Kendall's Hope

Anesthesia Twice in Two Weeks?

2012-01-31T06:35:00.000-08:00

Kendall recovered from the traumatic experience. And the same procedure under anesthesia is scheduled for this Thursday. I'm actually sick about it. We have to do it the facility where the Dr.'s office is. He doesn't apparently have any privileges at any of the children's hospitals. Imagine that. Our ophthalmologist's office even got involved trying to schedule with them so she would only have to go under anesthesia once. He wasn't having it. I'm not surprised that he doesn't play well with others...

I'm going to put her in God's hands and go with the flow. But it sure does make me nervous not to have a pre-op or pediatric anesthesiologist. They have no idea what they're in for.

I may sound slightly calloused, but really what the hell am I supposed to do? This is our only option. Everyone I have talked to says the same thing. This guy is the worst with kids and parents, but world renowned. Whatever. I just can't wait for him to try and make my 6'5" husband upset. Justin's very slow to anger....but the one time I did see him angry, it was because somebody messed with his little girl.

In other news, Kendall has a video EEG scheduled next week, and an examination under anesthesia for her eyes the week after that.

And believe it or not, she's been sleeping with that darn wedge every night for at least six hours. Baby steps.

Kamden may or may not be testing for his black belt this weekend. He's worked his little butt off, but we won't know for sure until Friday night. He has to break boards in class on Thursday. I'm full of anxiety about all that too!

I can't wait for this week to be OVER.

Please keep us in your prayers.

Yet Another Fiasco...

2012-01-26T16:12:00.000-08:00

Ho Hum.

We went to do the urodynamic testing today. The Dr. (the neuro urologist) was a nightmare. He had the absolute worst bedside manner. We see a lot of specialists, and this one was by far the absolute worst. Some of his ridiculous comments included...calling Kendall "mentally retarded," and telling me to work on my "frazzle level" and "lowering my standards for her care." I couldn't even do his horridness justice by telling you, but let's just say it was bad. Really, really bad.

They took her back to the procedure room where her home health nurse and I held her down and a sensor with needles was placed in her rectum. From there, these nurses who "do this all the time" (but apparently not frequently on young three and a half year old girls) proceeded to attempt over three times to cath her. We didn't even make it to the part where they injected the dye for the test because she pushed out the catheter when they were finished taking out her urine. In the room, the nurses informed me that they can do this under anesthesia. They warned me that there was also the possibility of putting her through all this and the test result still not being read properly because of all the movement. Kendall was screaming in agony, and I made the call to stop.

Our appointment with our urologist was cancelled by them and we were given instructions to schedule the procedure at the same facility under anesthesia. The Dr. ran her urine and told me she didn't have a UTI, and then followed me out to the check out lobby where he made me cry again talking about how I need to take care of myself first if I'm going to be expected to take care of my child.

I guess in his eyes I'm a basketcase.

But he also doesn't know that I've never cried in front of one of Kendall's Dr.'s before. Ok, maybe I have, but not in a long time. I don't lose my composure easily anymore. I had just spent an ungodly amount of time holding her hands while she screamed and writhed in pain. I wasn't prepared to get the speech about how "God has a plan for my daughter," or the part about how "she has a lifetime of issues that will require me to face tough situations." Especially from a pompous Dr. who specializes in old lady incontinence.

Problem is, he's the only one around. And supposedly the best.

But he doesn't have the ability to put a kid under anesthesia at our beloved Cook Children's Hospital. They don't even have his role at the hospital...so our hands are tied. She needs the test, and we have to do it.

I guess between you, me, and the fencepost, the most upsetting thing about this whole ordeal is this: Because Kendall is considered delayed, and has a label of CP, and lots of other things, they didn't treat her like a typical three and a half year old girl. They attempted to do this procedure on her while she was wide awake. Completely aware of what was going on. (She clenched on to her nurse's arm as she tried to put her down on the table, clearly petrified.) And it took me close to 20 minutes to stop them.

So now we wait to schedule it under anesthesia. More waiting, and more worry.

ps: I actually shortened this post A LOT. I really wanted to go into more detail, but I'm working on my frazzle level.

Right....

2012-01-24T05:16:00.000-08:00

She's going to sleep like this for the next three months. OK.

Orthopedics and Urology Update

2012-01-18T13:54:00.000-08:00

We had Kendall's appointment with her orthopedic Dr. yesterday afternoon. They took a few more x-rays and delivered the news: she does in fact have bilateral hip subluxation. When she's on her back with her knees out, her hips go back in socket. When she has her legs straight out, they are a little over 50% subluxed.

Her spine is fine. No scoliosis.

We will begin botox next month. She will sleep with a wedge. Hopefully this will help, but it won't fix the problem. Muscle surgery (and the body casting for 6 weeks after) will likely happen for Kendall sooner rather than later. I am investigating (aka...utilizing my global resources!) different hospitals, procedures, and options just to make sure we make the right decision. Again, I wasn't ready to cross this road so early, but we play the cards we're dealt. If any of you have experience with this, I welcome your input!

Her urodynamic testing was scheduled for February 29. That was the earliest appointment they had. I don't usually accept the first answer I'm given, so I called back twice to see if there were cancellations...despite the nurse's first answer of don't call us, we'll call you from the cancellation list! Fortunately, there was a cancellation and my persistence paid off. She's now having the test next Thursday with the neuro urologist (who knew that guy existed?) and a follow up that afternoon with her urologist. From there we will make further decisions.

So, that's the latest. I'm still pretty emotional about it all, but since I've been super busy, I haven't really thought much about it.

Tomorrow I am going to a meeting at Kendall's school to learn the second device in our trial. It's a PRC with Minspeak. (insert my squeals of joy here) I'm excited that there's now a plan in place. She should have her own device by Spring Break, and there is training already in place for all that interact with Kendall.

January is plugging along. I only had three fits in the pharmacy line this month, so the year's off to a good start.

Self Feeding

2012-01-17T06:19:00.000-08:00

Sunday evening we were trying to get Kendall to eat orange slices by herself. She can do it. She self feeds for a lot of people at school, but rarely for us at home! It's way too easy to have Justin or me put the food in her mouth :)

So Justin placed the oranges on the tray and walked away. Then we peeked around the corner and Justin was able to catch her doing this! About 45 seconds into it, she sees the camera, but by then was enjoying the flavor too much to stop...

Silly girl.

The video should turn itself upright when you hit play. I put music in the background to spare you the panting dogs beneath her tray just waiting for her to drop a slice.

Urgent Prayers Please :(

2012-01-10T13:18:00.000-08:00

Wouldn't you know after last night's amazing news, there was a series of bad news to follow? That's the cycle my life takes. And this one's pretty ironic.

I've gone back and forth on all of this. I haven't called anyone in my family yet to share the news, because I just don't want to have to tell the story more than once. And I do better processing information when I write it down. I don't want to upset anyone with the details or what-if's, but I've decided to share because it can go a number of ways, and I want it to go only one way.

We had a Urology appointment today. It was a follow up to her latest kidney ultrasound and kidney, urethra, bladder x-ray. I went in there thinking maybe we would leave with a diagnosis of chronic urinary tract infections, and start Bactrum daily to prevent them in the future.

Unfortunately, the images showed more than that. They showed that she has bilateral hip subluxation. I wasn't prepared for that since her therapist hasn't noticed it, and when I asked our neuro a while back if we needed to see an orthopedic Dr., he said not yet. I know with severe cerebral palsy, it is inevitable and she will at some point need hip surgery, but just not now. I'm talking with our Neurologist in the spacticity clinic to make sure he sees the latest x-ray and still feels the same way. I'm not ready to deal with bone and joint issues yet. Obviously, the Urologist was obligated to mention an orthopedic referral...but I'm not scheduling it until someone else tells me too!

Unfortunately, the images showed even more than that. They showed major constipation (which caught me off guard because she goes daily with the help of miralax, and pediasure with fiber) They also showed swelling in her kidneys, and a very, very, full bladder. (again a shock to me since she has regular wet diapers.) There is concern that her kidneys are being affected by the urinary tract infections. Which would explain the blood in her urine, and previous kidney ultrasounds showing edema. The thought is that she holds on to her urine and it grows bacteria (think baggie of water setting overtime.) She has had the VCIG performed before, so we know she doesn't have reflux. But this isn't caused from reflux.

He's ordered a urodynamic test and I'm waiting to hear back for that to be scheduled. Basically, it is a contrast study that through a catheter fills her bladder with dye and we watch to see what happens to it. Does she pee it out immediately, or does it (because of the pressure of such a full bladder) go back up into her kidneys? The prayer I'm asking you all to pray is that she pees it out and everything is fine. And it ends there.

If it is abnormal, we have decisions to make. I wasn't going to go here, but for the sake of documentation, I will.

We will have to decide between two undesirable choices. She will either have to be catheterized every four hours, or we will have to have a surgery that gives her a vesicostomy. Not sure if that's the right word...but where they do a procedure that through a tube she will involuntarily release urine into a diaper (or a bag.) She then loses the ability to feel the urge to go, therefore will always have it and not urinate on her own.

This is all for the sake of keeping her kidneys healthy. Without healthy kidneys, you can't grow and develop, and as a type one diabetic...again, we need strong, healthy, kidneys. She already has a lot of strikes against her.

I wish with all my heart that I could take this for face value. That I could say, OK, she has this problem, it will be fixed, it's inevitable with a child with Cerebral Palsy (kinda like the hip thing.) But I can't. Because I asked him if that was the case and he said no. He sees a lot of children with CP or brain injuries and they don't have this. He does see it a lot with kids with spinal injuries (or SB) and they do have this problem....it's common in those kiddos. But not usually with brain injuries.

So that takes my brain to the other place. Could it be the inconclusive muscle biopsy? The one where they lost the specimen and needed more in order to test her respiratory chain mitochondria? Is this nasty progressive Mito monster going to grab my baby girl up and start wreaking more havoc on her already damaged body? Is it attacking that next system? Sure looks like it on paper to a lot of Dr.'s (except our metabolic geneticist!) She has had problems with pretty much every system. Now we are adding more. It literally makes me sick to my stomach. Makes me cry. And makes me very, very angry.

But I do believe God answers prayers. So, I'm asking for yours now. Please, please pray that those latest tests were because she had a UTI with no cause. That she had a full bladder because she didn't want to pee because it hurt. That the test won't show something major that causes us to have to put her through more stuff...or do another muscle biopsy.

Benchmark Day!

2012-01-10T05:29:00.000-08:00

The very same day I received notice that Kendall won't get diapers covered anymore until she turns four, my sweet girl did this:

I'll spare you the after picture that this proud mama sent all her friends via text message, but lets just say she went both number one and number two in the potty after signing to her Daddy that she had to go.

A bathroom remodel is in our future, and I'm thrilled that we now have to take into consideration the location and accessiblity of her potty, not just her bath.

Ending my crazy day with such an accomplishment from Kendall, makes it all worthwhile! I know all of the hard work involved in raising her is not in vain. Little things like this keep you moving, and I can't wait for her to do it again today!

Quick Christmas Recap...and Some Medical Updates

2012-01-02T18:32:00.000-08:00

2011 went out with a bang. Sick kids for two solid weeks through Christmas break isn't fun, but we made the most of it!

But we're over it now. Everyone is on the mend. Both kids went back to school today and are back to their old selves again. Christmas is put away, and I've been purging junk drawers like a champ. I still have a couple more weeks until my school starts again. My course load is going to be tough, but I'm getting closer to my goal, so I'll plug on through!

I'm not usually big on New Year's Resolutions...but this year I'm making one. I'm going to stop apologizing when I'm fighting for my kids. Reality is, we are all just trying to get through life. But if your personal life results in you not following through on what you say you're going to do, and my kid suffers....I'm done with you. Done.

Beginning today, Kamden starts training for his black belt. To say I'm proud of him is an understatement. He's stuck with Karate, gone when he didn't want to go, and proven to me that he has the stick-to-it-iveness not to quit something he's started. That makes me proud. With that said, his schedule is going to be tough these next six weeks. Between guitar on Monday's, drama club on Tuesday's, and karate 5 days a week (yes...5!) plus schoolwork, it seems like a lot. He has a lot of work ahead of him! But he says he's determined and can do anything for six weeks. I just hope I can!

Kendall did end up returning to the ER last week. She was satting in the high 80's, low 90's, so we took her in. We've done some tweaking to her breathing treatments, and it seems to have worked. While there, we did discover another UTI, so I FINALLY took her back to the Urologist. We're not new to the whole UTI business. We're very used to discovering one, starting an antibiotic, switching antibiotics when the cultures come back in...blah blah blah. But today we did get some answers. She has blood in her urine again, so another bladder ultrasound and x-ray was ordered. Could be constipation, could be more kidney related, so we are also going to go back to the Nephrologist. A few months back I stopped going after they ordered an IMBG scan for high metanepharines. I felt that was a wild goose chase, and I wasn't prepared to go down that road. But, I will swallow my pride and go back to see what's going on with her kidneys. A type one diabetic at 14 months old wouldn't hurt to be followed by a Nephrologist, I suppose.

January's calendar is filling up fast. At least we'll hit our family deductible early in the year...

Bah, Humbug!

2011-12-24T11:26:00.000-08:00

December has been a crazy month for us! I worked really hard to go into the kid's Christmas break from school with plenty of time to do fun activities, go fun places, and spend lots of quality time together around the house baking, crafting, watching movies...

But as usual, things didn't go as I planned.

We have been in the emergency room with Kendall, to the pediatrician with Kendall, to the pediatrician with Kamden, and an emergency visit to a specialist for him.

But we aren't complaining! We are in the comfort of our home, and have avoided being admitted to the hospital so far! Hopefully it will continue through at least the next few days. Then, maybe, just maybe, we will catch a break!

It hasn't all been bad, just filled with worry. We had a great early Christmas with Kendall's Nonnie, Poppie, and Aunt Val, and will be spending Christmas Eve with my family and my sister's family tonight. Christmas morning will be at our house, and despite illness, both my kids continue to have smiles on their faces! I just may need a vacation when it's all over :)

Our break has looked more like this: (instead of the Pinterest Christmas I envisioned! But, that's our life, and we'll count our blessings :)
(I had to snap this picture of all Kendall's meds and equipment...with my meds in the background :)

A Christmas Party

2011-12-11T09:10:00.001-08:00

Our nursing agency had their annual Christmas party last week. Santa made an appearance and Kendall was intrigued. It was a great night for our family. Kendall ate lots of pie, and Kamden enjoyed dancing with his sister and making new friends! Santa got Kendall a sweet gift and our nursing agency, Vivicare Health Partners, donated to the Ronald McDonald fund in Kendall's name. They also set up a scholarship fund for a special needs camp in our area. We are so blessed to receive services through them. They truly go above and beyond everyday for Kendall...and all their kids. And we are so grateful for our amazing nurses. (and with our current state of affairs in Texas...we don't take those services for granted....as they can go away at any time!)

We're gearing up for the holiday break. We have lots of parties scheduled for the kids next week, and are looking forward to a nice, relaxing, break with our friends and family.

I'm finished with school until January! woooohoooo!

Kamden's Christmas Song

2011-12-05T16:40:00.001-08:00

Kamden performed his Christmas song on Saturday night. His ability to compose music from scratch completely blows me away. He is always walking around this house with that guitar thrown over his shoulder. Music is his release. If he gets mad you can find him angrily strumming away in his room. When he's happy, he's jumping around the living room playing like a little rock star.

And the bond he and his sister share through music is pretty amazing. At the end of Kamden's song Saturday, she started crying because it was over :)

It was a great night. My kids make me proud everyday!

I thought I'd share a few pictures of my babies....and of course a video of Kamden's original Christmas song :)

I'll attach the words too. In my opinion, the kid's got talent :) Kendall agrees.

It was a very very still night.
The day their son was born.
Just one big star shining so bright, early that first Christmas morn.
But how were they to know, it'd be such a special day?
Mary's tears started to flow, while Joseph began to pray.

And the angels sang: Hallelujah.
And the sinners sang: Praise be to God.
And the wise men sang: Jesus Christ is born.

It's Christmas morn. It's Christmas morn. It's Christmas morn.

It's a really simple message you see.
Based on that birth long ago.
His life will set us free.
As sinner's we need to know.
Our Lord sent his son to die.
So we can forever live.
He's such a gracious God.
Us sinners he will forgive.

And the angels sing: Hallelujah
And the sinners sing: Praise be to God
And the wise men sing: Jesus Christ is born.

It's Christmas morn. It's Christmas morn. It's Christmas morn.

Thanksgiving

2011-11-29T14:38:00.001-08:00

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

2011-11-17T17:38:00.001-08:00

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...

2011-11-16T14:17:00.001-08:00

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

2011-11-13T16:03:00.001-08:00

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...

2011-11-09T17:51:00.000-08:00

More on Kendall's Communication...

2011-11-06T15:52:00.000-08:00

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!

2011-11-01T10:58:00.000-07:00

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.

Fall Fun

2011-10-30T07:27:00.000-07:00

This has been a very busy weekend for our family with fall activities! And we still have two more days of fall festivals, a field trip at school, and trick-or-treating!

It is completely evident that Kendall has come a loooong way in the last year. Her tolerance for outside and crowds is astonishing! Her interaction and awareness of her surroundings and wants and needs is even better.

She did great at Daddy's work group family day at the zoo yesterday. We came home for a quick nap and then took off to a friend's Halloween party. There were tons of kids and Kendall was battling some high sugars (and a UTI diagnosed on Thursday) so she was less than thrilled about pumpkin painting, cookie decorating, breaking a pinata, balloon animals, and face painting....yes, they had ALL of those things! But she was very excited about the bounce houses. She desperately wanted to bounce with all the kids. Her brother laid down the law in the bounce house, and we put her in there. Unfortunately, she only lasted a few minutes before totally freaking out. But, I would have freaked out too with a bunch of rambunctious boys bouncing next to my head and not being able to move away. She cried the whole way home, but when we got home she did fine with the alternative, which was jumping on the trampoline. I was a little bitter about the whole deal, but today I'm better. We'll just continue to make adaptions for our sweet girl. Really, what else can we do?

ARD Update

2011-10-25T09:30:00.000-07:00

Yesterday we had Kendall's ARD and discussed the results of her AAC evaluation and Music Therapy Evaluation. Justin had to catch a plane, so my sister tagged along for support (and my much needed comic relief!)

ARDs stress me out. I know everyone has Kendall's best interest in mind, and we have a great team, there's just something emotionally draining about the intensity of getting it all down in writing correctly. I know my rights. I know I can go back to ARD at any time. I get it. But it's really not that easy. There are so many people involved and it's very difficult to find a time that works for everyone. I trust the team we have with Kendall, but there isn't any guarantee that they will all be around doing the same thing in the same place, so it has to be official.

I had my list of questions and concerns in a binder that I spent a ridiculous amount of time organizing. I didn't even open the binder. I spent the first 45 minutes of the ARD listening to the contracted AAC evaluator explain the reasoning behind the low tech, mid tech, and high tech devices. She asked me as we went if I had any questions, to which I replied no, because I didn't want to jump ahead of the meeting. I wanted to hear her out. But, she left before we had the "official" writing in the IEP. When it came time to address the things that were most important to me (i.e. timeline of implementing devices, who was responsible for what, who would do training on programming and be responsible for obtaining the devices, etc...) It came down to the last five minutes. My sweet girl was out of school, and it was time to go. I left frustrated. And confused.

Fortunately, we have a great team, and my evening ended with a few text messages and phone calls that put me more at ease.

But I still have some concerns. First off, even though it was referred to as "training" Kendall using an eye gaze system with two objects really backs us up. She's been doing that for almost 2 years. That's the reason we started the iPad. She was past making a choice of two objects. She's ready for voice output. The idea is that we will "train" not "test" her doing that on her low tech device. But there was confusion after the AAC evaluator left as to whether or not that meant we needed to wait on demoing the high tech device. I was under the impression these devices would be used in unison. The person who thought we were supposed to wait on it is the same person who I thought would be responsible for continuing the recommendation and obtaining the device. Obviously there was a communication breakdown. Thankfully, we have a few people on our team who aren't afraid to utilize their resources, and we are reaching out to another SP at a different school, and will get assistance from our Education Service Center to make sure we have what we need to move forward. Those who work regularly with Kendall know what she's capable of, and won't drag their feet in getting the devices.

I woke up in the middle of the night thinking about everything again. If backing Kendall up for a few weeks gives us the opportunity to get everyone on the same page, with the same pictures and placements, it might not be bad. If we can start off simple with something easy to be consistent with, hopefully we will have more success.

I understand the statistics on AAC device failure. I recognize that giving someone too much too soon can result in frustrations and shutting down. But I also know my daughter. If we don't up the ante fast enough, she will most definitely lose interest and shut down.

I'm prepared for this to be a roller coaster ride. But I'm also committed to slowing down and making sure we get the right device. Because Kendall has so many people working with her (and I really wouldn't have it any other way) we all need to be consistent for this to work. That is why I believe training is the most important piece to this puzzle. We can't just assume that people with the background in education understand it, or have the same philosophy. Training in my opinion is crucial. And it's also the thing we didn't address yesterday.

I feel so moody when it comes to Kendall. I go through phases of anger and resentment too. I remember getting her g-button and sobbing my eyes out because I had to make a decision on an alternative to feed my daughter. Feeding. One of the basic needs a mother meets for her child. I couldn't do it. Now I have the same feeling. Talking....expressing herself... it should be a basic thing. And I'm really pissed that it has to be this dang complicated.

Mama Rock Me!

2011-10-19T14:58:00.000-07:00

Thought I'd share the latest video of Kendall listening to Kamden play guitar. Everybody loves a little Old Crow Medicine Show :) (pause the blog music at the bottom!) .

Around 3:05 Kendall notices the camera. And my girl loves the camera!

Kamden turned eleven on Sunday while I was gone. We will be celebrating his birthday this Saturday with a few friends at Six Flags. The boys are convinced they will be able to see part of the World Series from the top of one of the roller coasters, since the ballpark is right next door! I'm not so sure, but they are still super excited

We go to ARD on Monday to review her AAC evaluation and set up the game plan. I'm bursting at the seams I'm so excited!

Stay tuned...

Work in Progress...

2011-10-18T07:16:00.000-07:00

I often wonder if I will ever feel like we are doing everything we need to be for Kendall. I feel like I have given her my all. But with a child like Kendall, there are soooo many things to consider. I have to prioritize too. If we are focusing one hundred percent on getting rid of seizures, or controlling blood sugars, or monitoring vitamin supplements and nutrition, it leaves little time to enjoy the everyday. But those things are the most important, as they keep her alive, thriving, and out of the hospital! It is very time consuming.

I'd like her to stop relying on her g-button for feeds, but if we rely on her to eat orally for every meal, it takes FOREVER! She also fatigues quickly, and doesn't enjoy being pressured to finish a plate of food.

Encouraging Kendall to make her own choices, or make a request on her communication device before we start an activity, or eat something, sounds great in theory, but there are only so many hours in the day. We have loads and loads of appointments to get to, and school four days a week. We don't have a lot of down time.

I also enjoy spending mommy time with her. Cuddling, rocking, singing songs and just being. I don't always want to do joint compressions, or therapy, or make her use her left hand.

I think as a family, we have a pretty good balance. Justin jumps in when I'm over it, and I do the same for him. We have great support with grand parents, and Kamden knows how to do it all too! And without our nurses, oh, I can't even think of life without our nurses.

But it gets overwhelming sometimes.

This past weekend, as part of my Anatomy and Functions of the Visual Systems class, I spent the weekend in Lubbock. I felt like I was on the edge of my seat the entire time. Everything we are learning is so important to me. I am personally and professionally vested in this program. We dissected a cow's eye ball, and I didn't throw up! We watched videos of teachers working with kids just like Kendall and began learning how to do a Functional Vision and Learning Media Assessment. We had a Low Vision Specialist review eye conditions and present a lot of the new low vision devices. The Texas Department of Assistive and Rehabilitative Services presented their programs to our class. We had a deafblind lunch experience by wearing blindfolds and earplugs and relying solely on our other senses to make it through our lunch. (this was the most amazing experience for me, as I now understand why Kendall doesn't like it when someone makes her put her hand on something...) And the whole power point on Cortical Vision Impairment was of course near and dear to my heart! Just when you think you know everything about it, you realize you've only touched the surface of the complicated relation between the brain and everything else!

I left with my wheels spinning. But I also left thinking I should be doing more for Kendall. We should be assisting her with her vision more than we are. Our Dr. should have presented us with other options for contacts, and should have already referred us to a low vision specialist. Kendall needs more magnification because her lenses are gone, and she doesn't have inocular lens implants...diabetes will affect her whole body, including her eyes if we allow her blood sugars to fluctuate...the risk of Glaucoma with her high pressures isn't something our Dr. should be brushing off. My list can go on and on.

I also left feeling compelled to share everything I know. I'm often broken at the thought of families in the same position who don't have the same resources we do. Adjusting to your "new normal" as people ("experts") are throwing their opinions and suggestions on you, and constantly saying you aren't following through like you should can be devastating to a mom who just yearns for her child to interact with her. Families who have teachers that are quick to blame the parents for not following through or who give up too soon. Or my favorite, when teachers say a mom is in denial because she still expects great things out of her child with multiple disabilities. (I'm a fan of the "Least Dangerous Assumption") And then you have the kids who don't have anybody fighting for them. I wish I could fix the world.

It was very emotional and exhausting weekend, but I feel charged to keep going. I may putter through this one class at a time. I may or may not go back to work anytime soon. But I'm learning things that will help my sweet girl, and others along the way. I just wish I had more time for everything!

And then I see this sweet face. We could all learn from the simplicity of her mind. She's happy when she's happy. She doesn't hide it when she's sad. She expects the best out of everyone, and deserves the same in return.

Language Stealers

2011-10-12T11:24:00.000-07:00

My friend Jennifer Jordan shared this video today on facebook. I found it comical yet spot on in relation to what some of my close friends are going through. We're just starting this journey with Kendall. Just now in the throws of putting things in action. Everyday I am so thankful for the technology our sweet girl has at her fingertips. But I also know it will require more than just funds for the device and it written into her IEP. It will require everyone, EVERYONE in her life to embrace it too. But I feel optimistic today.

As a follow up to the last blog post...I'm still not sure what action to take. Taking Kamden out of her class isn't the message I want to send to him. I do want to take it to administration, and possibly suggest sensitivity training, but I doubt that will help much. It will be just one more thing the teachers have to add to their plate. She's someones mother, wife, friend, and has been teaching for over 20 years....I don't want to destroy her. Thanks for all of your supportive comments. Honestly, as I wrote it, I thought people may think "here she goes again!!!" But it is nice to know my thoughts aren't that far from the rest of the world (or at least those who read my blog!) People like her aren't going to go away. If she hasn't gotten it yet, it's because she's not receptive to learning it. I'm sure eventually I will come to peace with the fact that not everyone does.

Speechless!

2011-10-10T11:17:00.000-07:00

It's been a while since I've used my blog as a venting platform. But for my sake, today is going to be one of those days. This is a story I have to get out, get down in writing, and move on. It will destroy me if I dwell on it.

I went to a conference today with Kamden's writing teacher. He received a high A in the class, so I didn't schedule it to discuss grades. Instead, there have been quite a few instances where Kamden's complained about this teacher. She's grabbed his shoulder, yelled at him, refuses to call him by the name Kamden, since it's his middle name...the list goes on and on. Typical student reports about a teacher who is maybe a little older, and not quite as fun as all the others. Kamden's a 5th grade boy. I'm not at all naive enough to believe every story he's told me isn't embellished, or one sided.

He recently told me a story about him making a noise in the hall and the teacher calling him out and asking him "are you mentally disabled?!" "no, you are not. stop making that noise!"

You can imagine my reaction to this story. I'm pretty sure I gasped and left my mouth hanging open.

I decided it was definitely time to step in. First off, I'm usually pro-teacher. I never let Kamden think I'm not on the teacher's side. But I'm also not a fan of teachers who yell at students, teachers who say "shut up" or teachers who belittle students in front of other students.

You can also imagine, I'm DEFINITELY not a fan of teachers who would make a comment like this.

So, today I went in to hear her side of the story. Yep, her side of the story was exactly the same as Kamden's. Exactly. Except she proceeded to tell me he was trying to make a bird noise and it sounded like, you know, he was one of those kids who is mentally disabled.

To say I was shocked is an understatement. My whole body started to shake. My eyes welled up, I could barely talk. Clearly I take this personally, but it is so much more than that. I told her that Kamden had a sister with disabilities. She asked what (not sure why the crap it mattered) Then said, well, I said mentally disabled. Not mentally retarded,so I was politically correct. This woman seriously said this. Looked me right in the eye, and completely missed the point.

I sort of explained where I was coming from, and she said something like, "well I know he's not, so it wasn't like I was making fun of him." Seriously. Still missing the whole entire point!

What do you do? I usually think on my feet pretty well, but today I completely shut down. She's older. She's almost ready to retire. She's upset with the district. She's unhappy with the direction things are going. She's not adapting to the changes well. She's completely ignorant. Could I have changed her thinking?

My guess is probably not. But I'd like to think my reaction maybe will make her think before she speaks next time. Probably not though.

The heart wrenching thing is this: Kendall will be going to that school. If they haven't changed their perceptions by then, we are in big, big trouble. Kids are led by example. Some days I think Kendall really is changing people. She's changed our family and friends for the better.

It makes my brain crazy to think that people say things like this. People may even say things like this behind our back. But to say it openly in front of a whole group of kids, and then defend what you said...makes me realize this battle hasn't even begun.

I wish I was the type of person who could look the other way and not worry about it. But I can't. That's not in my genetic make up!

The R word battle is exhausting. Fighting and defending people who don't always have the means to defend themselves has been laid on my heart. Not by choice. But it has. I can't turn my back on that. I've wanted to, but I can't. I owe it to my children to keep fighting, right? Whatever.

AAC Evaluation

2011-09-27T07:28:00.000-07:00

It's clear to everyone involved with Kendall that the area of most frustration for her is her inability to communicate. She nods yes and no, and will sign all done, eat, and wave hello and goodbye. She also has an expression where she pulls her fists together, grits her teeth, and shakes her head from side to side quickly when you guess what she wants incorrectly. Its very cute and very sad at the same time.

At our initial ARD (known other places as an IEP meeting) I requested an Augmentative and Alternative Communication evaluation. They needed to observe Kendall in the classroom with her teachers and other students in order to get a clear idea of what she needs for communication. It was also important that we address the way in which she will access the device, and set it up correctly so she can have independence and ownership of it from the beginning.

Yesterday I spent a few hours at the school for the final phase of Kendall's AAC/AT evaluation. The evaluator is contracted by our school district and brought a wealth of experience, suggestions, and knowledge to the meeting.

For the first time, I finally feel like I have a good understanding of the process. We will go back to ARD in a few weeks to get everything from the final report added to her IEP.

For those of you interested, and to bullet point this for my own future reference, here are a few highlights of what I learned yesterday.

*Kendall obviously will need an AAC device
*More than likely, we will go with an eye gaze system
*The district will purchase the device, and Kendall is allowed to sign it out, and take it home.
*This device will be her voice. The use of it will be her idea. She will explore language the way typically developing kids do. We will not tell her to "touch the button" or "make it talk." But we will use open ended questions and encourage her to do it on her own, and in her own time.
*Her IEP will include an action plan for training, and implementation of the device for our family and teachers/therapists.
*We will demo as many devices as we decide in the upcoming months, but will have a low tech communication system/ipad in place as we decide which one is best.

I've known from the beginning that the ipad wouldn't be the end all be all for Kendall's communication. We use it for games and stories. She needs a device that is just for communication and can be easily mounted in different areas. She needs a device that is able to do a few more things to accommodate her dystonia and work effectively. The ipad was a great start for us. Mostly for me to gain an understanding of how programming works, and discover what Kendall is capable of in her motor planning.

The biggest aha moment I had at the meeting was that everything we are doing now, is preparing her for bigger and better things. First, she will start out with one word symbols. We will build on her "language" as we go. When she gets to the point where we are ready to add verbs and adjectives, we will. So, just as a typically developing child gains language and literacy through every-day experiences and social interaction, so will Kendall. In the future, building on these things will enable her to gain reading and writing skills expressively too.

I'm sort of excited for a fresh start. Between our outside therapist, and the school team, I'm certain we will pick the best device for Kendall and make a plan. I think the iPad opened the door for a lot of things for her. She has already mastered one word phrases, and we've included a lot of buttons that have sentences, etc...and I think she understands this. I'm excited for her to create her own, and express her own thoughts independently.

SO, this was a huge development in our world. I'm excited to see how this year pans out. The first six weeks of school is wrapping up...and I feel like we've already accomplished a ton!