Monday, January 31, 2011

{Medical Monday: Houston Bound}

Off on another wild adventure for the McNair’s!!  We head down today for the week and will get at least 8 appointments in while there…..actually a “light” week for us!! All three see Pulmonology on Tuesday, Madison will see her rheumatologist and be hooked up for a 24 hour halter monitor on Wednesday, and Chance will see the motility GI nurse and the girls will get sleep studies done on Thursday.  Easy peasy…easy peasy.

Prayer requests for the week…..

That our pulmonologist is not too annoyed with me that we have still not started oxygen with Chance & Madison.  There are a hundred excuses…..not one good enough….but I will spare you all.  If I am honest, it’s mostly me struggling with the idea.  I am still trying to wrap my mind around it.  Reality is though, it might make a huge difference for the kids and I just need to get over myself and help them go into it with the right frame of mind.

That our rheumatologist finds a decrease in inflammation in Madison’s knee’s, indicating that the steroid injections have worked for now.  We are almost 2 months out since they were done, so we should be able to tell where things stand.  If they have not reduced the inflammation, we will be faced with starting another medication to gain control, and no one likes the idea of starting something that will make her even more susceptible to infection.

On the halter monitor we’d actually like to see her have one of her heart-beating-hard episodes in hopes that we can see what might be happening during those times.  At the same time, I would be thrilled if it shows nothing and we are able to walk away with good news.

That Chance will have gained (even just a little) weight. 

And finally, that the sleep studies give us the information that we need to make adjustments to Madison’s Bipap, and that either there is a clear cut reason for Abby’s fatigue that are sleep related (with a correlating easy fix please) or that her sleep study looks pristine.

Some of these answers will come while we are there this week, while the rest will trickle in over the following week or so.  I will keep you posted.

Having a “light” week means we will get some good time to spend with family and friends and we are looking forward to it SO MUCH!!  We will no doubt be entertained, loved on, and very cared for while we are there.  Sure does make going down so much easier to do.  Cannot even imagine making it down like we do without that blessing.

In other medical news….

Chance did at least maintain his weight at his last weight check.  While we would have liked to see even a small gain considering the insanely high number of calories he’s taking in daily, no loss is good too.  We will see how his weight looks this week, then he’ll have another weight check on the 10th at the peds office.  With the lack of gain, he now needs to more consistently get in 3 supplemental drinks a day, and we are going into the next plan of action…..checking other organ systems in case they are stressed and consuming more calories.  We will see pulmo this week and will hope that perhaps the o2 at night might make a difference, and will do an ECHO to check his heart when we are back in Houston on the 17th.  We will talk with the Motility GI nurse this week on what the next steps will be if neither of these systems appear to be the problem.

Otherwise, the boy is doing pretty well right now!!!

Madison is having some “female problems” that I won’t share here and we need some prayers that we can find some solution for.  She’s worn out dealing with it and really, really needs a break.

She is <knock on wood>  14 days out since her last antibiotic and is staying infection free thus far!!  We are still in that 21 day window that she likes to come up with another one, so not quite out of the woods, but getting there.  Sincerely praying she can get a break for a while.  We will re-test her Mycoplasma levels on the 14th and would very much like to see those numbers come back not showing something chronic.

Fatigue is still pretty intense, but 2 weeks of no infection means I am seeing at least a little improvement. 

Abby started Florinef about a week ago to help with her low blood pressures and at least thus far, we are not seeing any negative side effects to it.  Not sure how much positive we are seeing yet, but watching for them.  Hope is that it will lower her heart rate and stop the postural dizzy spells she deals with daily.

Otherwise she is really behaving herself right now!!  Such a good girl<grin>.

Please keep our little friend Cooper in your thoughts and prayers right now.  He is, quite literally, fighting for his life and he needs comfort, as do his family and friends.

Thanks so much for the thoughts and prayers this week!!!  It’s been more of a trial than usual to get everything in place and taken care of this time, but all appears to be on the right track now and we should have a productive week.

Saturday, January 29, 2011

{We Can Make A Difference Weekends: United Mitochondrial Disease Foundation & Energy For Life Walk}


To read more about the UMDF, check out our Pay It Forward With Us link above.

This organization always hits close to home, but maybe a little more acutely right now than usual.  We have had a hard few months in the Mito world….we have lost far too many precious children, and are witnessing the epic battles of far too many more that are, quite literally, fighting for their lives right now.  Thanks to medical science, the doctors have the means to help them fight, but not on the level of where the problem really lies.  They cannot help the mitochondria work more effectively, we just simply don’t know how to yet.

I am asked regularly to share what Mitochondrial Disease is….and I have a pat answer….We have mitochondria in all the cells of our body, except for our red blood cells.  The mitochondria take the food we eat and the oxygen we breathe, and convert them into a chemical (ATP) that can be used by the cells for energy.  When the mitochondria  are not working correctly, not enough energy is able to be produced and this results in organ systems not able to function the way they are supposed to, even potentially failing all together.  It’s simple, gets the job done, and isn’t emotionally charged.  I think for most, it’s how they want to hear about it, and I am okay with that.  At least they know what mitochondria do now.

A friend recently shared that her daughter’s science teacher was talking about mitochondria in class one day, from the perspective of it being a way to trace human remains back through the maternal line.  When her daughter mentioned that there is also mitochondrial disease, the teacher denied it and refused to believe it was possible.

Within the medical world, it’s gaining acknowledgment, but we still have a very long way to go before the medical establishment in general really “gets” this disease.  There are more misconceptions out there than factual information, and this affects care for so many.  It cannot be put into a box like most diseases and this just doesn’t work well within the system that we currently have.  It’s getting better, it’s just not there yet.

It’s difficult to comprehend, but this disease really has no medicinal treatment, much less a cure.  There is no medication that is targeted at the root of the problem, just medications to try and control the after affects.  There are medicines and supplements that are thought to help facilitate the functioning of the mitochondria, but they are mostly unproven and only sometimes seem to make any notable difference.  We play a game of trying to catch the organ systems that are struggling so we can put band-aids on them.  And then we pray…..pray that we caught it early enough, pray that the treatments we choose will do more good than harm, pray that no other organ systems will get so stressed that they start to struggle, and pray for relief.  For a pause in the action.  For some time for them to recover, even just a little, before the next thing hits.  And we watch….constantly….for any small signs of impending trouble.  And then we either pat ourselves on the back when we catch a subtle hint of something and find the reason, or we struggle with coming to terms with having missed those subtle signs and catching something late.  And sometimes, well, sometimes none of it makes any difference.  Sometimes things go south with no warning at all, and there really isn’t much you can do.  We NEED treatments.

Treatments = Hope.  Treatments mean the possibility of having the time to wait for the cures.

All this means, research has to be funded and ongoing.  Without research there is nothing…no treatments, no cures….no HOPE.  At least not on the medicine side of things.  We will ALWAYS have hope….but we need the tangible parts too.  We need the weapons to fight this thing with.

As we watch so many around us grieving the loss of their child, or in the hospital & at home fighting for every moment, we ask you to consider supporting the UMDF and their mission.  You can either donate directly to the Foundation, or support our friends in Houston during the Energy for Life Walkathon coming up next Saturday, February 5th.
 We thank you for joining us in this worthy cause!!!

Thursday, January 27, 2011

{Things I Love (about Abby) Thursday}

What birthday is complete without a week of celebrating…..or a month….you know, whatever it takes!!!  With the craziness that is our life, it shouldn’t surprise anyone that we really do actually somehow find ways to keep celebrating for as long as possible….just to get it all in somehow!!

I wanted to write more about Abby this week and it occurred to me today’s alliterative title could work as another chance to brag on my girl.

The Things I Love About My Abby-Gabby-Gooby-Girl
Wish Child Ambassador Wish 100 2009

Those expression filled eyes!!!  We teased at Halloween that the evil look she was giving as a zombie-prom-queen-jealous-runner-up were pretty much the same one she gives when she is unhappy with you…..she can make you cringe a bit!!

They are also the eyes that can express the deepest love and the greatest of joys.  People say the eye’s are the windows to the soul, and in the case of Miss Abby, I believe it.

Those freckles!!  Just a light sprinkling on the cheeks and over the bridge of her nose…..just enough to notice and make an impression.  I am so glad she shares them with me!!

Her passion!!  Every emotion and feeling, is felt passionately by this girl. There is never any question where she stands with something, nor that she will fight for what she knows is right.

Her leadership…comes naturally, and without being bossy.  I marvel at how other people follow her lead, and how effortlessly she does the leading. 

Her humor….the girl is FUNNY!!!  Her timing is amazing, and her ability to do impressions is pretty remarkable.  She has been, and always will be, the comedian of the group, and truly loves making others smile.

Her zest for life….is contagious!!  No challenge seems too daunting and she is willing to give it her all.  She is, I think, an adrenaline junky like her dad.

Her selflessness…is legendary!!  The first time I realized how deep and real it was, she was 5 years old and deciding what she wanted her Wish from Make A Wish to be.  She came to me and wanted to know if we could “go someplace snowy so Madi can play as much as she wants and not get too hot.”  As much as anything else, her wish was for her sister to be able to participate and not get sick….amazing.  She has continued to amaze me with her giving spirit.

Her sense of self/being different…..unafraid to be unique and creative with her life!!   LOVE IT!!

Her intelligence….smart as a whip, academically and otherwise.  She is the child I worry the least about being out there in this big, bad world.  She is street smart without having experienced being on the street. 

Her art…..I love sharing this passion with her, and so awe struck with the innate ability she has. 

Her strength……I could not be prouder of how she continues to work through her fears!!  Sometimes, feeling so deeply means so much of what our family deals with hits her the hardest.  I have watched her grow and find ways to cope over the years and while I wish I could take it all away for her, I am comforted knowing she is gaining needed skills for life.

Her spirit…..unique, deep, loving, intense, compassionate, sincere, selfless.

With each day, and every new challenge we face, I am continually inspired by the amazing young lady Abby is.  I am so very proud to be her mom!!!

Tuesday, January 25, 2011

Awesome Abby Turns 13!!

Abby 2011
When exactly did this happen? When did you suddenly go from my little challenge of a child.......

Abby 1998

Mom & girls, 1998

with your scrunched up nose, a body always on the move, and an attitude as big as could be.....

Wish 100 2010

WISH 100 2009


To this amazing young woman who surprises me daily?

No longer my little, thrill seeking, messy Tom Boy.....

A fashionista has emerged!!
Abby 2008
Abby 2008

Present you with a challenge though, and your all over it.....

The Marksman, 2009

Urban Assault Ride 2009
Awesome Aim 2009


Some things clearly never change ☺

Wish Trip 2004

Our animal lover…..

Sophia 2010

CoCo 2008

Bestest little sister….

Sisterly love 1999
Sisters 2008

And a Loyal friend.
Kara, Seattle 2010
Sarah 2010
Tatum 2011

Even at this tender young age, you have loved and lost….

Princess Alexa
Girls, Alexa & Tatum

And continue to honor Angel Alexa.

Lemonade Stand 2009
Wearing Pink for Princess Alexa

 While you may come from one crazy family….


And can be a serious “Daddy’s Girl”….


You will ALWAYS be your Mom’s Abby-Gabby-Goobie-Girl!!

You are, my sweet, so very AWESOMESAUCE!!!!! 

Just keep being YOU!!  We love you and hope you have the best birthday ever!!!!

Monday, January 24, 2011

Birthday Traditions

At some point, a long while back, we started a birthday tradition that I look forward to as each child’s birthday approaches….A LOT!!  And while I am not totally positive the kids still get the same kick out of it, they humor their mother pretty convincingly, which makes me think maybe they don’t hate it too much.

As the big day approaches, we start talking about what was happening at that point, how ever many years ago it was that they were about to be born.  How huge their mother was, how active (or inactive, as the case may be) they were in the womb, what was going on in the family, etc and so on.  Then the last 48 hours before they were born are talked about in great detail….who was here, what we were doing at that time, how we were feeling, and when we KNEW the time was near.  We do this up to their time of birth….and I don’t know about them, but their mom truly LOVES reliving these moments with them!!!

So with this in mind, I thought I’d share Abby’s birth story with you all as we approach her BIG day tomorrow.

I was HUGE!!  Truth be told, I had been huge for some time actually.  Having babies just shy of 14 months apart means there is no time for reconditioning of the abdominal muscles in between, even involuntarily!!  So by the time I was about 4 months along, I was already very clearly pregnant, so just imagine how big I was by the big day!!  It was comical really.  I was VERY ready for this new bundle of joy to make an appearance, considering I was at this point, 2 weeks past my due date.  And yet, I clearly remember being grateful for that extra time.  I knew there was a good chance this was my last baby, and being blessed with wonderful pregnancies, the idea of not feeling them move inside me again was difficult to imagine.  Just another reason I am grateful I had a midwife and that she was willing to let me go into labor on my own time.

Michael was working at BWC, a ton of hours as was usual, but it was a Saturday and he was home enjoying the day with his growing family.  We were both vaguely aware that the Super Bowl was coming on the following day, and were looking forward to having dinner with my mom, sister, and Cousin Deb who was in from Boston visiting (and waiting patiently to see this new bundle of joy!!) that evening.  Breakfast with the same crew, as well as my grandmother & grandfather, was on the agenda for the following morning.  It was looking like it would be a good weekend (family AND food-wise).

Madison was 3 days from being 14 months old and still such a baby herself.  She was so little, still wearing 6-9 month clothes, and wasn’t walking or talking, but her sweet personality was very much there.  Chance was a big 4 ½ year old, with a toothless grin, and could not be more excited about the new baby on the way.  After all, he got an awesome Buzz Lightyear action figure “from Madi” when she was born, surely there would be some good stuff from the new baby too!!  He was hoping for a boy….with good toy taste<grin>.

I’d been having Braxton-Hicks contractions for a while at this point, pretty typical for my pregnancies, but my check up this week had not revealed much indication that the baby was coming anytime soon.  Of course, my body never was good about giving us a clue ahead of time, so we knew anything could happen.  My mom, Jess and Deb were nice enough to come our way for dinner and we thoroughly enjoyed a night out eating at a little hole-in-the-wall Italian restaurant we love near our house.  Cousin Deb made her pleas to my baby belly to come out already….she was due to head back home in a couple of days and really, really wanted to see this baby!!

Her pleas were apparently heard because it wasn’t long after we got home that I began thinking that my contractions were a little different than they had been.  I wasn’t sure, but had an inkling that something was happening.  I got the little ones to bed and hit the hay for a good nights sleep.  By early morning it was CLEAR something was happening.

One of the awesome things about having a baby with a Midwife at a Birth Center is that you don’t have the restrictions on eating and such that you would otherwise.  It’s a good thing considering how the day went from there!!

I filled Michael in as we got ready to go meet everyone for breakfast.  My contractions were 10 minutes apart consistently, and getting stronger, but I knew I was still a long way from being ready to have this baby.  HOW I knew is anyone’s guess, but I suppose on your third you have as good an idea as ever.  Mostly though, since my body didn’t do much before labor, I knew that I usually went about 24 hours before anyone was going to make an appearance.  Besides, I was HUNGRY and wasn’t about to miss this breakfast with the family!!  I made him swear to not say a word about the contractions to anyone till I was ready. 

I could envision the scene if we handled this any differently.  We’d walk in the restaurant and announce the big news, to watch everyone stand up and start pushing us towards the door to go have this baby!!  I was NOT missing breakfast, so there could be no clues given.  Of course, in the end, it was my need to stop talking during a contraction that announced it for us…LOL.

It really was perfect timing….I had just finished eating and was talking to my mom when another contraction hit.  I had been pretty clever about making sure I wasn’t talking during any that had preceded this one, but it was bound to eventually happen.  She knew immediately what was going on, and as predicted, as soon as it was announced every single one of them stood up and started pushing us out the door!!!  LOL  My precious sister, who had missed Madison’s birth by 5 minutes, attached herself to me and was not going to let go.  She was NOT missing this one!!!  I assured her we had time though, and as pretty as she was dressed, it was NOT appropriate clothing for watching/helping a baby be born!!  She needed to head to the condo and get something comfy on, we would get the kiddo’s deposited at his Mom’s, and we’d meet her back at the house in just a little while.

I had called my Midwife before we headed to breakfast, just to give her the heads up, and she asked that I call as things progressed.  Problem was, several hours later, and I was still having contractions 10 minutes apart.  They were getting stronger, just not closer together as we expected.  We ordered pizza, played games, and my sister and I walked around the block, over and over and over again.  My contractions would get a little closer together while walking, but as soon as I would sit down again, back to 10 minutes apart.  UGH!!

By about 3pm, the Midwife was starting to wonder if I was really in labor!!  With that, we made a quick run to the birth center to be checked. There wasn’t any doubt in my mind, and sure enough, I was at a 5 and things were going well.  With that, we were off to Braum’s for Banana Splits…LOL.  Back home, more walking, packing final items in the birth bag, and then, because there wasn’t much else to do, we started watching the Super Bowl pre-game programming.  And still, the contractions were 10 minutes apart.

At about 6:30 my midwife called.  I was making her nervous and would I please come on in to the birth center so she could watch me.  No problem….we loaded up and were on our way.  We were having a baby!!!!

Oh, I should mention, we didn’t know whether we were having a boy or a girl, but ONLY had a girl name.  Why a boy name eluded us at that point I cannot remember, but we just could not come up with one that worked for us.  The girls name was solid though, so we would just have to wait and see!!

Once we arrived at the birth center….an amazing Victorian home near downtown Dallas….my water broke when my midwife checked to see what progress I had made.  I was at a 7 and doing well, so we decided a walk around the park right next to the house was in order……besides, while walking had not gotten things moving consistently, it had helped, I was sure of it.  That one walk around the block took FOREVER!!!  I was having to stop every 5 feet to get through some strong contractions, and was very glad to finally make the circuit and get back inside the house. 

By this time my mom and Cousin Deb had made it to the birth center and my labor was getting more intense.  Contractions were just a couple of minutes apart and I had started the “moose call” I became famous for during Madison’s birth….LOL.  The kids get a kick out of hearing it, Michael says I replicate it pretty well, but truth be told, I am pretty sure there is no way I can do it in quite the same way without labor pains!!  LOL

In no time at all, I was at transition.  I had warned my midwife that this would be the point when I would be sure I couldn’t get through it, and that I needed her to remind me that as soon as I was through this stage, I could start pushing.  As predicted, this was my breaking point, and for a few contractions I was sure I wasn’t going to be able to do this.  I was done and there was no way I could have this baby!!  With the support of Michael, my mom, sister and the midwife, I made it through and it was time to push!!!!

While I had been walking around the spacious room the whole time I was there, I assumed, as I am sure we all did, that I would get up into the bed to have the baby.  For reasons that I cannot articulate, that just didn’t feel right when the time came though.  With that, the midwife and assistant offered to help me squat while pushing, and while we tried, that wasn’t working either.  As we contemplated options, the midwife offered that I could just have her standing up if I wanted to!!  Seriously??  Yes….and it was actually her favorite type of birth….well okay!!

As I began pushing my sweet sister was fulfilling a wish I had to have pictures this time.  They would be black and white, and while I was sure they would never be shared with anyone, it was important to me to see this baby's birth.  As the baby crowned though, Jessica became so emotional she simply could not continue taking pictures.  She was so incredibly moved by what she was witnessing, she could do nothing but watch and sob.  At this point, the assistant took over camera duties and I was blessed with photos that I cherish to this day.

Meanwhile, I was experiencing something more profound than words can express.

Three pushes later, at 9:05pm, they were catching our baby girl as she was born!!!  Phew….we HAD a girls name<grin>.  She was perfect and healthy, weighing 8 pounds even, with big blue eyes, and a swatch of red hair on her little round head.  As soon as I could get on the bed, she was laying across me and almost immediately latched on.  It was incredible, and amazing, and breathtaking.

Her daddy would be the honored one to bathe her for the first time as I watched that bond begin growing. 

A few hours later, after getting cleaned up and eating (again), we were ready to head home to sleep in our own bed.  Another one of those amazing parts of having a baby in a birth center……we were in our own home, sleeping in our own bed (well, mostly staring at this beautiful little bundle laying next to us) by 3am…..and could not have been happier or more content.

And this is where the story of our youngest begins……

Be sure and check back tomorrow for a celebratory photo montage of our beautiful girl.

Happy almost birthday Miss Abigail!!!!

Saturday, January 22, 2011

{We Can Make a Difference Weekends: Give Kids the World & The Power of 10}

Alliteration post number two!!  Because, as I have already shared, I apparently get a thrill from the repetition of the same sounds in my titles!!!  And again, LOVE ME!! LOL

How far this will go isn’t really clear, but for now it gives me some goals to work towards…..oh, and I have decided, since medical stuff is always going to be there, we will embrace it and have “Medical Monday’s” where I can share what’s going on medically over here.  I am sure medical will be thrown in at other times too, but like the idea of only needing to commit to it one day a week and leaving the others for (hopefully) more interesting posts.

The weekends though seem to be a really good time to share ways we can all make a difference for our community and friends, and at least in these early days, it will be the charities that mean so very much to our little family……the charities I can stand behind knowing they are making a difference.

I forget sometimes how much one person can do to make a difference (even if they are poor like me!!).  While some will be donation related, most if not ALL of the ones I will share are organizations that need people’s time, energy, connections, and skills…sometimes just as much as their money.  Many (if not all) have ways to get the kids involved too!!  It’s a “win-win” and I promise it will make you feel amazing to have had the chance to give back, or pay it forward, or just be involved.

I am inspired to do my little part here by another mom who has done something incredible (although that word is really not strong enough) to bring her blog community together to make a difference….in a bigger way than she could have imagined.

I started reading Kelle Hampton’s blog Enjoying the Small Things a little more than a month ago. I am consistently moved by her writing style, amazing photos, and her story, as much or more, than any other blog I have ever read.  Her life changed a year ago when her little one, Nella, was born with Down Syndrome.  She has chronicled the year since as she has grieved, come to terms with, and ultimately embraced this life she’s been given.  To celebrate her little one’s first birthday, she set up a fundraiser to support the National Down Syndrome Society and called it the ONEder Fund for Nella’s Rockstars.

On January 7th she shared that she was setting a “scary” goal to raise $15,000…..

as of today, January 22nd,
Nella’s first birthday,
her Rockstars have donated….
sit down for this…..

$92, 306.00

Ninety two THOUSAND dollars people!!!  ONE person…..ONE absolutely adorable little girl…..ONE blog did this….with the help of lots of amazing people who wanted to make a difference.  It’s incredible and I am speechless.  And more importantly, I am MOVED… I am sure you all are too.

So, without further ado, our “We Can Make a Difference” charity for this weekend….

As I shared in our Pay It Forward With Us page, Give Kids The World is special to our family.

I was excited to stumble across this information at ZannaLand|Finding Pixie Dust in the Everyday and wanted to share it with you all.  If you feel so compelled to donate, it would mean a lot to us.

Friday, January 21, 2011

{“50 in 50” Fridays}

**Please, if you will, be sure and check out my bloggy etiquette question at the bottom of this post**

Ah, alliteration.

I have realized in reading other blog’s that there are a plethora of “weekly prompts” to get one writing & sharing.  While the titles are a bit on the cheesy side (unless you have a thing for alliteration that is, which apparently I do), I find I like the idea of having a prompt to get me writing more.  More importantly, they are prompts that will get me writing (at least theoretically), about things other than the medical crud happening here.  I KNOW there are other sides to our lives, but do find it hard sometimes to get into that gear, and am hopeful these prompts will be just the ticket.  It won’t be every week, but it will give me something to aim for.  Others have already named Tuesday (Top Ten Tuesdays), Wednesday (Wordless Wednesday), and Thursday (Things I love Thursdays), so no need to recreate those wheels, but I have not seen one for Monday or Friday. 

At the same time I was contemplating how best to keep you all updated on how our “50 in 50” list is going, and wa-la, “50 in 50” Fridays was born.  And it’s Friday, so what do you think about that!!! I know, I know….more information than anyone needed, and perhaps a less than stellar glimpse into how my brain works. LOVE ME!!

First, I want to share that I am updating the “50 in 50” list as things happen, so if your curious in between these Friday updates, click on it and take a look at how things are going.  If nothing else, this forces me to look at the list weekly and see what we need to be doing next, and more importantly, the PROGRESS we are making!!  It is, I have to say, a pretty invigorating action already.

Second, I talked to my dearest husband about his slots on the list, and while I half expected an eye roll and a no thank you, I was THRILLED to instead see a bit of a sparkle in his eye and get a hmmmm.  So hopefully he’ll get me a list soon, otherwise I am afraid the kids and I might just eat up those other spots!!  That or I may need to make some adjustments to the list and combine some things that are similar in purpose, which is definitely doable.  In fact, Chance and I are both adding new items today……he wants to add trying new ethnic foods, and I am going to add providing myself “mental health” breaks, which at the moment, is working on this blog.  It’s a less than veiled attempt to make it so I don’t have to feel guilty for spending a little bit of time each day working on it.  And I really do want (read: need) that little bit of time each day.

Finally, the progress report:

Item #3    Help Chance in any way possible to fulfill his dream of having a band & playing a gig.
Making some progress here, and reminding Chance that even baby steps are significant!! He’s been able to go to a friends and jam twice now, and had a ball!!  Now if we can just find someplace for all of them to get together and practice, we’ll be making some real headway.  Any ideas, we are all ears!!

Item #9    Find out if it’s possible for Chance to work an additional week at Camp Korey as a LIT (assistant counselor) this summer in Seattle.

This item prompted me to make a call I really needed to make anyway.  While I was pretty sure it was a given that he’d be able to go back to camp this year as an LIT, I realized that I was not really so sure about that!!  So a call went out to the director of Camp Korey, and the conversation that ensued was both educational and delightful.  I learned that while he’ll go through the application process like he did last year, his previous performance was incredible and there seemed to be no hesitation in her voice about him being accepted again.  I also learned that as long as he is an LIT, he’s restricted to only working Mito week, which is fine and something I was already pretty sure was going to be the case, and actually makes a lot of sense.  Additionally, we were able to discuss Chance’s long term plan of being on staff for the summer there at Camp Korey sometime in the future…..really, this qualifies as a BIG dream for him AND those of us that love him.  She was able to walk me through the accomplishments that they look at in determining those positions and while I am sure she and I will talk about it again in even more detail in the future, she was able to give me a good starting point.  More importantly though, it will give Chance a game plan AND it’s all things he wants to do anyway (in a volunteer capacity).  Finally, I was able to share with Hillary just how much Camp Korey and Mito Week has meant to my children, and really to ALL of us that love the kids.  It’s a post all unto itself and will be posted at some point in the very near future….just be prepared to tear up a little (or a lot).

Item #18    Find ways to help Madison make something of her photography. Lessons maybe? Or just a mentor?

Thanks to a dear, dear friend, we have been connected with our “#18”!!!!  An amazing photographer here locally has offered to take Madison under her wing and share photography with her.  We could NOT be any more excited!!  I promise to share the photographer’s blog with everyone here as soon as I have her permission.  Such an answer to prayer!!! 

There are a few other items that we have made some small progress on also, but these were the ones I wanted to share today!!  Day by day, one step in front of the other, one moment at a time…’s working!!!

**Now onto my bloggy etiquette question……

I am sometimes profoundly moved by something another blogger has posted and would love to be able to share some of the sentiments here, but am not sure what proper protocol is in that case?  Is it okay to just do as long as credit & a link to the blog is given?  Or do you contact the author and ask permission before proceeding?  Just leave me a comment regarding this, and thanks in advance for the help!!

Thursday, January 20, 2011

The Great Life Re-design 2011 Part II

Balance = a state of equilibrium = a stable situation in which forces cancel one another

Ah, to have BALANCE!!! 

I have lost it somewhere along the way.  I’ve lost the ability to keep our lives from amounting to nothing but medical, nothing but Mito.  We’ve always subscribed to the idea that while the kids have Mito, they are not defined by Mito….and for a long time, I think we managed to pull that concept off.  Mito clearly does not like that….Mito is a Drama Queen & likes to be the center of attention.  Yes, I am assigning personality to this stupid disease….LOL.  Mito has made sure the last two years that, just as soon as my mind wanders elsewhere, it throws a new curve ball our way that has to be dealt with.  Yes, Mito is definitely a drama queen.

And I hate, hate, hate it.  We all hate, hate, hate it.

Without balance in our lives, it’s virtually impossible to subscribe to our other idea, to take one day at a time and make it the best day it can be.  I just cannot manage to do this when our roller coaster (of life) designer has made changes that now amount to nothing but ups, down’s & loop-d-loops.  I need some flats to catch my breath and refocus on the hill to come.  And apparently, I have to MAKE those flats, somehow, someway.

All I can come up with is to find balance, again.  Find a way to live in the moment again. Find a way to not miss the good things because of the not-so-good/bad things, again.  I have to find some way to stay on top of the things I have to plan for, while making distinct plans for the things we want to do, knowing at any moment it will all need to change.  Easy peasy, as Abby says to herself when faced with a hill to climb on her bike.  Easy peasy.

For what it’s worth, this is not a new revelation.  It is though now a necessity that I find the answer and make the changes needed to live fully again… put the drama queen that is mito back in it’s box.

It is, without a doubt, time for a life re-design.

It is time to re-focus on the priorities that we WANT to be priorities, and while still maintaining the other needs, make it all somehow work together again.  I have to believe it’s doable, somehow. 

And this, my friends, is where I am required to relearn that old adage, Let Go & Let God.  Clearly I still have a lot to do myself, but mostly I need to find my way to letting the Lord carry me here for a bit.  It has always been overwhelmingly amazing when I have managed to do this in the past, but somehow I slip back into the old habits of trying to do it all myself and, well, we all know how that goes.  If nothing else, I need prayers for my ability to really, really, let go this time.

Wednesday, January 19, 2011

The Great Life Re-design 2011 Part I

Hello my friends!!!  Now to back up to the beginning of this post series.......

As I sit here taking a very deep breath, I am aware that I am requiring the additional air in my lungs because I am about to really, really, commit to this thing.  Not only do we NEED to do a life make over, I WANT to do one…..but I am painfully aware of the energy (mental & physical) that will be needed to really make this happen.  It is so much more than a resolution, it’s a necessity that we take our lives back from this beast we call Mito.  So here I am, about to reveal this new direction we are headed in at the McNair household.

An explanation is needed….as a reminder to me why I am doing this (that will no doubt be needed on days when it’s just hard), and to share the thought process with you all, because I know your all just dying to know<grin>.

Our lives have, since way back when Michael & I got married, been a series of twists & turns that have required us to make the adjustments needed to maintain sanity, happiness & some level of peace in our lives.  Lets face it, we ALL have this scenario in our lives. Regardless of what the twists & turns are, we all have to face accepting a “new normal”…. on a pretty regular basis.

Generally speaking, it’s not easy to accept “new normals”.  I have seen some amazing mom’s who seem to do it effortlessly, but in reality, I know better.  I know that, like me, they have to work damn hard to get to that place of peace as they come to terms with some new change in their children.  I also see mom’s who fight it….tooth & nail…..and know that I have been there too.  Being ripped from your comfort zone is just not something anyone relishes….well most don’t anyway.

Up until 2 years ago, I had done a decent job accepting our normal, even as that normal would change.  It wasn’t always instantaneous, and it was never without some effort & soul searching, but I had managed to do it reasonably well.  Accepting where we were, in that moment, allowed there to be some peace in our lives, even when I am sure others could only see it as the chaotic existence it really was. 

Chaos does not exclude peace, I found, but peace in the midst of chaos does not come without effort. 

I suspect other factors play a part in this acceptance, whether it be a time of denial, compartmentalizing it all (and then not allowing yourself to “feel” what’s in that overwhelming compartment), and/or, simply put, playing stupid in the moment. 

I’ll be honest, I have perfected the “playing stupid” part, at least as of late.  If I don’t really KNOW how bad it is, then I can pretend it’s not a big deal. Right??  The mom who used to obsessively research so I could understand, in minute detail, exactly what was happening in my children’s bodies because it felt like it gave me some control….has become the mom who hears a new diagnosis, gets as little information as possible, and then rests in a place of mostly ignorance.  Happily.  At least for a time.  The shift has been pretty remarkable, even to me.

However, having said all that, 2 years ago this unsteady house of cards I have been building began to shake, and one by one the cards have been falling down.  Cards = priorities & priorities = just about anything and everything we need, should & want to do, in case my analogy sucked.  One by one, the cards/priorities have been falling to the wayside, no matter how hard I tried to keep it all together. 

The trigger was no doubt because of all that’s transpired medically with Miss Madison.  Not that the other’s have “missed out on the fun”, but Madi has been mixing things up far too regularly the last two years.  While I have had moments where I felt sure I had accepted the “new normal”, the reality is that normal just keeps changing, faster than I can keep up with accepting it.  NOT a good thing.  For me, or the family.

It’s kind of like thinking something big is about to change and sort of freezing life while you wait to see what’s going to actually happen.  Each time I would make a new plan, the circumstances would change yet again,  and I would be back at square one.  Enough to make a person crazy!!!

Enough to remove all sense of balance… balance.

Monday, January 17, 2011

The Great Life Re-design 2011 Part III: "50 in 50"

I know, I know…..there is no part I & II yet…well, they are essentially written but still need some tweaks.  However, if I wait any longer, it will have to be "49 in 49" (which is just so much less catchy, right!!??), so decided to go ahead and post this part first and will follow up with the other two in the coming days.  This will make some sense on it’s own, but will REALLY make sense once I have a chance to post the further explanation, I promise!!

**Note: there is an update on the last couple of weeks at the bottom of this post**

And now, onto the blueprints for this re-design!!!

I sat down with the kids the other day (and still need to do so with my hubby) and we made a list of the things we want to do this year!!  This way we can then take them one by one and make PLANS for how to make them happen.  It will NOT all come off without a hitch, I get that....but at least we have the plan and can get back on it as things happen that make us get off schedule. 

I think we will call it “50 in 50”…..50 things we want to do this year in the 50 weeks we have left.  I like it!!!  So here they are:

“50 in 50”
(in no particular order)
1.    Accept (and even embrace) the fact that we have to be in Houston for medical care at least every other month this year.
2.    Finalize which accredited High School curriculum Chance will be using and get started on it.
3.    Help Chance in any way possible to fulfill his dream of having a band & playing a gig.
4.    Help Chance to find ways to “work”, even if only on a volunteer basis.
5.    Find the means & route for Chance to be able to visit friends in Houston at times when we are not there. (in other words, go alone)
6.    Finalize plans for transportation in general for Chance.
7.    Make our home the one we all want it to be….purge it all, pretty it up, & party like it’s 1984.
8.    Find a way for Chance to take guitar lessons monthly at least.
9.    Find out if it’s possible for Chance to work an additional week at Camp Korey as a LIT (assistant counselor) this summer in Seattle.
10.    Work diligently on our schedule to find balance.
11.    Determine a way that Abby can do more art work, perhaps take some lessons, and then find something meaningful to do with the finished pieces.
12.    Find the time to do things with friends, and most importantly, get it on the calendar.
13.    Find a church to attend, ideally one that has a strong teen program, and even more ideal, one that incorporates a lot of contemporary music that might afford Chance the opportunity to play. Work on our relationship with God and remind myself regularly to “Let Go & Let God”.
14.    Fund raise and build Team Pink in honor of Alexa for the 2011 Walk for Wishes. Fundraise for St. Baldricks in March.
15.    Re-assess and re-adjust time spent on the computer, phone & watching TV to be sure there is a healthy balance.
16.    Find a way for Madison to travel to Houston to spend time with my Aunt & Uncle this summer.
17.    Find a way for Abby to travel to Wichita Falls and spend time with our Mammaw this summer.
18.    Find ways to help Madison make something of her photography. Lessons maybe? Or just a mentor?
19.    Start a plan of walking daily for exercise & health.
20.    Refine everyone’s diet including protein intake with Madison, as well as hydration for all three.
21.    Put together a plan to “bless” people we know need a pick me up, with a tin of cookies the kids & I make through out the year.
22.    Plan awesome birthday parties for all three this year (BIG year with Abby turning 13, Chance 18, and Madison 15)
23.    Finally do our Will.
24.    Finish the process to get the kids back on MedicAlert
25.    Finish the “How To” book for the kids care and distribute one to my mom & the other for home.
26.    Plan a “Get-A-Way” a quarter for the family. Already on the schedule, Camp John Marc in March & Seattle/Camp Korey in August. Just need to find something for June & November now.
27.    Find our “center”, AKA Balance again.
28.    Plan monthly lunches with my Great Aunt & Great Uncle who both lost their spouses this last year.
29.    Attempt to get as many appointments scheduled, for as far out as possible, so we at least know when & where we need to be as far out as possible.
30.    Make the appointments that ~I~ need to make for me and get back on schedule with that.
31.    Re-examine our diets and find new meals to make that we can all enjoy & benefit from.
32.    Find ways to raise the funds needed for our adventures in Seattle.
33.    Keep mornings open, as much as possible, for school time.
34.    Make a daily & weekly schedule….and stick to it.
35.    Get our finances more in order (Dave Ramsey or the like).
36.    Work on transitioning Chance as he nears 18 in July.
37.    Stay on top of the vast amount of paperwork that comes into the house weekly.
38.    Be more organized/keep better notes regarding the kids medical care, in as concise a way as possible.
39.    Volunteer at Cooks & Make A Wish as much as possible.
40.    Help the kids reach their volunteer goals.

{{Follow our progress at the "50 in 50" link at the top}}

At this point, since I have neglected my husband, I will leave the last ten for him to fill in.

Clearly, some of these will be a year long effort, while others really can be ticked off in a weeks time.  I will use this blog as a reference and share the progress we are making on at least a weekly basis. 

While this is a list of things we can do to feel like we are making progress back towards the balance we all crave, it will take so much more I know.  It will be mental and emotional, as much as all the things I can make a list of (oh how I love lists…LOL).  The list will just keep me accountable to me.  And to you guys too…’s okay to remind me of what I am not getting done, I give you ALL permission.  And if you have some ideas for me, ways to make things happen, or even just a thought and a prayer, they are appreciated and welcomed.

We will find it….that balance….again.  It will not come easy, and putting Mito back in it’s box will be a challenge.  The rewards though, Oh My!!!!!

Thanks for taking the ride with us!!!

An update on the kids before I leave you all for today…..

Our appointment with the pediatrician two weeks ago for Madison to follow up on her ER visit on 12/30 was a little more than I had expected.  While she was definitely better and getting over the “plague” (as I have taken to calling this nasty cold we had all had), when she was examined it was discovered that she had a double ear infection.  So even though we were only 7 days off the Laveaquin she’d taken for the Mycoplasma Infection she has, and was completely asymptomatic (which is usual for her), the ear infection broke through (UGH).  10 more days of antibiotics were prescribed, as well as 7 days of ear drop antibiotics, and a return visit to check and see how her ears look in a couple of weeks.

Chance saw the nurse while we were there for a weight check….up 2 pounds, YEA!! And a vaccine.  So all went well there.

Before we made it out the door though we talked about Abby’s recurring head colds since October, and the suggestion that she might have a sinus infection that was making her susceptible from one of our other doctors.  The decision was made to get a CT of her sinuses and see what we were dealing with.  Thankfully we were able to go right over and get it done, and a day later I received the news that she does indeed have a chronic sinus infection!!  In her case, 21 days of antibiotics were prescribed to try and really knock this thing out.  Sincerely hoping this will be the end of the head colds for her for a while!!!

I won’t bore you with the adventure getting the antibiotics was, or how many pharmacies I had to go to, just suffice to say, we left the house at 11:30 and I didn’t get back through the front door till almost 6!!!!

Abby had a dental appointment last week to put sealants on three of her back molars…..and did awesome!!!  She is my nervous kiddo, so it was pretty amazing to see her so relaxed!!  All thanks to our amazing, wonderful dentist no doubt!!!

Chance & Madison started Aquatic therapy last week and really did well and enjoyed it!!  Any chance to get in the water these guys like, and when it’s at an indoor pool that’s nice and warm even while there are a couple of inches of snow just outside the windows, well, it’s even better!!  Looking forward to utilizing this form of therapy a lot and really, really like the therapist!!

Finally, Chance and Madison had an appointment this last week at the wheel chair clinic.  After almost 2 years of debating how best to go about getting them both a chair for times when they are needed, that can meet their needs, isn’t to heavy for me to lift, will fit in my van, and can both be used even if I am the only one around to push, we finally made a decision and the orders are officially going in.  They are both getting Ti-Lite chairs (very similar to the one Madison has had for a while), but with power assist wheels so when there is only one pusher around, the kids can actually get themselves around easier.  Phew…’s done and I think we will be happy with the decisions when all is said and done….at least I hope we are!!  Hate making such big decisions!!

In other adventures since my last post:

We had a wonderful time at my sister’s for New Years Day!! Time with family is always such a blessing, and there really was no better way to start the year off right!!

Abby went to her final night of Night Owls, our monthly respite program that we have been a part of for TEN years!!!  I’ll admit, I teared up several times.  These people have been through it ALL with us!!! 

We spent last Saturday doing a shopping spree with the girls as a Christmas gift from my mom & sister.  Not only did we do really well and got a lot for our money, Jess and I had fun showing the girls our old stomping grounds at the Galleria.  It was a serious blast from the past!!!

Chance has gotten to go over and play music, twice now, with a friend and is really enjoying it!!  He has some mighty big plans for his band…the one still being formed…..the one that I pray daily is what he is hoping it will be.  The boy has some big dreams!!

Finally, this weekend has been, well, NICE!!  With the girls on antibiotics we have avoided any illness here for a week or so….a nice lull in the action that I am hoping continues even after the antibiotics end….so that makes us all feel better!!  We were able to be at the art party at Make A Wish on Saturday, where we were blessed to see so many of our most precious friends!!  Always does a heart good!!!  And otherwise we have just been spending time together running around doing whatever strikes us next.  It’s been a GOOD weekend, and for that I am very grateful!!

BIG hugs,
The M’s

Saturday, January 1, 2011

New Year, New Blog

We wish all our friends and family peace, love and health for the New Year!!!  We have been, and continue to be, so very blessed to have you ALL in our lives.  There is not a day that goes by that I don’t have a moment when I feel the warmth that comes when you know there are people out there lifting you in prayer and keeping you close to their hearts.  There are no words that adequately express the depth of my gratitude to you all.  We love you and are so glad you have joined us here.

Please forgive the lackluster appearance of the blog at this time.  It will, as a whole, be a work in progress, but will eventually get to where I want it to be.  For now though, I want to get started on the real reason for being here and start posting. 

What’s in a name? 

I won’t even reveal how long I have been thinking about a name for this blog.  It wasn’t on my mind constantly, but was one of those things that would slip in to my thoughts when I was looking for anything to think about other than whatever was dominating my thoughts at the time.  Most were forgotten as soon as they came to me, sometimes to my frustration!!  Other times it just wasn’t the right one.  It was too cliché, too similar to someone else’s blog name, too random…you get the idea.  For reasons I am not even sure I can explain, it was important to me.  If I was going to embark on this new adventure, it needed to have a name that meant something to me.

When I got my IPhone in June (and finally figured out all the goodies I have on it) I realized that instead of trying to remember the different blog names that “came” to me, I could add it to a note in my phone and have it to go back to and contemplate.  There are probably a dozen or so names on that note, and I would occasionally go and read through them all just to see if something worked for me.  In the end, it was none of those names that I chose.

One day not very long ago, “Our Exceptional Life” came to me and for the first time since I started thinking about this, I felt a flutter when I said it out loud.  It FELT right!! But there were still hurdles to overcome.  Would it be available?  And really, what does the word “exceptional” literally mean?  While I knew the meaning in a general way……i.e, I can use it appropriately in a sentence….before branding the family blog with it I figured I ought to find out the dictionary meaning of it.

As you can see at the top of the page, it is defined as 1. Unusual; not typical. 2. Unusually good; outstanding.

Oh my, is that us!!!  Pretty sure anyone that knows us would agree that we are, as a whole, pretty unusual and definitely not typical…..and the kids are, without question, unusually good and outstanding.  As I read the definition, the flutter in my stomach intensified a little more.  Finally, maybe I had found the right name.  As I signed onto blogger and plugged the name in I held my breath.  With all the blogs out there, what were the odds the name I wanted would be available?

And here we are!!  The name feels right….it’s comfortable, means something to me, and is, dare I say, even a little inspiring to me!!  Considering I am still trying to figure out my purpose here, the idea of sharing the exceptional life we lead really does do something for me.

So, welcome……welcome to our exceptional life!!
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