Monday, March 31, 2014

Picture and Video Overload

Two posts in less than one week.... crazy I know.

It has been a fabulous week. I have enjoyed my break a little too much and to be quite honest I am not looking forward to going back to class but I will push on! I will keep my eye on the prize and am looking forward to summer and the last break I will have for the next three years.

Makenzie and I along with her nurse and Mr. 12 had a great day on Tuesday. Makenzie has always loved the aquarium so that is where we headed for her special day. She giggled and squealed and spent a lot of time taking it all in. Her favorite exhibit was the sea otters. They were very playful and Makenzie got a kick out of their antics.

 
 
 

 

It is so much fun to see Makenzie love something so much! There was a day when I didn't know if she would open her eyes let alone turn into such a happy little girl with such an amazing personality!


When we got home I went to the dollar store to pick up a couple of Makenzie's other favorite things...... silly string and a balloon.

We proceeded to have a silly string fight in the middle of the living room and Makenzie played with her balloon so intensely that she broke a sweat. She yelled at that balloon, She laughed as she swung it around.

 
 
We finished the day with a trip to Red Robin for dinner with family and Makenzie got her own piece of cheese cake.

 It was an amazing amazing day!

Makenzie has also been working super hard with her talker. Over the years we have tried many different ways for Makenzie to access her talker. She has been successful to a degree with several different access mode but a few weeks ago I pushed to try a method called step scanning. This method requires the use of two different switches. One of the switches is used to move the cursor and the other switch is used to pick the item.

Makenzie's speech therapist and I spent a couple of sessions trying different switch sites and layouts for her talker language. While everything with Makenzie will always be evolving I think we have found something that Makenzie is excited about and completely understands.

Makenzie is using a switch at her knee to move the cursor and a switch behind her elbow to pick her choices. We have limited the amount of exposure Makenzie has because the school is still refusing to talk to me or her private therapist about the step scanning or her vocabulary changes and I do not want Makenzie to get confused and refuse to use her talker at all. This makes me so frustrated because even with limited trials Makenzie is doing so very well.

However, spring break is here for the kids and Makenzie and I are going to work our hinnies off with her talker over the next 5 days. I am done putting off working on this with Makenzie because the school staff can't seem to learn how to use Makenzie's technology or properly train the people who are with her all day. With that said  I have made an executive decision. Makenzie is going to use step scanning period and will not go back to school until the school gets it through their heads that this is what is happening, load Makenzie's current user area onto her talker, and train the staff on how to use step scanning and her talker to say more than just yes and no.

Here is why:


This is an iPad App from helpkidzlearn called Choice Maker 3. It is set up to work with one or two switches. This app allows you to program the pages on the computer and once you save the activity it can be opened in the app and downloaded for immediate use. This afternoon I made five 15 page activities in lest than 2 hours. It is so easy and Makenzie can play these educational activities completely independently!

We are still working on the motor planning necessary to activate two switches at different times for different reasons but the progress that Makenzie has made in such a short time blows me away! We are also using several game apps to help with this also made by helpkidzlearn. This race car game is one of Makenzie's favorites:
 

This week Makenzie also had her first conversation on Skype with her Granny and PawPaw all by herself. She talked with her talker for nearly 30 minutes. She told her Granny to "come here" which is great because anything Makenzie wants she gets (not really but shhhhhh don't tell her granny and pawpaw!) so they will have to start planning a road trip to come and see her!


Life is good!!!!

Believe.... Prayer Works!!!!




Tuesday, March 25, 2014

Tragic Miracles

It's 4am

I fell asleep on the couch watching The Following.

It is my spring break.

It is March 25th.

It is not a sad day but instead the day I experienced the most tragic miracle of my life.

It is the day I get to celebrate the miracle of life at the same time I reflect on a moment that would change the course of my little family's life forever.

It is a very strange combination.

As I sit on my couch typing, Makenzie's water has run out and I can hear a faint deeee dooo deee dooo coming from her feeding pump in the room where I should be in a deep slumber. Seven years ago I didn't even know what a feeding pump was let alone have one.

Seven years ago I didn't look around my house and see wheelchairs, a stander, a talker, and braces. Seven years ago the term SPED was for kids I knew nothing about, and the doctor was for the flu and strep throat. Home health care? DME? IEP? IDEA? ADA? Yeah..... didn't know about those either.

However, seven year ago this afternoon..... all of that would change. In less then 12 hours I would find myself next to my little girl barley hanging onto life in a helicopter over the city I have lived all of my life. I would settle into a little blue chair listening to the deeee doooo deee dooo of several machines that has become an all familiar song in my life. I would cry, I would scream, and for a short while I would sleep with the hope that when I awoke all of my pain could be chalked up to one really vivid nightmare.

Seven years ago every member of my family experienced a tragic miracle that would alter the course of our lives forever.

While life has not been easy over the last seven years I can honestly say I am happier than I have ever been. I am exhausted and overwhelmed too but non the less happy. Some days the guilt of how one moment in time has effected my boys is unbearable and others the knowledge of what this has taught them and who they have become despite it all is breathtaking. Some days Makenzie's progress seems agonizingly insufficient and others I can't believe how far she has come. It is a rollercoaster, I will not lie, but it is amazing to be able to look back in the face of so much heartache and see so much good in God's plan and provisions for this little family.

So today Makenzie is not going to school and instead we are going to head to one of her favorite places..... the aquarium. We are going to look at fish, turtles, sharks, and eels. We are going to touch things and eat ice cream. I am going to tell her how proud I am of her and how much I love her over and over all day.

I am going to try for one day to let go of the anger I have towards the school and their inability to see who Makenzie is despite her physical limitations. I will try but most likely this day will bring on snarky comments about how amazing my daughter is and how blind they all are. It will bring on thoughts and memories of just how hard I have fought for my little girl, how hard Makenzie has fought and just how pissed it makes me that they limit her and treat her as less. On this day, they will not get to be in Makenzie's presence because they are not worthy of celebrating her amazing recovery and what it has taken on so many different levels to get to this place.

On this day I am so thankful for all of you. For the support and prayers you have so generously given to our family. I have met so many wonderful people on this journey. We are so blessed by each and every one of you! Today I will be thanking God over and over for placing you into our lives. Thank You!

Today is a good day because seven years ago my daughter LIVED!!! NOW IT IS TIME TO CELEBRATE!!!!

 

Believe..... Prayer Works!


Tuesday, February 11, 2014

Overdue Update

Wow long time no post. I think that I have started the last several posts in that same exact way but life has been insane and I think that may even be an understatement. I think about posting often. I come up with words to write here during the day and then I can not find the time to put them down. I miss coming to this place. I miss sharing my beautiful little girl with the world. I miss the community. Buuutttt....... enough of that already.

Last time I posted, I think I left you with a bit of vacation and also of the begining of a nursing issue with the school.

The word "school" pretty much sums up where I have been physically and emotionally since that day.


I am just 2 short weeks from starting the application process to get into nursing school. I still have a 4.0 GPA and was accepted into the honor society. I still love every minute of it. I am currently taking chemistry and have decided that they could very reasonably rename this class " Math on Crack 101". With that being said, I love math and science so I am having so much fun learning about the composition of all things. It really is pretty dang amazing and yes I already know I am a nerd.

However, my college adventure has been the least of my school worries.

About a month before Makenzie started school this year I found out that her school no longer had a nurse. I tried very hard before her first day back to try and get some answers and come up any kind of solution. However, on her first day of 1st grade there was no nurse on the property so Makenzie and I started first grade together. I sat in the back of the class and tried to work on my own homework while leaving the education to the professionals. The problem...... there was no education happening. I had suspected that the school had not been giving Makenzie what she needed for a long time but suspecting it and seeing it with my own eyes was a different story. So the lack of a nurse went from being the only real issue to becoming one of many.

It took many meetings with several district administrators, the school staff, an advocate, and legal representation from an attorney, over a period of two and a half months to finally work out the nursing issue. However, the education issues were a whole different story.

Once the nursing issues were resolved the school decided to change Makenzie's IEP in a not so good way without my consent. We ended up changing schools and things did not get any better.... in fact I am pretty sure they got worse.

New Years Eve Downtown
I have cried tears of sadness and anger. I have screamed profanities and pounded my fist into pillows while no one was watching. There were many days that I seriously contemplated taking down Makenzie's therapy swing and replacing it with a punching bag.

I can not understand why the school system refuses to see my little girl who is adding, subtracting, and recognizing sight words, as a child who is intelligent and able to learn. Makenize deserves more and as a matter of fact she has the right to have more.

Talker and switch on desk.... Makenzie on the other side of the room? Hmmmmmm



I am leaving out most of the gory details because on Monday the weight of the world was lifted from my shoulders in the form of an attorney. I having been fighting this uphill battle alone for far to long. Makenzie is falling further and further behind and the moment I signed that paper I almost cried. There will be no more midnight emails trying to stay professional through the frustration. There will be no more meetings were the "team" considers my suggestions and then does whatever they want regardless. There will be no more disrespect to my daughter's rights and dignity.








I can come here in this moment because I can rest in the fact that I don't have to fight tonight because the fight is now in the hands of a professional who the district can not ignore. No more " you are just a mom and don't know what you are talking about" to worry about. I honestly do not think my heart has felt so light in a very long time. I once again have hope that Makenzie will finally be able to have what she needs and deserves.



Outside of all of the above mess, Makenzie is doing wonderful! She never ceases to amaze me and God has not stopped providing miracles.The boys are working hard in school and Mr 16 (yes you read that right) got his permit and a job. Time is flying by and my kids are growing up way too fast!

I hope to be back soon!!!

Believe.... Prayer Works!

Oh,  picture taking and editing has kinda gone on the back burner as well..... sorry for the phone pictures but I figured something was better than nothing at all!

 



Saturday, August 17, 2013

Summer Fun

Summer oh summer. We have a a good but exhausting summer. I took 2 classes this summer and that kept me pretty busy but the kids were troopers.

Makenzie and I participated in the Color Run with a couple of our friends. We had SO much fun. It was the first 5k we have ever done and we are planning to do many more!

 



Two days after my semester ended we packed up the car and headed to a family reunion to see many of my cousins I haven't seen in almost 14 years. I love road trips and this was the first one I have ever attempted with all of my children. It went fabulous and everyone did great, had fun, and the boys have already asked when we can do it again.

After organizing all of our stuff into the back of the car we headed out. Over the course of 6 days we managed to travel through Nebraska, Iowa, South Dakota, Wyoming, and Colorado. We hung out at the lake, went to a tiny, old, amusement park which my grandparents had once visited on a date many years ago. The boys rode go karts for a good long while and Makenzie giggled on the Farris wheel, log ride, the train and few others. The looks on my niece and nephews faces when they got on their first ever amusement park ride and their first taste of funnel cake was also priceless.



 


In my fashion this road trip took us in a circle and after the reunion we headed to rapid city, South Dakota and were able to see Bear County USA were reindeers would not move out of the middle of the road (quite tramatizing) and bears walk freely all around. We also stopped at Mt Rushmore so that the boys could see the monument and finished our site seeing with a drive through the beautiful Black Hills.


 


 

In six days I loaded and unloaded our stuff 6 times and drove most of the day for 4 of these day but it was worth all of the work. We drove on two lane country roads, had picnic lunches in the middle of nowhere, we admired tiny towns, decided that most of Nebraska smells like poop, and rocked out to Manamana more times then I can count. There was very little fighting and Makenzie did fabulous. It was normal and we had fun.

 

 

 



However, yesterday it was back to real life and right now my real life is driving me crazy. At the end of the school year due to medical reasons our amazing school nurse had to resign and I found out a couple of weeks before we left on our trip that Makenzie's school had still not hired a new nurse. After several conversations with her teacher and the principal I left on my trip praying that while we were gone the issue would be resolved and Makenzie could go to school. However, that was not the case and school starts on Monday and their plan is to have a part time nurse and med tech (that has yet to be hired) who has received 8 hours of district training and no medical education. Without boring you with all of the reasons why this is not ok I will just simple say...... This is NOT ok.

I have been stonewalled by most everyone in the district and have been given many excuses and reasons why this plan is sufficient. They have arranged a meeting with some of the big wigs on Monday and I am ready. I have letters going from the doctors, I have printed out laws from DORA and IDEA, and have contacted and advocate who will be attending the meeting with me. Please say a prayer the this will be resolved because Makenzie loves school and thrives while she is there.

School starts in two days so I am off to buys new shoes and clothes, get haircuts, and finish the supply hunt. It is going to be another busy weekend.

Believe... Prayer Works!

Thursday, May 23, 2013

YouTube

   This morning I downloaded some video that I took of Makenzie riding her bike off of my phone and onto Facebook and YouTube. I booted my computer up and was fully intending to post a video this afternoon of the bike riding but I got distracted. In the last three months the format of Makenzie's YouTube channel was changed and instead of playing one video, it was set to play video after video.

Well, I sat and watched video after video. I watched the video I took of one of Makenzie's very first laughs after her accident and with each video I realized something pretty cool.  I realized that since Makenzie learned how to smile and laugh again I have literally lived in a world of constant laughter and happiness. I challenge you to go to Makenzie's YouTube channel and just let a few videos play. You will be hard pressed to find more than a handful where Makenzie is not laughing even when she is being physically challenged. Every time a video was over and a new one started I found myself with a bigger smile on my face and Makenzie sat next to me laughing at herself laughing. 



God is so good and I am so blessed. There is no doubt that this journey has been hard and many times excruciatingly painful......... BUT......... though it all God brought laughter in the midst of many  storms through Makenzie's amazing personality.

So without further ado........ here is Makenzie riding her bike..........



and here is Makenzie watching a video of herself, riding her bike........



Believe... Prayer Works

Sunday, May 19, 2013

Long Time No Post

I don't even know where to start it has been so long. So I guess I will start with right now.


One week ago I finished my first full time semester. I loved it but it was hard and consumed a TON of time resulting in many things taking a back seat to my kids and my classes. This blog being one of those things.

I signed up for Biology thinking it wouldn't be too bad. However, on the first day of class my instructor notified the class that we would need 18-20 hours outside of class each week to study and if we had kids, a job, or were taking other classes that we would most likely not do well in his class. At that point I thought about running far and fast but I didn't. I am not a quitter and I wasn't about to start then. Needless to say he wasn't joking. The class was HARD and required every bit of time he suggested and I gave it that, plus some. I walked away from that class having set the curve for each exam with a 92.2% final grade and finished the semester with a 4.0 for all 14 hours I took. I cried real tears when final grades where posted and I realized I had kept my 4.0. I was so relieved to be done but also so proud of myself for finishing well despite the projected failure.

The hardest part about being a single mom and full time student was dinner time. We ate out a ton over the last 16 weeks. So I decided to try a new angle on dinner time. I spent the last 3 days preparing 60 meals into Foodsaver bags and put into the freezer and then will be taken out when needed and thrown into the crock pot. I am so excited that I do not have to think about anything other than what bag to take out when it comes to making dinner for the next 3 months!

 

I also joined the gym and am working on my physical self. I found a gym that has a day care that does a fantastic job with Makenzie. It really does feel good to get out and push myself back into shape. Part of the gym includes a personal trainer who not only has kicked my butt but also helped get my eating habits back under control. Between eating better and excercise I feel a ton better during the day and am a much happier person all around.


So I guess much of the last 16 weeks has been about me. After 6 years of being a full time caretaker I think it was high time and I make no appolagies. I don't think I have ever been happier nor felt so good all at the same time.

Makenzie is doing GREAT! Other then a couple of colds and a stomach bug, we had a very healthy winter. She is doing fabulous at school and is getting ready finish Kindergarten and this year she will really be going to first grade! She is riding her power chair everyday and is doing really well learning how to steer and navigate around the school.

Last but not least Makenzie finally got her very own bike this weekend!!! She was SO excited and peddled that thing around the park until she could peddle no more. We are working on tweaking a few things to make it fit a bit better and then she will be ready for many bike rides this summer with brothers! THANK YOU so much Brendan, Amtryke, and crew for your generosity and making this happen for Makenzie!

 

I am hoping this summer I will be able to get back to taking pictures and sharing them with all of you! Thank you so much hanging in there with me and Makenzie! Life is good!





Friday, January 11, 2013

Vacation Time Before Reality Stikes Again!

Well we had a wonderful end to our Christmas break and then it was back to the grind again. However, before I get back to the grind I want to document a wonderful family trip we took right after the start of the new year.

For part of our Christmas present my mom and dad planned a short trip into the mountains . Unlike all of our other mountain adventures where we jump in the car, this time we boarded a train. I have never been on a train before so I was a bit unsure of how that would go over with Makenzie but let me tell you it was SO much fun!

 

We met so many interesting people, played games, and say a lot of scenery that you miss while driving. It was about a six hour trip and we climbed the mountain very slowly. This seemed to be the trick for Makenzie's typical altitude sickness because we did not have one issue even at 10,000 ft.



During our stay we went swimming in the hot-springs. Even though it was a whole 9 degrees out the water was super warm and everyone had a wonderful time. We also went skiing. I have not been skiing for about 17 years and was pretty apprehensive. However, the moment I clicked my boots into the bindings I knew that I remembered how to ski. It was Mr 11's first time on the slops and by run 3 you would have never known. After all we have been through I would be lying if I told you I wasn't a bit anxious as I watched my kids float down the hill, and the few times I saw my son out of control and rolling down the hill I really did want to crawl out of my skin but we all walked away with a smile, some really sore muscles and wanting to go back for more.





Having babies is fun but getting to do the big kid stuff is so much more exciting! I have waited for so long to get to experience this kid of stuff with my boys. As we jumped on the first lift and I sat there with my son I realized that for the first time since Makenzie's accident that I was going to spend the whole day focused on just them. I was going to get to see my child put on ski's for the first time, and I was going to see the look on his face when he rolled off that lift and looked down the big hill.  Yes Makenzie was waiting just at the bottom in the lodge but I was focused on my boys and knew she would be just fine. Needless to say I haven't had to much fun in a very long time!





One day later I found myself back to normal life and knee deep in my kids education. Right before break I met with Mr. 13's teachers and based on testing learned that he would not qualify for any services. We talked about more ways that we could help him find success at school and since then not one single piece of our conversation was followed through on. 

I made a really tough discussion this week to pull Mr 13 out of school and use a cyber school program to finish the year. Most of these programs were already closed for the year but I prayed that if this was the right thing to do that God would open the door and low and behold there was still one door open in a program that is still enrolling.

My decision was solidified yesterday when I experienced the most negative and irritating conversation with a teacher in regards to my son to date. I asked Josh if his teacher was always so rude and negative and his answer was "yes" he then went on to tell me that one of his other teachers told him and a few other kids yesterday that they would never graduate and make it to college and that in the past this same person had told the whole class that they were dumb. Ah.....yeah..... Not going to work for me.

So today I had a little chat with the Principal and hope to get the matter resolved but I am feeling like this could be a real reason why Mr 13 is having such a hard time in school. Negativity most certainly doesn't breed success in any way!



I also went and talked to Mr 15's guidance counselor and found out that he is really doing very well. Is is by no means a honor student but his first year of high school is going well.

So Mr 15 will stay right were he is. Mr 13 will spend the rest of the year with me to figure out how he can catch up and show the education system how smart he really is and Mr 11, well I am not sure about him. He is begging me to let him stay home and after yesterday I am considering it. I am feeling like some of the problems I have had over the last couple of years are simply because "middle school sucks!" in general. I am thinking that maybe it would be best for my 6th grader to skip the rest of these crappy years where so many bad behaviors are exposed and learned and try again in a couple of years. We shall see.

I have one more full week of break and am enjoying every minute of it! In fact I think I am going to go sit on my couch and watch a movie in peace now before I have to go pick the kids up again!

Believe... Prayer Works!

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