We reached a couple of really big and exciting milestones with Felix in the last few months. What an exciting time we’re living!
No More Central Line!
This was a biggie. Felix has had a central line in his chest since he was only two months old, and was on continuous IV for the first fourteen months of his life. The central line stayed in for one more blood draw, and then it took a while to organize the surgery.
Last month, at the age of seventeen months, he finally had the line removed. It had been a part of his body for almost his entire life. It feels amazing to be able to see his whole chest. (It was always covered in a big dressing. His right nipple hadn’t seen the light of day since he was a newborn.)
No more worries about the line getting yanked; no more worries about getting a fatal line infection; no more stressful weekly dressing changes. (Just imagine holding down a screaming toddler, peeling a big bandage off his chest, sterilizing the whole area, and then replacing the bandage, all while trying to maintain a completely sterile environment and making sure the line doesn’t get yanked out of his chest. Every week of his life.)
It felt so wonderful to get rid of all the medical supplies related to the central line. Get out of our house!
Hooray! Our boy is 100% cordless!
(The one downside, of course, is taking blood. He now has to get all blood taken the regular way — via needles in his skin. His last blood draw took three pokes and three adults holding him down. It’s heartbreaking, but honestly, nothing compared to a lot of the suffering he’s endured. I’ll take that over shoving a tube down his nose any day.)
No more Antibiotics!
Felix has been on antibiotics since his diagnosis at two weeks old, to protect him from infection in the absence of a working immune system. His cell counts are finally high enough that his doctors felt comfortable taking him off of them.
He’s down to only one med now — just an oral antiviral, just to make absolute sure his CMV doesn’t return. (It’s probably unnecessary but our doctors don’t want to take any chances, since he’s the only child in the trial with CMV). I cannot wait for the day we can take him off of that one, too!
And here’s the best, most exciting milestone of all:
An End to Isolation!
Felix is finally allowed to do just about anything. We can take him out to friends’ houses, take him into restaurants, take him to the grocery store, take him to the zoo, etc.
IT’S SO INCREDIBLE TO SEE FELIX OUT IN THE WORLD!!
I get a thrill every time I see him laying out on the grass, looking up at the trees swaying in the wind. It fills my heart with joy to see him giggle at the sight of other kids playing in the same room as him.
At long last, Felix finally has the rich learning environment he deserves. He gets to see people of all ages talking to one another, gets to crawl around on grass and tear apart flowers with his fingers. He gets to feel different ambient temperatures and smell different aromas and move around on different textures. He can play freely in water and sink his hands into containers of dry rice and beans. He’s seen dogs and chickens and cows.
It never gets old. Just one year ago he’d never seen a person’s face uncovered and wasn’t even allowed to see his sister. He’d only seen two rooms in his life: the hospital room in which he’d spent his first five months, and then our living room, which was scrupulously cleaned and sanitized every day.
We still have to be a little careful — he won’t be going to the church nursery or Early Years center any time soon. We’re supposed to avoid big crowds and wash everyone’s hands regularly when we’re out. But we’re pretty close to normal life now, and I hope I never take it for granted.
Oh, and there was one more milestone I almost forgot, because it was so unpleasant:
Beating His First Big Virus
Our whole family (and extended family) got hit with a nasty norovirus. We were all vomiting and experiencing severe “digestive distress” (if you catch my drift) for weeks.
Felix got it too. And he beat it.
It took him longer, of course. He was sick for almost three weeks. I pretty much held him through the whole thing. He didn’t eat a bite of solid food the entire time, and I think he lost some weight.
BUT HE DID IT. He has enough of an immune system that he was able to overcome it.
A year ago, he would have died. This year, it just meant a really sucky couple of weeks.
We are so grateful to have our boy.