Flip Flops in Winter

We live in Florida (for those of you that don't know) and today's high, for our area, is supposed to be around 83 degrees (please don't hate us for that because honestly, it makes me miserable). I hate the intense heat that I know is coming and it looks like it will be arriving sooner than I'd like, but I digress. So, it should come as no surprise that during the "winter" we're running around in shorts, tank tops, and flip-flops. Rae is no exception and yesterday she broke in her new flip-flops while we were at the park.

After she spent some time swinging, we decided to help her slide down the toddler slide.

She's just too cool!

Then it was time to try out the "BIG" kid slide (with a little help from Aunt Jen of course).

At the top and ready to go!

On our way!!
Whoa! We're sliding faster than I thought!

Oh, crap! Oh, crap!!
(don't worry no one did a face plant in the mulch)

Once we finished our trip down the slide it was time to chill out and do some sensory therapy.

All in all, it was a great day in SUNNY Florida and this is the first of many trips to the park.

Tick, Tock, Tick, Tock...

I am going crazy. In an effort to keep my mind from dwelling on the highly anticipated arrival of Rae's muscle biopsy results, I have been cleaning and rearranging furniture around the house. It has now been just a tad over 8 weeks and I am getting even more anxious as another day passes.

I finally caved and sent an email inquiry about any potential appointment cancelations before our scheduled follow-up in April and as a side note asked about the status of her biopsy results. I'm sure they've seen plenty of emails similar to that one, but if it gets me any kind of an answer then it was worth looking like a total nut case.

Here's to more waiting...

The First and Last

Today, it has been one year since my Grandfather passed away. I haven't spoken of that time much...at least not outside of my close friends and family. My Mom's side of the family is pretty private and well...solemn (not that they aren't able to have fun, it's just a different kind of fun). We've all been thinking about this day's approach and we've been thinking about him...a lot. I'm not going to go on and on about my Grandfather on this site (I have a separate blog for that), but I am going to post a few pictures of his brief relationship with Rae.

The first time Great Grandpa held Rae.
It took over a day to convince him to hold her
because he refused to take her from my Grandmother.

Giving Rae some sugar.

 

"Be quiet Papa!" The last picture of them together.

A Healthier Stronger Me

Since I do all the grocery shopping and prepare the majority of our meals, I guess the buck on healthier eating stops here. I don't want to own up to that...ever...but I must! It isn't easy trying to make lifestyle changes when your life is constantly...well...changing. Everyday is a little different than the day before and tomorrow will be different from today. Sure some things are pretty much a guarantee like PT on Monday, ST on Tuesday, OT on Wednesday, and a second session of ST on Thursday. Fortunately, two of these session are in our home, but our PT is allergic to cats and we have three so that comes with it's own uphill battle (seriously, I chase hairballs around with my vacuum for at least 5 minutes if I'm only doing two rooms and the kitties are put on lockdown).

In between those guaranteed appointments we have to juggle:

• going to & from forgotten appointments made months ago or last minute emergency appointments.
• calling our insurance company & doctors about billing questions or coverage
• researching assistance programs, medical diagnosis, medications, & alternative therapies
• cleaning heaps of laundry, stacks of dishes, & ever present cat hair
• random nap times (she never goes down at the same time no matter how hard I try to get her on a schedule and lately wants to take a nap around 7pm!)
• administering anti-seizure medicine twice a day (plus vitamins, fish oil, nasal spray, and pro-biotics...times 2 because I have my own vitamin cocktail to swallow)
• attempting to get Rae to drink 3 bottles each day
• feeding Rae 3 meals (which occasionally means a pediasure...two birds one stone...score!)
• bathing Rae & brushing her teeth (basically all things hygiene related...some daily...others not...oh and I have to shower and brush my teeth too!)
• battling Rae's strong dislike of having her hair done (which can end up with me looking like a pro wrestler holding an opponent in a head lock or her looking like she has perpetual bed head)
• multiple mini sessions of all three therapies, conducted by me, in between her scheduled therapies
• paying bills/sorting mail/running errands/picking up the trail of stuff we leave all over the house
• trying to maintain my own sanity by spending time with friends (face to face or online)
• carving out "quality time" with my husband or finding some alone time (hahaha...that usually means a shower)
• working on long overdue projects (who doesn't have a pile of those?)
• and last by not least...feeding myself and making dinner (and lots of banana bread)

I admit, Rae eats ALOT healthier than my husband and I do. She doesn't drink soda or sweet tea and her juice (40% less sugar) is almost always cut in half with water. The majority of her baby foods are organic (yes, we're still feeding her baby foods because of her difficulty chewing and aspirating liquids). She rarely eats anything from a fast food restaurant with the exception of Taco Bell Mexican pizzas (something I'm going to try to make at home next week); which, I am going to attribute to my obsession with them during my entire pregnancy (every week on Thursday...the drive thru worker knew it was us before we even made it to the window). We have yet to meet a food that she won't consume...or a t-shirt for that matter.

Now, I find myself being convicted about how often I neglect my own care...physically speaking. I don't eat proper meals (I usually skip breakfast and just drink coffee). There is a lack fruits and veggies and the use of more processed foods than I care to admit. I'm not the best about exercising...I do try to walk once or twice a week and recently started biking with Rae in tow. I like to keep meals for myself simple and my go to's are usually microwave dinners (quick, cheap, and some of them are quite tasty). But, that doesn't really help me over all.

In order to take care of Rae, I HAVE to take care of myself. That means making better food choices, getting some exercise, and taking my doctor a bit more seriously. So, I am attempting to turn over a new leaf and take care of all of me...mind, body, and soul. I'm not yet sure how I'm going to work it into our routine (like I actually have one <derisive snort>), but I know it will involve many small baby steps towards the ultimate goal...a better, stronger, healthier me.

Riding in the Sun...Finally!

Awhile back, we bought a bike trailer for Rae. I was stoked because I purchased it for 50% off of the regular retail price. It symbolized some level of freedom for me. Then Rae got sick, we went to Atlanta, the holidays came (and went), I got sick, Rae got sick again, and the weather has been fickle. Finally, we got a brief break and were able to take our first ride!

My riding buddy! 

What's that and can I get it into my mouth?

She was way more interested in the straps that were keeping her upright and kept trying to get them into her mouth.  During the course of our ride, she fell to the side twice and I had to stop and make adjustments to her support system (another pillow or two might just do the trick).

I also learned that our flat street is not so flat after all and I underestimated how much more challenging it would be to ride a bike while towing an extra 40 pounds! That and I need a new (wider, better cushioned) bike seat. My butt was killing me! It is evident that I need to be a tad more disciplined when it come to exercising.

All in all, the bike ride was a success...if you don't count Rae hanging over in her harness...and I hope to do it again (after I get over being sick...again!)

Mommy are we done yet?

Sun Beams: Holding Hands

Happy New Year!!!

Yes, I know it has been weeks since we rang in the new year, but Rae has had pneumonia and I've been otherwise occupied. This year we decided to spend the evening at our local zoo. From Dec. 14th through the 31st the zoo opened for the first annual "Night of Lights." I have been searching for something we could do as a family and this sounded perfect. Lights were everywhere! We saw...

A Herd of Blue Elephants
(aren't they supposed to be pink?)

Leaping Frogs

A Beastly Gorilla

A Flock of Pink Flamingos

A Fierce Lion

A Stunning Peacock

and Flying Fish

But my favorite display that evening was this...

Rae holding my finger while we walked.

I couldn't imagine a better way to start the new year!

I wish you all a new year filled with all of life's tiny joys!

The Scar

Rae had a muscle biopsy at the end of November. I was unable to see the incision because of a gigantic bandage.

(I was instructed not to pick at it or submerge it in water)

There is a scar under there somewhere...

Finally, it started to peel away on its own (it also had a tear) and with the assistance of Rae's OT the bandage was removed.

I couldn't do it. I was paralyzed with fear. 

As much as I wanted to see the scar I didn't want to at the same time.

I'm such a wuss!

Underneath the bandage we found...MORE bandages! ARGH!!!

These were actually sutures.

Again, I was told not to pick at them per a NP friend.

So, we waited and waited...the suspense was killing me!

I wanted to see what was done to our little girl!

Finally, (unless another layer hidden under the sutures) they came off!

Here's what we saw...

OUCH!

Our little girl is a trooper!

She never even acted like this gave her much pain (just seeing it makes me hurt). 

We only gave her pain medication (tylenol) the first two or three days.

Now we are massaging vitamin E on her scar twice a day with the hope it will minimize the scar's appearance on her tiny little leg.

(I swear it is about 2 inches long! Way bigger then we anticipated!)

There and Back Again: The Last Stage

The evening before the biopsy we stayed at my brother's condo in downtown Atlanta. In all the years we have been traveling through Atlanta, we have never actually been downtown (except once when Mom and I got off on the wrong exit...Eek!...this was before Garmin's). His condo was right by the Georgia Aquarium, Centennial Olympic Park, and the World of Coca-Cola (we did not go to a single one of these). Since it was after Thanksgiving, the park was twinkling with Christmas decorations. It was breathtaking (so cliche right?) when seen from fourteen stories up. The skyline was beautiful and I couldn't resist taking pictures (just playing around) off of his balcony.

Since we had to be at the surgical center at 7:30 (and we still had to find something to eat before we arrived), we decided to get up around 4:30am and leave by 6 (at the latest). Our butts were dragging! First on the agenda: find the surgical center (check). Second: Find food! (Houston, we have a problem!) I was warned before hand that there was no cafe or anything at this surgical center; however, we could bring food with us. I thought finding something would be easy...boy was I wrong! Everything probably would have gone smoother if it wasn't for two itty-bitty problems...I am a stress eater and Jacob is a stress smoker (he is only allowed to smoke in his car). So, with Rae passed out in her car seat, I searched for fast food joints near the surgical center using "Around Me" (that was a nightmare...never again I tell ya! I'm sticking with Urban Spoon!) while Jacob listened to the Garmin.

Rae with Aunt Angie.

It took us forever to find a fast food place that was open for breakfast (oddly enough Arby's was open...didn't know they served breakfast). After much debate, gnashing of teeth, several exchanges of sharp words, we finally stumbled upon Einstein Bros Bagels! I was stoked and hopped out to get some much needed munchies. I skipped back to the van clutching a bag containing a sausage, egg & cheese bagel and a blueberry scone (later, I was sadly disappointed in the sammie...but found comfort in the tasty scone). Jacob didn't want anything (I bought him something anyway...just in case). Now we were prepared. We knew where we were going and I had stress relief in a bag...let's do this!

I'm not going to bore you with the check-in process (we've all been there). Just know, I paid my agreed upon price and went about my merry way (after making "arrangements" for the balance).

It always feels like time slows to a crawl whenever something stressful is happening. Every tick of the second hand loudly reverberates...Tick...Tick...Tick. We met the anesthesiologist (the one that had to get paid). We met a few nurses, watched a few cartoons, and I softly told Evie her favorite story (I Like Myself). She fell asleep in my arms. When they came to take her into the back and prep her for surgery (basically poke her with needles and knock her out), I didn't want to let her go. It was so hard to let her go. But, we had to...so we did. We watched the nurse carry her down the hall and out of our sight.

If I thought time moved slowly before they took her back it was nothing compared to its molasses like movement during the procedure. We were both restless. I almost immediately started eating my disappointing sandwich and Jacob dashed outside (he would not leave her). I played with Rae's iPad, flipped through a magazine, sent a few text messages, but nothing kept me occupied for long. Every time the double doors swung open I nearly leapt out of the chair from hope and fright (this continued for a couple of hours). The nurses kept us updated and when the procedure was over the surgeon came out to give us a stellar report. Everything went fine, but she's having some difficulty coming out of the anesthesia (not a surprise...that was a major concern for me). Eventually, the doors swung open and it was our baby girl, still asleep, breathing, bundled up, and wearing an oxygen mask.

Kisses from Daddy.

My nerves were still not assuaged. I wanted to crawl onto the bed with her. Cradle her. Hold her to my chest and feel her breathing. None of this was possible. The bed was too small and she was still hooked up to a couple of machines. The closest I could come to achieving my hearts desire (at that moment) was to sit on the end of the skinny hospital bed. I gladly did just that. I rubbed her feet. Spoke to her. Touched her hair. Inspected her new boo-boo's and waited (...more waiting...). It felt like decades had passed before her long lashes started to flutter. She was finally waking up! It was over! We made if over this hurdle! Now we do some more waiting...

Rae (post-op) and Xavier watching Mickey Mouse Clubhouse.
I dont' think he was thrilled that she confiscated his TV.

*This is the fourth and final installment of "There and Back Again." Click: One, Two, or Three to read the previous posts or to see the incision from her muscle biopsy click here. Even though we are still waiting to for the biopsy results, I feel that this is the best conclusion to our trip to Atlanta. The results will be their own story for a later time. Thank you for taking the time to read about our journey.

There and Back Again: The Clouds Burst

We had an entire day between our appointment with Dr. Shoffner and the muscle biopsy...we did absolutely nothing! I think I even took a nap! We played with my cousin's boxer pups (Rae was repulsed by their incessant licking), watched some TV, and gathered our overnight bags for our stay at my brother's house that evening.

Chloe

Rex

The looming fog was finally beginning to lift and I was starting to feel a bit better. Until, I received a phone call from the surgical center with some unexpected news (honestly, I really should have expected this). The conversation sounded a little like this...

Surgical Center (SC): We wanted to confirm Rae's procedure time is scheduled for 9am and we would like her here by 7:30.

Me: Okay, we will be there. Thank you.

SC: We checked with your insurance and you will need to pay $250 when you check in.

Me: Excuse me? I've already paid a co-pay before we left (a complete misunderstanding apparently that was for the surgeon). Also, why are you waiting till the day before to tell us this information (yes, I know there are co-pays, but up until this point they were all paid in advance...or so I thought). We aren't prepared for this additional expense and can't pay it (I was being very honest) because we already budgeted for this trip and that wasn't in the equation.

SC: Well, it's $200 for the center and $50 for the anesthesiologist.

Me: I'm sorry, we weren't expecting this and we don't have it.

SC: The anesthesiologist is going to want his money (she seriously said this).

Me: The anesthesiologist can blow his nose with my $50 co-pay (yes, I seriously said this) when compared to the check our insurance will be sending him. So, I don't really CARE what he wants. We don't have it! (at this point I am more than perturbed and being completely defiant)

SC: Do you think you can pay a portion?

Me: Maybe

SC: Let me speak with someone in financial...

...holding...

SC: Would you be able to pay $100? $50 to us and $50 to the anesthesiologist (guess he's gonna get his after all).

Me: I think we can swing that. Thank you. Goodbye.

That is the Cliffsnote version of the conversation, but you get the gist. My Aunt and Husband were gobsmacked and when I hung up they laughed. A year ago, I would not have been so brazen in my refusal to pay our co-pays.

When this Hypotonic journey began, we made every effort to pay every medical co-pay...EVERY single one...at the time they were due. $50 here $50 there wasn't too bad, but once it turned into $300 here $300 there...well...it broke us. I once asked if I could be billed for Rae's EEG and the lady at the counter gave me the stink eye and smugly told me "No!" I later found out that was a lie. Neither of us fully understood the road we just started traveling down and naively thought, "This won't last forever...it'll stop soon and everything will be fine." NOPE! Not the case at all.

Now, I have no shame. I honestly tell the doctors offices that I am not able to pay them. I make arrangements when I can or make partial payments if we are able, but we have to pay our mortgage, our electric bill, our insurance, and buy food. Yes, we afford ourselves three luxuries...internet, satellite (we're under contract), and a weekly Taco Bell run (that started when I was pregnant), but we need to have a little something for ourselves. I cut expenses where I can, work the weekly sales, clip coupons, and even purged our home of un-used goods (read as: I sold stuff). Now I operate on a completely different mind set... Make, Reuse, or Make Do!

I no longer cast my eyes down and sheepishly ask if we can delay a payment or make arrangements. In fact, when I check in for an appointment it is usually the second thing I ask (depending on the co-pay amount). We are not beggers. We do not live high-on-the-hog (I got excited being gifted socks at Christmas). We are not trying to skip out on our bills; we just have to juggle them around and pay the priorities first. So far, no one has denied Rae medical care because of it, so until they do, I'm going to keep telling them I can't. It will turn around at some point...maybe...we'll cross that bridge when we get there.

*Yes, we have looked into medicaid, med-waiver, Children's Medical Services (CMS), SSI Disability, etc...guess what...they are income based and we don't qualify. That's the whip cream on the sundae. The cherry is that we still have no idea the total cost of our trip to Atlanta because they haven't finished the testing and therefore haven't billed our insurance yet. Eventually, that bill will land in our mailbox...

**Originally "There and Back Again" was only going to be three parts, but this one incident deserved to be on its own.

There and Back Again: A Warm Welcome

Rae & Xavier

When we arrived to my Aunt Sue's home we were greeted with warm embraces and homemade soup (there's nothing like the loving embrace of family during stressful times...soup's not too bad either). I was still stumbling through the mental fog that drifted in just days before we left for Atlanta and my distracted conversation/listening was forgiven (they all knew my mind was elsewhere). Rae was entertained by her cousin Xavier and he was thrilled to have a "captive" audience. After dinner and some catching up I passed out (sitting up) on the couch and apparently kept assuring them I wasn't asleep (I talk in my sleep from time to time). It took a little convincing, but I finally went to bed.

In the morning, we fell into our usual routine...wake up, give Rae her medicine and a bottle, change her diaper, turn on Curious George, and make breakfast. Nothing outside of the realm of normal. Once that was completed we readied ourselves for our first (and only) visit with Dr. Shoffner. Armed with plenty of diapers, snacks & bottles, toys, Rae's iPad, the Big Book of Boo Boo's, and Aunt Sue's Garmin we boldly ventured out into the wilds of Atlanta.

*Tangent Warning*

I HATE Garmin's! (actually all GPS systems) I know there are many of you out there that swear by them, but I do not! It drives me bonkers having some disembodied voice barking directions, sometimes way before you need them, out of thin air. I also find them to be confusing and the dang thing had us so twisted around that we actually circled Dr. Shoffner's office before it told us to turn onto the correct street! Not to mention that the driver is constantly checking the Garmin to make sure they are in the proper lane which means they are not watching the road! Just give me an Atlas and I'm good to go.

I HATE GARMINS!!! 

*Tangent Over*

Colorful glass artwork on 1st floor.

Upon our arrival at Dr. Shoffner's office, we were greeted by name at the front desk (guess they don't get many patients on a daily basis). We waited no more than 3 minutes before Dr. Shoffner welcomed us and we followed him back to the exam room. I felt horribly intimidated to be in this man's office and know that his intelligence far exceeds my own (yes, I know he puts his pants on just like everyone else, but seriously...he is the leading expert in mitochondrial disease). I can only imagine that Dorothy felt the same way when she first met the Wizard. Once we became acquainted with each other my mind, almost instantly, went blank. This is not a new phenomenon. In fact, it happens quite often and usually whenever I am not alone at a doctor's appointment. My mind becomes fixated with some small detail: a random test result, Rae being a busy body, or the doctor's appearance. In this case it was all of the above.

Dr. Shoffner was pleasant and unassuming. I half expected him to be wearing a lab coat, but alas I was disappointed. He was wearing exquisite leather ankle boots, slim black corduroy pants, a fitted black blazer (not a suit coat), a purple collared shirt with coordinating tie, and a black sweater...with holes (Huh? Holes? Really?). Yup...holes...intentional holes, with finished edges, placed randomly around the sweater. Obviously, this sweater was not something one would find at a typical department store. I had to suppress a giggle (or two...I get the urge to giggle at the most inappropriate times). The rest of my thoughts I am keeping to myself for fear of coming across even more ridiculous (I promise I do take all of this very seriously). Once I managed to push this humorous observation to the back of my mind I forced myself to pay attention (as best as I could...thank God Jacob was there).

Dr. John Shoffner
Photo Credit:
CLP: Clinical Lab Products

He went over all the previous testing (ruling out any potential significance of the gene mutation previously discovered by Baylor)...<sigh of relief>... Did a quick exam of Rae. Made a few observations. Explained what he was going to do and how long it would take for results to be sent (8 weeks). He offered us reassurance in his lab & personnel's qualifications as well as his own credentials. He was confident (they all are) and reassured us that he would do his best to find an answer (they all do). He was also very patient, soft spoken, and not at all pretentious. I was worried he would be and was very pleased to discover otherwise.

Then as we were gathering our things and preparing to leave he mentioned he looked forward to seeing us all again (wait a sec...did I hear that correctly...he wants to see us AGAIN...we were told he doesn't do follow-ups). Even though he said this in a normal tone the words loudly reverberated off the tiny exam room walls. What peaked his interest enough to want to see her again? Guess we'll have to wait 8 weeks to find out (gotta love waiting).

Day two of our journey was coming to a close...two more days to go before we were able to seek sanctuary within the walls of our home, patiently (maybe not so much) and nervously waiting for the results.