Rare Disease Day USA 2011

Alone we are Rare. Together we are Strong.

rarediseaseday.us

http://rarediseases.org

What is a Rare Disease?

In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease.

Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult. For 2011, our focus is on disparities in access to services and treatment.

Mitochondrial Disease is considered a rare disease.

Visit the website, find ways you can help, make a difference.

All five of the faces you see at the top of this blog depend on organizations like this to further the progress in research, treatment, and cures for the rare diseases we deal with daily.

Keep the prayers going…. 

Just click on a link in my Mito Friends blog list and you’ll know the specifics of the prayers needed. 

{FoodieFriday: Schweddy Balls}

Clearly I am not a food photographer

Go ahead....Google it...watch the video and laugh your butt off.  I giggle just writing it!!!  I giggled when I decided last night it’s what we will be calling my latest cooking creation.

Let me say up front….cooking is NOT my thing.  I occasionally create something I like and am proud of, but it’s not often.  Just ask the kids.  Like how some mom’s feel about laundry or cleaning the bathroom (which I don’t really mind), I mostly feel about cooking….and food shopping (I order from a menu really well though!!)…it’s tedious and after a few weeks of “being good” and cooking things at home, I am burnt out and begging for there to be some kind of food fairy to feed my family.  The local restaurants generally become those food fairies for me, much to my pocket books chagrin.

Now that we have that clear…..LOL.

On rare occasions I get it right……more often, other people get it right.  Either way, sometimes it’s worth sharing, so watch for occasional “food” posts from me.  Now, back to our Schweddy Balls<snicker>.

A long, long, long time ago I found a meatloaf recipe that has become one of a very few favorites around these parts.  One of our “comfort foods” (and after the month we have had, comfort was needed last night). On my side of the equation, it’s easy, takes few ingredients, and doesn’t take much time, but looks and tastes like it did.  On the family's side, all but Abby LOVE it.  As in, my children, since they were little, ASK for it.  Meatloaf being requested is not normal!! 

(As a side note, Abby doesn’t really eat red meat….and does not “do” sauce….and thinks the idea of sweet & meat in the same sentence is disgusting, thus her lack of interest in this particular dish)

Let me start with, this will work in a traditional way too….as in forming the meat into a loaf pan and making it look like “meatloaf”, however, it takes a little longer to cook this way (1 hour, 10 minutes or so) and well, last night I was in a hurry and I thought maybe shaped into meat balls would cook more quickly, which it did, which made me happy.

Schweddy Balls

Prep Time: 10-15 minutes

Cook Time: 40-45 minutes

Feeds: 3-4

Ingredients:

1 pound of lean Ground Beef

1 package Onion Soup Mix

¼  Red Onion, chopped

1/3 cup Milk

1 Egg

6 tbsp Brown Sugar

6 tbsp Catsup

3 tbsp mustard

Heat oven to 375 degrees. Mix meat, onion soup mix, onion, milk and egg together. (Note: if it’s not sticking together well, you can add some bread crumbs to firm things up).  Shape into good sized meatballs (should make about 9) and place in a shallow cooking dish.

Mix the remaining ingredients together and spoon over the meatballs.

Bake, uncovered, for 40-45 minutes (until meat is cooked through).

Mmmmmmm….so good!!!

(Note: If your doing this in the old fashioned way, once you have formed the meat in the loaf pan, I have found that if I make indentions about half way down the pan side in the meat, as well as a dip down the middle of the loaf, the sauce gets to more of the meat. I have also found that doing it in the loaf pan, there is more fat that needs to be drained off before you remove the meat from the pan.  Mostly the sauce stays put while I drain it off and if nothing else, it “looks” prettier this way.  Finally, done this way, I like to put a bit of catsup on the slices once they are on the plate, just for a tad more moisture/flavor….did NOT have to do this with the meat balls though!!)

We like to have mashed potatoes and steamed broccoli with ours.  By the way, if you have not tried the Ziploc Zip ‘n Steam Bags, your missing out….these things are awesome!!! 

Now if only they'd pay me for the plug

Steamed Broccoli (using Ziploc Zip ‘n Steam Bags)

Prep Time: 5 minutes

Cook Time: 6 minutes (microwave)

Feeds: 4-5

Need:

1 Large Ziploc Zip ‘n Steam Bag

1 bunch broccoli

3 tbsp Margarine

3-4 shakes of Lawry’s Season Salt

Clean and cut the broccoli heads off and place into steamer bag.  Add margarine and season salt. Microwave for 6 minutes.  DELICIOUS!!  Better yet, EASY!!

ENJOY!!! We sure did  J

Comfort achieved. 

Sleepy Head

I started composing this post in my head Monday night with the information I had at the time, however new information came in yesterday that changes things some. Or a lot. Just not sure.

I received a call from our pulmonologist/sleep doctor Monday morning with results of Madison and Abby’s sleep studies, as well as their daytime studies (MSLT’s). 

While Abby had a lot of awakenings during hers, it was suspected (and confirmed by her), it was being “wired for sound” as we like to say, that kept waking her up and typically that’s not the case.  It means her sleep efficiency was down, but otherwise her sleep study looked pretty good.  She had one period when her oxygen saturations were lower than we’d like to see, for about 10 minutes straight, that was not positional, but otherwise her saturations were beautiful all night.  What was happening during that 10 minutes is anyone’s guess!!  This news comes with more of a sigh of relief than one might expect…I am already struggling with the idea of two on oxygen at night, the idea that Abby might need it too was more than I could even contemplate.  It was there though, in the back of my mind, so this news came with a huge weight lifted.

Madison sleep study looked good too!!  We have a new setting for her Bipap (actually reduced by a point on the upper number) and information on a setting we can do on her bipap that may allow her to tolerate it for longer each night, called Biflex.  She had, per the doctor, an AWESOME night of sleep!!  She should have felt like a million bucks the next day!!!  So why didn’t she?

In addition to the usual overnight sleep studies, the doctor had us go ahead and do MSLT’s.  This study has the patient stay at the sleep lab all day and after being awoken at 6ish, they have them lay down in a dark, quiet room every 2 hours and attempt to fall asleep for 20 minutes.  All the while they are hooked up so they can monitor how quickly they fall asleep (if they do), and if they get into REM sleep during these naps.

Honestly, my kids almost never sleep during the day, unless they are sick.  They can be drop dead exhausted and still cannot fall asleep, so I didn’t expect much to come of this test, and even asked the tech to MAKE SURE we really had to do it.  We did, and we gained some new information.

To say I was shocked when Madison told me she fell asleep during 4 of the 5 nap times (8am, 10am, 12 noon, & 2pm), with only the last one  at 4pm being the one she didn’t doze off during, would be an understatement.  Abby sharing she didn’t sleep during any of them, now that’s what I was expecting!! 

Dr. J had information to share.  Madison fell asleep within a minute on the first two naps, in three minutes on the 3^rd one, and 11 minutes on the 4^th one.  This, along with the one she did not sleep during, averaged together, had her falling asleep in 6.8 minutes, with anything under 8 minutes being abnormal.  She did NOT go into REM sleep during any of them.

So, the good news is, she is not narcoleptic (which I already knew), and the not so good news is that this qualifies her for a diagnosis of Hypersomnia.  Basically, excessive sleepiness.  Which seems so benign in some ways, but as we have clearly seen, is really something far more sinister.  When you are THAT tired, your brain doesn’t work as well, and you just generally feel like crud….ALL THE TIME. 

The remedy, if you will, is introducing a stimulant, and in this case the recommendation is for Provigil.  Maybe.  The thing is, we’ve discussed using Provigil before with Madison, even before we had this confirmation, and the issue lies in giving her the artificial feeling of energy when there is a very real energy deficit at play.  If we “give” her energy that she proceeds to then use, that energy is coming from somewhere and the question is, which system is going to have energy pulled from it, and how bad will the effects be.  Oh, and it can cause tachycardia (high heart rate), something we are already battling due to her cardiomyopathy, and something we really don’t want to exacerbate for fear that it will stress her heart.  Yeah….lots of discussions need to take place with several doctors before this is really an option.

The reality is though, there aren’t really any other options to treat this, AND…..

We now have additional information to work with.

After getting back from Houston and having a “tired” Madison, things turned a week ago Saturday and I suddenly had an absolutely, bone deep, exhausted Madison.  Add in some intense nausea …..and then naps almost daily….and I knew something was up.  We saw the pediatrician on Wednesday and again I am thankful she trusts my gut. 

Even if I don’t like what she wants to test for. 

As I shared in my last post, we did labs on Madison that afternoon, and those included testing her for a reoccurrence of Mono.  I couldn’t allow myself to even think about it….we just cannot go through it again.  Particularly not right on the heels of a reoccurrence of the Mycoplasma infection in December.  Just cannot.  It took too much out of her last time (early 2009).  I had a feeling though, deep down.

You know it’s not good when you hear your doctors voice on the other end of the phone.  As awesome as Dr. S is, if things are normal, her nurse calls.  So when I answered and it was Dr. S, I actually said, “Noooooo”.

Madison is testing positive for another acute mono infection.  Both IgG and IgM for EBV are very positive. 

Of course, I said, but I didn’t think you could get it again!!!  Well, if your immune system is crap, apparently you can, and she does, so there you go.

This is frustrating and concerning on so many levels. 

-We are still not back to baseline since the last round of Mono & Mycoplasma (2009)…not even close.

-No illness is good with Mito, but Mono is definitely one you want to avoid, much less her body having to fight it twice

-To me at least, this is just another indication that her immune system is out of commission, and I am just not sure what we do about that

-We yet again get to try and not have the other two get it

-The last round of this crud led us into one of her worst years ever….Cardiomyopathy, respiratory weakness and arthritis were all diagnosed within 8 months of the last Mono infection

-The poor thing really just needs a break

A friend asked yesterday how long it took her to get over the last round and I had to say, in all honesty, she never did!!  When I realized we have hit the two year mark since the last round my stomach hurt.  We have been trying for TWO YEARS to get her back to where she was before Mono came into our lives.  TWO YEARS. Sigh.

Wallowing and worrying doesn’t make this any better, although I suspect I will be in that place for at least a few more days.  Maybe longer.

Please just pray for my girl.

Perspective

I’ve been feeling the need to post all week, and have actually written no less than three posts, none of which will probably ever be posted.  Thankfully I did not post impulsively and took the time to come back and re-read them….all rather whiney and I am pretty sure none that anyone would have enjoyed reading.  Getting it out served it’s purpose….I vented even if I didn’t share it with anyone.

I want to say we had a “hard” week, however the reality is, we had a “tedious” week.  I am reminded again how much being sick messes with my mood (lovely sinus & ear infection that’s been kicking my butt), and how writing during that time is generally very “blue” and not at all inspired.  All creativity is drained when I feel like crud!!  And let’s face it, when your feeling blue, keeping perspective is harder.

Now, before anyone says anything…..no, I don’t think I am important enough to worry about whether my posts move someone else.  I know that this is MY place, and if I need to just “get something out”, it’s okay.  I get that I am not expected to be creative (if that’s even a hope) or clever, or meaningful all the time.  I want to try though….and the posts written this week fell well short of that mark.  They contained all kinds of information, some less than stellar feelings, and just blech….WELL short of the mark.

There is another reason though that I have not posted them, and that’s where the perspective comes in. 

I am the first person to tell people that while perspective is awesome, and keeps us from wallowing in the depths of despair, our “worst day” is still our worst day and deserves to be acknowledged as such.  So, if a families worst moment is their child having an ear infection, their emotions about it are as legitimate as any I might have dealing with something most would consider more significant.  Our reactions are predicated on our experiences, and thus, there are issues that I might not even blink at, but hit others very hard.  ALL normal and understandable.  All worthy of our sympathy/empathy and support.

Perspective is also a valuable tool for existing day to day though.  It helps you step outside of yourself and your circumstances, see how much “worse” it could be, and be thankful your plate is “only” a little full to over flowing.  It gives you a measuring stick if you will, that allows you to get back up and continue the good fight.  I cannot imagine living life without perspective.

That perspective has been intense this last week, and truth be told, for the last 6 months or so.

The Mito community, at least the part that communicates regularly, is really rather small.  While there are many more families out there fighting the good fight, I am well aware that most are not involved with the groups I am a part of, or have a blog I can follow and keep up with their journey.  I hate that because I know how much knowing others walking this walk has meant to me, but at the same time get that it’s not for everyone.  The upside to being connected in this way is the support and companionship of others that can “get” our exceptional life…..the downside, if you will, is having a window into the difficult, and often heart wrenching, trials these families are going through.  It provides perspective….sometimes intensely.  It also proves to be incredibly hard sometimes.

Having been in the mito world for ten years I know we go through heart breaking times when too many of our angels are earning their wings.  For reasons I cannot quite explain it tends to come in waves, but even I can see that the last 6 months has been far more heart breaking than ever before.  I know part of it is that I have had the honor of meeting some of these kiddo’s, and it is no doubt the sheer number of kids we have lost or who are fighting for their lives as we speak. 

Please take a moment and do a couple of things for me……hug your babies a little tighter, and pray for these families. 

As I said….our week was tedious but doesn’t come close to qualifying as “hard”.  It included:

Catching up on laundry from Houston (tedious)

An art party (fun)

The elder daughter dealing with intense nausea for 4 days straight, and actually sleeping during the day (never a good sign)

Two hours in the pool for aquatic therapy (good)

The worst sinus headache I have ever had & generally feeling cruddy all week (tedious)

First appointment with the palliative care team (good, but draining)

A trip to the pediatrician for all three (seriously tedious, but needed)

(resulting in)

A nasal swab for the nauseated, exhausted kiddo (in case it was the flu – negative)

A trip to the imaging center for an xray of the boy’s foot (no signs of a break)

A trip to the lab for blood draws on the 2 oldest trouble makers (lots of blood needed, 2 sticks for Madi, 1 for Chance)

A trip to the pharmacy for another antibiotic for the youngest (recurrence of sinus infection)

An increased in Advair for the youngest (wheezing & course breath sounds)

Orders to monitor heart rate on the wheezy sinus infection kid (higher than we wanted to see while at the peds….continuing to be while monitoring, but not bad enough to have to call)

A movie with all but Madison (cool documentary and a momentary sighting of Phil, host of our fave show Amazing Race)

Two hours of massage therapy for the two eldest (good…and I am jealous)

A run to Urgent Care for me (which means I finally gave in to the crud)

Another trip to the pharmacy for an antibiotic for me (no comment)

Three hours for getting to horse back riding therapy, riding, then getting home (well worth the time in the car & the early morning)

Watching the old man get ready for & take off on a bike camping trip (good)

Watching the old man ride down the street towards home (even better)

When all is said and done, not sure this ended up being much better than the others I have written!!!  I am pooped and anxious to start feeling better!!!! Forgive me!!

Hope all have a good week!!!

My Loves

I asked Madi to make a heart for me to take a picture of.  As my dearest husband so lovingly pointed out, it’s not perfect.  It’s a little awkward.  But then, in that very way, it is so Madison.

Not to worry….she knows this….it’s part of who she is…part of why I love her.  She has been, and will always be, a bit challenged in this area, but it’s something she embraces and runs with.  Love her for that.  She doesn’t put on airs or pretend to be someone she is not.  She likes comfy clothes over what is in style….likes her hair loose or in a pig tail, but none of that “styling” I so often attempt to do (with hair as beautiful as hers, it’s hard not to want to play with it)….isn’t interested in wearing make up…these are not her concerns.  She is, in this way, the old soul we have always known she is. She is comfy in her own skin…..awkward and all.

My son surprises me at times.  At 17 ½ he is working diligently to become independent, as he should.  I am convinced that there is some gene that turns on as we turn 17 that makes us NEED to get away from our parents and be on our own.  I know I was there at that age, and I see it in him now too.  It literally happened overnight it seemed, and while I am happy to see it, I am attempting to make the adjustment with him, which is not always easy. Or pleasant. Or comfortable. We are making it though, one day and one step at a time. 

He recently posted something on Facebook that made my heart ache in a wonderful way only a mother of a 17 year old young man’s possibly can.  It was a note titled, “My Greatest Inspirations, and Why they are So”. He is a deep kid….always has been.  I quickly went to check it out, anxious to see what his inspirations are, in case I had missed one along the way.  What I had not expected was that I would be the first person on the list, and that he would speak so very much from his heart as he wrote, “Mom: Thank you for helping me through all my life. Though I know we’ve had rough times, you are one of the few reasons I am who I am today. Love ya!”.

His dad was number two, although Chance made sure to let us know this was “in no particular order”, I still liked being #1…LOL.  And then, as big as my heart felt already as I read through the list, it simply burst when I read his last inspiration.  He wrote,”And finally, my biggest inspiration is…well…God.  He’s guided me through everything. He’s helped me when I am depressed, when I am sad, or something went wrong. He’s the reason I am here. The music I write, the subjects that I study, all the people in my life. He chose them, and brought them to me. Amen.”

Happy, happy sigh.

I hugged and kissed him (much to his chagrin). 

Abby asked for (okay, begged) for a wig for her birthday.  It was our compromise so that she didn’t continue asking if she could dye her hair black. My passionate, stubborn, creative child has given me the ability to (most of the time) think on my feet, evaluate what’s really important, and make compromises we all can (mostly) live with. I love that she embraces her uniqueness, and simply IS who she is.  I love that she follows her heart.

All three embrace their uniqueness in their own individual ways. 

But then, they do come by it naturally.

My first love swept me off my feet 25 years ago…….back when I was 17 and was ready to take on the world.  It was, in part, his uniqueness and comfort in his own skin that made me love him.  And while it makes me crazy at times, I would not want him any other way. How blessed am I that we could pass that on to our precious children!!!  And yes, they make me crazy with it sometimes too!!

My loves, indeed.

**HOME**, Good News...& Square One

The escape mission was a success!!

No calls saying "wait, don't leave town yet", the weather cooperating and giving us the window we needed, and some very cooperative kiddo's helping mom and I get packed and our room cleaned up, made for a clean escape from Houston.  Still, it wasn't until we saw the Buccee's sign in Madisonville that I allowed myself to breath a sigh of relief that we had, in fact, gotten away.  The kids were sad to say goodbye to their friends, but we were all VERY excited to get on the road towards HOME.

I suspect I could now drive the length of I-45 from Downtown Dallas to Downtown Houston with my eye's closed.  With a stop at Buccee's of course.  We have our landmarks we watch for, including some I'd rather forget but Madison insists on pointing out EVERY SINGLE TIME!!  2009 was a rough year for traveling this route for us.  First, we did it way, way too many times.  Second, we somehow managed to have some mishap on virtually every leg of the 9 trips down, whether it was a flat tire, a tornado coming through the town a half hour before we drove through, or an accident that blocked the highway and had us sitting in one spot for 2 hours, there seemed to be something almost every single time.  NOT memories I particularly hold dear, and I was pretty convinced we were jinxed.  But, as Madison so wisely noted yesterday on our trip back, while pointing out the spot where we had our first flat of that year, it was not just the spot where we had a mishap, it was also the spot where we were graciously helped by a state trooper who happened to be off duty and still made sure we were taken care of and back on the road safely.  Thanks Moo for reminding me that even in the midst of something cruddy there are blessings too.  Mom won't complain next time you point out "our spot"...LOL.

Seeing the Downtown Dallas skyline never fails to send a rush through me on these trips.  Even the short ones.  It means we are officially HOME.  Even hitting rush hour traffic as we merged onto 30 didn't phase me.....just a few more minutes and we would see our house, and more, we'd see Michael and the critters for the first time in 11 days.  JOY!!!  And it was OH so good to see the front of my house....to see my dearest husband peak through the blinds and see us pull in with a huge smile on his face....to see CoCo peak through and start wiggling with excitement. Love, hugs and puppy kisses ensued....followed by a quick unload of the van, unpacking of the suit cases, and finally, my butt parked on MY couch with a very happy pup laying across my lap.....BLISS!!!

So....we are home.....we slept in our own beds (the kids are still there as I type).....and now we just have to get back into our routine, whatever that may be.   Mom made it home safely too and I suspect she was never quite so happy to sleep in her own bed last night.

Now onto the good news......cardiology called this morning and after the doctor did her own measurements, Chance's heart function was only down slightly and was much better than the computer numbers were spitting out.  HUGE PHEW!!!  Just goes to show how critical it can be to have a doctor that know's her stuff like ours.  While mostly this was a small side worry, I am relieved to have the good news and not have to be concerned about this in addition to the other stuff.

However.....

The rest of the phone call was to tell me all the other testing we did was normal.  Chest xray and all the labs were cold stone normal......which is GOOD, don't get me wrong, but it does take us "back to square one".  I think I have mentioned my lack of love for square one right now.

We have, thus far in our journey been fortunate from a medical stand point, that typically the kids will "show" us something to work with.  While it can be disconcerting and worrisome to have abnormal test results for sure, the reality is that it gives us clues to what we need to do to help them.  Without them, we cannot make a plan or know what to do.  Being in the dark is not a good place to be ALL the time, and thats a bit how I am feeling right now.  For both Chance & Madison.  Love me some normal labs when all is going well......not so much when we need to know whats going on.

So....sigh.....back to the drawing board.

We do have one more test cardiology recommended we get done, so I have to work on how to make that happen here if possible, or there when we go back next.  Otherwise, I really don't know what the next step is with Chance.  I will email all the docs involved at this point and see what they think and maybe a new direction will define itself.  I am hoping we can get in with the pediatrician next week and get her help in the next step with both kiddo's.....AND see if my hunch is right and Abby has another sinus infection.  It's just a good thing our pediatrician loves us!!!  LOL

Square One it is.....at least being HOME and at square one is better for my psych  :-)

Thanks for the prayers for safe travels, and for the continued prayers that we WILL at some point figure these kiddo's out!!

BIG hugs

The Mystery Continues

Answers remain elusive.

Still waiting to hear how Madison's labs look.

Sleep studies turned into daytime studies too......which means it's been a LONG 24 hours!!  We should hear what, if anything, the studies showed next week.  The girls say they slept well, and I should have...was definitely tired enough...and even had a bed to sleep in, but just didn't.  Being awoken at 6am makes for a sleepy trio!!  A bit jealous that the girls got to take naps all day!!!

Chance's cardiology appointment was a mixed bag.  The ECHO showed that his function is decreased...still just barely within the normal range, but much lower than it was in August....and that his mitral valve is regurgitating more.  Not something we were happy to see, BUT......not the answer to why he is losing weight.  The cardiologist wants to do her own measuring, just to make sure the numbers the computer was spitting out are right.

The "good" part of the appointment was that the cardiologist had some ideas on what else we need to look at and we got started on that today.  We did a chest xray and a bunch of labs, and she sent me home with a request for another test that we are hoping we might be able to get done in Dallas.  We are throwing the proverbial net out at this point....looking at endocrine possibilities, inflammatory markers, and following up on some elevated labs from November (that I didn't know about).  By next week we will either have some direction to head in......or be back at square one.

Getting tired of square one.

All appears to be a go for us to take off in the morning and head HOME!!!!!  We are all very ready.  Please pray for safe roads for us.

Southwest Airlines...and Margarita's

I am often struck by the psychology that comes with "living" at the Ronald McDonald House (AKA RMH or the House).  Whether your here for a "short" stay like our visits are, or here long term, it's an interesting topic to explore.  And while I would like to ask you all to imagine it, the reality is that unless you have either lived on a commune somewhere, or have had stays at the RMH, it's really not something you can truly grasp.  And really, even if your one of the few that have lived on a commune, it's still different.

"A commune is an intentional community of people living together, sharing common interests, property, possessions, resources, work, and income. In addition to the communal economy, consensus decision-making, non-hierarchical structures and ecological living have become important core principlesfor many communes."


Commune is as close as I can get to sharing what it's like living here, but really, it's very different.  We are not an "intentional community" in the sense that we are not here because we "want" to be.  We are all grateful for the accomodations, and grateful for the exceptional medical care we can get here, but we are here for medical care and that's just not ever something you "want" to be somewhere for.


We do all, essentially, live together.

We do share common interests, if you will.  We all have the common bond of having a child/children receiving medical care, but realistically, there are many different reasons for the need.


We share resources, as in places to get help, ways to travel for medical care, how to, well, do it all.  


We do not "share property" but we do all use the common areas, and attempt to maintain these areas.  And the reality is, we do share, more than one might expect.  We share rides as needed, help each other out with food when someone is running low, monitor each others children, give each other pep talks, offer shoulders to cry on, laugh (a lot), commiserate when we can, pray for each other, and appreciate the kindness of strangers (and many who become friends) who feed us nightly.

Which brings me to the title of my post.....Southwest Airlines.  And margarita's.  

I have always liked SWA.  I like their business philosophy, their marketing techniques (having a husband in marketing, I notice things like that), and have always had good experiences flying with them.  A few years ago the kids and I met an amazing lady who worked for SWA for a very long time, and we were once again impressed....by both the company and the people who make up the company. The people who ARE the company. It is a unique quality you don't see often in business....that the PEOPLE are what makes the company great. And that the company recognizes that.


I have grown to love this company.....for all the reasons that I already knew, and so much more.  


SWA has been very, very involved in the RMH world, and have played a large part in the House here in Houston being here.  It's one thing to see the plaque's commemorating the areas they have funded to happen....it's a whole other thing to see them here, at the House, cooking a meal (by far some of the best we ever have), entertaining us, finding out who we are and becoming friends....real friends who care and keep up with us even when it's not their night to be here feeding us.  Here making us margarita's and making sure we are well supplied for the afternoon and evening.


The distraction is welcome.....but so much more happens on SWA nights.  There is a feeling in the air....a feeling that our friends are here and that we will have a wonderful day.  They will make sure we have a wonderful day.


I have tried and honestly, failed, to try and express to them how much they mean to us....ALL of us here at RMH.


Tonight I sit here, margarita in hand (don't ask how many I have had.....Terry has been keeping me supplied<grin>), and I raise my glass to an amazing company....to dear friends....Southwest Airlines.

{Medical Monday: Balance…..Again}

Gosh, it’s hard.  Keeping it, maintaining it, striving for it….it’s just hard.  Rewarding and amazing, but hard.

Especially when we are here.  In this place where, while I try valiantly to have there be fun, we are essentially living somewhere for medical reasons, keeping balance seems virtually impossible.  The medical stuff is just too ever present.

Tonight I am failing, in my own head at least, to find a balance.  My thoughts are on what is coming this week, and I am allowing concerns and worries to overwhelm me. I am allowing them to be there even when I am doing other things, and I am missing out on being truly present in the moment…..and I hate that.  And while I would like to think that, now that I have come to the revelation, I will be able to get back on track tomorrow, I think the reality is more that it’s going to take getting home before that’s really going to happen. 

Maybe.

If I can get things to settle down again….

(and that’s looking like a pipe dream in this moment)

But then, the reality is that by virtue of being out of balance, my perspective is less optimistic.  I get that and know it, so am able to maintain hope that once we are there and I can recover, I will again feel like there is some way to get it all back in check, or at least enough of it to feel optimistic again.

We have actually had a relatively low-key weekend, with some neat experiences thrown in. 

The girls had a sleep over with their bestest buddy down here, and clearly had a ball!!  LOVE that they had this chance and that I could leave them in another mom’s care without so much as a second thought. 

The kids have strengthened relationships with friends here at the House, particularly the girls, who have seriously bonded with two precious young ladies here.  While we have known them both for a while now, they have become dear friends to my girls, and I LOVE that.  Oh, and it was proclaimed by one of these precious souls today, that I am the coolest mom ever….yeah, nothing quite like hearing that from a teenager!!  I have only made her repeat the compliment a few dozen times now, particularly within earshot of my children…LOL.

I have met some lovely people, have had the chance to strengthen relationships already started, and have again been reminded how grateful I am to my mom and all she does to help us.

So…sigh…..now we begin another medical week.  We were able to get Madison’s labs done today, we head over for sleep studies tomorrow evening with the girls, and I learned today that Chance will be seen in cardiology late Wednesday morning.  Barring anything unforeseen, we will be on the road Thursday morning heading for home…H O M E.  Oh does that sound good right now.

The reality is, by day 8, things start to feel a bit surreal around here.  J

Prayers for this week…..

That we hear back on Madison’s labs by Wednesday and that there is a clear cut way to approach the issues.

That the sleep studies are uneventful and we are able to gain needed information.

And finally, that our appointment with cardiology is productive, and either gives us the information we are seeking, or clearly shows Chance’s heart is not an issue.

Please too, keep some of our friends in need of prayers in yours tonight…..Cooper, Harley, and Eithene.

Held Up in Houston

Well.......we are here and will be till next Wednesday or Thursday now.

On the one hand, as jealous as the kids are of all you guys in Dallas getting to play in the snow, my thought is, your at the same time freezing your tushies off, so I am NOT jealous...not one little bit.  We are cold here, and were supposed to get snow, but managed to just get ice...fun fun fun. But we are still warmer here than there, and for that I am thankful!!!  We are missing the Old Man and the critters...a lot....but are being well cared for and loved here in Houston and are making the best of it.

While we knew earlier in the week that we were not going to make it out of town towards home today as planned, we thought we'd get out of here by tomorrow.  However, the girls sleep studies (that were supposed to happen last night) had to be postponed and the best we could do is Tuesday night.  We have accomplished all but those, so this will give us a couple of days of down time, which we really all need.

Thanks for the prayers for this week!!!  We have felt them and appreciate them more than we can say.  Since we are holed up here at the RMH today, I thought an update was in order since we asked for specific prayers and have some of the information we anticipated hearing this week.

Our pulmonologist was NOT too upset with me about the oxygen not being started yet, but it was reiterated that it's something we need to make happen.  This was further enforced by the scale.....Chance was down 6 pounds since we saw them in November, even with the supplementation.  While the pulmo is not feeling like the lower-than-we'd-like-to-see oxygen saturations are the WHOLE answer to Chance's weight loss, treating it with the oxygen at night needs to happen to see if it makes any difference.

Madison & Abigail will have their sleep studies and while we know we will be adding oxygen to Madison's bipap, we will see how things look for both girls and see where we need to go from here.

Our rheumatology visit went really well!!  While one of Madison's knee's still has some fluid on it, he was pleased with her response to the steroid injections.  After some talk about where we go from here, we got the exciting news that we might be able to try and wean Madison off her Methotrexate as early as this summer!!  As long as she continues to do well, no more joints become involved, and the ones already affected behave themselves, we are good to try. If we can get her off the methotrexate and keep things stable with the injections and an occasional oral steroid pulse, it would be huge!!!   All in all, it was a very good visit.

Halter monitor is done and now we wait and see if there is anything exciting to hear.

As I have already shared, unfortunately, Chance has lost more weight. I don't even know what to say about that.  We are more than a little bummed.  And concerned.

We saw our GI nurse yesterday and while I'd hoped maybe, somehow, the weight loss we had seen the day before at the pulmo's would have been a fluke, and more importantly, wrong, it wasn't.  He really is down 4 pounds since his last weight check. Blech!!!  Plan is to finish looking at other organ systems at this point, which means we have his heart left to look at. At this moment, he's scheduled for an ECHO on the 17th, but after talking to our pediatrician's office today, we are trying to go ahead and get him seen while we are here this week.  We shall see.

In the midst of all this, we have had the chance to spend time with people we adore, and that so makes your heart smile even when things are less than ideal.  Several of our friends have been at RMH with us, which always makes the "down time" funner when we are hanging around the house.  We were able to spend the evening with the Andrew's, eating, laughing, and watching the girls have a BALL with their bestest girlfriend, Thing 9. We were able to spend an evening with the Parker's and were again reminded how freaky it is to have our twin family down here.  Chance was able to spend the day visiting with Rachel, and the girls and I were able to meet up and spend the evening with the whole Adam's family, which always does the soul good.  And we had a lovely brunch with Aunt Gayle, Uncle John, Margie, Ashton and precious Livi Lou!!!  We discovered an amazing new dip we picked up at Bucee's on our way down, discovered an awesome place to buy pre-made gourmet food that is to DIE for, and ventured out long enough today to get SmashBurger's since we were all craving them!!!  So we have been eating well too....LOL.

Unfortunately, the Mito Fun Walk was cancelled for tomorrow, meaning our easy access to see all our mito friends at once isn't happening, so hopefully we will get the chance to see a few others while we are here.  Plans are slowly but surely being made to keep us busy until we finally get to head back home.

The kids are tired, but the down evening and day today have done them some good.  Abby had a rough tummy & head evening tonight, but I am hoping she is feeling tons better when she wakes in the morning.  Some more downtime tomorrow will be good for them.

Late at night, like it is right now, is when I miss home the most.  During the day your distracted, but when it gets quiet, all are in bed asleep, and there aren't the distractions, the being away from home blues tend to hit.  As always, Michael is holding down the fort well, and while CoCo acts as though she is miserable, I know she is happy to have had him home so much this week.  I am blessed.....more than I can say....to not have to worry about things there.  It's just hard to be away so much, and when the days turn into more than a week, well......

Hope all our friends and family in the snowy tundra of North Texas are staying warm and well.  We miss you....just not the cold that is freezing your tushies off<grin>.