Gruelling day

Thursday 4th

A gruelling day at Children's after a difficult day for Reuben at UCLA school. It's going to take him a long time to settle in. Reuben has been covering his eye whilst watching his videos and whilst we suspected strabismus, lazy eye, this appears is an illusion based on the Asian fold to his right eye. It's rather crippling after October's eye test produced a "fantastic" vision test. We don't get to dine out for too long on the "fantastic" result.

The day went something like this:
9:00 Drive 30 mins on Freeway to school. Lots of traffic. We're late as always.
9:30-12 UCLA school. Yesterday Reuben cried when he spotted the classroom. Today he cried as soon as he saw the elevator. Reuben cries most of the way through school, especially as he sees Kristina sitting in the corner. The more he cries, the more he needs suctioning. Why is the carer carrying him everywhere? Why is she persisting with activities he's not interested in and keeping him in a chair he can't get out of? I want to make changes.
12-1 Drive to Santa Monica. Take the boys to the duck pond for some happy time for Reu and then switch cars with Jason, him taking Kristina and Callum back home. I was originally due to go home with Callum but it makes more sense for Jason to get some work done at home. So I take Reuben in the car by myself for the first time. 21 months old and I've never been in the car alone with him before. It's also the first time any of us have done the Children's thing by ourselves and I have to say, it's hard when there's 2 of you to share the drive, bolus feeds, running around, so one is tougher. And yet I enjoyed the time with Reuben and felt so immensely proud of him all day.
1:00 Drive 40 mins on Freeway to Children's
2:00 Beg Opthalmology to give Reuben an unscheduled eye test. Denied. Persisted. Denied. Persisted saying he'd recently had surgery and another trip back on Friday would be hard for all of us especially sincce Callum has to go in on Monday for yet another (5th) ultrasound re his cyst which could actually be a bowel duplication (not good). Told to come back at 4pm.
3:00 Hearing test on other side of the hospital. Hearing as before, about 10db assisted in left ear with bone conduction; without aids, a moderate-severe loss in left and a profound loss in his right.
3:45 Fit in a bolus feed hoping he doesn't throw up whilst on the way to Opthalmology.
4:00 Speed back to other side of hospital for eye test. 5pm still waiting. Haven't eaten today. Ask if I can come back as I had to eat in order to feel safe driving home. Speed with Reu over to other side of hospital. Have my 1st Mcdonalds hamburger in over 20 years. Wasn't missing much.
5:15 Eye test. Sad result Reuben likely needs glasses for shortsightedness but will have to wait for a proper test when his staff are there. Dr is more concerned about how glasses will work with his microtia (misshapen eyes) and nose. Suggests special glasses or contact lenses. Wow, for kids? Yes apparently so.
6:00 Visit Victoria, Justin & Moriah in the NICU. Feel humbled in the presence of a miracle that is Moriah. See Dr S, the one I once asked "Will he ever walk?" and he'd responded "I just don't know". Go chasing after him and re-introduce a pretty exhausted Reuben. He says he remembers me. I get Reuben out of the stroller and walk him in the NICU holding my hand. It's like a dream come to life.
6:30 Bolus feed Reuben
6:45 Leaving CHLA bump into a mother and toddler from our NICU days who recognises me. Another miracle.
7:00 45m drive home on Freeway.

A long day and it's been hard. I'm upset and deflated. I'm thinking of Victoria, Justin and Moriah and the journey they're still on in hospital. God I wish things could be easier. Sometimes the complexities of CHARGE hit you smack in the face, the cruelty of it all inflicted on one child. The Nelsons have enormous faith in this respect.