Friday, July 26, 2013

Why It Is Important: McNair Kids Camp Fund 2013

Wednesday was hard....physically & emotionally.

It reminded me why getting the kids to Camp Korey is so vital. Why having something to look forward to, and creating memories to hang onto, is so important.
Disney Channel & Iphone make it bearable

Madison and I started the day before the sun came up. We were on the road by 5am, and at our hospital by 6. By 7 she was in pre-op, where finding a vein willing to cooperate took two sticks, digging, and two different people to make it happen.

Madison made sure to get the name of the medic-turned-IV-placer so she could plug her into her phone, for next time.

Yes, my 16 year old daughter has a list of blood takers and IV placers for every hospital and lab we need to go to. Knowing when we find one that can make it happen, as painlessly as possible, we ask for them again.

There will always be the need.

By 7:45, she was doped up on Versed and rolling down the hall, away from me. I watched and marveled how "old hat" this is for her. How she casually (albeit a little drunkenly) chats with the nurses wheeling her away, and how, without trepidation she tells me she will see me in a bit. Then I sighed, because ever so often it hits me....this isn't "normal"...and she is amazing, brave, and incredibly forgiving to us all for what she must endure at our hands.

As I walked to the all too familiar waiting room, and went through the routine of telling (the same nice lady I see almost every time) my child's name, I found myself looking for some spark of recognition from her. She seems to be one of the few that doesn't recognize me on sight. But then, she hasn't met my children...

They are always in an operating room when I am there.

They are the spark people need to recall that last encounter...they are the reasons to remember. I smile to myself thinking of the impact they have, and how they always have something to say or do that makes people smile.

I follow my usual routine of running to Starbucks down the hall, grabbing (more) coffee and something to eat, and willing it to take at least a few minutes so I am not left with my thoughts, and the less than comfortable chairs, for too long. I wander out in the hall, hoping to see someone I know (which happens far too frequently, considering I am standing in a hospital)...someone who can fill a few more of the minutes I have to wait. I wander for a few minutes, then hurry back to the waiting room, worried I might take too long and miss the doctor. This time, I see the surgeon as he hurries down the hall to join in on the procedure, already in progress in the OR. I know his part won't take long, so I make my way back and sit down.

Sometimes, the plans we make going in are not always how  it pans out.

The plan was to:
1. Put her under to scope her esophagus and stomach to see how our control of reflux was going, and to make sure we didn't see any signs of issues from the iron she takes, or yeast, due to all the antibiotics she is on.
2. To remove the long feeding tube that was placed after her surgery in April, that we had been unable to remove here at home. We tried twice, with the second attempt leading to another abscess.
3. To have our surgeon fully examine the g-tube tract for signs of another fistula, or an explanation for the latest abscess.
And 4. To replace the long g-tube with what she has always had, called a "button" g-tube.

Madi was desperate to get that long tube out and her old one back in. Desperate!! The long one hangs down a ways, doesn't clamp (leading to messes when trying to hook up to her feeding pump), is more obvious, and in general, just isn't what she wants. In this life, she has to put up with enough, so we do all we can to make it as unobtrusive as possible.

How things actually went:
1. We didn't have the anesthesiologist we were told we would have. Not a huge deal, but I have gotten used to not having to explain everything and convince them we should do what we know works. I hadn't prepped for the discussion, and with that, I did not advocate for Madison as well as I should have.
2. While the scope went as planned, there was a new finding. A nodule was found that hasn't been seen before, but we are pretty sure it's something that happens sometimes when you have been on PPI's (reflux meds) for too long. Lord knows she has, and we talked again about the need to do surgery to hopefully stop the reflux and allow us to get off the medication. Biopsies were done, so we will know more next week.
3. The surgeons inspection of the g-tube tract was revealing. While not another fistula, there is a fissure (tear) running from the stomach to about halfway up the tract. Barring us allowing the g-tube tract to close, something we cannot do, the healing process is going to take time. How much is anyone's guess.
4. This fissure means we could not switch her back to her old g-tube type, and another long tube was placed. The button type would have put enough pressure on the stomach side of the tube, it would cause more tearing and there is a real risk of the balloon that holds it in place moving into the tract and causing more damage.

I knew immediately that Madison was going to be upset with this change in plans. It was, after all, the ONLY part that she cared about.  My feeling that she would wake up from anesthesia and immediately pat her stomach to feel the new tube, and be confused when it wasn't there, apparently is exactly as it went.

I had to chuckle at our doctors a little...our GI and surgeon are friends, and according to our GI, they apparently had a bit of a fight over Miss Madison. GI was all ready to place the button g-tube when the surgeon came in and promptly told him no way. GI insisted he was going to do what his patient wanted....surgeon said no....GI insisted...surgeon threatened to walk out...and they were at an impasse. Once the surgeon found the fissure, even GI couldn't disagree that the button would cause more problems, but he wanted me to make sure Madi knew he fought for her, and was bullied by our surgeon....LOL!

As expected, Madi was a mess when I got back to recovery and could explain what happened. I haven't seen her that sad in a long time. And my heart broke. And there was not a thing I could do to make it better.

And then....we talked about camp. Little by little, as we were discharged and made our way home, she smiled a little more, and distracted herself with camp plans. The Dr. Pepper with "good ice" from Sonic helped too.

What happened, in the grand scheme of things, was not a big deal. She has done the long tube for 3 months, and put up with it like a champ, and she can do it again. This was one of those quality of life moments....she needed the things to go back to the way they were... she needed this "win".  She was disappointed, and sad, and faced with a set back she didn't need.

She also proceeded to do what Madi does so amazingly well....she quickly started getting "over it".

My day wasn't done, oh no!!

A drive home, a switch out of children, and I was on my way back with Chance. Wednesday was the day we met with our pain doctor to try and get him some relief and a plan. For reasons we still don't understand, Chance has been in a decline since January, that has included a significant decrease in physical stamina, constant muscle pain, a week long episode in April of severe muscle pain, and, as time has gone on and his body has been stressed, Neuro issues, GI problems, and an increase in fatigue.

After consulting with everyone I can think of, making changes in physical therapy routines, and testing what we could think to test, he & I were finally faced with the need to start treating the symptoms and hoping for some relief.

The appointment went well, and we have a plan that we hope might work. It won't fix whatever the problem is exactly, but at this point, pain relief is a huge need.

Distraction is too. Camp Korey is an awesome distraction, coming exactly when he needs it. Coming exactly when I need it too.

Thursday, my inadequate advocating for Madison came back to bite us on the butt, when she woke with every muscle in her body (even her tongue) in severe pain!! It was a long day, with lots of phone calls and worry, but we finally were able to determine that she was given something she hadn't had before, and that is likely causing this problem. Once we figured that out, pain meds were given, and by evening she was in much better shape.

Days like these, they are hard, but they remind us to hang on even tighter to those things that mean so much to us. We are so very grateful for each and everyone one of them.

We are steadily making our way to this goal....with your help!! We thank you, from the bottom of our hearts, for your support.

I have extended the deadline on the fundraiser to Sunday, and the raffle drawing will take place Monday morning. If you feel led, we are still in desperate need of your help at

We fly out tomorrow evening, deliver Chance & Madi to Camp Korey on Sunday, and Abby on Monday for the start of another amazing, life changing week. All thanks to you.

Thank you.

Tuesday, July 23, 2013

A Raffle: McNair Kid's Camp Fund 2013

We are so grateful for the support we are receiving. Thanks to you all, we are making progress towards our goal of getting back to Camp Korey with the kids.

I am reminded how hard it is to ask for help.....and how incredible our community is when we have to do it.

With that in mind, we want to offer something creative to those that are able to help. 

For every donation of $25 or more made by July 27th, your name will be entered into a raffle for an original piece of art made by Abby, Madison, and/or I. We will work with you to create something just for you!! (Those that have already donated will be entered also)

We will draw two names and announce the winners by Monday, July 29th....the first day of camp!!

Some examples of the work we have done:

All acrylic on canvas

Acrylic on Canvas (paintings)
I Love Big D photo collage (20x20)

Friday, July 19, 2013

McNair Kid's Camp Fund 2013

Dear Friends, Family, & Supporters,

We come to you today to humbly ask for help to make it possible to get the kids to Camp Korey again this year.

Donations can be made at or by clicking on the link on the top right of this page.

There are moments in time, and acts of kindness, that touch you at the depths of your soul. They happen rarely, and when they do, they move you, and take your breath away. Thanks to all of you, our family has experienced moments like this several times over, on a grander scale than we could have imagined.

I’ve seen and met angels wearing the disguise of ordinary people living ordinary lives.”
Tracy Chapman

These moment’s for us started with a plea for help to get the kids to camp each summer; and it has been met with many angels. With each act of kindness, our hearts swelled a little more, and we were (yet again) blown away by the support—from the “village” we have been blessed with for our family. I was again reminded how much one person can make a difference in another person’s life and how a group of individuals can provide a family with a life changing experience.

They may say Disney World is the “happiest place on Earth”, but for one week in the summer, I have no doubt that Camp Korey really is. The smiles on every child, counselor, nurse, and doctor tell me I am right. Each year we wonder how we can possibly top the year before, and somehow it happens. This place…Camp Korey…and the people there, change lives.

With your help, this year we return, perhaps more triumphantly than ever before….This year we reach the goal we set last year to be returning to this special place as a whole family, with Michael; Chance, a year older and a year wiser, returns a seasoned counselor, with hopes and goals for every one of “his kids”; Madison is returning, in the role of LIT (Leadership In Training) for the first time!!; and Abigail will be savoring her final year as a camper.

This year, while impossible to imagine it being possible, we are even more grateful for this blessing in our lives.

Camp Korey’s mission is to “honor the courage, strength, & determination of children and their families who battle life threatening and serious illnesses; and to provide them with a safe, friendly, medically sound environment in which to simply have fun and be kids.  Camp Korey fulfills this mission in amazing ways!!

For those that may be new to our story, my name is Heather and I have been married to my husband, Michael for almost 25 years (our anniversary will happen while we are in Seattle). We are the proud parents to three amazing young people….Chance (19), Madison (16) & Abigail(15).  I write to you today to share our story and to ask for your help to make summer camp possible for our children again this year.

Camp Korey 2009
Chance, Madison and Abigail have endured a great many challenges since they were very young, due to an inherited metabolic disease called Mitochondrial Disease.  Mitochondria are present in every cell in the body except for red blood cells, and are responsible for the production of energy for the cells to use to function.  When a Mitochondrial Disease is present, not enough energy can be produced and many body systems are affected and progressively fail to provide their function within the body.  Any stress on the body, even something as simple as a cold, can cause devastating affects. It is a life threatening disease with no cure, and minimal treatment options.

Camp Korey 2010

Camp was initially important to make happen because it was a “typical” right of passage for childhood, and one we thought  would never be possible for the kids. Due to all three being unable to control their body temperature correctly, most summer camp locations are too hot for them to be able to participate, and their medical needs make most camps, even those for medical reasons, unable to handle their complex needs.

Thankfully Camp Korey, just outside of Seattle, Washington, exists and they are the first & only camp in the country to have dedicated a week to Mitochondrial Disease kids!! Camp Korey is a medically supervised camp staffed with physicians and nurses, and trained camp counselors for children suffering from serious and life threatening illnesses.  The camp provides a week-long experience of camp programs and activities for children ages 7-15 at no cost to them.

Camp Korey 2011

What camp has become for the kids is so much more than giving them a “typical” experience.  It has changed their lives!!  They come away from camp more confident & independent, but more importantly, they come away in better shape physically, mentally & emotionally, with a renewed spirit of hope and optimism.  It is truly incredible to see them shine, literally, after a week at Camp Korey.

Camp Korey 2012

To quote Camp Korey’s website: “For a few days or more at Camp Korey, children enjoy the novel experience of being defined not by their medical diagnosis, but by their spirit, their creativity, and their own potential.” Thank’s to Camp Korey, our children have the chance to be defined by such wonderful things.  Thanks to our supporters, like you, they have this chance to be so defined!! Its because of you and ALL that you do, that these kids can flourish and be amazing, at Camp Korey, and in their world in general.

While the camp is free to attend, we do have to get ourselves there, cover expenses getting the kids ready to go, and expenses while we are there, and this is where you all come in.  
We need your help to make it happen!!

Fifteen years of very high medical expenses has devastated us financially, so something like this is just out of our reach without help.  This last year has been especially difficult for our family, and all three need something to look forward to, and are so excited about the prospect. All to say, we just have to find a way to make this happen.

We are working hard as a family to raise the money needed, and are incredibly grateful for any contributions you might be able to make.  We have full faith that this is meant to be and are looking forward to making some incredible memories.

Thank you for your thoughtful consideration of our cause.

Michael & Heather McNair
Proud Parents to Chance, Madison & Abigail

Previous posts about Camp:
McNair Kids Camp Fund 2011
Incredibly Blessed
Happiness is

Camp Korey creates some awesome videos to share their mission. The following three tell a little more about the Camp, and include the kids and I talking about what Camp Korey means to us.

Wednesday, July 17, 2013

Bullet Points & Random Pictures

There is so very much going on over here, which calls for a bullet point post.

And random pictures.

Of course.

Love this girl
*A week in Houston in May to see the kid’s medical team there (some of whom we had not seen in person in more than a year because of our “excitement” here last year) = long appointments, too much information shared, more changes to care than one can imagine (we are STILL working on making some of the changes happen), and precious time with friends.
With our special friend, Cayde (new lungs!!)

*My trip to the Mito Symposium went really well. I have a partially written post I hope to get posted soon. Lots of information, awesome people, and a few days in California is note worthy.

Pool time
Pretty girl

My birthday with the Fam

*We have now tried to remove the MicKey peg tube (feeding tube the surgeon put in after Madison’s surgery) TWICE and cannot get the stupid thing out. This last attempt resulted in…..wait for it……another stinking abscess. Another stinking abscess = Madi will be going under anesthesia next week for an endoscopy so they can remove the tube and explore her g-tube tract looking for another fistula…..on Wednesday….four days before we leave for Seattle/Camp Korey. Nah….I am not stressed about that AT ALL!!

Father Day
Good2Go Tacos...mmmm

*We had some precious friends come up from Houston and stay with us for the 4th of July weekend…..and had an amazing, awesome, wonderful time.
Fireworks at Fair Park

*My precious grandmother developed some issues and ended up inpatient on the 1st of July. Two hospitals & a skilled nursing facility later, she is settling in not far from my home, and is recovering like a CHAMP!! It was a stressful, busy couple of weeks while we got her back to better health, but she is improving daily and we are looking forward to having her closer by.

What a black labrador amuses himself with, apparently

*I apologized to Abby for being gone so much lately (time at the hospital with Memaw) and she responded with, “It’s okay mom, the hospital is just what we do in the summer.” Ugh. It was a gut check for me, but she truly meant it as reassuring.

My son was called for Jury Duty today!!!

*Prep for Seattle has been slowly, but surely, happening. The McNair Kid’s Camp Fund post will go up sometime later today!!!

Look at that…..back to busy and “normal”.

Did last summer really happen????????

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