Now that Oliver is a little older and the doctors are satisfied that we have been properly restricting his diet, as well as his numbers trending downward, we have safely moved into only needing to head to Philadelphia a couple times per year. It’s both exciting and terrifying, like walking a tightrope without a net. Or maybe, with an invisible net that you know is there but do not have the comfort of seeing for the reassurance it provides.
Oliver’s last appointment was in early April and the day went swimmingly. Even though the visits are predictable, John and I both still get knots in our stomachs as the date approaches, and are on pins and needles the day of until we finally make it into that exam room. His team continues to be encouraged by his physical development and with his diet and our efforts as a family.
And then, of course, there is the blood draw. With age comes awareness so, as he gets older, we are never quite sure how he will react to the needle. But this kid of ours took it like a real champ this time around. (It helped that the phlebotomist this time was sooooo good; some people really have found their perfect calling!) He made his arm into a little muscle and watched the needle go in. And just as the needle was coming out and he was feeling the little sting and it seemed like he might cry, he caught sight of the Elmo band-aid and all was forgiven!
Maybe the universe caught wind of the fact that waiting 4-6 weeks after his appointment for his lab results is almost more than we can bear, his results only took one week this time around. Huzzah!
That’s his Gal-1-P. 7.88. Have you ever seen a number quite as beautiful? As I’ve mentioned before, we are aiming for below 7 (below 5 would be absolutely amazing) and at his last appointment, his number had crept up a little bit. We were anxious and a little discouraged to say the least. But this time, down down down it went.
We still know this number is not the be-all, end-all, but it has become this emblem. An emblem of all of our work — the reading, the research, the long talks, the tears, the fears, the anxiety, the explanations, the trips to the doctor, the endless food labels, the fundraising, the awareness-raising, and the second-guessing (and third-guessing, and fourth-guessing). So, when we see it heading in the right direction, it’s impossible not to feel like all of that *stuff* has been worth it. Of course, the opposite is true, too. When his number went the opposite direction last time, it was hard not to process that as a complete and utter failure on our parts. But if I’ve learned nothing else over the past year and a half, it is not to dwell on the negative. No good will come of it.
Knowing there are no guarantees or even predicting how things will continue to go, we will just be over here basking in the glow of 7.88 until he goes back to CHOP in October.