Monday, October 31, 2011

Trick or Treat Time

This video pretty much summarizes Halloween 2011.

I honestly can't remember what we did for Makenzie first and only Halloween before her accident. I could dig up pictures but really I don't care because every year holidays in general get better and better. Makenzie is more aware and she loves each holiday with the same passion as the rest of our family.

Halloween was no exception. I am not a big fan of Halloween. I hate buying costumes that my kids wear for 3 hours and then never look at again. Carving pumpkins hurts..... literally and normally in these parts it is so cold outside that by the time you put on a coat, hat, gloves, and boots on you can't even see the costume any ways. However in the interest of the annual sugar high and making my kids smile we carve the pumpkins, buy the costumes, and freeze our little hineys off.

Makenzie may not be able to "carve" a pumpkin but she can play with the guts with the best of them. She had orange slimy gunk EVERYWHERE by the time she was done. It was in her hair, all the way up her arms, in her lap, stuck to her chair, on the floor, and I even found some in her diaper. She got a bath and so did her chair!

The boys, now they can carve! As they get older it is so nice not to have to do the whole project for them. I did help gut most of the pumpkins but they carved them all, even Makenzie's!

So this year Makenzie was a cat. Quite honestly I didn't ask her what she wanted to be. My friend hat an old costume that was her size and it was free. Did I mention I hate buying Halloween costumes? She was the cutest little cat on the block!

Makenzie, Mr. 14, and myself went trick or treating with a good friend and her kids, We must have been a sight to see lugging around two wheel chairs, and a stroller. Makenzie used her iPad to say "Trick or Treat" at EVERY SINGLE house we visited. In fact Makenzie lasted the longest of all of the kids. I think she would have kept on going and going if I had let her. (if you skipped the above video you really should watch it!)

For the first time ever my other two boys headed off into the night with their friends. I can't believe they are that old and independent already!

All in all it was a great night! Everyone had a great time and arrive home safe. If could be an interesting morning considering everyone got to bed super late but it was well worth the memories!


Believe.... Prayer Works!

Sunday, October 30, 2011


Technology is an amazing thing. The fact that my non verbal daughter who does not have the motor skills to accuratly nor easily touch a screen can talk with her eyes just amazes me. Shoot not only can she talk but she can play computer games, Skype, watch You tube videos, text, learn her letters, numbers, colors...ect, she can read books, turn on and off the tv, change the tv channels , play with remote control toys, and I am sure the list goes on.

Technology can also be very frustrating. You see ,before Makenzie can talk with her eyes the camera on the talker has to be calibrated to her eyes. When we got the talker I calibrated it to her eyes but it was a horrible calibration.

In order to calibrate the talker you have to follow a little cartoon animal around the screen. Then the computer spits out a number reading for each eye. Anything over 30 is not good. A good calibration is in the one to ten range. Makenzie had numbers in the 80-150 range. Not so good.

To complicate things Makenzie's talker had to be mounted to her wheelchair. The mount has 3 different joints which are great because they allow for a ton of customization. This is necessary because in order for the talker to work properly it must sit 17-22 inches away from Makenzie's eyes. It also has to be tipped just the right way to get both of her eyes in a little box that sits right in the middle of the screen.

Yesterday I think I must have spent 2 hours screwing and unscrewing the joints try and get it at the right angle to accommodate Makenzie's head tilt and eye position. I am pretty sure I remember some cursing and I finally just gave up after Makenzie erased a halfway decent calibration that wasn't really working very well anyways. Both Makenzie and I were done!

So today we went at it again with a fresh start. Before I began I asked God to give me extra patience because I knew it was going to be needed! I screwed and unscrewed the little joints over and over again. I changed angle after angle to get the right distance and tilt. Makenzie was getting the calibration numbers down but they would not budge out of the high 20's.I finally put the Allen wrench down and we took another break to go to Whole Foods to pick up the meat and grains for Makenzie's formula.

Tonight when it was time for Makenzie to eat dinner I was ready to give it one last shot. Lets just say that after at least 20 minutes of calibrating the worst target she got it! Her left eye calibrated at 5 and her right at 9! Perfection! I am guessing that there was at least 4 hours invested into those two numbers but guess what....... it works sooooooooooooooooooo much better and we should not have to do that again anytime soon!

On that note I have to laugh at the school. Ok...... they are doing an AMAZING job with Makenzie but on the talker front I foresee some issues.

Despite recommendations from several professionals to get a chair mount they have decided to order Makenzie a rolling mount for her talker at school. Why is this so funny you ask.... Well if it took me approximately four hours to get it mounted just right in a stationary place on Makenzie's chair I just have to wonder how much fun it will be to do virtually the same thing every single time they move the rolling mount from place to place. Makenzie's aid will have to carry around a tape measure and re track her eyes each and every time that mount or Makenzie moves an inch. I am also wondering how the rolling mount, the talker, and Makenzie are going to be moved around by one person. Yeah I am laughing.

I have told the school that I will allow them to use Makenzie's talker at school. After today though I am rethinking that offer. I will need to be assured that they know how to use the device, that they will not mess with the settings, and that they understand if this calibration gets messed up that I will CRY serious ugly tears and they will never again see her device. It will not be pretty!

For now though it is working! With some hard work, determination, and patience Makenzie and I got it done as a team. My little girl is AMAZING if I do say do myself!

Believe.... Prayer Works!

Thursday, October 27, 2011

Love and Laugher

 Makenzie had Hippo therapy today. I just love watching her up on that horse. The smiles and sheer pride are sometimes more then this mommies heart can handle!

She is doing so well with her head control on the horse. She is also putting a lot more weight into her arms in all fours and prone as well.


Today as I walked around the arena I was filled with a sense of peace and so much joy. I listened and watched all of the people who surrounded my daughter keeping her safe high up on that horse. The care and love a group of women who volunteer their time just to hang out with my kid. A group of women who come to those stables to help my little girl heal expecting nothing in return. A group of women who Makenzie has wrapped around her little pinkie finger and who's love is etched in her heart.


That hour in a cold barn, walking around in circles in the dirt was just what I needed this morning. I needed the peace the drive into the country offered. I needed the fresh air and I needed the smiles and laughter. My heart feels lighter.


This afternoon Makenzie and I played on the Internet again. I found another good website. I let Makenzie play for about 20 minutes before I took the talker away to give Makenzie's eyes a bit of time to rest. However the second I took the talker off of the mount Makenzie started to scream and did not stop until I gave her the talker back.

Here is video of Makenzie and her new game on

This evening I figured out how to make buttons on the talker software open up the web browser and then go to specific sites. I can't wait to see what Makenzie thinks about that tomorrow!

Believe.... Prayer Works!

Wednesday, October 26, 2011

Look At Me!

 Ok so I gave up on The Next Iron Chef and instead Makenzie and I played on the internet together. She had a blast and I got a few video clips. Man I love my kid and this technology really does rock!!!


Believe....Prayer Works!

I Am Dreaming of White Sandy Beaches

I have been thinking about writing a post for a few day but honestly I don't know what to say. Life is not bad but life is not good. Most days lately I feel like everything that I touch or even think about touching turns to some kind of disaster. Not many things are easy lately and it seems there is something on a daily bases that knocks me down both physically and emotionally. I feel like I am drowning.

I could write a post about how wonderful Makenzie's talker is or how at the last minute we got accepted into a Talking with Technology Camp.

But really those things seem to be over run by fires lately.

It is fall break around here and I have listened to my kids fight for 3 days. My daughters pump has not been working and I have spent hours listening to it beep instead of feed her.

The bank won't cash my escrow check because it is written out to myself and my ex husband. My ex has not endorsed it. The escrow company wont take his name off of the check even though I have court paper work stating that he has had no rights to the house for the past eleven years. This is the same man who has not contacted his children for almost six years nor contributed financially to their well being for over a year. This is a man that I have no clue how to find. So my some what decent sized check in reality is trash.

Oh and by the way ma'am.... it looks like you enjoy taking the brunt of everyone else's problems so I am sure you wont mind knowing that your ex husband filed bankruptcy on the house that you have lived in for 10 years. To top it off, even though you paid your mortgage payment every single month and brought several thousand dollars to the closing table in order to pay the house off in full, we have still been reporting you to the credit agencies for the bankruptcy that you never even filed.

Or maybe it is the fact that in order to have an accessible bath and shower in the only full bath in our house after we turn two small bathrooms into one,  I will have to justify why Makenzie would medically need both. It can not be about simple quality of life or maybe the fact that we would like to take a bath and relax every once in a while.  Oh and by the way your therapist needs to write another letter to the state because the first one was not good enough.

Maybe it would be the constant pain Makenzie has had in her stomach for the last week and a half after changing her g tube. She has not had any major stoma issues for at least 3 years and bam....... huge issues. Then there is the hospital who gave me a hard time for just stopping by to see if the nurse could look at her g tube site. Never mind I was already there for something else and would have just called and left a message if no one was available.

How about filing an insurance claim for several things which were stolen out of my car, (no pictures.... no camera.... yeah that was taken)  or the horrible headache and back pain I have had for the last several days.

Did I mention Makenzie's OT is moving out of state? 

There is more I am sure, but really I am feeling very done right now. I feel like no matter what I do life just keeps spinning out of control. I have a ton to be thankful for, I just wish I could spend more time focusing on that instead of figuring out how to constantly put out fires.

I am sure that this feeling will soon be a thing of the past but today being a single mommy to 4 children is proving to be a bit to much. Super mom has been removed from my title for today and I am just going to crawl under a blanket, snuggle up with my daughter while the boys go to a movie, and watch The next Iron Chef for about the next 3 hours while I dream of a poolside bar next to a white sandy beach in the middle of nowhere!

Believe.... Prayer Works!

Wednesday, October 19, 2011

Friends, Emotions,Talkers, Plans, Oh My!

This afternoon I had a good long talk with one of my closest friends. This friend lives hundreds of miles away. She has been my rock for over four years now. I had called her last night sobbing and because of our many responsibilities our conversation got cut short. So this afternoon when she called the first thing she ask me was how I was doing.

She then listened. She didn't tell me what I was feeling was dramatic or irrational. She just listened never once judging my thoughts. When I got to the end of my sob/pity party she paused and calmly said....... " In the four and a half years I have known you, never once has God slammed the door in your face."

My over emotional response to her comment........ "yeah well there is a first for everything."

Then I got more or less yelled at in a very supportive close friend kinda way. After more conversation we both decided that God does have a plan that is bigger then both of us and our special needs children and then we came to the conclusion that right now we are both sick of God's plan for our lives. God's plan is amazing but sometimes it is so hard to not know just what it is and why life has to be so dang hard sometimes!

It is so nice to have a friend that can bring you into a place of emotional rest while at the same time being completely real. I really don't know what I would do without her.

Then this evening I got another surprise from a friend who knew that I could use a smile today. When the phone rang and I was asked to come to the door, there she stood, flowers in hand, and arms open wide. It really was just what I needed. You know who you are...... thank you! I am so blessed!

On a much lighter note...... and one that makes me giddy........ Makenzie's talker will be here tomorrow. Her very own, never have to give it back, not a trial, brand new, in the box, with all of the accessories, talker!

At the beginning of this week the school received a talker to use with Makenzie for a couple of weeks. On Monday I took her user area that I programed to the school and we loaded it into the device. I expected her to explore the pages and figure out where mommy had put everything this time.

Explore Makenzie did. Very quickly..... like in a matter of 15 minutes she had found her favorite Disney game. She went back to that page over and over.

Then she found her colors page. Her aide and I asked her to identify specific colors. I don't know what I expected but I was very surprised when time after time Makenzie picked the right color button over and over.

Today at school her aide started the Kindergarten assessment with Makenzie. She passed with flying colors. Makenzie knows all of her colors and square, circle, and triangle. I am so over the moon proud of my daughter!

Then they read their weekly book in pairs. I programmed the books into her talker and so Makenzie got to read her book with a partner just like everyone else in the class. When they were done the kids all went to centers and I was told that there was a whole group of kids that spent center time quizzing Makenzie in her colors and again she preformed perfection!

So emotional highs and lows is the name of the game around her lately. Someone very important is leaving but after 3 years of fighting Makenzie has a way to tell us what she wants and how very smart she really is, a school that is listening and believes in Makenzie,  a new music therapist and massage therapist, and hope that continues to be renewed through the Grace and love of a God with a mighty plan!

Believe.... Prayer Works!

Tuesday, October 18, 2011

Sometimes Life Just Plain SUCKS!

I was going to write a giddy post about how excited I was to get Makenzie's talker. I have been programing the thing like crazy. Yesterday the school got a loaner device and I was able to put Makenzie's new user area into the device. She rocked it! She was able to identify colors when asked. She identified the letter and word of the week. She rocked!

However this afternoon during Makenzie's OT session I was informed by her therapist that she would be moving out of state within the next month. As hard as I tried to hold back my tears they still came.

This amazing woman started working with Makenzie on the cusp of some intense drama with two other therapists half way through 2008. She fit Makenzie into her schedule four times a week. She has worked closely with Makenzie's PT and knows Makenzie inside and out. Not only is she my daughters therapist, she is my friend.

I had a whole raw emotion post written out but decided instead to show you why I have been crying ugly tears all afternoon. If one more person tells me not to worry about it because I will find another OT, I am going to scream because Stephanie is irreplaceable.

So here it goes.....going all the way back to August 2008 ...........

 Our first trip to CA to buy Makenzie's Neuro Suit. Stephanie came along to learn how to put it on.

We made our way to the peer.

What a trip!

Then there was the trip to Costa Rica for stem cells Stephanie joined us on.

This is Makenzie right after her first Stem Cell injection. 

Our second trip to CA.  Stephanie tried to use a sheet as a Moby Wrap to carry Makenzie down the hill 
 and to the beach.


Photo Sharing - Video Sharing - Photo Printing

Hippo therapy.

Feather therapy. LOL More like giggle therapy.

Stephanie taught Makenzie how to hold onto objects allowing her to color!

Oh and did I mention that Makenzie still has full range in her hands?


For three and a half years this amazing woman has gone above and beyond to help Makenzie heal. She has been a part of our family. Really there are no words that could do the feeling I am having right now any kind of justice. So I think ugly tears are in order. Don't you?

Believe... Prayer Works!

Friday, October 14, 2011


After not writing for nearly a week it is so hard to know where to start.

The last week has been a bit overwhelming. I seem to go in cycles. For about a week I have it all together. The laundry is done, the house is clean, dinner is planned and ready at six not eight. Everything seems like a well oiled wheel. Then it all falls apart. Normally this happens when some outside issue comes along and steals all of my energy and all of the other stuff gets left in the dust. By the time I get done resolving the said time and energy consuming issue I am so behind I don't know where to start. After about three days I am able to pull up my bootstraps, get everything back in order, and wait for the next conundrum.

Last night I offered Mr. 12 ten dollars if he would pick up and clean our main living areas. He happily obliged and this morning I feel a bit more in control other then the pile of laundry screaming at me.

After I dropped Makenzie off at school and had a few minutes to sit down in peace other then listening to the scream of the laundry. I reflected on what really happened this week and was amazed by how much went right even though in the storm of this crazy week.

Really how can I forget how well Makenzie was able to sit this week!

and despite how upset I am with a hospital who refuses to take responsibility for misdiagnosing my son I can't help but have a moment to forget all about that when I see him outside playing with all of the new friends he has made at school. Regardless of what action I choose to take for today Mr. 10 is happy and almost healthy!

or maybe in the midst of more phone calls then I want to count I got some very good news on a piece of  Makenzie's equipment. After calling the hospital 3 times, the seating company, the feeding supply company, the insurance company, several attorneys, a music therapist, before I called Dynavox to check on Makenzie's talker order. I couldn't find a denial for the talker with my private insurance which is needed to pursue funding through medicaid. Just before I was ready to throw my phone into the dish water for the morning I got some news that I was not expecting....... at all! Makenzie talker has been approved and was shipped yesterday! I made the billing rep repeat herself three times before I believed her. So even though there are still a few snafus with the power chair Dynavox saved my phone from certain demise and lifted my spirits!

did I mention how well Makenzie is sitting these days?

how about taking a walk with Makenzie and Mr 10 last night and finding Mr. 12 at the park playing a game of football with a bunch of neighborhood kids. This got me thinking about how much God has blessed us in this move with not only a wonderful house but also a neighborhood full of great kids and better schools!

This is the day that the Lord has made. Let us rejoice and be glad in it!

Oh and did I tell you how happy I am with Makenzie's progress lately. You can see it when you look at how well she is sitting!

Life is good!

Believe.... Prayer Works!

Monday, October 10, 2011

Healing Hands

There have been so many healing hands in Makenzie's life over the last 4 years. When I saw that the theme for this weeks photo contests was Raise your Hands over at iheartfaces, I could not resist! 

God has used so many hands to show His healing miracle's over and over after Makenzie's accident. There have been many surgeons, doctors, therapists, teachers, friends, and family, who's hands have all played a very important roll in loving and teaching Makenzie along this journey. For that I am forever greatful!.

This photo was entered into the I Heart Faces photo challenge –

Saturday, October 8, 2011


Since it seems that I have been in the midst of some interesting and very important issues in my children's lives the last couple of months I thought I would write about another misconception that seems to be raring its ugly head.

Advocating is complaining

I felt the wrath of this misconception shortly after Makenzie's accident. The doctor who was in charge of the PICU where Makenzie was being treated decided that less then a week after her accident and 24 hours of her breathing tube being removed that Makenzie needed a permanent breathing and feeding tube. At this point Makenzie was not eating but she was breathing. I didn't think she needed a Trachea and I was not ready for anything more then the NG tube.

So I made a call to her pediatrician and for the first time on this journey took the first major leap into the world of advocating for my child. As I made my way back up to my daughters room I prepared to tell the doctor that we were not going to do either procedure and that we also wanted to be transferred to a different hospital for a second opinion. Shortly after I settled in next to Makenzie the doctor walked in. We had a very interesting conversation but I left feeling like he thought I was complaining about the care my daughter had received. His ego was very crushed but Makenzie was transferred within 6 hours and she never did end up needing a breathing tube. I could have been wrong but I was not going to put my child through a procedure she didn't need and it sure had nothing to do with complaining.

Advocating is not complaining!

I have made many calls to the patient representative office in the last 4 years. A couple of examples would be........ The night I was told that the ED could not replace Makenzie J tube for 3 days because it was the weekend and no one from IR was in. They told me instead that I needed to come into the ED to have IV fluids pushed from Friday evening until Monday morning when radiology was in instead of taking care of the 10 minute procedure that evening and letting us head home. Needless to say IR came in that night and were were back at home a couple hours later.

or maybe the time I was told the only way for Makenzie to have J tube to help her vomiting was another surgery with a new stoma (hole) on the other side of her stomach with a feeding tube placed directly into her intestines. I did some research on that one to find out that there was such thing as a GJ tube that went into her current stoma and through her stomach and into the intestines. Hmmmmmm

how about the time that no one in the hospital knew where I was supposed to go for a swallow study and by the time I finally figured it out they had cancelled the appointment. Yep.... that was another trip to the patient rep office and our appointment being held an hour later.

More recently reporting a surgeon who told me that he would do what ever I wanted him to do even if it was the wrong thing to do when I had questions about a procedure just so I would stop holding his OR up.

Or maybe discussing a situation in which my son was under served, misdiagnosed, and suffered an infection that could have taken his life.

I could go on and on but I think you get the point.

However yesterday I received a call from the head of risk management at the hospital. The hospital is still claiming that even though Mr 10 had EVERY single symptom of Appendicitis and is the highs risk category for this issue, they are not at fault and did everything they should have done. (which by the way was nothing) I am still not buying it.

We talked for a while about many issues and I told her that there were many times in the last 4 years that I have not walked into the hospital without stopping by the Patients Representative's office before walking out.

Her response to my statement made me sob right then and there. She kindly told me that because I have brought our issues to the hospital's attention so many times that I now have a reputation as being a complainer.

Once I pulled myself together I politely asked what she would have me do when my children receive less then quality care from their hospital because rolling over and just taking it is not an option for me. She did not respond. I had to ask her 2 more times before she gave me her direct number and told me to call her if I had any more issues.

Advocating is NOT complaining. Advocating is expecting fair and quality care, treatment, services, and, education for our families. I will not roll over and just take it.....and this is why........

Believe... Prayer Works!

Friday, October 7, 2011

Photo Drop

Here are a few pictures of Makenzie at school. She is doing so well and is loving every second she is there! 

Believe... Prayer Works

Thursday, October 6, 2011

The Good Fight!

This week I was reminded of a misconception when it comes to raising a child with special needs that makes me want to scream. 

Someone that is very close to me felt the need to point out that it seems like I like to fight. I just shook my head and responded with something like.... I am not sure I LIKE to fight but at least I am good at it. 

Raising a child with special needs requires and immense amount of advocating or fighting as some would call it. Much of the time it does feel like fighting and I am sure to an outsider it looks like a whole bunch of self induced drama. 

However, I would like to ask that before you view advocating for your child as fighting you show up to an IEP meeting with a bunch of big wigs who seem more interested in the schools budget then your child and can twist your words and the law to fit their agenda  or maybe sit in a surgery waiting room  reflecting on how sick your child is because of someone else's negligence while they poke unnecessary holes in your child's gut. Maybe you would rather sit on the phone making appointments, getting referrals, and jumping through so many hoops you run out of battery on your phone before 10 am. 

In the last couple of weeks I have found myself telling more people how sick I am of having to fight for every single little thing that is right and true. I am tired of being the underdog. I am tired of asking to speak to the higher up just to get somewhere. I am tired of getting one thing resolved only to have the rug pulled out from underneath me on 3 other issues I thought I had already taken care of. I am tired of fighting. 

The fight however is far from over. If you want to call all of the things I do to give my daughter the best quality of life fighting, then go for it. Call it what you will but what ever it is called, I am far from too tired to keep going.

In fact today I feel like a huge weight has been lifted off of me. I have been asking for accountability and action in two very different areas of my children's life. Today I got VERY good news on both issues which just reminded me once again why I go to such lengths to advocate for my children.

Given the public nature of this blog I am choosing to keep the specific events of today to myself but know that soon I should be toasting to some major successes and when that happens I will fill in the blanks here for all of you to toast right along with me. 
I will continue to advocate or fight for my kids. Call it what ever you would like. This mama bear ain't backing down! 
Believe.... Prayer Works! 

Thank You

I want to say THANK YOU to Steve Jobs for opening up the world to my daughter. 
Until the iPad Makenzie did not use her arms/hands for much. Now she touches the screen with her pointer finger to show us she knows shapes, colors, numbers, and letters. She can play games, read books, listen to music, and much much more! 
 You changed the world for Makenzie and so many children with special needs! Thank You!
Believe... Prayer Works!

Tuesday, October 4, 2011


 My son had been sick for 3 days. I thought it was a stomach bug for about the first two of those days. I woke up every morning anticipating Makenzie or one of the the other boys to become sick. It never happened. On Sunday afternoon Mr 10 fell asleep on the couch and did not wake up other then to go to his bed until very late Monday morning. He had a fever, vomiting, diarrhea  (TMI sorry), by this point he could barely walk, screamed in pain when you touched any part of his stomach, had a very gray skin color and was not eating nor drinking.

I had a doctors appointment for him that day, Monday August 15th. I called the office as I got in the car to tell them that I was going to the ER instead of coming in to their office because I knew something was very wrong. They agreed and called the hospital to tell them that we were coming. I had packed up all of Makenzie's stuff for 24 hours into the car because I knew we were not coming home that night.

However come home we did. After telling the doctor in the ER several times how sick my son was and questioning the need to do farther testing I was told that he had nothing more then a stomach bug because he was able to tolerate sips of Poweraide orally. Against my mommy gut and better judgement I left the hospital because I knew there was nothing more they would do. I had clearly expressed my concerns three times about the possibility of a bowel obstruction or appendicitis and three times the doctor clearly told me it was just a really bad 10-14 day stomach bug which was just at it's peak. I was told both verbally and in the discharge orders to contact my family doctor or come back to the ER if Mr 10 was not feeling better by Friday.

The next day Mr 10 was feeling better and even though I was not convinced the night before I began to think the doctor may have been right. That was short lived. By Wednesday afternoon Mr 10 was more sick then he was on Monday and spent most of the day sleeping on and off on the couch again. By Thursday I was demanding an appointment in the GI clinic as I was not going to go back to the ER for another $700 bottle of Poweraide and another misdiagnosis.

After being told they couldn't get my son in until the following Tuesday, and two calls to the patient representative, they found an appointment for me the following day at 8:30am. By 10:00 am the next day we had seen the GI doctor, been to ultrasound, and had a correct diagnosis of appendicitis in the form of a large abscess in Mr. 10 gut. We were sent back to the ED were Mr 10 was prepped for a CT scan and admitted to the floor. The CT scan showed an abscess 7cm in diameter and a calcification next to the appendix which completely confirmed a ruptured appendix. A drain was placed, a PICC line placed, IV antibiotics started, 6 days impatient, drain removed, a week out of the hospital, more pain, more swelling, 3 more abscesses, another CT scan, NG tube, another drain placed, 7 more days in the hospital, drain removed, two more weeks of IV antibiotics, a month of missed school, and a very, very tired mommy.

I placed a complaint against the ER for malpractice. They told me they were going to review it. Last week I got a call from the hospital to tell me they did not find any negligence on behalf of the hospital. I will spare you the details of the long and heated conversation but just know it was not pretty. I am now waiting for a call from the head of Risk Management because this is not over.

Today Makenzie's PT came and she asked me if I had seen Children's new commercial. She told me about it and I had to laugh. So tonight I googled it. By the time I was done watching the short 30 second clip I was laughing so hard I thought I was going to hyperventilate. You have to watch to understand why............

Imaginary Line: Children's Hospital Colorado from Tony Gaddis on Vimeo.

I am so tired of this hospital's arrogance. I am so tired of them not taking responsibility for mistakes made,staff under serving  my children, and doctors acting in a way that is not professional because well......... they can. I am done. This is a very good hospital and as angry I am at them it is oddly still a source of comfort for me. It is familiar and for the most part I have trusted them with my children's lives. They do many good things but this whole situation has pushed me over the edge. 

I have had a week to calm down. I am waiting on the call fro Risk Management the hospital promised me. All I wanted was an apology. I want something to be learned from this so no one else ever has to go through what my son endured for the last two months. I just want change. Apparently they don't understand a mother asking nicely for some accountability so I guess I will have to speak in a language they do understand...... if you get my drift.

Believe.... Prayer Works

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