Tuesday, May 31, 2011

Memorial Day Comparison Pics

We ventured about 6 hours north this weekend for our annual Memorial Day get-together with some dear friends we have known for years and years. Brought together by the same faith, we all quickly became friends while still young teens...long before any of us married. We would gather at various church meetings during those years, traveling to and fro and making sure that we would see each other at those same meetings. Our friendships grew in love through the years as we saw one another through fun times and heartache, marriage and children, moves and job changes. It is a life-long friendship glued together in God's love...one that I pray our own children will experience on their own with those of like faith as they grow older.

So while I have many memories of our annual gathering stored away in pictures and experiences that I will showcase soon, I wanted to start with some comparison pictures to show the growth our kids have experienced over the course of the past year. I always love looking at pictures like this. For reference, their oldest son is 6 months older than Emma and the youngest is 9 months younger than Nate.
More to come later...

Wednesday, May 25, 2011

Singing and Signing: PreK finale

Monday, May 23, 2011

Pre-K Class of 2011

My baby girl graduated today...from preschool, that is. All that means is that she is totally ready for her own room to decorate with posters of cutie patooties, an allowance that she will never fully deserve because her room will always be a pig's sty, and the car keys so she can run out to the football game to cheer on her best buds. Kids grow up quickly these days.The comforting thing is that we have informed her that she must continue to share the same room as her sister for at least a few years longer, she thinks that 2 nickels are worth more than a quarter, and we only have a big ole' nasty mini van and a truck that I am fairly certain that her father would not let her take out ever...ever ever with a cherry on top. So, it looks like her growing up will have to carry on for at least a little while longer.
The Pre-K graduation was extremely adorable, though. They all just looked...so...old. And big. And definitely not the little babies that we seemed to just birth a few months ago. However, it will wake us up to reality that they still are itty-bitty on those first few days of kindergarten when the entire school completely towers over the newbies that carry backpacks that are 4 sizes too big for them and still aren't able to pronounce their R's correctly. But today...right now...they are so stinkin' old.

Wednesday, May 18, 2011

Wordless Wednesday: Sibling love

Monday, May 16, 2011

A fairytale

Once upon a time in a humid land encompassed with luscious greens, blues, and reptiles, there lived two fair maidens. Sisters by birth, enemies by will, and best friends by the encouragement of their parents, these two dear souls were made to befriend one another quite regularly due to their mother's deafening insistence of "friends will come and go, but family is here to stay...so you will LOVE your sister!!"
One spring day, during an unusual weekend whereby the parental guidances hereby declared a subsidy in electronic attachments that encompass so much of the world of their heirs, the maidens were summoned to spend the day outdoors. However, as the morning progressed, a large ominous cloud shadowed the land, eventually drenching the fair maidens with copious amounts of water droplets. (Or in today's time, it was raining cats and rats and ferrets and hippos...for most of the day.)
Although the days activities be halted by the perilous weather activity, it did not spoil their appetites for adventure. The fair maidens used a large box and turned it into a privy...an outhouse, of sorts...or in today's language, a porta-potty. It was equipped with a real bonified plastic potty, along with a door for utter and complete privacy.
However, the fun was quickly squelched once both maidens had made use of the privy and were once again in need of some entertainment. The father of the house, while making use of the extra time, decided to clean the compartment attached to the castle that usually housed the family vehicular device (this is sometimes called a garage). In doing so, he was delighted to find some used spray paint cans and additional liquid paint cans, to which he entrusted the contents to be awarded to his young maidens.
The maidens did what all maidens do...they made a royal mess. They first learned the art of graffiti, as they started to decorate their porta-potty with various lovely details. Once they started to lose brain cells from the fumes of the aerosol cans, they were encouraged to move to the large gallon buckets filled with copious amounts of light green paint for their liking. What the layman parents did not fully expect was the fact that their fair maidens were not necessarily born to be clean painters, thus resulting in a blasted mess of the compartment attached to the castle (otherwise known as the garage). Although the porta-potty, adorned with cutesy paraphernalia and adorned with a noxious fume that will embark light headedness to any Duke in the land, was a beautiful masterpiece that shall make any creeply crawly thingamajigger proud if they shall find this bit of gold buried in the dump.
Amidst the rain, thunder, paint, and mess (oh good night, was there a mess!), there was much laughter among the maidens fair. Oh my, was there laughter! And hence forevermore, there shall be memories that embark the minds of these dear sisters of this day...of the box, of the porta-potty adventures, and of the painting fiasco. There shall be memories. And there shall hence and forevermore be memories encompassing the minds of the fair maidens' parents as they cleaned the paint, threw away the clothes, and washed out the tub of the filth and grime and dirt of the day's events, erasing the evidence of the adventure. But never the memories...for memories shall last a lifetime.

Friday, May 13, 2011


Since our neighborhood is one of the only ones in this area that doesn't provide a pool for its residents (or really anything other than algae covered retention ponds), we buy a slip-n-slide each year to keep the kiddos cool during these long, hot summer months. For what its worth, Florida summers begin on April 1st and end a week or two before Thanksgiving. Its one of the things I both like and dislike about living in the swamp. Abby became friends with the elementary school companion named Streptococcus this week (nicknamed: strep throat), along with a half dozen of her class mates and/or their siblings. Its obviously going around. The nurse practitioner and I joked that we were actually relieved that she had strep (rather than a dreaded fever virus that always seems to do a number on Nate's health) because A) Nate and Emma don't seem to get strep when Abby does, for some weirdly wonderful reason (like when she gets croup and no one else does) and B) it only takes a few hours after starting antibiotics before they start feeling better, but they are still banned from school for about 48 hours, which means......FREE TIME!!!!! This time of year is always tough to stay on task for the kids, and for the parents. We get bogged down by the routine of school and long for those carefree summer days of sleeping late and living at a slower pace. Abby's last day isn't until June 7th, give or take a few days because I don't want to actually get up and look at the calendar to make sure that's correct. That's still a while away for parents who seem to have a bad case of "schoolitis". The 2 day reprieve from our normal daily routine could not have come at a better time.Little Miss felt pretty puny the day she came down with the fever and sore throat, but by the time she has 2 doses of the med in her, her fever came down quite perfectly with motrin and she felt great! So, I broke every rule in the book regarding rest and relaxation and chicken noodles and wet washcloths on the forehead when a child is sick and decided to implement a new remedy...slip-n-slide time. The kids really did have a great time, and the change of pace in our daily life for those 2 short days was enough to get us through the remaining school year and longing for those nice, slow summer days that are just around the corner.

Monday, May 9, 2011


Dirty fingernails, grass-stained knees, dried boogies left in all the wrong places. Peanut butter and jelly residue encircling mouths full of teeth that haven't been brushed today, that one spot of hair that seems to always stick in the opposite direction of the others, rosy cheeks and scents of sweat engulfing the senses with each swift kiss as they bounce in from playing. This is motherhood.
Squishing spiders that scurry across the floor, showing intense bravery by letting a caterpillar crawl all the way up your arm, teaching how to catch a lizard with its tail still intact, and carrying clear plastic cups to the retention areas to help fish for tadpoles. Holding your breath when they climb too high in the tree, swinging them until your arm is so sore, and being armed with antibacterial cream, a character band-aid, and a warm hug when they fall. This is motherhood.
Scooting over to allow a little more room for the middle of the night bed guest, reading the same story for the gazillionth time, allowing play-doh when you secretly hate it so very much, and velcroing the backs of princess dresses and superman costumes. Making green eggs and ham, buying copious amounts of Capri-Suns, calling salmon patties "Crabby Patties" and watching every single one of them suddenly gobble them up and ask for more. This is motherhood.Toting folding chairs to soccer games, paying monthly ballet dues, making last minute runs to the store for snack day at school. Listening to the mono-toned struggle of a child learning to read, making math fact flash cards, filling the calendar until the white spaces are few and far between. This is motherhood.Joining in on a water gun fight, sacrificing the lawn for blow-up pools and slip-n-slides, letting them win every once in a while during the race to the mailbox. After dinner walks to the park, making sure that there is plenty of bug spray and sunscreen, trying so hard not to nag about the shoes and socks that end up everywhere besides where they need to go. This is motherhood.
Laughing at their awful knock-knock jokes, being amazed when they actually start to understand real humor and perform perfectly, smiling inside and out when friends call their name from across the room at different functions. Holding them close as they sob into your chest during the sad parts of the movie, teaching them how to overcome the hard times of friendships, and showing them how to love others, even when it's hard to do so. This is motherhood.Administering several meds throughout the day, making sure there are enough supplies to last the week, spending countless hours on the phone managing care. Rocking them when they don't feel good, singing songs while slowly stroking the hair away from their faces, wrapping your arms around their small bodies and trying desperately to memorize that feeling right then. Praying and crying and worrying and fretting and praying and praying and praying. This is motherhood.
It is a role that will be ever changing as the children grow older, yet the root will always lie in the love and duty God has instilled in us to care for His children while they are on this earth. It is a heavy load, yet also one of the most rewarding at times. And although there are moments in the young years of our children when we want to hide and pretend not to hear the name "Mama" called out for the 68th time that day, we must remember that their voices will not be heard as much as they grow through those tough adolescent years...and then one day, before we can even blink, we will walk into an empty room that once inhabited those precious giggles and requests for one more drink of water or an extra kiss before bedtime and want so badly to be able to return that request once again.
These years will be over in the blink of an eye.

This is motherhood.

Thursday, May 5, 2011

The Gravitron

One of the hard things about raising a kiddo with a complex multi-systemic medical condition is that the appts and tests and procedures seem to be almost constant at times. We have had times where we will go 3 weeks or so without an appt, but we are still dealing with insurance claims, our home health company, and prescription refills on a regular basis. And we also go through periods that seemingly last for months at a time where we have continuous appts or procedures. I have found that after a while, those weeks wear on our anxiety levels due in part to the heavy load we carry in trying to keep everything moving smoothly.I was asked yesterday "Who manages Nathan's lab work?"...to which I replied "Well, I do." Numerous of our doctors order labs for various reasons at different times, and it has really been up to me to get the results and consult the appropriate doctor with whatever labs may be troublesome. Honestly, that doesn't bother me. But I have realized that my roll as Nate's mother is also to be the messenger for everyone else. I am the supplier of information...not only info regarding Nathan's symptoms and our concerns but also info given to us from his numerous other doctors and test results along the way.

This is where my anxiety gets the best of me from time to time...in playing back the conversations in my mind. I am constantly wondering if I was able to portray everything completely accurately. In relaying another doctor's information, was it completely correct? Did I understand what had been explained to me and did I relay it to his other doctors accurately? The clinic notes that doctors write to one another are always helpful in the big picture...but that is another tough thing when you essentially have 2 sets of specialists in 2 different states. The parent is once again expected to be the primary source of information. So when we go to numerous specialists in a short amount of time, I always get a bit anxious as I try to keep all of the info in my brain and try so hard to perfectly spew it back out to each doctor.

Its just all part of it, but it does get quite stressful at times.
Anyway, we had a really great appointment with our new pulmonologist yesterday. We loved our old pulmo, but he moved away last summer. We had met our new pulmo in the hospital at one point, but this was our full visit with her, and by "full visit", I mean that we talked for over an hour. Thankfully, I believe we were the last appt of the day for her, since the entire office and most of the staff had already left before we did. Our old pulmo had given her a very thorough and extensive portrayal of Nate's condition and history before he left, and I was literally amazed at how well she knew him before taking him on as a patient. And as much as I loved our last pulmonologist, I dare say that I love this one as much or even more. She is such a delight and so smart, and she is also the mother of 3 young kiddos who are exactly apart in age as my three.

I also love the fact that she should be here for a very long time (she has one year left of her fellowship but should be hired by the dept afterward) and wants to create a continuity of care clinic, which is something that our peds pulmo team doesn't currently do...which is why Nate has always seen the fellow, in that they want him to have continuity of care with one doctor in the specialty. So, I am so excited about this great new doctor...her zeal, her desire, and her caring nature are all so refreshing.

With this appt, we added yet another test to the upcoming mix...another sleep study to see how he is doing now since it has been over a year since his last one. She also changed up some dosages of his meds, and we have a good plan to try now when he is having increased breathing difficulty...though I still think a lot of his increased breathing issues are metabolic and muscle weakness in nature and not necessarily lung-related, we at least have something to try to see if it works.
In other upcoming schtuff, Nate has an ABR (auditory brainstem response) test scheduled in a couple of weeks to check his auditory function and hearing sensitivity. And he has our annual visit with our home immunologist coming up as well. Add in the upcoming endoscopy and tube placement that still needs to be scheduled...and well, this is when I look at everything on the calendar and just want to go rest on a beach with the sole sound of waves crashing gently against the shore in an attempt to drown out all things medical in my brain.

I was delighted to get an email this morning from Nathan's mito doc stating that she had discussed a needle biopsy for Nate with another specialist, and he assured her that it is more traumatic and less successful than an open biopsy. So her plans to do a liver or punch biopsy on Nathan at our return visit in October were put on hold. I am quite relieved at this change of plans. The additional info we were concerned about would be nice, but it is always a hard decision to put him through procedures, especially if they may not change how we treat him anyway. So, we won't know for sure if he has a mtDNA depletion or not...maybe not knowing is the best thing for now.

Many others have equated the roll of having a child with this disease as a roller coaster ride with constant ups and downs. I honestly think it is more of a Gravitron. You go through times where you are spinning at high rates, merely being plastered to the wall while you are fully absorbed in the spin. When things settle down and the spinning starts to slow, you can once again put your feet on the ground and walk around with sturdiness and confidence...until the next time the stress of the spinning starts back up.
I am looking forward to when this spinning cycle stops for a while.

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