Three.

Dear Kendall,

You made it. The Dr.’s said you wouldn’t make it past early childhood due to your seizures. I asked them to define “early childhood” and they said the magic number was 3. I have dreaded this birthday ever since.

3 has been in my head for a while now. Turning 3 means changes. No more early intervention services. Big girl pre-school will begin.

In all my education classes and parenting workshops, they stress the importance of the first three years. Apparently that’s when your personality is formed. That’s when you start dreaming while you’re sleeping. That’s when it’s safe to feed you pretty much anything. The list goes on and on.

3 is the magic number in regards to CP too. Apparently if you are sitting independently by the age of three…that means you may walk someday. Walking is over-rated.


These time lines used to be so important to me. I desperately wanted to know what to expect. I wanted answers.

Therapies consumed my life. Finding the next best thing was the most important goal of each day I had with you. I wanted no stones left unturned. I wanted to know that in those first three years, we tried everything.

I wouldn’t trade any of the days I’ve had with you these past three years. Even the ones where you screamed for hours on end. Even the stressful times in the hospital. Or the fighting with insurance and school districts! All of these things have brought me where I am with you today. Quitting my job to stay home with you was the BEST decision I could have ever made.

These past three years taught me to live in the moment. I have learned more about people, life, and love in these three years than I have in my entire life. All of these things thanks to you.

I don’t know what the future holds for you. I don’t know what the Mitochondrial stuff means for your precious little body. I don’t know what growing will do to your joints and bones without walking or sitting independently. I don’t know what it will do to mine either! Those things are out of my control.

What I do know is this: Your daddy, brother, and I will continue to make sure you live a happy life. We will not let your diagnosis define you. We will continue to let you have “normal” three year old experiences. We will hold you and jump on the trampoline. We will put you in the stander and let you chase the dogs. We will push you in your chair to feed the ducks. We will hold you and let you splash in the puddles. We will douse you in sunscreen, cover your g-button, unplug your insulin pump, and let you swim in the pool. We will enjoy the spring afternoons at the zoo . We will help you make friends, and make certain we have done everything in our power to educate people to treat you the way you deserve to be treated. We will fight for you no matter what.

Three is just a number to me now. My lucky number.

Love, Mom

The Verdict on School...

First, as a disclaimer...I feel I need to explain my intentions of my blog. Like most parents of special kiddos, in the early days, blogs were my safe place. My place to vent. My place to commiserate with others. My place to give back to our special needs sisterhood. It was where I felt safe gathering new information that would help me along in my journey, and sharing my trials and tribulations along the way.

Yahoo groups came and went for me. I learned a lot, but found myself addicted to my crack-berry and feeling discouraged and overwhelmed with the hundreds of e-mails I got each day. The blog-o-sphere I could control.

There is something very therapeutic to me about writing my thoughts down. Always has been. I have hundreds of journals and scraps of paper accumulated through my life that let me get out the good and bad. Because Kendall has so many people that love her and work with her, my blog also allows me to only have to tell the same story once. I even tell my sister to read my blog when I can't relive things again :)

It keeps family updated on our happenings too. I print it out to keep my family pictures and year in a book on my shelf.

With the growth of Facebook, Twitter, etc.. a lot of other people I don't know read my blog too. I have never had to filter my comments, because for the most part, people are very supportive.

I never want to hurt anyone. I never want to talk about people behind their backs. I will never say anything that is not true either. Though, I am the first to admit when your kids are concerned, and emotions are involved...different people can have different takes on the same experience.

That is where I stand with our school district. But since this is MY blog, MY space, I will now give you MY take on the meeting today.

The director of nursing didn't make things any better. He said he tried to call me back...which he didn't. He said his assistant took down my number wrong. Which she didn't. She confirmed my phone number off of her caller ID. I should also point out my number is correct on all the documents in Mansfield ISD. Nobody else had difficulty calling me. He made no apologies, and even made a joke about the meeting on his way in. (I was sitting in the office) He is an ass. He will NEVER be in charge of my daughter's care. EVER. I am shocked he holds the job he does. He tried talking to me about funding and used the term Medicare instead of Medicaid over and over again. He told me he just spoke with the district attorney and they said it was not possible for Kendall to use her CCP hours (our nursing hours paid for by Insurance and Medicaid) while in school. (I wasn't aware that this meeting was a time to call attorneys...or start throwing the attorney word around)

The Director of Special Education stated it is a district by district decision, and Mansfield has a policy that states CCP hours cannot be used. I asked to see the policy. When and if I receive a copy of that policy, I am looking forward to seeing who wrote such a policy that would require a public school district to pay for things that they don't have to pay for. I was also intrigued when the Director of Nursing told me the funding doesn't come form the SHARS funding, but the district revenue. What a complete waste of District money during a time where teachers are not getting raises, their class sizes are increasing and conference periods decreasing.

The band aid placed on Kendall's IEP (the amendment we made today) states Kendall's private duty nurses will be allowed in the school to train the district provided nurses on Kendall's norm. This is due to a recent letter I received from our Dr. stating Kendall needs nurses who know her. We will have this in place for 45 days. Then it will be summer, and we will start again in the fall. I will get to see first hand the quality of nurses and if they are able to provide better "continuity of care" than our current arrangement.

At first I was upset about the lack of resolution, but I understand. There is no guarantee we will even have Private Duty nursing past the cuts in May. Kendall doesn't have a trach or vent. So it is a very real possibility Mansfield will have to provide her care at the school at some point.

I'd be lying if I didn't seriously consider doing home bound education, or enrolling her in a private pre-school where her CCP nurses can go. But I have come this far, and we will be facing this decision eventually. I truly want what is best for Kendall. I think PPCD is the answer. I'm not going to quit now. But I'm not going to allow her to safety to be compromised. We have options. And the District has a responsibility.


I left the meeting with my head spinning. And I'm still not understanding why they want to pay to have a nurse shadowing our nurses who are already paid for. I also don't understand why it is OK to have our nurses in there for 45 days, charting and having sole care of our daughter, but only for those days. It sounds a bit contradictory to me. But I'm just a mom.

A mom who doesn't let things go and will keep going until she has answers. (or gets the answer changed.)

Birthday Weekend

This weekend we celebrated Kendall's third birthday (the actual day is this Wednesday)

We had lots of friends and family over for the celebration. Kendall did well and enjoyed the day.












On Sunday, the kids enjoyed an Easter egg hunt in the front yard. I think Kendall was interested in what was going on, and seemed to enjoy the craziness of the ordeal :)











On Friday, Kendall was showing signs of a unrinary tract infection, crying every time she peed, and throwing fits of rage for no reason. During one of these fits, I yanked her button out and it broke. Just in time for the weekend. We were able to rig it to make it through though. Her urinalysis from last Wednesday came back positive for leukocytes, but none of her Dr.'s were available. Our pediatrician wrote a script for antibiotics, but wanted another sample to send off because the first wasn't sent off for cultures. We rushed around in order to catch a good sample. We did it between appointments and dropped it off in the hospital, while we waited for the surgeon on call to place her Mini-One Non Balloon button! (I've mentioned before...but this button is amazing! It held up for 11 months, without any issues, withstanding Nexium granules and all the pills we crush and shove through!) They fit us in, pulled the old one out, put a new one in, and then it tore apart! So, they placed another one and we were on our way. Another exciting start to a busy week.

Video EEG

When Kendall’s video EEG was rescheduled, I thought to myself… wow, this will be the best one yet. Kendall’s on more of a routine. Her seizures are more predictable. She’s adjusting to new surroundings so much better now than before. She’s off the Ketogenic Diet, so I won’t have to be so rigid with everything that touches her or that she eats. The hospital won’t have to worry about making that KetoCal (heating up the water always throws dietary for a loop.) We aren’t on diluted Humalog anymore, so the pharmacy won’t freak out. I brought her brand name Keppra, so all we will have to do is send that down to pharmacy to distribute, and remember to get it back when we leave. We will get a good reading on her brain activity. This is going to be an easy 24 hours.

One of these days I will learn not to be optimistic when it comes to anything Kendall related in the hospital.

I don’t feel like linking back to previous posts about her near death experiences because of changes in insulin due to hospital protocol, or her sugar drops into the teens in the middle of the night. Or the fact that we were discharged only to return a day later in DKA and spent a week in the ICU.

I try to take everything as a learning experience…and we have learned a lot in the hospital with Kendall. I have most importantly learned to check every.single.thing. the nurses give her. I watch her insulin doses very carefully. I bring all her feeds and medication so I’m prepared and not waiting on pharmacy or nursing staff.

I know my stuff when it comes to Kendall’s diabetes. I know how to work her pump. I know what to do. I know how to read her signs. I know how to go with my gut. Her hemoglobin A1C is evidence of that.

But guess what? Her insulin pump isn’t hospital approved. THE INSULIN PUMP WE STARTED AT THAT HOSPITAL isn’t hospital approved. Our Dr. is the head of the Endocrine Department. We love him. He has fought for us in the past. He makes the call on that rule. Despite multiple people pleading with him to allow us to take over her insulin while in the hospital for only 24 hours, his answer was a firm no.

We arrived at the hospital to have her leads placed at 10am. It wasn’t until after noon that the Diabetic Educator was called in by pharmacy to address switching out the pump. I was defeated, but agreed to do it. (hospital protocol can’t exactly be argued when your Dr. makes it!) At 6pm after I had already managed 2 insulin bolus doses and feeds on my own it was explained to me that the hospital insulin pump doesn’t go down to the rate ours does (.225). So now we were facing a night of sugar checks, the possibility of low lows, and a nursing staff that admitted they would be more comfortable if I was in charge of things. (I wasn’t at all comfortable using a pump I’ve never seen)

So after 11 hours of Kendall not sleeping and enduring the trauma associated with a child with sensory issues getting leads glued to her head and dried (as strangers hold her head straight) we were discontinuing her video EEG and going home. What a waste of time and money.




Fortunately, the Neuro on call agreed that Kendall could be discharged so we wouldn’t have to foot the bill. He happened to be eating dinner with our Neuro at the time who suggested we just wear the leads home and do an ambulatory EEG. So that’s what we did.



The EEG worked out thanks to our Neuro team. But once again, Kendall fell victim to the lack of communication between Neuro and Endocrine.

I totally understand that we needed to change out her pump. I get that it was hospital protocol. But when we found out it would be different insulin rates, and she would need to endure sugar checks through the night, that would have not given us a good EEG reading.

My whole thing is this: If hospital protocol is a priority, they also need to make it a priority to have a pump with a filled cartridge in a timely manner. In my opinion, 8 hours of doing it on my own in the hospital proves that we could have made it 14 more hours. But I’m just the mom.

Kendall has been a trooper through the whole ordeal. She squealed when we found out we were going home, and this morning when I told her we had to go back to turn it in and get her leads taken out, she started to cry.

Spring

Spring has sprung around here. The weather is warming up, our grass is turning green, and my tulips without blooms are taking over my flower beds. (I'm hoping that's not foreshadowing of our time in Holland...can you soak in the beauty of a tulip if it doesn't have a bloom?!?)

Anyway, spring means it's time for our annual beeping Easter egg hunt in Ft. Worth with the Gray family :) So, we made our appearance, but Kendall (and Justin) couldn't get out of there fast enough...and Kamden wanted to stay all day. We snapped a few pictures with the Easter bunny, saw some old friends, and enjoyed the morning together.

I suppose from here on out, Spring will also mean it's IEP time. So, I guess I need to do a follow up to our ARD on Friday.

I thought it went really well, but am frustrated that we still do not have a set plan for nursing. It was agreed that Kendall will require a one on one LVN during her time in school. The District says they can provide that, but the Director of Nursing was not able to attend our ARD and has not returned my phone calls (STILL!!) So, I am feeling extremely uneasy about everything. Who would send their medically complicated child to school to be cared for by someone they've never met?! Definitely not this girl. And I am shocked Mansfield ISD thinks that is OK.

It really is a shame that the group of people working with Kendall all have worked so hard to write goals and make Kendall's ARD a priority, and this one thing is holding us back. Mansfield has surpassed my expectations in easing the transition into PPCD for Kendall... Everyone has had excellent communication and caring hearts. Everyone except the Director of Nursing.

So I still don't know the plan for Kendall starting school next week. I would love to throw in the towel, but this is just the beginning and I can't give up that easy.

We go for Kendall's video EEG tomorrow. The increased Keppra seems to be working, but I still need to know what is going on at night, and if there are any other disguised seizures.

Oh, and just in time for a 24 hour hospital stay, we shattered the iPad screen again!! Can a girl catch a break?!?!?

An Open Letter to All Professionals...

This week has been par for the course I'm on these days. I lost my textbook that I need for the last 3 weeks of my class. Kamden was in the ER Sunday (for issues he understandably doesn't want me to share with the world) and missed three days of school. Our fence fell down on two sides in the back due to the storm we had Sunday night. We've had a nurse out two days this week. And my phone has been ringing non-stop between the school district and our Dr.'s calling about last minute paper work they are required to send in to the school district.

Our ARD was moved up because the day it was tentatively scheduled for is the same day as our video EEG. Go figure. April 25-26 wouldn't work for the school since it is a TAKS testing day (in Texas that means the earth stops spinning while our poor babies are forced to complete a standardized test despite the anxiety that has been instilled on them so that "no child is left behind" and the teachers can have accountability :)) Fortunately this Friday works for everyone. So, Justin and I shall be there with bells on, one of our nursing agency's owners, and my mother in law (Kendall's Nonnie.) We will be writing her very first, shiny, new IEP!

In case you don't already know...I'm the type of person who doesn't have a problem speaking my mind. If I get passionate about something (i.e. politics!) you're going to hear my side of things. I've also been known to play devil's advocate...because admittedly, I think it's kind of fun. I've challenged the school board, city council, home owner's association. I'm stubborn and get set in my ways with pretty much everything. What I'm saying is, I'm not usually afraid of confrontation.

But I find myself this week in a place I've never been before. I'm nervous, wishy washy, and extremely emotional. I feel weak and unsure about the future for my sweet Kendall. Am I doing enough? Is she too young to go to school? Am I putting too much pressure on everyone? Will she be safe? Will she feel scared?

I found this letter a while back on http://www.thecrackandthelight.com/ I though it was worth sharing again today.

An Open Letter to all Professionals

Hello? New teacher, or therapist, or doctor?

Is that you?

Oh hello… I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart. My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…

You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….

You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

School, Power Chair, a Fall, and Increased Seizures

These past couple weeks have been very eventful, and again I find myself overwhelmed with all of the things I need to blog about!

Kendall turns three in 2 weeks. We are still waiting to schedule her first ARD. I received a draft of her FIE (Full and Individual Evaluation) on Friday. There was no mention of a nursing plan or a seizure plan. Those things are still being worked out. (We're not off to a very good start with nursing. The director of nursing with our school district didn't return two of my attempts to contact him...then apparently "has no record" of my attempts) The "nurse" they were hoping to have with Kendall is employed by the school district. She's not an LVN or an RN, she's a certified nursing assistant. That's not going to work with Kendall's severe CP, epilepsy, Type One Diabetes, and feeding and drinking challenges. They may be willing to take chances with her health, but I am not. A little aspiration or small seizure is a big deal to us, and an error with her insulin pump could result in death. Again, not a risk I'm willing to take. This has to be figured out before we agree to go any further.

I want Kendall in PPCD. I know she will benefit greatly from the social interaction. I know the teachers and therapists at the school can offer an expertise in areas that I can not. I have not changed my mind in the least about having her educated in our public school district.

I went through every last word in her FIE. There weren't any surprises. At first, I was a little upset about her Ophthalmologist's report. It was stated that "Kendall is legally blind, which indicates an acuity of 20/200 or worse in the better eye with correction." But as I read on, I also noticed that while she has number of eye issues, her functional vision is still promising.

In regards to the AT evaluation for augmentative communication, they say this " the District will introduce a variety of low tech and high tech devices in order to collect data as to the student's response to the augmentative communication devices. In an effort to work cooperatively with the parent (THAT WOULD BE ME!!) the District may choose to include the parent provided device that the child is currently using in these trials. However, the District reserves the right to determine whether the device will or will not be included in the evaluation process. Additionally, the District assumes no liability for the parent provided device." Fair Enough. I'll pick my battles.

No matter how you look at this, it hurts your heart a little. I'm realistic about where she is in her development, but reading on paper that your three year old's adaptive skills are at 10 months, cognitive at 12 months, physical at 3 months, communication at 19 months, and personal and social at 14 months, never gets easy.



Moving on...We had our second demo of a power chair on Friday. I'm sure this deserves it's own post, so I will just post a picture. Kendall gets it. She knows it will make her move. She watched her brother fly around in a power chair too. She went from an absolute fit about sitting in it, to calming down and allowing us to move it for her, to actually touching the joystick. This will surely be a work in progress, but we have such a creative team of people working with her, I'm sure we will eventually figure it all out. We are months and months away of this coming to fruition, but when it does, I will have to figure out a lot of things. (things that cost lots and lots of money...like widening doorways, and adapting our van.) So there's not a huge hurry just yet!

I want desperately for Kendall to have independent movement. I want her playing on the playground with other Kindergartner's. I want her chasing the dogs and running away from me at the grocery store. Above all else, I just want her to enjoy her life.

After a long eventful day on Friday, I laid her down for a nap. When I did, I went into the kitchen. While on the phone, I heard her scream. I ran into my room and she wasn't in the bed. She was on the floor. In the corner of the room. She had scootched feet first off the bed, hit the chair next to my bed, and then the hard wood floor. I was hysterical. I was screaming, Kamden was screaming, and thankfully my dad was here and kept a level head. She miraculously was OK, but I definitely learned my lesson about leaving her on a raised surface by herself without something to block her fall! I just have to add that this isn't the first time she's fallen. Justin was responsible for the first time, which was in the kitchen and resulted in a trip to the emergency room...but that's really not my story to share on a public blog! So, I won't. Just sayin'. Fortunately for me, he was way more understanding to this fall than I was when he let her fall! Either way...she won't be falling any more!!!

And finally, poor Kendall has had a lot of seizures. This past week she had 4 in one week. That's too many. We've increased her Keppra dose, and also have a VEEG scheduled for the 20th. Hopefully the increased Keppra will do the trick. Hopefully we won't have to go back on the Ketogenic Diet.

Her wean is going great. Tomorrow I will cut her tube feeds out and we will just give water and milk boluses and 3 oral feeds and 2 snacks. Wish us luck!

Sweet and Sour

"There once was a girl, who had a little curl, right in the middle of her forehead. When she was good, she was very, very good...but when she was bad, she was horrid." ~Mother Goose.

And that's my Kendall. Don't let her cuteness fool you.

She's a stinker.

She had an amazing day considering we had to get her up every 2 hours last night to check sugars to make sure her basal rate is right on (if you don't understand that, ask my 10 year old...he demanded an explanation, then proceeded to question me about it for the remainder of the day.)

Then it just hit. We were enjoying a beautiful spring evening, eating hot dogs from the grill, playing hide and go seek, then jumping on the trampoline. When it was time for Kendall to go inside and sit in her chair, get her meds, and have her last bolus feed for the evening, she "planked out." By that, I mean she stiffens up, arches, won't-let-you-no matter-how-hard-you-try, break her tone. She did the same thing to me last Friday leaving Speech therapy, when I tried to put her in her car seat. It is just a fit. Not dystonia, not CP, just Kendall getting mad. Totally the equivalent of Kamden at that same age sitting down in the parking lot of the park when it was time to go. Or the fit in the isle of the grocery store. Or pointing at me and yelling "NO!" when I asked him to get in the car.

I guess I should be glad she has the wherewithal to have an age appropriate fit....but she's way too big and I'm way too small to fight her. We finally let her cry it out on the bed, listening to music while waiting for her meds and feed to go through. We left the room. Let her scream. It got quiet, so I walked in to find her smiling with her brother who was suppose to be getting in the shower. He told me he couldn't bear to let her cry because she has "special needs."

Kendall knows how to work it.

Do I have it in me to not let her get away with it?!? Let's hope so.