Friday, February 6, 2009

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.


hannah m said...

Oh, friend, my heart aches for you and Sweet Reuben. I am so sad to know Reu is unhappy at school. Your title says it all: a grueling day, indeed.

The idea of Reuben walking through the NICU with you, however, warms my heart so very much.

All loving prayers your way, and on Monday especially for Callum's cyst (is it a checkup or is he having surgery?).

Lots of love.

Kristi said...

C -
I mentioned in a previous comment, but it warrants mentioning again here... such WONDERFUL news about Reuben walking the halls of the PICU holding your hand... what a capper to an otherwise very difficult day.

Glasses: check out frames there may work for Reu. They are soft, flexible and very safe for little ones. Gracie has the largest pair of them if you'd like to look at the fit for Reuben. (They are pink... otherwise I'd just give them to you to put in lenses for him!). She's outgrown them and due to peripheral loss, she's not a fan of frames at all at this point. She still sees fairly well without them, despite being nearsighted.

Contacts: WOW... at this age and with colobomas...? Personally, I'd question that one... does he blink both eyes?

Covering his eye (or eyes?): Does the Opth. think it's due to being nearsighted? Could be behavioral, too. He might be choosing to "shut out" the world a bit - maybe frustrated, tired, or in pain/discomfort? Just a thought. Or possibly development of a bit of light sensitivity? Different kinds of lighting/lights bother Gracie depending on a myriad of things. Sometimes natural sunlight bothers her, other times it's the artificial lights or the glare of the TV.(And other times she'll shine a flashlight directly into her eye!). Covering eyes is a commonality in kiddos with CHARGE. Just all food for thought.

School: So sorry. This is a tough area... you ("the team" - not just you!) want to challenge him because he's so capable. Maybe, with all he deals with just to "be in his skin," this is a bit much right now. CHARGE is so complex and it's mind boggling what our kiddos deal with just to "be." You know he learns well in one-on-one situations... maybe that's the road to take for a bit longer if he doesn't start relaxing a bit more at school. I would be so sad to think he'd lose interest because of all the anxiety he is having in the new environment. (Is Kristina not allowed to be near him unless he needs suctioning? Are you not allowed in the room either? Seems to me like a lot of separation for a very young child with multiple challenges.)

Sorry so long! Thought it best to share thoughts where others might be able to offer multiple/differing opinions on my take... we all learn so much from each other! :-)


Ditto to Hannah's question about Callum's appointment Monday

Sara said...

Hugs to you all. xxxx

skeybunny said...


How near-sighted does the Dr. think Reuben is? If you are intersted in the frame Kristi is talking about, I have a navy blue one I would give to Reuben--it's practically brand new. When I was in opto school, we always prescribed the bambini frames for babies. I had better luck with a standard frame fitted with cable temples for Evan (the babmini frames are all one piece I had a difficult time adjusting for a wide bridge and asymmetric ears). You've probably noticed Evan never has glasses on in his pictures...sadly, we had to pick the battle between hearing aids and glasses (and the hearing aids won).


Eva Nichole said...

Wow that is quit and day and I still have days like that, it can be hard but hang in there.
As for school you should voice your feelings, I am so glad we have the school we have for Eva now to just get more therapy for her outside of school.
Good luck hun!
Crystal and Eva