One tentative step into the unknown...

Cady started her Growth Hormone (GH) injections two weeks ago.. she gets a shot six nights a week, with Wednesdays off. So far she's had 12 of them. Since my last post, she's gained quite a perspective on receiving them.. she no longer cries, not even a whimper. She doesn't flinch, and will even remind you when it's time to give it. (Mom! It's 7:30!) Not only that, but she has given herself two of the injections. I want her to be independent with her care, she knows how to tube feed herself, and which meals to eat at what times, this is no different. With some verbal coaching, we've allowed her to perform the process, beginning to end. She does wonderfully. Cady has always just been the sort of person that does what you expect her to do. If you expect her to learn to walk, she will. If you expect her to learn to tube feed herself, she does. When we expected her to learn to give herself these injections, she didn't protest or complain. She simply did it. It's our way of life, it never dawns on her there is any other possibility.

She did, however, give me a big scare on the night of her birthday. We had been partying hearty, it was her Sweet 16, and we rented bouncy castles and blow up obstacle courses for the kids to enjoy.. And enjoy they did! For like four solid hours. For a child with reduced endurance, that's like going all day long. She was hot, sweaty, and behind on dinner by an hour when we finally got home. I quickly went to the fridge, administered the GH shot and set her dinner down in front of her. She took one sip of the smoothie I'd prepared, and ran off to the bathroom to vomit. When I went to the bathroom to see what was going on, she appeared to be having a seizure. She was clutching the toilet and bouncing one shoulder off the wall next to the toilet. I grabbed  her, wiped her face (she had tears and snot running down her face from the vomiting), and asked her what was wrong.. "I don't know.", she replied. I asked her how she felt; she said, "Dizzy."
Ahhh.. so I checked the website devoted to info on GH and found a statement about low blood sugar, but nothing on seizures. Well, now it started to make sense.. Hot, playing, sweaty, dizzy, late for dinner.. maybe low blood sugar. I tested her with a fingerstick and her sugar was 178.  WHAT??!!

Ok, high blood sugar. So, I grabbed the pamphlet insert that came with the GH pen. No info on low blood sugar mentioned, but detailed at length the probability of high blood sugars.. at least for the initial adjustment period. After that, blood sugars generally stay under 100 and HgbA1C is unaffected. Good to know. Now I just have to figure out how to stabilize her metabolism and not let the hyperglycemia spiral into ketoacidosis and the rest of the cascade that bodes so ominously for her. Oh, brother.

Cady's condition is a tenuous one. I wasn't kidding or exaggerating with the 'tightrope' analogy. I know more about metabolism, anabolism and catabolism than anyone should ever have to know. I have an unnatural and fairly comprehensive understanding of biochemistry (meaning I have never actually *studied* it, but am able to understand it and apply it anyway). And I know more about Cady's  metabolism than anyone on the planet. Period. It all rests on me. If I don't figure something out, it does not end well for her. (MacGuyver ain't got nuttin' on me, guys.)

So, I pull out my handy dandy diet tracker (I'm gonna put a plug in for Myfitnesspal.com here.. I used it to lose almost 50 pounds and keep it off.. it's wonderful!) to analyze Cady's diet and see if I could adjust it somehow to compensate for the GH causing the high blood sugars. Right away I see the flaws, and years of training in muscle building, nutrition and nursing have given me the insight on how to fix it (I hope... At least, how it works on normal people..)

So, I make the needed adjustments, and implement them. And right away, she straightens up, has more energy, no nausea, and.. HERE'S THE KICKER:  she wants to eat all the time! This is HUGE, people! She is a life long anorexic child with a feeding tube! And she WANTS to eat! I am so blown away by the immediate and gradiose results that I also fear it is an anomoly.. not to be trusted, and will probably not last..

But, here we are, at least five days in to the new diet, and she's still trucking right along! If this were something of a fluke and she wasn't going to handle it, she'd have decompensated by now.

I have nothing but thankfulness in my heart that she is doing so well with these changes.. There have been opposite results in the past, I very nearly lost her on other occasions. It's a scary dance.

And while I hear praises all around, aimed at me, over Cady's progress and stability, I don't feel they are deserved.  I've had mother after mother tell me, "You do so wonderfully with her, I could never figure out that complicated mess and keep her alive. I wouldn't be able to understand it."

The reason I don't deserve any of this praise is simple to me: It is a very complicated business. Metabolism is, for most people, an enigma. I have an in depth understanding of human metabolism, an intricate understanding of human biochemistry, and a detailed knowledge of the breakdown in Cady's presentation of Propionic Acidemia. And the only formal training I've ever had was an entry-level college chemistry class. It's not just UNnatural.. it's SUPERnatural. I am simply a vessel of this knowledge. I did not study to attain it, it was not through my own works that I received it (it wouldn't have done much good to go that route, there never was any time to do those things. I had to know  it, and I had to know it NOW.) And so, the product of this knowledge (Cady's good health) is not a product of my own works either.  To brag about this gift that God has given me so freely would be like bragging about being tall. Or blue eyed.  I didn't do anything special to attain it.. it's just the way God created me. God deserves the praise for this miracle child, not I. He has sustained her and kept her all the days of her life. He has snatched her from death when I was powerless to do anything but weep. He has allowed me to be a tool in her building, and that is something I count as a great blessing.  Oh, what a great blessing.