I had a wonderful trip with my friend. It was very relaxing and great to spend time together. We ate a ton of bad food and shopped til our feet hurt. We laughed as we reminisced of our crazy college days, and how drastically both of our lives have changed since then. Of course, I was anxious to get home. It was just another reminder how blessed I am to have such a beautiful and loving family to come home to. I've decided that I thrive on the craziness of my dogs, kids, and husband. My home is my place. My pj's are my favorite clothes. I like to eat marshmallow creme on saltine crackers standing over the sink while watching Kendall discover something new. I missed her smell. And Kamden's constant talking and loud guitar playing. I slept better last night with Kendall kicking me in the ribs and scootching around in my bed than I did all weekend. (yes, she still sleeps in our bed every night. that will be addressed in a later post!)
We recently received the mobile base for our Squiggles stander. When the tray is off, Kendall is beginning to roll the wheels on her own. She stands really well in the stander and enjoys being upright. Now, she can roll around the whole house, the front and back yard, and up and down the street if she wants to. With the tray on, we can push her or lock the wheels. With it off, she has the freedom to move. I think with enough practice she will get the hang of it in no time (while also getting the benefits of weight bearing in a great position).
This morning we had Kendall's Evaluation with the school district. Really, there were no surprises...just a lot of people in one room. We had PT, OT, Speech, Diagnostician, our ECI Coordinator, Nursing Director, our beloved Vision Team, my dad, Justin, Kendall, and me. Her IEP/ARD will be in about one month. There were a lot of things to sign, and a lot of questions to answer. I'm not certain why I had to gather all her medical files together, as they didn't look at them at all. My greatest concern is, and has always been, making sure Kendall's needs are met physically. We need qualified people administering medication, feeds, and insulin. In my opinion, that is a nurse (especially since Kendall is a non-verbal, insulin pump dependent Diabetic, with hard to recognize seizures.) A nurse who knows her. But I was encouraged to talk with the school nurse and not given any real answers. I called my nursing agency right after and they put my mind at ease that it will all work out. They even offered to attend Kendall's ARD with me, which I intend to take them up on.
We are still waiting for the Nephrology Nurse to call us with Kendall's echo results and latest lab results. I will post an update on those when they are received...
Am I delusional? I sort of just had an out of body experience during a threaded discussion in my online class.
See, I KNOW...trust me, I KNOW Kendall has issues. She faces a lot of challenges. There are movement issues, speech issues, health issues. But the thing is, she's there. SO totally there cognitively.
We definitely have our work cut out for us with her and her future. I get that. But today, technology is so advanced that she can read, write, speak, and move with the help of assitive devices. So there is absolutely no reason she won't be able to have full inclusion in not just elementary school, but also junior high, high school, and college.
Some teachers see "severely disabled" children as an automatic ticket to a life skills class. I see my sweet Kendall as just the opposite. Yes, she will probably always need help with some things. But there is no reason she won't be able to graduate from college and contribute to society. When I say contribute, I mean more than just helping "normal" students gain tolerance or acceptance to kids with disabilities. Kendall could be a writer, motivational speaker, teacher, or artist. The sky's the limit for her really.
She has more spunk and personality that a lot of other almost three year olds. Her receptive language skills are amazing. Her determination surpasses most of the people I know. She has a sense of humor, curiosity, and imagination.
Breaking down the walls of stereotypes from educators, other adults, and peers is beginning to seem like it will be the largest obstacle for Kendall. Not Kendall's disabilities.
If we give her the tools she needs to succeed, if we give her the extra attention and support, if we give her encouragement along the way...she will do great things. Which, in the end, makes Kendall absolutely no different from any other child. And makes my optimism no different than any other parent :)
SO THERE...crazy, old, high school math teacher from po-dunk, Texas. Times...they are a changin'.
We've had a really busy week. Kendall had a few make up Dr. appointments re-scheduled due to the weather, so the days were filled with lots of driving and stressing.
Her latest blood draw showed a few good things and a few bad. Her A1C is amazing. Her lipid panel came back squeaky clean. This is good news on the diabetes front. The pump is working and we have made the correct adjustments. I can tell she feels better all around. The fact that her lipid panel is back to normal is good news too. For all of you Keto moms out there, this is proof that the cholesterol goes back to normal once a normal diet is resumed. I've said it before and I'll say it again...the Ketogenic Diet was our miracle. The fact that some Dr.'s don't even offer this option to parents is disgusting. It should be a front-line treatment for all seizure disorders. The drug companies don't want you to know that though...and some Dr.'s just assume parents will be too overwhelmed...but it is definitely worth a try. Kendall's head control and fine-motor skills improved almost immediately once her hundreds of seizures stopped. I am extremely grateful our Dr. suggested it before drugging Kendall up. (look at these open hands!)
The not so good news is her Nephrology labs showed her metanephrines off the chart. In my quick google search, it seems they can be the body's response to stress, giving adrenaline, and increasing heart beat and blood pressure. Remember how upsetting that lab draw was for me? Imagine how Kendall was feeling. So I'm praying that was the case and we are going to do another lab draw because of it. If they are still elevated, another contrast study is in her near future. They also moved her echo up to tomorrow morning.
We went to the dentist and all was good there. No cavities! Her final two molars on the right side are still breaking through and look pretty red and inflamed, which explains the extra drooling and grinding. Her teeth are a bit yellow, but they say that's just how her teeth are. Yuck!
We're enjoying the beautiful weather. Meeting other "special" moms and their babies at the park does wonders for my soul! Just a quick walk or talk to know you're not alone in this special needs world is amazing. I am so grateful for the friendships I've made since Kendall's been born
Our household is almost healthy now. Just a few runny noses and nasty coughs are lingering.
I'm excited to say that all my husband's travel has paid off for me :) He cashed in some of his frequent flyer miles so I could spend the weekend in Vail with my BFF from college! It's a quick trip. Leaving Friday night and returning Sunday afternoon, but I am oh-so-excited! Excited to get away for a while, sleep soundly, and have some girl time.
It will be a nice break to gather my thoughts and gear up for the much anticipated 8:30am Monday morning IEP meeting!
We finally have sunshine! I was able to go for a jog today...the first time in a long time. I feel a ton better.
Poor Kamden's fever actually turned out to be strep A and influenza B. We all had the flu shot, but they have seen a lot of break through flu. His fever got really high yesterday (105.8) and I panicked. He's not the one that gets sick. Thankfully our nurse was here and she kept me calm and helped me get through it. Have I mentioned how much I love her? I try to respect her privacy, but I have to say that without her, my life would be so different. She has absolutely no idea how much my whole family loves her and appreciates her.
So our pediatrician decided it would be a good idea to start Kendall on Tamiflu too. So far so good. It was a bit of a feat though finding it. Of course, the one pharmacy that had it didn't file our insurance (if we were straight Medicaid they would have) so I had to pay it and pray I get reimbursed for it in the next 8 months. (it was over $300)
We took Kendall for her Endocrine labs and her Nephrology labs. There was a small malfunction with the tourniquet, and Kendall was left with blood everywhere and a very bruised up arm. I was going to post a picture, but it's not exactly something I want to remember.
Yesterday was definitely a day that I'd like to forget.
Please keep Kamden in your prayers as we get him well, and also pray Kendall doesn't get it. With all the travel Justin does, I don't know how I would handle both of them ill. I don't have enough hands and am sure Kendall would end up in the ER. Is February almost over? I swear, February and September are not good months for this family!
Well, I guess I should start out with the whole ice/snow day we had yesterday. We didn't end up going out. Kendall wasn't 100% herself, and after my small mental breakdown trying to get her arms through her long johns...I decided it wasn't the best idea. Instead, we stayed in and played around the house. It was a good time.
Today we braved the cold as we went to the Nephrologist. Nephrology is a new one for us. He quickly looked her over, ordered a blood pressure machine and cuff to take her bp twice a day for a week. He ordered an echo-cardiogram (we haven't had one since she was in my belly) lots of blood work,which overlaps with her endocrine labs we have to get tomorrow anyway, and a urinalysis. Her previous kidney sonogram gave him the answers he needed, so no need to do it again. He was not at all concerned with her puffy feet. He said it was definitely not fluid. Based on all her risk factors, visiting him was a good idea. But so far we haven't gotten any bad news. We'll just pray everything else turns out OK.
Kendall's hasn't been sleeping well at all, but other than that small detail, she's back to herself. Unfortunately, Kamden came home from school today with a fever of 102.5, very rare for him, so we will be heading to the pediatrician tomorrow to see what's up. I just wish everyone would get well already!
My dad had shoulder surgery on Tuesday and is doing really well. It was apparently messed up worse than they thought. He has a long 6 month recovery ahead of him. I'm already missing his help around here :( A LOT!
The past few hours, I have been consumed with raising awareness about the Medically Dependent Children's Program. We rely very heavily on this program. It provides Kendall with basically everything! If we didn't have this there is absolutely no way we could afford all of her therapies and medications. I mean absolutely NO WAY. The legislature has a measure on the table to cut $29 million from it. I understand it's tough, and there are a lot of requests from different interest groups to dip into the "rainy day funds" but I definitely feel that this program benefits so many families and a $29 million cut would be devastating. There has to be a solution. I've asked all of my friends to write letters to the finance committee. If you would like to write an e-mail as well, please e-mail me and I will forward their names and e-mail addresses to you.
SO...ending on a lighter note, here are a few snapshots of our past 2 days :)
My sweet babies:
I thought if I made this black and white it may hide the clown-like attire my children wear when we don't have to go anywhere!
No excuses. He's completely neglected again.
Lots and lots of swinging in her room...and yes, those are baby legs on her arms. She gets hot then cold very quickly, so this was my solution!
Thanks for all the comments, phone calls, and e-mails I received after my last post. I'm better now. Sledding is over-rated for sure. Vodka is not.
After a wonderful lunch today with a few special mommas, I realized it's all going to be ok. My feelings are what they are. A lot of us have been dealt crappy cards, but we choose how to play them. I refuse to fold just yet.
My brain has been on overload since my first semester of grad school started (yeah, it makes me feel cool to say that!). I've forgotten what it's like to read chapter upon chapter of facts, statistics, and philosophies. Everything makes so much sense in the book, but then when I look at all of our lives and the practical applications for the families, it makes my head spin. The most recent chapter I read was about families of children with disabilities and their quality of life. Seriously. Quality of life. The divorce rates of families of children with disabilities is astounding. The poverty rate is even more shocking. It was pretty depressing...but definitely made me realize how lucky I am. Having a circle of friends in the "blog-o-sphere" has been a life saver for me. The books I've read on raising a child with issues (my most-favorite are pictured above) definitely made me realize it is ok to have a sense of humor about things. We have to, right?
I'd be lying if I said I wasn't second guessing starting school. Already through the online discussion threads (people get pretty brave behind their computers) it's made me seriously question some of the teachers in the system! But I'm sure the same could be said about general education teachers as well. I'd like to think people don't go into any type of special education for the money...most seem to be very passionate about their jobs and advocating for the families... but there's always a few people who just don't "get it." I'm just way too emotionally involved I guess.
With Kendall's initial IEP in a few weeks, I'm becoming more and more apprehensive. Not that I don't trust our district. I do. It's just such a big, scary world out there, and sending my 3 year old to school 5 days a week for 4 hours is a little unnerving.
So, I'm not really sure how I got on that tangent. Again, this blog is such a great way to hash out my emotions and move on. So that's what I'll do. I'd better get to bed. We're expecting another snow/ice day tomorrow... and I fully intend on bundling Kendall up and letting her play in the snow. Maybe not sledding...but baby steps.
Nope. Not a post like the rest of the happy people today. The ones bundling their children up in their cute bright coats, hats, and scarfs. Taking cute pictures in the snow and writing blogs about how wonderful it was for their kids to see the snow and enjoy the snow day off.
The entire neighborhood is outside right now. Literally right in front of my office window, sledding down a big hill and climbing back up. My son is one of those kids. Justin's out there too with Chloe. They're running around and throwing snow balls.
Meanwhile, I'm inside with my stuffy nosed child with special needs (as well as my old dog with arthiritis and cataracts) looking through the window at all the happy people.
I haven't had a moment like this in a while. They do seem to be spacing out. But it just makes me sick to my stomach and tears well up in my eyes. Why can't Kendall be out there? Why does she have to have Cerebral Palsy? Why can't we put her on a sled in a laundry basket, pull her around the yard and snap pictures of her smiling and squealing and enjoying the snow? Why does MY daughter have to have a seizure disorder, a comprimised immune system, a sensory processing disorder? An aversion to cold things and bright things? WHY WHY WHY?
And to all the people complaining on Facebook about how ready they are for the ice to melt so their kids can get out of their hair...stop. At least your kids can walk. And talk. And play in the $#!* snow. And don't pull their hair when someone laughs or claps.
It just freaking sucks. Big time. And don't tell me to count my blessings. I do everyday. I'm just having one of those days. And as my friend Chelsea Handler once said. "When life hands you lemons, squeeze them into your vodka." Except I don't have any vodka and my car is stuck in the driveway.
After enjoying a weekend of sunshine and warm weather, we have been whisked back to reality. School was cancelled, so Kamden's home entertaining Kendall. We're all in our pj's and prepared to hunker down for about 3 days of freezing temperatures, sleet, and snow.
Texas pretty much shuts down when there's even a trace of ice on the bridges. Thankfully, Justin is in town and has set up his office from home today. He seems to think he's going to be able to get some work done...good luck.
Kendall is still fighting her cough and cold symptoms. Her croup finally resolved, but she still sounds pretty rattly. She's slowly but surely getting back into her normal routine.
We are working on Kendall's sensory processing issues. She has a very sensitive startle and will scream and yank her hair or pull off her glasses as soon as she feels uncomfortable. Up until last week, the vacuum and blender were completely off limits around her. (We seriously made smoothies in the bathroom with the door closed.) New environments,or places where young children are talking or crying, seem to be stressful for her too. We HAVE to get this under wraps for obvious reasons. I've recently learned if we talk to her about the noise or place before it catches her off guard, she is able to adapt. But it is definitely a work in progress and being addressed by all of our therapists.
Another recent concern is her puffy feet. We've always chalked it up to her not walking, but it has started looking a lot more like excess fluid. We already have a Nephrology appointment on Friday, due to some high blood pressure readings, so hopefully we can get some clear answers.
Always a guessing game around here. But today, I plan to enjoy the snow day with the same enthusiasm Kamden had when he woke up to a sea of white. Hot chocolate, Netflix, and a fire are in my near future. Life is good.
We are very open about our journey with Kendall. We're happy to answer any questions, and welcome all your comments! The one thing we don't want is to be isolated from our friends and family. I've been that person who thinks it is easier to just ignore a child with special needs and their family. I've feared hearing their story. I've been guilty of looking through a child with special needs. I've also thought and said "how on earth do you deal everyday?" Although it certainly isn't easy, we are a normal family...celebrating all the milestones our daughter hits (and maybe cheering a little louder in the process!) Let me tell you...it's been a long road with many bumps but the love and support we receive daily is what keeps us truckin'! Click here for the full story on our precious baby girl Kendall Ann, or scroll down for the quick recap! Thanks for visiting!
more music please!
clearly before keto diet and diabetes
Kendall Ann has blessed our lives in so many ways. She is truly a gift from God and has proven herself to be a fighter from the beginning. She was born with many neurological and optical abnormalities, which we now know is due to a stroke in utero...probably due to her Factor V Leiden mutation and two copies of the MTHFR gene (1-14-09).Oh, and NOW she has Type 1 Diabetes (8-19-09) And NOW (12-16-10) she has problems with her Mitochondria ... and NOW (2-11-13) a neurogenic bladder resulting in a vesicostomy. Of course there is apossibility of a Mitochondrial Disorder, and a possibility CDLK5 caused all the problems and Mito secondary...but we will never know, because we've decided no more testing! When she was born she came right home...no NICU stay...and we had no idea anything was wrong! She has undergone numerous hospital stays and a number of surgeries, but through it all, she has maintained a smile that wins the hearts of everyone who meets her. Please join us in our journey of life with a special little girl full of spunk and personality who happens to have multiple disabilities.
I like to say I'm a party- girl-turned-career-girl-turned-stay-at-home-mom to a son who's gifted and talented, and a daughter with special needs. My hubby levels me out, and I'm a lucky girl to have found him.(I kissed a lot of frogs!)
I love my life and all it's chaos. My family and close knit group of friends help me get through every day! I'm getting better accepting that God's plan isn't always my plan...and alcohol sometimes helps :)