A bit of stuff, a bit of surgery

After returning from our (amazingly lovely) vacation, Samuel had a bunch of 18 month old follow-up appointments. Yes, 18 month old. He turned 18 months old. Wow.

We saw the dietician, the feeding OT, audiology, surgery, physiotherapy, the developmental OT, and ophthalmology. I learned a few things during these appointments. For instance, since Sam gained nearly a whole pound while on holidays, we are clearly meant to quit our jobs, move to Vancouver Island, and languish by the sea for the rest of our days. Clearly. 

I have also learned that butt scootching can be a highly effective means of transportation. Sam is walking assisted but, when he needs to motor independently, he can get around pretty much anywhere he needs to be using this backwards scoot method. When he needs to change direction, he pivots and goes. The only thing that foils his plan is if he backs himself into a corner where he can't pivot to get out. I respond to his calls of frustration immediately, of course. I do not pause to take a photo of his little stuck self. That would just be mean. Who would do that?! Sheesh.

"Dangit. I can't pivot. I can't back up. Somebody help me." 

You'll notice here toy basket carefully positioned on top of the furnace vent. That is because Sam's fave thing in the world is to lift the vent cover and throw all manner of things down the hole. This includes wooden blocks, plastic animals, thousands of dollars in Monopoly money, and my $200 running watch. Fortunately, the running watch was attached to the charger, which was attached by a long cord to the wall, so it was retrievable. And I have taken the hint that I'd better start running again if I want to keep my stuff.

The appointments are kind of exhausting as Sam is age-appropriately uncooperative. He doesn't want to cuddle with me on an exam table while grown-ups talk and he doesn't want to jump through people's hoops when he could be practice-walking up and down the halls. He fought HARD against the lovely audiologists putting little probe thingies in his ears to test his hearing. We gave up and they sent me home with some little ear probe thingies so that I could try to desensitize him for next time. As if. Sam will not wear a hat or sunglasses or let you help him with his spoon. There are precious few areas where he has some control and he has ideas about how these areas will go. After all the medical interventions he's had, if he wants to say "no thank you, you may not stick probe thingies in my ears" then I am loathe to force the issue.

As for the surgery part, Samuel is heading into the OR again on November 7. The ophthalmologist decided that this is the perfect time to fix his strabismus, which has been worsening steadily. The main issues associated with Samuel's ocular albinism are nystagmus (eyes roving back and forth), photophobia (difficulty processing light, which then obscures vision) and strabismus (eyes drifting inwards). Nystagmus and photophobia can be managed but not fixed; he will have some measure of those forever.

Strabismus, however, can be fixed with surgery to weaken the muscles that pull the eye inwards. The Eye Guy says that the outer eye muscles will then take over to pull the eye back outwards, and the brain will so appreciate the eyes facing forwards that it will lock them into place. The eyes start working together again and depth perception is restored. This is a 20-30 minute procedure and the ophthalmologist said this is a "meat and potatoes surgery" for him, which I am pretty sure means it's a simple thing that he does all the time, versus other possible quirky and/or frightening interpretations of "meat and potatoes surgery."  

All sounds pretty simple, right? No 12 hour life-threatening surgeries here. So I made my requisite all's-good jokes, asked my capable-mommy questions, and then I hightailed it out of Vision Clinic in the hopes that I could get to the parkade before the tears came. I don't really want my baby going back into surgery. It bites. But on top of that, eye surgery icks me out. It seems like you shouldn't mess with something that has its very own reflex to keep you from getting in there.

But this will help him to see better and it is part of him getting well. It will probably help him with skills like walking since he'll have the depth perception to determine what is a step and what is just a change in flooring. And it might even be the last surgery ever because, while Sam is in the OR for strabismus surgery, his Goddess-Surgeon is going to come in and fix his undescended testicle. And that is the last little Sam repair job left! How cool is it that these two surgeons are willing to work together (and that their booking people could figure out surgeon schedules and OR time) so that Sam only needs one anesthetic?! Very grateful. 

(Funny that eye surgery icks me out, but testicle surgery, not so much. Hmm. Feel free to ponder.)

So Samuel might just rock it, be extubated at the end of surgery, and come home that same day. But more likely, we will spend a night or so in hospital for respiratory monitoring. I don't know if this will be in ICU but I hope not. I love my ICU people more than I can ever say and am happy to visit, but our times spent there have been a lot about whether Sam is dying and I'm kind of done with that stuff, thank you very much. 

Yep. Done with the dying stuff. Gonna go feed my baby muffin and eggs now. I leave you with a few pictures of him from our vacation. 

Cruising around the coffee table on the deck. 

Sam, meet Pacific Ocean. Pacific Ocean, meet Sam. 

Sam scooting over to play with his favourite friend, creatively named "Pocket Door." 

A bit of normal

My little family of six is vacationing at the ocean. We drove for two days to get here, to be near the water, the rhythms of the tides as pulled by the moon, the salty air and slow pace. I have all the regular delight and gratitude at being able to have a holiday with my family.

I also have an extra dose of delight and gratitude for the "normal" that is represented by this trip. We have not had a family vacation the last two summers. Two years ago I was too sick with the early pregnancy to be any fun. Last year Sam was newly home from hospital, on oxygen and tube feeds and with a schedule full of appointments that kept us close to home. My boys have never complained about this, even once. They have been through a lot too and it was time for us to be able to get away, to recover a little from all that the last two years has brought us.

So here we are. We are hours and hours away from Samuel's hospital people. We did not bring oxygen or NG tubes or any medical equipment, just a couple of flats of his high-test formula. I did consult several of Samuel's folks before we left, making sure that he was okay to travel, that I remembered the protocols for managing his femoral blood clot, that I could look after his dietary and physiotherapy needs while we were away. I have a list of phone numbers and explanatory documents. The pediatrician printed off his growth charts for me in case we have to take him to hospital and they weigh him and freak out. I've counted his respiration rate much more often than I did at home. But otherwise, we are just doing this vacation thing. 

Boys with Buoys at low tide

Playing in the sand

Samuel is an awesome traveler. He complained very little during the long van ride and has slept well in his new digs. He has become extremely mobile during the past couple of days, to the point where we are saying, "has anyone seen Sam?!" and fanning out around our little house to see where he's hidden himself.

Just to be clear, it's not like we're ignoring Sam but he is quick with his new skills and he delights in tucking himself behind doors. He is creeping but not well and he is cruising but there is not enough furniture to get him everywhere he wants to be. So he uses a planful combination of rolling and bum scootching to get around. This is quite effective except for the fact that our skinny boy can't keep his pants up at the best of times so the backwards scootching motion does eventually relieve him of his trousers.

Heading for the exit (but will be pants-free by then).

Off to the beach now... 

One Year Ours

A year ago today, at exactly five months of age, Samuel was officially discharged from Alberta Children's Hospital. He came home. He became all ours after months of being part ours and part theirs. I was happy to share him with those lovely people at the hospital; they saved his life. But I was also happy to have him be all ours.

A couple of CDH babies in our midst have just come home - Clay and Jude - and Killian is [this] close. Going home after so many months is a breathtaking, amazing time. I remember feeling like it could not be real that we were walking out of the hospital with Sam and all his stuff. I had imagined that moment so many times. I had watched other families walking out of the hospital with their child and with bags and bags of things, stopping every few feet to take another photo of the route home. I had joked with nurses about making a run for it, how I would grab my baby and would need at least two of them to run down the hallway with us, pushing his IV pole and various other life-saving accessories.

Now he is home a whole year. Ours for a whole year. Seventeen months old. Eighteen pounds (if you hide a 3 ounce weight in his diaper). Since then, he learned to breathe on his own and to eat and to dance. He had two more surgeries. He grew 6 teeth and a head full of hair and he developed a giggle that rocks our world.

School's out and we're entering another summer with all four of our boys. Sam's rocky start has faded in ways I didn't think it ever could. He is ours.

Oh, and happy, happy Canada Day. Happy day.