Driving to Birmingham every four weeks to hold him down for an IV hasn't been easy but it's kept him so much healthier than before, so it's definitely been worth it. We've made the best of it and have been so thankful that treatment is available and that we were able to get it.
We've been worried about him for a little while because he tires out so easily and we can see the infusion "wearing off" at the end of the month. He gets really pronounced dark circles under his eyes and doesn't want to do much at all. Our family, his teacher, and all his therapists can tell when it's time for his infusion.
We had a checkup with his immunologist a couple of months ago, and we told her what had been going on. We asked if his dose needed to be increased. He has grown an awful lot! (Nearly as tall as me and weighs 94 lbs. Whoa!) She explained to us that a clinical study was becoming available and thought it might be a good fit for Korban. Rather than getting his infusion once a month he would get a weekly treatment. Instead of having to get an IV, he would get a subcutaneous infusion. That means they would numb his skin with EMLA cream and he would have several small butterfly needles inserted under his skin on his belly and the medicine would go in that way. The weekly treatments will keep his levels higher and we shouldn't see such a slump at the end of the month. Also, Brad and I can get trained on this and start doing it AT HOME! So we met with the nurse heading up the trial and did a bunch of bloodwork and tests on Korban and a lot of paperwork these past 2 months. Thankfully Korban was accepted for the clinical trial!!!
His first subcutaneous treatment will be Friday. We go once a week for a month, which will be hard, but after that we should be able to start doing them at home and we will only have to check in at UAB every few months. We have worked closely with the nurse that is over this clinical trial for the past couple of months and are excited to get going.
We've talked to Korban about it and he seems to understand and be okay with the change. He's pretty excited about the "butterfly needles" as opposed to an IV. Although I have to say, he's done better with his IV the past few months than he's ever done!
So a couple of concerns/prayer requests:
1) Like I said, Korban seems to be ready for this and we've done our best to prepare him, but despite our best efforts we never know what his reaction to a certain situation will be until we are actually in it. The goal is for this to be LESS stressful for him, so please pray for a smooth transition.
2) If you had asked me 10 years ago if I thought I would ever be able to put a needle in somebody and give them any kind of medical treatment, my answer would've been a resounding "NO!" I mean, I am the one who fainted straight into the floor at my OB's office over a simple blood draw when I was pregnant with Korban. So very embarrassing! I haven't done very well with blood and related things in the past, but that was me before. I also didn't do well with frogs and lizards and such as that, but I sure have come a long way. I feel good about this, and I want to be able to help Korban We never know what we are strong enough to do until we actually need to do it, so I've learned not to say "I could never..." That being said, I am a bit nervous so please pray for calmness and steadiness for me and Brad both. He's typically very steadfast in such matters and I'm so grateful for that character trait in him! But he won't always be there when Korban needs it done so I need to be proficient in it. Please pray for steady nerves, steady hands, and NO FAINTING! I'm pretty sure I'm past that. I'm glad spring is coming though. I may need to go out and catch some frogs and lizards just to remind myself what a tough mama I've become. ;)