ROWAN BLACK

Updates for friends and family

May 1, 2023

It’s been a busy year since our last update. As Rowan approaches two years old, here’s the latest in his SLC13A5 Epilepsy journey. Seizures Rowan’s seizures have been all over the place for the past year, anywhere from one or two a month to a dozen in a single day. [...]

01
May

Updates

April 26

Home! With thanks, as always, to the fantastic team at McMaster [...]

April 23

A quick update on our stay. Rowan was extubated on Wednesday and was completely weaned [...]

April 19

Just in case anyone’s been fruitlessly refreshing this page for the past six months, I [...]

February 27

Rowan was the TESS Superhero of the Month. Read more about Rowan and the work [...]

October 29

A quick fall update: Yesterday we finally got to meet up with the McMaster genetics [...]

August 17

Home once again, with thanks as always to the McMaster medical team! [...]

August 16

I think I may have conditioned page visitors to expect daily posts when we’re in [...]

August 15

Since being discharged on July 9 the three of us have had a wonderful time [...]

July 9

Home… again! Thanks to again to all of you for your support of all types, [...]

July 8

As hoped, the EEG came off and the NG tube came out this morning. After [...]

July 7

A fairly quiet day in the pediatric ward. The EEG remains on for some continued [...]

July 6

The results of yesterdays MRI have come back and we got to see them compared [...]

July 5

Today’s MRI went well by all accounts, and we finally got a chance to talk [...]

July 4

Rowan turns one month old today! Only one confirmed seizure today, so the new doses [...]

July 3

The full respiratory monitoring system was removed from Rowan’s room today. In its place, his [...]

July 2

Today the respiratory team decided to give Rowan a trial run without any additional breathing [...]

July 1

Rowan had another dozen or so probable seizures overnight last night, so neurology came by [...]

June 30

Another day without meeting officially with the neurology and genealogy teams, and with the holiday [...]

June 29

Not a whole lot to report today. The genetics/neurology meeting never materialized, so we’re hoping [...]

June 28

Rowan’s EEG came off this morning so it’s that much less unwieldy to hold him [...]

June 27

Rowan took a field trip downstairs to radiology this afternoon to get a clear picture [...]

June 26

A fairly quiet day at the hospital. Rowan continues to spit up some of his [...]

June 25

Rowan had some trouble last evening and overnight with keeping down some of his medications [...]

June 24

After an uneventful night last night, Rowan greeted his day nurse this morning with an [...]

June 23

Another busy day for Rowan: the PICU team swapped out his CFM for an EEG, [...]

June 22

The Complicated Time – Chapter 2 Welcome back. After a wonderful, uncomplicated weekend at home, [...]

June 18

Home! Thanks to family and friends everywhere for their thoughts, vibes, prayers and support of [...]

June 17

A late update today after a busy day for Rowan including a hearing test and [...]

June 16

The CFM setup on Rowan’s head hasn’t really seemed to be helpful the last couple [...]

June 15

Rowan’s feeding tube has been removed, so the only extra things connected to him right [...]

June 14

Another fairly quiet day yesterday, mostly focused on Rowan learning how to feed in ways [...]

June 13

Today marks Rowan’s original expected delivery date, and as my Mom remarked this morning, “for [...]

June 12

Late morning yesterday Rowan’s breathing tube was removed and he’s completely breathing on his own. [...]

June 11

Yesterday’s MRI went very well by all accounts so now we wait for results. His [...]

June 10

With Rowan less sedated, all of his nutrients (now in the form of breast milk), [...]

June 9

We finally got official confirmation last night that there have been no seizures registered since [...]

June 8

Still no word on any seizures since ~6am Sunday. We’re hoping he gets in for [...]

June 7

The McMaster team performed a lumbar puncture to diagnose if the cause is a bacterial [...]

June 6

Rowan seems to be stabilized for now. There’s been no reported seizures since ~6am today [...]

June 5

Rowan’s been intubated as a precaution, as he will be heavily sedated on medication and [...]

Welcome Rowan!

Initially posted June 8, 2021 Welcome Rowan! On Friday, June 4 at 1:26pm, we were [...]