It’s official. The word has come down from chest, Gavin no longer needs supplementary oxygen, at night or any other time! We did the pulse oximetry test last week in hospital and he did extremely well, sticking at about 99 for most of the night, so we knew basically that he no longer needs the O2, but it was great to be cleared definitively.

This means we can finally pack up all the tanks, tubes and machines that are cluttering up our narrow little house and send them back to the pain-in-the-ass supplier that we had to deal with for so many weeks. The noisy concentrator that has whirred like a generator in our bedroom since January 11 will now be silenced. Bean is sleeping without some sort of oxygen apparatus on his face for the first time since November. This is a big day!

According to our medical friends, a toddler Gavin’s size needs about 1,000 calories a day. He also needs more than a litre of fluid a day to keep him hydrated and protect his stressed-out kidneys. For the last many weeks, Gavin has refused to eat a single thing, and has been maintained solely on his formula feeds. He has kept his weight up and still been full of energy, but has shown absolutely no interest in putting anything in his mouth.

Here are some recent sayings from the world o’ Bean:

Quick! I have to send an email! (Dashes to computer and starts jabbing keys manically, translated from Mum’s, “I just have to send this email quickly.)

There’s not anything you can do! (You can’t make me.)

I won’t take my hands away from my nose. I won’t. (Held hands over nose with iron will during NG tube insertion.)

I have to go to my -pointment now.

Hi! I’m Evelin and this is my Swiffer. (He is very taken with Evelin, who cleans for us sometimes. Okay, weekly. Gav brandishes the “Fiffuh” con gusto.)

No! Don’t carry me upstairs!! (Bedtime)

Here’s my luggage. I’m going to Florida now on the plane.

I want to stay here forever. (This is said wherever he happens to be and having fun. We can never leave anywhere within 20 minutes.)

I have been feeling a certain amount of irritation with the lack of hands-on rehab that Gavin has received, both inpatient and out. After his first surgery, we never seemed to be able to connect with his therapists, as it was always naptime or there was some emergency going on, or Gavin was feeling terribly unwell during chemo. I knew then, and recognize now, that he was not one of the patients with the direst need, but at the same time, he needs help and guidance too.

Alright, I suffered a bit of a setback with that latest bit of genetic news. But I think I’ve managed to process it a bit and get on with my life.

Most of the people in the world will never be genetically tested, and so would never know what secrets lie within. I’m saying no to angry, and I choose to be thankful for what the genetic lottery had given me. I have to be thankful for the body that houses me, with four strong limbs and twenty digits. A body that has been strong and able enough to play sports (badly), hike across mountain tops and dive into deep oceans. I’m thankful for these eyes that have read thousands of books, this voice that can shout, whisper and lift up in song. I’m thankful for all of these organs which have quietly and painlessly done their work and got me through day after day of 35 years of life. (Liver, I do apologize to you, though, you have had a rough go!) I’m thankful that when I wanted a baby I got pregnant instantly and bore my baby to term with only a few hiccups on the road. I apologize to my body for ever nit-picking about its shortcomings. I take it all back.

The word mutation is so ugly, isn’t it? And yet, we all have, existing within our cells, genes that have some sort of mutation. Maybe these changes only manifest themselves in things that are relatively benign, like having colour blindness or an exceptionally large nose. In other cases, changes in genes can be a little more serious, and people are born with chromosomal disorders, or extra digits, or club feet.

After the drama of the wee hours of Saturday, I was hoping for a quiet and uneventful weekend, and that’s what I got. Although Bean was hot enough to be cooking at one point, he remained well, playful and chatty. And demanding.

The fever came down Saturday morning and never returned. All blood cultures and swabs of various body parts came back negative. He still has a little, funny-sounding cough and a bit of nose action going on, but his chest x-ray was pretty clear. Phew. We also kept him on an oxygen sat monitor for the most part and were thrilled to see his sats staying at 99 or 100 the whole time without the prongs on! So. Happy. To. Be. Off. The. Oxygen. (during the day)

We managed to stay out for one whole month, but last night I found myself speeding along dark city streets at four in the morning and taking the little man back in. It has been QUITE the week, and I was so looking forward to a quiet weekend, a reunion with my book club, and visits from friends. Unfortunately, it’s been derailed by a fever and a cough. Luckily, his fever has already subsided and he’s been getting major antibiotics in hospital.

We have now been home for almost four weeks. Our monthaversary is this Friday, and we will celebrate Gavin’s many achievements since our return home.

He now has full-blown sooty eyelashes, pretty bushy brows, and has started to grow a sprinkling of hair on his head. (And oddly, on his forehead, but I’m willing to accept a little fuzz-face for the time being.) He now walks completely unaided and can easily stoop to pick things up and stand up again. We have been on two weekend trips to the family cottage and have (somehow) survived four three-hour car rides. He speaks more clearly and with more expression every day, packing new words into his vocabulary hourly. At weigh-in last week he topped the 14 kg mark for the first time. He is doing well with the oxygen he is on and has remained healthy. (Knocking furiously on wood) He has started toilet training! (That’s a whole other post.) He has started making his own platelets. We finally felt comfortable enough to take the side-rail off of his crib and converted it into a “big-boy bed.”

I have been badgering whoever reads this blog about platelets and blood lately. For those of you going, platewhats?, allow me to quickly nutshell what platelets are. They are odd little cells that circulate in our blood and are the Mr. Fix Its of the bloodstream. When we cut ourselves, platelets arrive on the scene to form a clot and stop the bleeding. When we otherwise injure ourselves, they form internal clots that appear as bruising on the surface of our skin. If we have too many platelets, we run the risk of forming dangerous blood clots, if we have too few, well, let’s just say that injuries should be avoided.