Sunday, May 30, 2010

Bike Fun

Another wonderful day!

This morning we all slept in a bit. That was really nice!

My parents took the boys on a great bike ride this afternoon. In total they all rode about 16 miles! WOW!! They are getting so big! Makenzie and I hopped in the car as soon as they took off to the outlet mall. We found some really good deals and all of the kids should be good to go for summer clothes for a while.

We met up with my parents and the boys at Dairy Queen for some ice cream before they headed on the trek back to the cabin. I am so proud of them! What a ride!


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Photo Sharing - Video Sharing - Photo Printing



Photo Sharing - Video Sharing - Photo Printing



Photo Sharing - Video Sharing - Photo Printing


After dinner Makenzie hung out on the couch with her flowers. She was just a toughing and exploring her toy! My grandma spent a good amount of time with Makenzie this evening while I was playing tennis with the boys and they had a great time! When I got home Makenzie was so happy and laughing so hard! Thanks Grandma. Bellow is a short video of her and her flowers. I am just so amazed by her ability to reach and touch. This was a girl who even a year ago didn't even know she had arms! Go Makenzie! Thank You God!


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We all hopped in the hot tub tonight. Makenzie loved it and just kicked and splashed!

We are heading out in the morning after breakfast. Most all of our stuff is packed and ready to beat the traffic home. Please pray for a good ride home!

This has been a great weekend! I took care of Makenzie but all the rest of life was taken care of for me all weekend. I did not have to cook, clean, or do laundry all weekend. I was able to spend some really good time with the boys and we had a ton of fun.

This was a much needed get away! Thank You mom and dad for the cabin and the memories. Thank you for the break and for all you do for my kiddos!

Back to reality we go!

Believe... Prayer Works!

Saturday, May 29, 2010

Love Ya Bro... We Miss You Already!


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Off to Korea my brother goes first thing in the morning. Tonight we said our goodbyes. There were tears, there were laughs, but most of all we are all so proud! My 11 year old burst out into a full sob and then of course my tears came because my son was hurting. My brother gave him another hug and told him that he could see him on the web cam, talk to him anytime, and he would be back before he knew it. The tears stopped and he seems so be ok.

We had a great day today. We took a hike to a lake, took a nap, played some tennis, enjoyed some Starbucks, ate a great dinner, played some more tennis, the boys got in the hot tub, and now all is still! What a day!


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Photo Sharing - Video Sharing - Photo Printing



Photo Sharing - Video Sharing - Photo Printing



Photo Sharing - Video Sharing - Photo Printing


We all took turns carrying Makenzie on our hike. She did really well. It wasn't a very long hike but she really enjoyed it. When we got to the lake the boys found a tee pee that had been built so we all explored inside. Makenzie had a great time walking around looking at everything. The boys found a good climbing tree. My brother brought his dog, Sammy. She fetched sticks in the lake until she couldn't fetch any more. Makenzie just giggled away every time Sammy would race after the stick into the water.


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At the trail head there was a play ground. After our hike we stopped for a bit to play. The boys of course did the boy thing and climbed to the top of the play house. There was a tether ball pole and my brother dominated that game. Makenzie enjoyed the slide and swing.


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Photo Sharing - Video Sharing - Photo Printing



Photo Sharing - Video Sharing - Photo Printing


Then it was off to Breck for some coffee at Starbucks. I shared mine with Makenzie and she thought the whip cream was the best!

This weekend has been good. My mom. dad, brothers, and sister in law all left tonight. It was much quieter around here which was a bit sad but getting the boys to bed was much easier. My mom and dad will be back in the morning after dropping my brother off at the airport. We may go to church up here in the morning we shall see!

But for now it is time for some rest!

Keep praying for Miracles

Believe... Prayer Works!

Friday, May 28, 2010

S'mores


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In about 2 days my brother will be leaving to teach English..... in Korea.... for a year. I am sad to see him go but so happy that he is finally getting to live his dream after 4 long years of college.

My mom and dad tag teamed me for the last week to get me to come up to the cabin this weekend as a last family ho rah before my brother leaves. Makenzie and I have not been up to our cabin since the Christmas before Makenzie's accident. My mom and dad have taken the boys many times in the last 3 year but because of many things I have not felt comfortable coming.

Well, I packed the car up this afternoon and off we went.... to the cabin.

Makenzie did GREAT in the car. We left early so there really wasn't any traffic and there were no tears or any other problems for that matter. Smooth sailing! Thank You Jesus!

We had a really great afternoon. It is so beautiful up here and the weather is amazing!

The boys spent a lot of the afternoon riding bikes and just hanging out. My middle sons shoes are already soaking wet but oh well... that is boys for ya!

We took a walk to see the creek, the park, and the fishing spot where we watched my brother skip rocks. I guess there are some things you are never to old for.


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Then it was onto a fire and s'mores. The boys had a great time helping to start the fire and roasting marshmallows was a ton of fun. Makenzie loved the fire. She just giggled and smiled. She got to make a marshmallow too and seemed to inderstand what she was doing.


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Getting everyone to bed was.... well.... challenging to put it nicely. No one was happy with where they needed to sleep. I was grumpy because I am a person that needs space every once in a while. At the end of the day I need some time to not be a mom before I hit the pillow. To be alone. When there are 12 people in 4 bedrooms... alone is really hard to accomplish.

Then I couldn't find my food scale to measure Makenzie's Miralax and I just wanted to be at home, on my couch where everything is in a place where I can find it....

but

I don't really want to be at home. I am having a really good time. I do love being with my family and tomorrow is going to be a blast.

After structuring life to the millisecond for 3 years change is really, really hard but all in all God has been good and this has been an AMAZING day!

Thursday, May 27, 2010

Gifts


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I am spinning my wheels. I think my tires are bald and sparks are now coming off of the rims.

Makenzie had a wonderful day. She was so happy. She had PT and OT this morning and she was amazing! She is really getting weight shift and is doing wonderful in tall kneel. She has been weight bearing into her arms great and has been really relaxed.


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Photo Sharing - Video Sharing - Photo Printing


We had lunch and then I got a call from the hospital social worker regarding the meeting that was held at the hospital.

Crap.... that is really the only half way acceptable word I can come up with to describe the whole conversation. I am just spinning my wheels because they are never going to admit fault. They are never going to apologize. They wont do it not because they are right but because they would not want to be held accountable. Liable....hahahaha.... it will never happen.

Do you think for one second that they mentioned to the county that my first call to the GI department was made on April 30th (the day my daughters tube broke.) Did they tell her my call was not returned until May 3rd at which time I asked to speak to Makenzie's GI doctor who did not return my call until May 11th? The answer to that question is simple.......NO!

The Hospital Social Worker kept telling me she was so sorry. However, I really don't believe she means that. These people are so good at saying one thing and portraying a whole different story using all of their fancy words and text book crap. She told me at one point that she was sorry I felt the way I did.... I paused and asked her how she would feel if someone had put her family in this position.... yeah I can play the game to.... she had no answer other then I don't know. She ended the question by asking me if I had a support system.... seriously.... I told her that I had a very large support system all of whom where very irritated with all of this.

Tears, tears, tears! I am pretty sure I started crying about 5 mins into this conversation. There is only so many times you can hit the wall before you start cursing at it because it wont move. Clearly this wall isn't moving!

Shortly after I got off the phone with her it was time to head to my friend's son graduation party. We had a lot of fun and left fat and happy!

While we where there I got a phone call I had to take so my friend hung out with Makenzie for a few minutes. Typically as long as someone is with Makenzie she is fine. It doesn't really matter who she is with today she did something really sweet. When I walked back into the room I sat down next to my friend who had Makenzie in her lap. Makenzie looked at me and gave me a huge puppy dog pouty face and started to cry. It was just the most wonderful feeling to know (ok so I already knew this but every time she does it my heart just melt) that she wants me more then any one else and she knows the difference! Love it!

This evening I was able to talk to Makenzie pediatrician for a few minutes and I bring this up only to say I am sure this practice of doctors was a gift from God to my family 13 years ago! I love this doctor and really he and his partners in crime are the only doctors I still trust! PRICELESS!!!


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I am off to bed to rest my weary body. Please pray for peace, comfort, and healing!

Believe... Prayer Works!!!

Wednesday, May 26, 2010

Thank You! ( EXPLOITATION part 2)


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"Fear not , for I have redeemed you; I have summoned you by name; you are mine."
(Isaiah 43:1 NIV)

I am heading off to bed but I wanted to thank all of you for your kind words and prayers! I am sure you are sick of hearing about all of this and I don't blame you.... I am sick of it to.

If you missed my last post you can find it here. Take a look.

There were some other things that were said this morning that had to do with the hospital and the GI department that did not please me at all. I will give the details of that at a later time but for now I have a request in to meet with the ENTIRE GI Department.

There is tons of injustice in this world but if it can be resolved I will push and push and push. This will be resolved and fast. I will not be thrown under the bus so some group of doctors can look good over mistakes they made. Not going to happen if I have anything to say about it.

Once again Makenzie had a GREAT day and therapy went well.

I was able to talk to the principal at the Elementary school Makenzie may be attending next year and it went very well!

The conversation started out about my sons teacher and let me just tell you this school year could not end a second faster! Out of 17 teachers she is the first one I have have major problems with. I am so ready to be done with her.

I figured while I had him on the phone I would ask a few Makenzie questions. Every answer he gave was very kind and met my expectations. This makes me very happy. My boys have been students at this school for 8 years now. I know the staff and the school is very close to our home. I have all of summer break to decided what I am going to do but I feel like this staff is very invested in my kids...all of them... and will be good for Makenzie.

I am thinking about going to the school tomorrow or Friday to pop in on my sons teacher, the kindergarten class and the school nurse. the fun never ends! LOL

Thanks for praying! I need to go make Makenzie's food and then head to bed!

Believe... Prayer Works

EXPLOITATION

Once again I am sitting here in shock.

I received a call back from the social worker today. She was very kind and patient with me. Which was much needed. I told her how the GI appointment went and then took it a step further to ask her what was going on at this point and what the concerns where after talking to Makenzie's doctors.

Her answer was jaw dropping for me and both of her therapists that where here at the time.

She concluded that I take very good care of Makenzie because this was conveyed through conversation with all of Makenzie's doctors. Then she went on to tell me the original complaint was medical neglect and EXPLOITATION over the video I posted of the GJ tube change.

Please pick your jaw up now... you are drooling.

She told me that even after I explained my desire to put the information out there as a resource for other parents and for those who had asked many questions about the G tube and how it worked, she still felt that I was using Makenzie, (exploiting her) and to top it off..... hurting her.

The term "exploitation" may carry two distinct meanings:

-The act of using something for any purpose. In this case, exploit is a synonym for use.

-The act of using something in an unjust or cruel manner.


I began to think about that and here is what I realized....

When a child scraps their knee you clean it. Usually this involves some type of solution that HURTS but because you do not want your child to have an infection you clean it even though you know for a brief moment it will give additional pain to your child. This is not done unjustly. This is not done with cruel intentions. It is done to protect your child and keep them safe from infection. The same stand true for changing a g tube.

Before I pulled out Makenzie's tube I made 2 calls to the hospital. I had clearance from the IR department to pull the tube. I left a message with the GI department for advise on feeding Makenzie over the weekend which was not returned until a second call was made by me on Monday morning. I did what they told me I could do. Not to mention changing a tube is something that is acceptable to do at home, without a doctor. Something that parents of tube fed children do everyday all around the world. Something we were trained to do before we took Makenzie home from the hospital 3 years ago.

So does changing a G button hurt? I can't imagine it hurts half as bad as getting your child's ears periced. Which is not considered "hurting" your child but I don't know... I don't have one. Yes, sometimes when Makenzie has her tube changed she does cry. She also cries when she doesn't want to go to bed, when she does ROM, when she does therapy, when she wants to be picked up, when I walk out of the room, when she wants a toy..... that is how my non verbal child communicates with her world.

As far as exploiting my child.... I really don't have anything to say to that. I don't get paid to write this blog. Other then to chronologe Makenzie's life and help others in the process, I don't get anything out of it. I started Makenzie's Miracle to keep my family and friends in the loop on Makenzie;s life. This platform is an amazing way to do that both for people who love my daughter near and far.If I have ever gotten anything out of this blog has been some wonderful friends who walk similar roads as my family and support and prayers from people all around the world for healing for Princess Makenzie. These friends and prayer warriors have blessed and forever changed my families life in many ways. That is social networking... not exploitation.

Geez.

So here are a few videos I found online of PARENTS changing their child G tube at HOME. Some of the kids cry and others don't. Are they hurting their kids as well?...or.... Maybe they are just exploiting them and their medical condition. This is just crazy.

I don't really expect you to watch all of these but this first one is of a dad changing a GJ tube out for a G tube because his daughter tube was clogged.



In this one the child crys and tells his mom that it HURTS.



Little Emma crys when her button is taken out and again when it is replaced.







I sure wish that all the money that was being used to "investigate" this craziness would be spent to really fix what is broken. I realize that there are children out there who need to be protected and because of this fact the CPS system is necessary. However when you can say that you know my child is being taken care of very well per her doctors.... and you understand that replacing the button at home is acceptable why is that not the enough? Can you really sit and read this blog and walk away thinking I am using my child for some kind of ulterior motive?

If you can.... I will just stop blogging because that is not what this is about at all.

Tuesday, May 25, 2010

All That Really Matters


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'Stop telling God how big your storm is.
Instead, tell the storm how big your God is!'

Today was a very interesting day.

I woke up this morning knowing what I had to do and I started to immediately get grouchy. I mean really grouchy and I had been awake for all of 10 mins.

Then God touched me with this verse:

This is the day the LORD has made; let us rejoice and be glad in it. Psalm 118:24

I felt a weight lifted and my mood totally changed!

We started with 2 houris of therapy in which Makenzie did amazing. She is really starting to understand how to make one part of her body still while she moves the other. She did great in tall kneel and even let her PT shift her weight over her hips without flexing! The look in her eyes is just beautiful when she knows she has done something new.

Then we headed to Makenzie's school.... yea you read that right. I had to go get her chair base and extra G tube that was there.

I fumed and scoffed the whole way there. When we pulled into the parking lot I am sure if it was humanly possible there would have been flames shooting out of my ears.

I walked to her classroom and opened the door. The kids where at centers and all looked up and where so excited to see Makenzie. The teachers were overly nice and I was overly short. I had no intention of making small talk and I was sure not going to talk about Makenzie either.

I stopped at the front desk to get her button. The secretary went to get the nurse and of course it was "the one" I asked her for Makenzie's button and well..... she had to go get the other nurse because she didn't know where it was. Ha... you have got to be kidding. I am quite glad Makenzie didn't have any problems at school because not knowing where a piece of a child's medical equipment is just blows my mind but she was concerned about me....hmmmmmm

Yes this is the day that the Lord has made and I rejoiced because when I walked out of those doors it was the last time I would ever do so again.

So I pouted around trying to let it go. I pulled her out of school so really it didn't matter right. I felt bad for being so short with everyone there but I really didn't have anything nice to say so I elected to say nothing at all.

Later in the afternoon I got a call from a gentleman at church asking me if I could get him some pictures for a fundraiser that a group is planning for Makenzie. Well, you all know that I can't resist in that department. Pictures? how many ya want? 100.... na maybe 200... that is a couple right? LOL!!

God touched me again. This time not with a verse but with pictures and memories.

I found myself looking through the last 3 years of pictures. I then moved onto videos.

Ya know what I realized.... God is so good. Makenzie is a miracle and I am an amazing mom. The school teachers, nurse, aids, and specialists are the ones missing out and it makes me really, really sad. I feel like after nearly a year, none of them really took the time to truly get to know who Makenzie is.

I hope Makenzie left each and every one of them with the twinkle in her eyes. I pray they all remember Maknezie's amazing laugh which often brings tears of joy, and most importantly God's hope. I pray they all save Makenzie's pure innocent joy in their hearts for a long time to come!

So here is a look back at a few videos over the last 3 years. We have had a good year. God's healing and faithfulness has been amazing..... that is all that matters!













BELIEVE... PRAYER WORKS!

Monday, May 24, 2010

Brother Love!


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Makenzie has started crying when her brothers leave for school or walk out of the room! It is the cutest thing ever!

Today Kaleb read his book to her for a long time and she loved every second!

Life continues to be busy but all is well.

I am tired and going to head to bed. I am so sorry that I have been a slacker on the blog front but I am tired. I don't really have much to say because I do not have the energy to analize everything I write in fear it may be something that could be taken the wrong way. I love my kids with everything that I am and for now even though I want to write about life and Makenzie's journey I choose to be careful. I am sorry but we are still here and we still need your thoughts and prayers! Please continue to pray for Makenzie!

Pray for Miracle's!

Believe... Prayer Works!

"We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ."
(2 Corinthians 10:5, NIV)

Dear Father,
In those times when the battlefield is in our minds and we feel hopeless because of our circumstances, we ask that you would help us to take every thought captive and make it obedient to Christ. Lord, we ask that you would help us to have a truly godly perspective on those things that seem so impossible to us. We pray that we would be transformed by the renewing of our minds (Rom. 12:2). Help us to see the bright hope we have for our future, and that you have a destiny for us. We thank you that because of our covenant relationship with you that we are able to put on the mind of Christ in all things (1 Cor. 2:16).
In Jesus' Name,
Amen

Sunday, May 23, 2010

Love that Girl!



We had a pretty uneventful day. We made it to church, had dinner together, and got some things done around the house!

Makenzie did not want to go to bed tonight. After I put her down she laid in bed just a talking and giggling away. Two times when checking on her I found her sideways in the bed. She was moving like crazy!! When I put the boys to bed at about 9:15pm she was still awake so I went in to get her hoping a few minutes up would help.

I took her into the boy's room to tuck them in and when I turned to leave Makenzie started wailing! She did not want to leave her brothers! How cute is that!

I finally got her to give in about 9:45pm and the house is now quiet.

Time for another week to start!

Keep praying!

Believe... Prayer Works!

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