Kendall's Hope

EXclusion: GenEd Vs. SpEd

2013-03-28T12:35:00.001-07:00

Many of my close friends know that a few weeks ago I had a terrible slap in the face when it comes to the inclusion of my darling girl. In her IEP it looks great. She has had inclusion time in a general education pre-k (something we really had to sort of fight for because in Texas she is not pre-k eligible....well technically she is for PPCD because she has a disability....but not for low income or foster kids, or military kids...but that's another story). Anyway, I quickly found out that maybe some of the people involved in her education do not share the passion and love for inclusion that we as a family feel.

Long story short, the Pre-K kids that Kendall spends a large part of her school day with were taking a class picture. The teacher and aid of that class asked if they could take one picture with Kendall and one without Kendall. Mind you, there were other PPCD kids in the picture that were not asked to leave (not in wheelchairs) Of course when I got wind of this I exploded with every emotion possible. I followed that with e-mails and phone calls to people in administration. I had quick replies....but not a lot of follow through. Their solution? A book study on "Out of my mind" a great FICTIONAL story on an inclusion fail. I think the book's great...don't get me wrong. It gives great insight that a child with cerebral palsy or dystonia can still have normal or exceptional cognition. But it is a children's book. I guess I was hoping for a more research-based training. Then I realized maybe they don't know how to do that.

In favor of giving both sides of the story... the general ed pre-k teacher called me a few days after the event happened. She stated that she did not ask for Kendall to be out of the picture, simply that she wanted her wheelchair out of the picture. Whatever. Like that's any better. And besides, there were way too many people that heard her to back track. She even tried to blame her aide. Again, whatever.

To further the heart wrenching event, the rest of the girls in the pre-k class did end up taking a picture together without Kendall. Shame on them. Shame on the moms in the room when it happened. Shame on the person who took the picture (the pre-k teacher) Shame on them all. But are they really to blame?

I also found out that a few weeks before, they did a Pre-K circus. Kendall wasn't invited to be in it. Other PPCD kids were. Kendall was not. Again they excluded her.

We had Kendall's ARD to determine our plan for next year. During the ARD the pre-k teacher wasn't going to comment when we discussed Kendall's present level of academic functional performance. I leaned over and asked to hear from her. She said...and I quote "Kendall loves being in my room. She has fun while she's there. I love her smile." Ok. Great. My kid has a nice smile and likes being around other kids. That's ALL you have to say about her time in your classroom? Oh, wait. I forgot. She's not really your student. She's a visitor in your room. And this ARD is to discuss the placement of a student in a general education classroom. We could have used a little more. (and by the way, she wasn't even going to come to the ARD.)

Now, the district can get upset about this and what it does to their reputation, etc. But what are they going to do about it? Who's job is it to train general education teachers? Is it the Special Education Teacher's responsibility? Support staff? Because those are their peers. It really holds more of a punch when it comes from administration. Plain and simple. Not to mention some special education teachers really don't buy in to inclusion either. They almost "like" the idea of being the "special" teachers. Some of them even go so far as to tell parents that it's best for their children to be in a self contained classroom with other kids with disabilities...that they should start there because their kid may get ignored in a general education classroom. This infuriates me to no end. EVERY CHILD SHOULD START IN A LEAST RESTRICTIVE ENVIRONMENT FIRST! If you need to make changes later, so be it. I personally believe in raising expectations (especially for kids who are multiply involved) and supporting them with accommodations and modifications. It's 2013 for God's sake.

I can go on and on about how hurt this made me. It's the big picture that really hurts my heart. My darling little girl had to hear adults talk about her like she wasn't good enough to be in a damn picture. I'm not sure I'll ever get over that.

But we are moving forward. Kendall will be in her Gen Ed Kindergarten class next year with her neighborhood kids. She'll receive resource support during "intervention time" which is suppose to be during individual work time. She'll have a full time nurse that will assist her and her personal care needs. She'll have resource teachers taking her for one on one instruction 30 minutes during math and 30 minutes during reading. She'll be with her peers every other minute of the day. It's official.

Licking my wounds and marching on.

A Least Restrictive Environment...

2013-03-06T06:13:00.000-08:00

A least restrictive environment requires that each local education agency ensures to the maximum extent appropriate that children with disabilities are educated with children who are not disabled. The Texas Education Agency states that “special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.”

Kendall’s turning five next month. I can’t believe it. Time flies…and keeps on flying. My thoughts on the above topic have evolved greatly in these last four years. I was a general education teacher for five years right out of college. I never in my life had a “special education” college course or class. In my first few years teaching at a Title One school, my eyes were opened quite a bit. I never had an entire room of children on grade level. In my teaching career, I always had to individualize my lesson plans for my kids. I was taught that was best practice. I never passed out worksheets and gave the same spelling list to my class. I just didn’t. I couldn’t.

So, I guess what I’m saying is, I don’t understand what the push back is! I never really had any multiply handicapped children in my third grade classroom. I had kids with emotional disabilities, kids with learning disabilities, kids with “dyslexia.” I would like to believe that if I did have a child with multiple disabilities, I would have embraced the challenges to find a learning style and form of evaluation that worked for that child. My job was to educate children. All children. I expect the same from teachers for my own kids now.

I do understand that teachers are overwhelmed. Often times, they don’t have the support they need to complete all of their tasks. They spend too much time getting kids to pass a test….blah, blah, blah. But the bottom line is: they are teachers. They get paid to be teachers, and if they don’t like the job or the work involved, they need to retire or find a new career path! Period.

So for me, it’s really a no brainer. Kendall is turning five. The law says she can go to her home school and be educated with her nondisabled peers. So, that’s exactly what is going to happen. I have a meeting scheduled before her ARD at the end of the month. If her present levels of performance lead us to goals that are academic (and by that I mean, in line with the TEKS “Texas Essential Knowledge and Skills” for kindergarteners) there shouldn’t be any problem. Making sure she has goals that don’t set her up for failure is my priority.

I plan to be pretty specific in her IEP on a variety of things, and I am hopeful our ARD committee will see things my way.

But we all know that the best laid plans don’t always go the way you expect. There are a lot of things that factor into the success of Kendall’s inclusion. She has to have administrators and teachers in her new school that share our vision for Kendall. I’m not worried about the other kids. Kids embrace Kendall. That’s obvious pretty much everywhere we go. Usually, it’s the adults that hold them back.

I won’t stand for Kendall being left out, discriminated against, coddled, or blending into the background. I expect her to be treated like every other five year old at school! And as of this moment, my gut tells me this is doable. We’ve come a long way so far, and I just know she will progress leaps and bounds side by side her non-disabled peers! (with in class supplementary aids and services of course).

Surgery and More Surgery

2013-01-05T07:16:00.001-08:00

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!

2012-12-26T07:14:00.000-08:00

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

2012-12-24T08:03:00.000-08:00

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.

2012-12-22T06:13:00.002-08:00

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

2012-10-20T17:21:00.001-07:00

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...

2012-09-05T07:19:00.000-07:00

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!

2012-08-20T13:48:00.000-07:00

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

2012-07-24T17:03:00.000-07:00

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.

Summer School

2012-07-11T18:15:00.000-07:00

I honestly can't believe I haven't blogged in so long. I feel like I have been in a bit of a twilight zone. In the aftermath of Kendall's seizure drama, I think I've been very consumed with work and not really acknowledging that we almost lost our girl. It was a very. close. call.

I guess I've been on auto pilot. The days just keep flying by and I'm not doing a lot of over thinking. Honestly, it's been a welcomed distraction. With that said, my emotions vary each day. Today was one of those "over-thinking" days. Should I be working? Am I really doing what I'm called to do? When I think about my kids during the day, I get a lump in my throat. Being a working mom is tough. Being a working mom when your child has a shorter-than-average-life-expectancy creates even more guilt.

I know Kendall is in amazing hands during the day. I know each day I am making a difference in families who are where we once were. I'm literally getting paid to pay it forward....but in the throws of doing that, am I short changing my own kids? Was it too soon? Ugh.

Moving on....We received sad news last week that my mom's cancer is back. Her surgery is scheduled for July 23. Just when you think you're out of the woods.....bleh. Please keep her in your prayers. We are praying that it hasn't spread into her bones or lymph nodes, and that the surgery doesn't involve the plan B.

Kendall Ann started summer school this week. Extended School Year is an ARD committee decision....and for Kendall her loss of self-feeding skills and emerging skills with her communication device qualified her. (The fact that the two of those things are reciprocally responsible for each other is a whole other post!)

This was her first experience on the bus. Things have gotten better, and thanks to her VI team creating a book about riding the bus, she continues to warm up to the idea. It was reported to me (SINCE I"M WORKING AND CANT BE THERE TO SEE FOR MYSELF) that she's gotten better and shed less tears.

Enjoy the photos. I promise to post again soon when I'm in less of a funk :)

My Nightmare

2012-06-17T05:54:00.000-07:00

I'm writing this post from the slowest wireless connection in the history of wireless connections in then pediatric intensive care unit at Cook Children's Hospital.

On Friday, my worst case scenario with Kendall and seizures happened. Only, it was worse because it happened while I was at work with a dead cell phone battery. I received a call from my dead cell phone (no idea how it even turned back on to ring) from Kendall's home health nurse. She sounded calm but I could tell it was something serious. In fact, the first words out of her mouth were "Jocalyn....this is an emergency."

The next thing I remember is her saying Kendall was unresponsive and she was waiting on the ambulance.

My drive home with a dead cell phone was the worst experience ever. I felt helpless and panicked and ran every terrible scenario in my head. When I arrived at my house the fire truck had pulled away and the ambulance was nowhere to be found. I'm not sure why, but I darted inside to an empty and still house. It was there I broke down screaming, crying, and the rest is a blur. I managed to finally have enough of a charge on my phone to have my blue tooth pick up in my car, and I called 911 to see where I needed to be. The dispatcher wasn't suppose to tell me over the phone where Kendall was in route to, but he did. I drove to my dad's and he drove us to the hospital. He was just as panicked as I was, but handled the stressful drive under pressure with ease. (but make no mistake, I plan to take the stickers and magnets off my car because I don't want to be identified as that crazy person driving ever again!)

When we got to the hospital, after I just about screamed at everyone in the ER for not moving fast enough, I was able to set eyes on my baby. It was a familiar scene. Lots of people surrounding her still body. The ER Dr. explaining to me that she may have had a seizure and was having trouble breathing. She was going to need to a breathing tube to give her some help. Her labs were coming back one right after another. They did a chest x-ray and a CT.

I was relieved to see my husband arrive in one piece. All I had managed to get out to him while he was at work was Kendall was unresponsive and in an ambulance on the way to Cooks. I'm sure his drive in Ft. Worth traffic was one of the longest drives of his life.

I usually run worst case scenarios in my head. This time it was no different. The thoughts I was having about the outcome were pretty bad. And at that point I didn't even know the whole story.

As we were still in the ER, I pieced together the story. It became completely evident how lucky we were that Kendall was starting to respond, and breathing on oxygen without a tube. (apparently a bold move on the ER Dr.'s part....but one I'm glad she made)

At home with our nurse, Kendall had stopped breathing and had no pulse. Our nurse checked her blood sugar, gave her rescue breaths and compressions, and moved at record speed to save her life. I can't say I would have responded that quickly or appropriately if there on my own. So, thank the Lord for our angel Angelika!

The Pastor from my parent's church was there and prayed over her during some very stressful minutes. He asked what specifically we were hoping for, and my first thing to say was no further brain damage and the seizures to stop. The chaplain in the ER prayed with us too. The nurses and Dr.'s and techs were calm and swift in all their actions.

We were sent to the ICU...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Sunday morning....

After three stressful days and two sleepless nights in the ICU, we *Justin* were able to convince the hospital we could be discharged from the ICU to home instead of any additional time on the floor. Probably not a very common practice, but in Kendall's case, her endocrine issues that had developed because of the stress of it all we were equipped to handle at home. The 24 hour VEEG did not show any seizure activity and from a neurology standpoint, we were in the clear. Also, her CT scan did not show any new damage. Thank God.

So we are home. Slept in our own bed last night and got some serious rest. I still have a lot swirling around in my head about why this happened. There are three possible thoughts....Mitochondrial Disease (since her CO2 levels were off the charts...but that can happen with seizures too) some sort of sleep apnea, and depending on which Neurologist you talk to, it was just an isolated incident.

Either way, we are working on a new game plan. It may or may not involve a sleep apnea monitor at home, oxygen, or new meds. Currently, we are just adding L-Carnatine (one of the Mito cocktails) and using Klonnopin in times when she may be sick and more susceptible to seizures.

We will survive this. PTSD is just now setting in on me! But, surprisingly we feel OK about it all, and very, very, very lucky.

Thanks for your continued prayers!

Back to Work

2012-06-07T17:03:00.000-07:00

I can't believe I haven't updated my blog in so long. It has been almost a month...and what a month it's been!

I started back to work last week. It has been a journey. People ask me if it's hard to leave Kendall during the day, and the answer to that is no. There were no tears shed on my side going back to work. We have such a great system with her therapists, and beloved nurse, Angie, that Kendall hasn't missed a beat in her routine. In fact, honestly I can say that when I come home I'm a better mom. I've always said I was a better mom when I'm working, and I believe that still holds true. I'm better with time management, prioritizing, and organization. I am a people person. I enjoy being out in the world. Taking a shower in the morning, and actually putting make-up on has made me feel human again. Staying at home was extremely hard for me...even with help. There's always something to do...closets that need to be cleaned out, baseboards that have accumulated dog hair, loads and loads and LOADS of laundry. And don't get me started on how Pinterest has stressed me out and made me feel completely inadequate! Long story short, going back to work has been an answer to prayer.

Now, without going into detail about what I'm doing...I will say I have had a bit of an emotional journey with it all. I have a burning desire to advocate for families that are in situations similar to what we found ourselves in during the dark days of diagnosis with Kendall. For me, it's more of a calling than a job. But during the past few weeks in the standard trainings and modules on company policies, I've found myself extremely frustrated with the system...and the training on patient rights and stories about abuse to children and people with disabilities just about set me over the edge! There were many, many tears shed that day. But I think I am getting tougher, and I am certainly learning a TON!

My dear husband has been out of town on vacation for a week...it was just bad timing...but he comes home tomorrow, so I'm hoping I will gain some sanity again this weekend.

The kids are enjoying summer with Kamden in a lot of camps, and Kendall doing Yoga in the living room! It was reported to me today she sat unassisted (but with our nurse right next to her on the floor) petting the dog for 45 minutes! That girl has come so far!!! And our OT is working with kineseo tape on her mouth and I watched a video of her wrapping her lips around a straw and sucking. Very exciting!

My parents, as always, have really stepped up to the plate to help me this week! My mom has made dinner the past four nights, and my dad is here every morning until our nurse arrives and helps out during the day with Kamden. In the afternoon my mom swims with Kendall and reads to her. Truly, it takes a village! But we are sooooo blessed and thankful to have the one we have :)

I'm happy. My kids are happy. Life is good.

(and I'll end on that note and save the details about my endeavor to change some of our school district's "policies" for a later post.....never a dull moment!)

Neuro and Endocrine...

2012-05-19T05:43:00.000-07:00

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...

2012-05-14T05:23:00.000-07:00

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.

2012-05-12T04:59:00.000-07:00

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

2012-05-10T07:20:00.000-07:00

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!)

Four.

2012-04-30T05:18:00.000-07:00

On Friday, my baby girl turned four.

It was quite a week with appointment after appointment. We did Botox two weeks ago, and while Kendall had a massive headache a few days after (resulting in a frantic trip to the emergency room), she is already reaping the benefits!

We did it under general anesthesia. Because we needed to go so deep into her hips that was necessary. It was a quick and relatively painless morning (for me) and Kendall seemed unfazed. We didn't see any results until about a week later. It was then we went to our scheduled orthopedic appointment to do x-rays and revisit her hip surgery situation. To our delight, we discovered that her hips had gone from 60% subluxed to only 40%. Progress indeed. So, we have bought ourselves a summer of swimming instead of a summer of surgery and casting. I'm thrilled beyond words.

We had a small family gathering in celebration of her big day. We've decided to hold out and have one big party in a few weeks to celebrate the end of school, beginning of summer, and Kendall's birthday. I'm cutting myself some slack this year. Between my heavy course load and the number of times I've had to go to Austin for school...April came and went in a flash. Everyone in my family caught a nasty virus in the past two weeks, so things have been a bit frazzled around here!

I was able to snap a few pictures before I had to leave town on Friday. I'm super behind on blogging, and do have quite a bit to share...but it'll have to wait for another day :)

An Amazing IEP Meeting!

2012-04-11T14:21:00.000-07:00

Kendall's IEP went remarkably well. It was a reminder that there are people in the world working with this population who truly have a passion for it. I have heard so many horror stories along the way. Issues families have had with different districts (and our district) that make your hair stand up straight...but I'm happy to report this ARD was incredible and I attribute it to the amazing group of people who work with Kendall everyday.

Obviously Kendall's very involved. We have PT, OT, SLP, AT, MT, TVI, O&M, RN, LVN, etc! Basically the entire alphabet.

For me, it was amazing to watch things go so flawlessly. I attribute it to the great communication skills each of them have. I had her goals before the ARD, the diagnostician always crosses all her t's and dots all her i's! The principal shares the vision for her school that we have for Kendall. It truly was amazing. And an example of how things should go....for everyone....everywhere.

Some of the highlights include: Kendall will attend summer school this summer and ride the bus. (She has an emergent skill that qualifies her, and a digression too) I decided (yes, I did!) to let her ride the bus. I think she will probably love it, and it will give me a chance to see how things go this summer doing it before we commit to it for next year. This will be a big factor in me going back to work.

We also discussed a little of Kendall's "learned helplessness." Not a big surprise to me. I'm an enabler! Thankfully her teachers have no problem raising the bar for her independence! And I am going to try to follow suit more at home. It's just really hard. She's still so little...and so stinkin cute! But I certainly don't want to cause her to face more challenges than she already does.

I read an article the other day that addresses this exact issue. It was about how kids with multiple disabilities develop adaptive and challenging behaviors (hmh...imagine that!) It was focused on a behavior analytic approach to a child's behavior in order to "enable the child to live as independently as possible while being fully included socially in the least restrictive environments that offer ample opportunity for physical, cognitive, emotional, and social growth and enrichment." (Koegel, Koegel, & Dunlap, 1996) Some of the approaches to managing this behavior as referred to in the article...are positive reinforcement, planned ignoring (extinction), negative reinforcement, and punishment. Since this is exactly what we want for Kendall as parents...Justin and I are committed. Game on, Kendall!

So as we approach Kendall's 4th birthday, I'm happy to say we have seen great strides in her development in a number of areas. She's completed her first year of school,enjoyed every minute of it, and will continue to excel. I'm sure of it!

Last summer I attended a seminar about inclusion. It was probably the best thing I could have done. In that seminar, I received a bookmark from Texas Project First www.texasprojectfirst.org The site is amazing and has a plethora of information for parents. They encourage you to come up with a "vision" for your child. It is something that should be shared with all professionals that come in contact with your child. After reviewing parent examples, I ~~completely plagiarized~~ reworded one that really felt like our vision for Kendall. I have since given it to everyone on our team with a super cute picture of Kendall..and I believe they too now share our vision. I will share it with you below:

Our Vision for Kendall

Our family’s vision for Kendall is simple. We want her to have the same opportunities as any other member of our community. We want her to live, love, and achieve whatever dreams she desires. We feel very strongly that her school experiences will play a major role in her accomplishments. We hope to form a partnership with all of her educators in order to make this happen.

One of the most important things to us as Kendall’s parents is that Kendall be seen for what she can do and not for what she cannot do. We appreciate the environment that surrounds Kendall in our Mansfield community. We dream of a community where differences are accepted and attempts are made to educate those who may be fearful or ignorant concerning the culture of disability.

We want Kendall to reach her full potential academically and socially. Both areas hold equal importance to us, and to Kendall’s future success. If she is part of a community where all children are valued and belong, she will know it and will rise to the occasion. We are confident that environment will exist in Kendall’s lifetime.

Presently, one of our biggest goals for her is communication. She is a very bright girl with a lot of emotions and thoughts. We hope to assist her in finding her voice, whatever form that may be.

The following values are important to us as a family:

· Kendall is loved and her strengths are celebrated

· A school environment exists where diversity is nurtured and celebrated

· The use of People First Language is expected and adults model appropriate responses to questions regarding differences

· Kendall is never pulled or segregated for any reason without our consent

· We are an integral part of the team that supports Kendall in her education

Our New Addition...and Everyday Videos...

2012-04-02T12:29:00.000-07:00

Things have not been the same around our house since we lost Chloe. Ironically enough, I was the one who missed her the most. To turn a very long story short, Kendall met a Therapy Dog named Chip with me the day after we put Chloe down. Of course, it made my wheels start spinning. What if we could replace our precious girl with another lab....one like Chip who doesn't shed, and has the temperment and training to assist Kendall in the future? So this past weekend we went out and adopted this cutie patootie.

Her name is Addie (Addison Paws Briggs). She is 10 weeks old. She's basically a mutt. Her mom was a poodle, and her daddy a lab, which makes her a first generation Labradoodle. In my humble opinion, she is the smartest puppy that ever lived. She already fetches (and returns it) and signals when she needs to go outside. I'll leave out the most recent puppy behavior...where she tried to take Kendall's glasses off her face and attacked her pony tail :) We plan to do extensive training with this baby girl to ensure she puts her smarts to good use.

Wish.Me.Luck.

We've had some very warm days here of late, so have been outside quite a bit. During a bunch of errands the other day, Kendall's sugar dropped pretty quick. I took her back to the car to give her some juice, and she started a new game. This game is now requested after every feed:

And this video shows how excited Kendall is for the summer and the water to get warm enough
to swim in:

Heavy Hearted Decision

2012-03-19T14:07:00.000-07:00

Most of you know that Chloe Sue and I have had a love/hate relationship from the very beginning.

Justin and I had been dating almost a year when he decided to adopt a pet from the animal shelter. I remember being at one of Kamden’s baseball games when he was five years old and talking to Justin on the phone as he drove his new lab home in his truck. After only knowing her a few hours, he told me “I really think I made a mistake. I thought I adopted a lab…but instead, she’s a piranha.” And so began her puppy life chewing and gnawing her way into trouble.

The first week Justin owned her; we took her to the park and discovered her love of the water. She immediately ran through pond after pond, and her long tail streamed a trail of water as she whipped it from side to side. This eventful day ended in her kennel cough turning into pneumonia. She was shaking and sick…and had her first visit to the 24 hour vet clinic which left Justin footing a gigantic bill. “It was way too much money to spend on a dog.” He claimed. (My husband grew up in the country…)

In her second week of adoption, Justin had to travel out of town, and being the loving girlfriend that I was…I took her in for a few days. In those few days, she tore apart Kamden’s trampoline, ate a memory foam mattress, chewed the strap off a very expensive purse, dug holes in my flower bed, chewed a pair of Maui Jim sunglasses, and ate a total of 3 pairs of heels. I happily returned her to him the second his plane landed.

Soon after that, Justin and I got married, and I read “Marley and Me” on our honeymoon in hopes of finding a peace with that darn dog. In her first year of life, she scratched Justin’s cornea, leaving him to miss work (and me cancelling a business trip) to get to an ophthalmologist appointment and discover a very painful corneal abrasion that left Justin out of pocket for three days. At Kamden’s end of school year party in our new house, she jumped in the pool off the diving board ON TOP of one of Kamden’s friends. She left a gigantic scratch down the side of his face, and left me speechless.

There isn’t a holiday spent at our house where Chloe hasn’t eaten something off the table. She’s stolen countless briskets and food off the grill and smoker. She’s caused a plethora of arguments between Justin and I, and Justin and Kamden…

But one thing is for sure…she’s been a loyal and very loving dog.

When Justin’s out of town on business, she sleeps in the front room on the couch guarding our home.

She plops down on the couch and tolerates Kendall’s pats which sometimes get pretty rough.

She follows me from room to room just to make sure everything is OK.

When the boys were outside playing in the pool or yard, Chloe has provided hours of protection and entertainment.

Once she saved Kamden from drowning in a creek. I’m pretty sure I blogged about that.

In the early days of Kendall’s diagnosis, it was Chloe who sat at my feet in the bathroom while I cried on the floor. She’d lick my hands and stay by my side.

She rode in the back of Justin’s truck and accompanied us on many ice cream runs, or trips with Justin hunting and to the farm. She was her happiest with the wind blowing in her face. Rides in the truck took a close second to swimming. And her eyes always told all kinds of stories.

No, there hasn’t been a day go by where I didn’t get on to her for something or kick her out of the way. But despite all of these annoyances, expensive mistakes, and near catastrophic accidents, she’s been a good dog. Her mere presence was a constant in our lives.

Chloe has been losing weight consistently for about four months now. We ran a bunch of tests, spent a bunch of money on medication, and have been force feeding her pureed dog food through a syringe since Thursday. She’s been spending more and more time on her own outside, and it’s become very difficult for her to move. It may be cancer, it may be a blockage, it may be a fungus, we may never know. But she won’t eat, she can’t sleep, and the time has come to put her down.

So today with very, very heavy hearts, we will say goodbye to our little piranha. Our house and walks will never be the same…

Chloe Sue, you will surely be missed. You will always remain in our hearts. XOXOXO

Loads of Updates

2012-03-11T08:13:00.000-07:00

I finally have a minute to sit down and gather my thoughts! January and February were filled with a plethora of Dr. appointments, tests, and illness for my sweet girl. I counted on my calender that we visited Cook Children's Medical Center 28 times. That's insanity.

I'm taking two very intense classes this semester that have also required a lot of my time and energy. Taking classes as an adult is a whole different ballgame! And taking classes that also relate directly to my own child sometimes makes my head spin. I feel like my brain has been on overload, and I've sort of buried my head in the sand regarding some of Kendall's most recent health issues.

Also, for the first time since Kendall was born, Justin and I took a vacation TOGETHER!

There was a lot of planning involved to make that happen. It was a group effort between both sets of grandparents and our nurses. My dad spent over a month every three days learning how to change out her insulin site, and work all of her equipment. He's 73...but had the desire to learn....so he did! Our family all pulled together and made sure my kids (and dogs) were happy and taken care of.

We had an amazing time skiing and relaxing with my sister and brother in law for 5 days and 4 nights! Our view every morning was phenomenal:

We had a great time shopping and site seeing in downtown Park City:

The snow was great, and Justin and I had our ski legs by the end of the trip! Kristin and John already had theirs!

There were a few pretty entertaining falls, but thankfully no broken bones. And the company was great.

It was a much needed, and very enjoyable time! We were anxious to get home and see our sweet babies though. Unfortunately, we came home to this:

Poor Kendall had a runny nose the whole time we were gone, but no fever. By Wednesday of this week she continued to be super cranky, so I took her to our pediatrician. Low and behold she has strep AGAIN.

The cute glasses she's wearing in that pathetic picture are brand new from her last examination under anesthesia. Her new prescription also has a bifocal. We're hoping to see major improvement in her vision very soon. Also, it was determined that her eyes have grown enough for IOL's. That means in the next 6-12 months she will be able to receive the lens implants we have been anticipating since she was 5 months old. This definitely presents the possibility of MAJOR vision improvement. And smaller glasses! Oh, and check
out her new sunglasses:

Kendall's Sleep Safe Bed finally arrived also. I'm proud to say she has napped in it, but has not slept in it at night...yet. Baby steps. We really like it. So does our skinny lab, Chloe. It is much nicer than I thought it would be for a "hospital bed." It has a wireless remote that brings it up and down. This will certainly help with her congestion. The only problem is, she hates the sound of the button clicking and it moving while she's in it. We are working on ways to make her less sensitive to that.

We have finally ordered her power wheelchair. I didn't want to jump the gun on ordering it because it's such a large and expensive piece of equipment. It will also require us to adapt our van and make some additional modifications to our house. We are considering allowing Kendall to ride the bus to school when it comes in. All of these things will be pretty big changes, so I wanted to make certain she was ready. It was determined by her team that she is ready! So...this summer should prove interesting as Kendall learns to drive. By the way, it is all black with pop star pink rims! I plan to add some vinyl decorations to customize her ride too!

We finally met with our Neurologist regarding the Orthopedic Dr.'s recommendation for Botox. It is now scheduled for April 12. We are going to have it done under light anesthesia. He will do her psoas, which goes pretty deep and three other locations in her legs. He also has plans to do her left elbow and shoulder, and hand. We are leaving her right hand alone. (We also have night time and day time splints on order from our orthotist) During that visit, we shared with our Dr. about Kendall's recent bladder issues. He immediately blamed the Artane (she was on 3mg 3 times a day for her Dystonia) for the urine retention. He suggested we wean her off of it quickly, and see if the benefits outweigh her having to be catheterized every day. The verdict is still out on that one. But I was very thankful to have a Dr. look at the big picture. I feel like we could have avoided all of the drama last month if we had seen our neurologist first.

We also visited her Endocrinologist who reported her Hemaglobin A1C to be a 7.2. This is up from her last one, but not terribly bad. We will be tightening the reigns on her insulin pump parameters, but didn't want to make any major changes before we left on vacation.

And finally...it's that time of year. Kendall's ARD is scheduled for March 27. Her AAC demo is complete. We have decided on the PRC device with the MinSpeak language system. Since her vision is changing, we aren't going to set anything in stone yet on mounting and placement. We are adding a key guard for the eight squares she's been working with. I kind of feel (much like the power chair) that when we receive one that is strictly for her, we can customize for Kendall...using it at home and in different environments...eventually she will get the hang of it!

Whew, that was a lot, and I'm sure I left some things out. The kids are on spring break this week, so I'm excited to take a break with them too, hopefully enjoying the beautiful weather and healthy kids :)

Kisses

2012-02-28T14:17:00.000-08:00

Kendall's pretty specific on who she thinks should get kisses....as caught on tape in this video!

Trouble...

2012-02-23T18:25:00.000-08:00

So I've been MIA for a while now. Justin's been traveling, my course load is out of control busy, and Kamden is keeping me busy being his usual 11 year old self. I'm not complaining...things are pretty good around here. We finally have some answers and a game plan with Botox for Kendall, Diabetes control, and her bladder issues, but I will post more on that when I have a clear head!

In the mean time, here's a video about Kendall's time-out situation at school. I wouldn't say she's defiant...but this past week at the hospital with our nurse, I watched her have a big ol' 4 year old fit. I got down on her level to reason with her and try to stop her angry behavior, but failed miserably! I've had tons of training in education and child development...but I've never been very good at it with my own kids. I'm a softy. And with Kendall, it's even worse. It's becoming more obvious to me that I'm an enabler, and that's not OK. It will only cause her problems in the long run. I've never been a spanker, but saw very positive responses in Kamden when he was put in time out. So, I mentioned it to her teacher yesterday afternoon and she explained to me their method at school. Later that night, I talked with Kendall about it, and here's how it went:

( I had to shut off the camera because I was laughing so hard....again...I suck at this with my own kids.)

Daddy/Daughter Dance

2012-02-12T07:35:00.000-08:00

Kendall and Daddy attended their first Daddy/Daughter dance on Friday night at Kendall's school. They had a great time fast dancing, slow dancing, and eating cookies. Kendall got a pretty rose, and she's all smiles when you bring up the evening.

They must have had a blast. And I can't wait to see the professional pictures! Apparently Kendall's teacher was able to do the "mommy" thing and get her to smile in pictures. I'm sure they're beautiful.

While Kendall and Justin were at their outing, Kamden attended his monthly SibShop hosted by our hospital. This month they went to an indoor water park and ate pizza. When I walked him in to the center, I was amazed at how many friends he has in that group. He calls them his "friends who get it." I'm so grateful he's developing relationships with other kids who endure similar situations at home with their siblings. And I'm thankful for the child life specialists who make the support group so fun.

Kendall did go to the ER for croup last Tuesday, and we cancelled our video EEG. We caught the croup early enough to avoid a racemic epi treatment and just give her a steroid. Her sugars were over 300 all day Wednesday, but she was back to herself by Thursday morning. Her little body is getting stronger.