Monday, March 26, 2012

Makenzie's Miracle Day

Five years ago I was in shock at this hour. On a beautiful Sunday afternoon we had been to church, eaten lunch, and were looking for an end of the season deal on snowboards. Makenzie had on a little sun dress, and white sandals with beads that changed purple in the sun. Her hair was tightly pulled into two pigtails and a nap was calling her name so we were on our way out to the truck to head home when tragedy struck.

By this time on March 25th 2007 Makenzie had a breathing tube, two IV's in her shins, two IV's in her arms, a ride in an ambulance, stabilization in an ER, a trip from one roof to another in a helicopter, and was laying in a bed, lifeless, in the PICU, hooked up to more wires then I could count. My only girl. At this hour five years ago my daughter was still alive, she was breathing over the vent, and the fact that Makenzie may have brain damage had just struck me. The words had not been spoken but for some reason after all the tests on the rest of her organs came back more or less ok I realized that the one organ I had overlooked even worrying about was Makenzie's brain.

The waiting room was finally quiet and at this hour I found myself  sitting next to my baby wondering if she was ever going to be alright again. Would she walk or talk again. Would she giggle and play.

Today, on a beautiful Sunday afternoon in 2012 Makenzie is alright. She is not the same little girl as she was before March 25th 2007 but somehow, five years later that doesn't even matter to me anymore. Makenzie is happy. She is healthy. She heals more and more every day. She doesn't walk..... she drives, she talks..... just not with her mouth. She sits and takes in life...... from her wheelchair. She ALWAYS has a smile on her face and giggles come constantly. Makenzie is more then alright! She is amazing!

Year number four was an amazing year. We moved, got a van with a ramp, Makenzie went back to school, learned how to use a talker with eye gaze and how to drive a power chair. She leaned how to walk well in her walker, and started school..... again. This year we got on the waiver and added some therapies as well as started the process to remodel our bathrooms. Makenzie is thriving on a blended diet and her reflux is under control.

God's plan and peace has been shown to me so much over the last year. I can not even remember the last time I felt the sadness a guilt over what happened to Makenzie. I am so full of acceptance that my heart could burst. I do not look at other little girls Makenzie's age and wonder what she might have been like anymore. I do not feel the need to try every new treatment I find. I see Makenzie as perfect. God's plan is perfect and even though five years ago my plan was very different then God's, today I feel our plans are much more the same then they are different.

Today we celebrated life, We celebrated with friends and family. The kids ran and played. Makenzie drove her power chair in the park and talked to her guests with her talker. Makenzie giggled and laughed. We ate, and talked, and celebrated the life of each person who walked through the door!

My heart is so full tonight. Today was AMAZING!

Thanks to all of you who have supported us over the last 5 years and thanks for being such a huge part of  making this day so beautiful! God is SO good!!!!!

(pictures coming soon from an amazing friend and photographer who was kind enough to document this day for us!)

Happy Miracle Day Makenzie!!!

Believe... Prayer Works!




Saturday, March 24, 2012

Celebrate Life!


5 years is a long time but at the same time.........


5 years has flown by.

 

5 years ago tomorrow could have ended a whole lot different then it did....... but it didn't!



and tomorrow we will celebrate! Like a party with many friends and family complete with wine and cake, celebrate!


We will celebrate life.

 

In 5 years we have all grown.


Makenzie has healed.

and this life is worth celebrating!

 

In the last year so much has changed.

 The biggest change has been the absence of puke and reflux.

 

Replaced by weight gain and freedom.


The freedom to go to school without the fear of aspiration.

The freedom to travel while eating.

The freedom to have meals last 30 minutes instead of 90.

The past year has brought a new house without stairs, a new van with a ramp, a new school with an amazing staff, and new friends.

This year has brought new opportunity to resume a more normal life which is consumed less by brain injury and more by fun.

My favorite normalcy has been getting back into extra curricular activities!

Like hockey!

 

and skate boarding

 

Destination Imagination


and playing hooky from therapy (sorry Christa!!!) to take a walk from school to Cold Stone with my sons class for a bit of blue cotton candy ice cream! 


and just 4 days from now Makenzie and I will be setting out on our biggest adventure yet......... here is a sneak peek.........


The last five years have not been easy but not only have we survived but we have learned how to love deeper and live louder and for that.......tomorrow......we will celebrate!

Believe.... Prayer Works!









Sunday, March 18, 2012

A Taste of Summer!

I started out this week with a chip on my shoulder. There was a series of events involving two huge organizations, political red tape, and the feeling of discrimination that left me bitter and irritated. I sat with a glass of wine one evening early in the week and wrote a post into the wee hours of the morning. I was delirious and angry. That post is still sitting as a draft and may never get published. Only time will tell.

I woke up the next morning to a post on another blog about God letting us start new every morning. A fresh start and another chance. I looked over my post. Spell checked it and decided that for now I am going to let it go and instead focus on the blessings in my life. Sometimes life isn't fair and for today that is ok!

It has been BEAUTIFUL around here. The snow is gone and the kids managed to find many things to do outside! A friend came over for dinner one night this week and we sat on the back deck watching the kids play ball, and climb trees in the park. As the sun started to disappear in the horizon I realized that it was that perfect time of day to snap a few pictures..... OUTSIDE! I was so excited to even have a willing participant. (my kids tend to hide behind anything available when I pull out my camera)









The next next evening was just as beautiful so again we found ourselves in the park. This time with Makenzie and the power chair. Oh did we have so much fun! There was a team practicing football and Makenzie was bound and determined to show them how it was done! I tried to keep her put of the way but several times I let her get close enough to the action that they had to pause to wait for her to move. Oh what a blessing!







Here is a short video I took. Makenzie is still learning but she is doing SO well!!! 



I am so ready for summer to be here! I am so grateful for a new start every morning! Life may not be fair all the time but it sure is good!!!

Believe.... Prayer Works!





Monday, March 12, 2012

Sick of Being Sick

 I am so sick of cold and flu season.

At least one of my kids has been sick for the last 3 weeks and I am done!

Then there are the schools...... at which everyone is also sick.There is a stomach bug going around and part of me is grateful that Makenzie has only been to school three days in three weeks! They had 4 days off, Makenzie was sick, her aide was sick, her aide's kid was sick, and now I am trying to decide if I am just going to keep her home until this all dies down because I am done with sick!!!! 

It is a hard call for me because Makenzie LOVES school! She learns so much but if she gets sick.... which she will because everyone else is sick...... she will be home anyways....... sick...... not healthy. So do I keep her home healthy in hopes of keeping her healthy or send her to school and cross my fingers that somehow she will avoid getting another nasty cold or stomach bug.....so far this season we have had the "just a virus", the flu times three, strep throat times two, a sinus infection..... have I told you that I am done with sick!?

Other then that life has bee good. Makenzie is happy and all is well!

Tonight I am tired. I have decided to purge the clutter from my house and somehow it looks more like a bomb went off instead of the clean, calm, mess free home I had envisioned. I guess it has to get worse before it gets better right?

Tonight I was also reminded how much love and understanding my boys have for their sister! They are turning into amazing young men and while the last 5 years have been hard they have sure gained so much in the love, compassion, and acceptance department!

I asked Mr. 10 to sit with his sister while I made her bed. This is what I found when I walked back into the room....... priceless!



and then he told me that he wanted to put Makenzie to bed. Other then myself, Mr 10 is the only other person who can get Makenzie off to dream land effectively!


Now I am off to get Makenzie's water and night meds together, fold some laundry and hopefully get some sleep!

Believe.... Prayer Works!

Thursday, March 8, 2012

Contagious Laughter

No words necessary!

Saturday, March 3, 2012

Picture WordPower

Makenzie shared her cold with mommy but sick doesn't slow us down!

A couple of days ago I started Makenzie on an antibiotic after her congestion did not let up and began to thicken and become colorful. By halfway through the next day a runny nose with no end in sight had all but dried up!

The last few days have been busy but not. Everyone had Thursday and Friday off of school. Mr 14 left with my mom on Wednesday night and headed for a long weekend to Washington DC to visit the White House and many other historic places! I can't wait to hear all about it!!!

Yesterday Makenzie had therapy but other then that we kind of just laid low and enjoyed not have anything to do.

This afternoon we had back to back appointments from about 1pm until 5:30pm.

Our first appoint was speech therapy. When Makenzie got her Dynavox Eyemax I customized a user area for her. However recently it was determined that there was not enough words to  keep up with Makenzie's progress. The therapist and I discussed the options and we decided that instead of programing each and every word into the user area and then having to revamp the current navigation system we decided to with a sentence generation software called Picture WordPower. 

This software is set up to give access to vocabulary as well as to generate sentences instead of being categorically based which is what Makenzie has been using. However we are not ready to give up the categories just yet nor was the software set up well for eye gaze. I got to work modifying 210 separate pages to work for Makenzie.

I first had to take it out of a USER file so that I could add it to Makenzie current User Area. I began with exporting 210 pages and then creating a package that I could import into Makenzie user area. Then I made a link on Makenzie's main page to access the Picture WordPower area.



Once opened on her talker this is what the original set up looked like on the main page.



There were  a couple of issues with this set up for Makenzie as an eye gaze user. The first issue was that every square inch was used leaving no place for Makenzie to rest her eyes. So I modified each of the 210 pages. First I modified the vocabulary to meet Makenzie's needs and limited what was showing to 42 buttons.. After the vocab made since I took one row of buttons off the left side and two rows off the right side, and then re centered each page.



The next issue I had was that the software was set up to only speak words when you added a period to the end of your sentences. Now Makenzie is smart but there was no way she was going to understand that she was picking words with no output that were then put in the message window that would speak if she ended the sentence.  So I then had to go in and tell the software to speak each word on 210 pages. There are some tricks in the programing to this so with the exception of a few buttons on each page I was able to reprogram a whole page at a time.

I also changed the placement of the pop ups, made a few new pop ups, and pulled much of my hair out during this process!

BUT................... it was SO worth all of the time.................because........................

Makenzie is doing really well with her new Picture WordPower.  She is still exploring the new page set, figuring out what each button says and where things are. She has begun to put two words, that make since, together at one time. One day I will get it on camera but I am going to have to get sneaky because every time I take out the camera Makenzie thinks she need to look at it and smile! It is very hard to use your eyes to make choices when you are looking at a camera and not your talker.

However I did get a bit of video this afternoon before Makenzie caught the camera out of the corner of her eye.



I am so dang proud of my little girl!

I have so much more to say but I will do so in another post! There are many great things going on around here and so many things coming up in the next couple of months! I really can't wait to share!

Believe..... Prayer Works!

Ps I have received several e-mails in the last few days. I want you to know that I got them and I have not forgotten you! With everything going on I have just not had enough time to sit down and compose my thoughts! I will. I promise!






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