Blessed

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...

Delusional?

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'.

Another Video...

This girl amazes me :)

Updates...

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!

Sunshine

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!

Hope you all are enjoying your weekend!