her perspective throughout the whole thing!   

I also wanted to share a cute picture Holly took of the girls trick or treating last night.  Kendall is clearly  trying to snag Caleigh's candy bucket! 



This week is crazy busy for my kiddos.  My children seriously have more of a social life than I ever have!  But busy is good.