April 3, 2013

April 3, 2013

Have you ever noticed that sometimes life goes at a leisurely pace, dilly-dallying along, and then all of the sudden, WHAM, you're hit with a thousand happenings all at once? I am in a "wham" phase at the moment. So get comfortable, I have a few things to share with you! You may remember the confusing scenario in which Dr. Cohen, the pediatric mitochondrial disease neurologist in Akron, turned me away due to my age, suggesting that I return to my former geneticist, Dr. Moran, at Cleveland Clinic. However, when we spoke with Dr. Moran, she believed that I really needed to be seen by Dr. Cohen. Well, she was able to attain for me a one-time appointment on a consultation basis. I am so very thankful that Dr. Moran made this effort to help me. Such doctors are truly a blessing. While we still haven't solved the dilemma of finding a treating mito physician for me, at least we can get Dr. Cohen's advice and opinions. We don't have a set date for my appointment in Akron as of yet, but it should be within the next few months. I am hoping to schedule an appointment with the palliative care team there as well. Tomorrow my parents and I will be driving to Kansas City for an appointment with my infectious disease specialist, Dr. Brewer. It has been about a year since I last saw him. He has been treating some of his patients for toxic mold exposure with antifungal medications. Such treatment can be hard on the liver, and this effect can be particularly harmful to a patient with HLH. But if he has a proposition for a safe treatment, it will certainly be a consideration. My appointments with Dr. Brewer are typically about two hours in length, a far cry from the 15 minute consults provided by many doctors. And what's more, he continues to think of his patients long after he leaves the exam room. Sometimes he will learn of some phenomenon of one patient, and he will send an email to my family, applying this new knowledge to my own case. All doctors should be so genuinely caring, but Dr. Brewer is a rarity. I am so thankful to have him as a part of my medical team! As much as traveling exhausts me, trips to Kansas City yield lovely shopping opportunities for me! I haven't been to a mall in years; all of the lights, sounds, and smells leave me feeling awful in no time at all. But the Plaza in Kansas City is outdoors, so I can tolerate a bit of shopping. I usually come home with a candle or two! And now for my latest drama: My central line is broken. Again. It conked just a couple of days before Easter. It's odd because I have had a line break once before Christmas, once before Thanksgiving, and now, once before Easter. And two out of three times, the break occurred just before travel! It would seem that my central lines have been conspiring against me, the cantankerous things. Thankfully my line is still functional, so it can wait to be replaced until after my trip to Kansas City. But before this procedure there is so very much to be considered. There are multiple types of central venous catheters (CVCs). My first central access was a port, which only lasted a few months before my skin broke down at the site. Since then I have had only Powerlines, and I absolutely love them! They are smaller than other CVCs and don't need to be manipulated as much for dressing changes, which is a good thing for me since my line is always quite painful. Actually, I am rather nervous at the thought of having anything different. But since my Powerlines keep breaking I need to investigate my other options. And, of course, anesthesia is always a complicating matter for me due to my paralysis that often follows procedures. I have two favorite anesthesiologists at Children's Hospital, so we are planning to meet with one of them next week in attempts to develop the safest game plan ahead of time. We have already consulted with interventional radiology over the phone, and they have offered to bring an example of another CVC to my anesthesia appoint so that I can better determine whether or not I would be able to tolerate it. To some it may seem as if I am overanalyzing. But I am really trying to go into this procedure more thoroughly prepared than in the past, hoping for a better outcome! A couple of years ago I was given my first pair of prosthetic contact lenses in order to help my extreme light sensitivity. In my bedroom I use a 15-watt lightbulb, but when I am in brighter lighting I have to wear big blue sunglasses and a baseball cap. Now, I am girly girl. I like to wear poofy dresses and shimmery makeup. So that hat and those blue glasses? They kind of hinder my style. I have been so very thankful to have my prosthetic lenses! They allow me to be outside without wearing the blue dork-fest on my face. But my lenses had begun to fade, which is to be expected after two years. So recently I went to the eye doctor to order a new pair, and they will be ready in another week or two. And this was a very exciting doctor's visit, as it was the first appointment to which I was accompanied by my most highly-esteemed service dog, Alice Eloise! People who have come to visit us at our house may find it hard to believe that my mischievous little Doodle who welcomed them so, er, enthusiastically can behave like a pristine example of a service dog, but let's just say her work life is quite different from her home life! She performed beautifully at my appointment, effortlessly charming the office staff with her big, expressive eyes and her waggly little tail. I only wish that the car ride went so well! Alice Eloise's car anxiety had been much improved, but for whatever reason she had a drool relapse that day. One 45-pound Double Doodle plus one 5'9" girl, both of whom are carsick, in the front seat of a Volkswagen Bug makes for quite a ride! Needless to say my service dog in training will not be tagging along to Kansas City just yet! She will have herself a merry little sleepover with cousin Lulu tomorrow night... But I will surely be missing my cuddle buddy! Last time you heard from me I was melodramatically lamenting the upcoming conclusion of fireplace season. Soon after, though, winter gave me a final hurrah to be dearly remembered! Exactly one week before Easter, we had the biggest snowstorm of my life thus far. All day long, anytime I looked out the window, there was a steady snowfall. There was even a bit of thunder and lightning! It was AWESOME! As long as my family and I have nowhere we need to be, I positively adore snow. And a full foot of snow was a delightful excuse to have a lazy day of hibernation, the perfect winter finale, indeed. 20130422-161156.jpg But it's amazing how quickly the evidence of a springtime snowstorm can disappear! Easter was a gloriously beautiful day, so I had the pleasure of taking a stroll with my big sister and our darling Doodles. And my wonderful daddy planted some roses in my garden. I can hardly wait to see them in bloom! And Mom and I watched "Mary Poppins", a mutual favorite of ours, perfect entertainment for a jolly 'oliday. Easter is such a joyful day! You know of my fixation with the Christmas season, but that miraculous holiday would lose its meaning if it weren't for the incredible gift of salvation won for us on Easter. I hope you had a lovely holiday, too! Now Alice Eloise and I are having a snuggle party, enjoying one of our new favorite movies, "Wreck-it Ralph". I am so glad Alice likes cartoons, too! We are, like, soooo compatible. I will be back before long to fill you in on the details of my trip and my upcoming central line placement. As always, I would greatly appreciate your prayers!

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