Where have we been?

I've missed blogging. I have so much to write about. So much running through my head yet for much of the day I only have one hand available (breastfeeding, holding), one eye open and less brain power than I'm familiar with. Welcoming Grayson has been a huge adjustment. I don't think any parent can be prepared for the upheaval that a newborn brings, and we were no exception. Our life, once with order, routine and predictability, resembles a bunch of puzzle pieces which will fit together, but it's still too soon to see exactly how.

So I'll start with the most recent news and see how far I can get.

River had his spinal MRI last week. The results are that his spinal cord is not tethered (great news) but they did see a fluid collection around the thoracic portion of his cord, called syringohydromyelia. We'll have to see a neurosurgeon to find out if this could be causing his urinary symptoms, and whether it makes sense to do anything about it (presumably by draining the fluid). That appointment is scheduled for June 10th. In the meantime he is still having urinary retention and upsetting nighttime wakings which seem to be related to his bladder.

River's seizures are changing, improving I think. He has less of them each day but they seem to be more intense - more stiffening, no more laughing and more distressing for River (and us). He is finally at the full dose of Lamictal (50mg) - we had to go slowly because of the risk of rash which can be life threatening. He also has increased stomach sensitivity and sedation each time we make an increase which fortunately only lasts a day or two. The doc is recommending we continue increasing every 2 weeks until we get to 100mg daily. Since we've seen some improvement at 50mg, perhaps 100mg will be even more improvement. The epileptologist's goal is for him to only have a few seizures a week but I can't imagine him having these as he gets older - they are very scary.

He continues to work on his weekly therapies. Yesterday we got him positioned in the Kelty backpack which was wonderful. He's on top of the world when he's in the pack, ready for any outdoor adventure! We've also been having meetings to discuss his transition from early intervention to the school system which happens at 3 years old. He'll have different therapists and they'll either come to our home or meet him at preschool, yes preschool. It's a far off goal, but one that I can envision. We found what we think would be an appropriate classroom setting for him and the school system seems willing to provide him with the support he'll need (mainly 1-on-1 aides).

Grayson is six weeks old this week and probably weighs over 7 pounds by now. Last week he weighed 6-13 and had been gaining over an ounce each day. This is impressive considering it took him 3-4 weeks to get to his birth weight of 5-4. All this breastfeeding is for good reason!


River enjoying swinging outside while watching his tee tee toy suspended in front of him.