Tuesday, August 25, 2009


Neurology finally called yesterday. They want us to go this Friday at 8:45. The only problem with that is that Friday is my first day at work and I start 10 am, and the appointment supposedly takes an hour. Apparently it's the first appointment of the day so the doctor shouldn't be late, but if he is I might be late for my first day at work. I didn't realize the scheduling conflict until after I got off the phone with them. I called them back and they said they don't have a lot of options for new patients so it's a take it or leave it until many months later kind of thing. This is one of the appointments I really want to be there for. He has like 4 appointments in the first week of September. Appointments that I had to reschedule several times already and am still going to miss because I start training at work and can't miss it.

Monday Aug 31st is his hearing test (something I'm not entirely convinced he needs.) Sept 1st is endocrinology. Sept. 4th is the newborn follow up clinic and his monthly with the NP. And now he has neurology this Friday. Sept 24th is his opthamology appointment. That one I am excited for, I can't wait to find out a bit more about his useable vision. His CNIB OT came yesterday and I'll tell you more about that in a minute. I'm not quite done with the whole neurology thing yet.

Honestly I am kind of afraid of the Neurology one. First of all I have no clue what they will be doing or how they plan to find what they will be looking for. I'm 99% sure it has to do with the septo-optic dysplasia or de Morsier's syndrome. In kids with de Morsier's often the corpus callosum or septum pellucidum is missing. Which can mean learning disabilities or developmental delays (and also the dreaded R word). I imagine that is what they will try to determine, but I don't know how exactly they go about this, since no MRI has been scheduled that I know of. I'm guessing maybe they look at him and then decide if he needs the MRI? I don't know. Now I have two things to be extremely nervous about on Friday, Neurology and a new job (and possibly being late for said new job). Aren't I a lucky girl?

Back to something less panic inducing. Skyler had his visit with his CNIB vision specialist yesterday who I love love love. She brought us so much Braille stuff! Chuck spoke to her at the picnic and mentioned that I was learning Braille on my own so when she came over yesterday she had 3 bags of stuff for us. Including a parents kit about Braille, a box of alphabet fridge magnets with Braille on them, and two lovely brand new board books with Braille for us to keep. One of them is the Dr. Seuss book Mr Brown Can Moo, Can You? And we filled out a form for Seedlings where they send you another free Braille book in the mail. I can't wait for them to arrive.

Unfortunately someone could not be convinced to take his usual nap before she got here, so he was rather tired and somewhat cranky for the visit. But he did really well all the same, and he still smiled a lot for her. We all noticed a huge improvement in his tracking skills. He wasn't hesitating to follow the objects from one side to the other and back and up and down. His up wasn't perfect but she said it was really good and that tracking up is the hardest so he did really well. He's focusing nicely and she checked all his ranges of motion with everything and his tummy time and said that he's going to do great at the developmental clinic. (Chuck will be taking him and meeting the CNIB OT there, I have to miss it.)

I can't wait for September to just come and go honestly. There are just too many appointments and too many new things to adjust to, Chuck and I are both going back to work, and we'll have to balance his meds & appointments and figure out our schedules and make new routines. I just want that to be done with already. I'd love to fast forward. We also have to take him for blood work today, which we just keep putting off, and really it's Chuck that doesn't want to go. I think he is worried about Skyler having his blood taken. He was perfect last time, but I think this time he is much more aware of what's going on and wants to move around a lot so I'm not sure he will behave as well as last time.

I plan on writing a post about labels as soon as I get a moment to sit down and collect my thoughts. So hopefully that is coming soon. And here is hoping that the neurology appointment & me starting work both go well on Friday.


Stacie said...

Wow, you really have a lot going on. Neurology is a scary thing, I know, first hand.

Can you call your new employer and explain to them that you may be late and the reason, if you haven't already?

Good luck at your first day on Friday. I hope everything works out well.

Mrs. Spit said...

Azera, I didn't get a chance to reply earlier, and I can't email you.

It's not sometimes right to speak up if you are being abused, it is ALWAYS right. That's not bashing your partner, that's not whinging, that's getting help to get out. Totally different ball game.

It's cowardly to insult your husband to your friends, it takes a great deal of courage to stand up and admit you are being hurt and you need help.

Brava for doing it! I'm so glad that Skylar has such a tough and brave mum!

LuckyOnce said...

I'm in agreement with Stacie. I would call your employer and explain the situation and say you don't expect to be late, but want to do them the courtesy of letting them know in case you are. Then you won't be sitting the appointment sweating and hoping you won't be late!

niobe said...

Hoping Friday goes well for everyone.