I am either eternally optimistic or I have the memory of a gnat. I had fully intended on blogging here every day when I first set this up.. You'd think after 16 years of living this life, I'd get a handle on how busy it is and gain some perspective.. But I continually underestimate how little time there is in any given day. Sheesh. Oh, well, as many will tell you, it's my habitual way of NOT seeing the in-the-box limitations that has brought my beautiful Cadence this far.. So, while I intend on updating everyone frequently, let me make a caveat and say in reality, it'll probably be hit and miss..
And today is a hit. Since my last post, things have been speeding along at a blur.. (Cue up Tesla's song "Changes")..
At Cady's last genetics visit, we discussed exploring her small stature.. Kids with PA tend to be small, and universally look younger than their stated age. At 15 1/2, Cady looks to be about 8 years old. I didn't think there was anything sinister about that, PA affects energy on a cellular level, and if you don't have the energy, you just don't grow.
At any rate, a bone-age study was ordered and as it turns out, at 15 yrs 6 months, Cady's bones actually revealed only a 12 year old. Wow! She has managed to gain four years of childhood, and because of that, her growth plates have not fused yet. Still, I didn't think much of it.. Further testing revealed she is not in or approaching puberty, but hormone levels are normal for a child. Next, we tested Growth Hormone. There was a four hour test, in which we mostly laid around the IV infusion room and watched t.v. Cady was given an infusion of Arginine and a Clonidine tablet to antagonize a GH response. Blood was drawn every half hour for four hours, resulting in 9 tubes of blood. I was certain, like the hormone levels before, that these would be normal as well.
Well, you can imagine my surprise, when a few weeks later, I received the results and they revealed deficiency. Things actually moved pretty quickly after that, we needed an MRI to prove this was not caused by a structural anomaly, and fortunately, WVU had an MRI of Cady's brain that was taken during a recent coma she'd endured. It was determined that she had a structurally normal pituitary, and we could proceed with GH injections.
Insurance companies are notorious for fighting GH treatment.. it's expensive and long-term. They really don't seem to care that it's important. That fight results in unnecessary delay, and we were up against a clock here.. According to Cady's bone age study, her bone age represented a 93% closure, which meant we have a 7% time window to get her to grow before her growth plates fuse. Fortunately, the pharmaceutical company that makes the GH that Cady is a candidate for has a whole section of experts that set up a system of early delivery and fight the insurance company for you, so that the child receives the appropriate treatment without delay.
We received our GH shipment in the mail on Tuesday and our home health teaching on Thursday, at which time, Cady received her first injection.
Because of all that Cady has been through with this disease, and the many unpleasant treatments she's endured because of it, she is very fearful of anything smacking of a medical treatment.. Put on some gloves, and she cringes. Uncap a needle, she melts into terrified sobs. It's heartbreaking.
Cady's GH is encased in a flex pen, like people who take insulin are using nowadays. She has an uncle that is diabetic, and she enjoys giving him his shot after dinner when the opportunity arises. At least she was familiar with the procedure, since it's the same as her uncle uses. We dialed up her dose, and gave her the injection. She cried and was nearly inconsolable, but as also true to her nature, she was very obedient and stayed perfectly still during the procedure. She understands that the treatment is necessary,and if she moves, we will likely have to repeat the injection, so she is able to keep still, which makes it all the more heartbreaking to watch.
Gladly, the crying stopped there. The following night when her injection was due, she took it like a champ. The injection itself really is painless, the needle so small it's like a hair. She just needed to get used to the idea of having it done every day for the fear to wear off. Thankfully it only took one time for her to determine it wasn't so bad after all.
Now we begin this new chapter. I'm not the type that fears change, I actually embrace it. It's a new territory, new things to explore, new experiences to have. I look forward now to her growth, something we've never known before. At four years old, Cady was still wearing 18 month sized clothes.. she could wear the same clothes for years and years, that's how subtle her growth has been. Now, at 16, she's still wearing the same child's size 12 in clothes and 13 in shoes that she's been wearing for at least half a decade. I am excited at the prospect of being able to complain about how often I have to buy her new clothes.. I can't wait to take her shopping so frequently that I may have to get a second job at Justice (her favorite store) just to get the discount.. Our (new) future is laid out in front of us undetermined.. and I'm very excited about it.
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