So, we’re still waiting for Drew’s braces. We should get them back any moment now. Everytime a FedEx truck is within sight, I clasp my hands together in hope and excitement and then my grin melts in defeat as it just continues down the road.
It’s been about a month now without braces. Aside from the inconvenience of having to carry Drew everywhere and his dissatisfaction with not being as independent and having to sit out certain activities, it can actually be detrimental to his progress. At the completion of Drew’s major set of surgeries including the fixators, Dr. Paley put the fear of God into me about how imperative that Drew wear his braces 24/7 as he will lose extension and the rotation may return without the proper bracing to keep his legs aligned.
I saw this happen the first time he went without leg braces for a lengthy period of time in the summer of 2014. His legs could straighten less and less and he even had to have another surgery to correct some rotation. Before this instance of no-braces, Drew’s legs could be locked into a completely straight position, but since that time of not wearing them, his legs wouldn’t straighten without pain and discomfort. He used to walk with his legs perfectly straight. Now, when he walks, his legs are bent at such an angle that it appears he’s fixing to sit down in a chair. At this point, I just hope he remembers how to walk he hasn’t walked in so long!
Moving along to my next topic on the forefront of my mind to which I can’t think of a natural transition…
Let me try to paint you a picture of what its like to be the mother of a “heart kid”, a kid who has congenital heart defects for which they’ve undergone surgery or are closely monitored by specialists. All caring mothers worry about their children, but when a child suffers from heart defects, it enhances the worry. It’s well-known that the heart is a critical organ that keeps a child alive and when its flawed, it’s impossible to go a single minute wondering if this will be the minute that things go horribly awry. He’s running really fast and his heart must be racing, is that dangerous? He has a fever, could it be fluid on the heart? He’s not feeling well, could it be his heart? He’s sweating an awful lot, is it hot in here or is his heart working too hard? He has a dentist appointment today including a teeth cleaning, I sure hope the antibiotic he has to take to prevent a heart infection work! (Seriously. Drew has to take antibiotics before seeing a dentist because bacteria that lives on the teeth may inadvertently enter his blood stream via a small scrape made by the dental equipment and travel to his heart which would be very bad news.)
Just try to imagine the internal war we battle. Every instance of a stranger’s tragedy when their child’s heart suddenly failed during football practice run through our mind constantly and we know that it could be us one day.
Daddy probably isn’t as obsessively worried as I am, not that he doesn’t care, but I, for one, have suffered numerous infant and pregnancy losses so I’m naturally inclined to worry about my most loved ones and two, I’m a virgo and virgos tend to over-analyze and excessively worry.
So, Drew has been having excessive bowel movements for the last month. I’m talking, four to five times a day. Three nights in a row, he’s even woken in the middle of the night to do number two. It’s beyond ridiculous. He’s complained of a few stomach-ache which is abnormal for him. And a couple of times, it looked like his feet might have been pale, but am I just imagining it? Maybe they’ve always been that pale but I rarely see them because they’re in braces? Maybe it’s just the bathroom light? Maybe they’re fine and I’m just naturally worried about him because I love him so much?
I can admit that, when it comes to Drew’s health, I can worry about things too much so I try to talk myself off the cliff. I try not to be that hypochondriac-by-proxy mom who escalates every tiny symptom to his doctors. It never fails, I take him to see a doctor and everything is completely fine so then I feel stupid for making a big deal out of it. So, I’ll wait things out, monitor it, research online myself unless I see something truly worrisome. So, for now, I finally emailed a couple of Drew’s specialists at Vanderbilt to inquire if any of the medications he’s taking may cause this. Hopefully they’ll just say improve his diet or try probiotic (which I’m already going to try).
But, this change in his body does have me slightly worried. A common side effect of TAR is a milk allergy, which Drew never did suffer from, but I’ve been advised by experts that their gastrointestinal issues may change over time so I’m just hoping he’s not developing anything in that arena. He’s followed by enough specialists…I don’t look forward to adding one more.
And, although his blood disorder is very mild, almost non-existent, viruses and such can drop his platelet levels and cause a real concern. So far, he’s not showing any signs of that, so we’ll just cross our fingers that it stays that way.
Drew was just scheduled for his first surgery of 2016. In January, he’ll have a port surgically implanted which was requested by Dr. Paley to avoid delays in the consecutive surgeries which may occur with the difficulty of gaining IV access with short arms. Ports are common for TAR kids young in age as sometimes they require many, many transfusions for years, but luckily Drew’s blood disorder became stable much faster. It’s the one thing that Drew got the better-end of. So, Drew never had to have a port. Well, he’ll have a port now. For a little bit anyway.
And, I just booked our next trip to West Palm Beach for a follow-up visit with Dr. Paley in January. This time, only Daddy and Drew are going. I am staying behind with Holden. This will be the first Dr. Paley appointment I have ever missed. I decided not to go this time because it’s just so much hassle having to lug Holden around and he’s a very routine-centric kid so he’s difficult to contend with plus, even though Miracle Flights pays for the adult plane tickets, we are financially responsible for Holden’s ticket. It is just an x-ray and quick peek by Dr. Paley so nothing too monumentus and Daddy is more than qualified to relay answers to questions we’ll have. Plus, I decided to hang back to save Miracle Flights the effort and finances of booking one extra ticket.
During submitting the necessary paperwork, we learned that Nathan’s income puts us just above their eligible salary standards. They graciously agreed to cover us this one last time, but we’re likely not going to qualify for further trips funded by Miracle Flights, so I must take this opportunity to remind you about our Gofundme campaign to raise funds for travel as we have another trip to Florida in May in which we’ll have to stay for 2-4 or more weeks. Sure, it may sound as if we can afford the travel ourselves because of Nathan’s salary, but what they don’t take into consideration is that we are traveling to Florida two to three times a year AND we have to pay for a hotel each night AND a rental car AND a $250 copay for EACH surgery (he’s got four scheduled as of now…he may have even more). So, if you have extra change lying around, I hope you’ll think of Drew. And, if you don’t, then please at least visit my campaign and share it.